I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: cariad on January 11, 2014, 06:33:09 AM
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I have been sick for so long. Last two days have been the worst. I go from feeling fine to horrible chills, shaking all over, and pain everywhere. I had the flu over the Christmas week, thought I shook that off, but two days ago this all started. My skin did not feel hot at all, so I was gobsmacked when I finally took my temperature and it said 103.9. I took 2 ibuprofen and spent the evening waiting for the fever to break. It did, after several hours. Then it started again the next afternoon, took ibuprofen, the first did nothing, took 2 more about 6 hours later and spent one of the most agonizing nights of my life trying to sleep with the pain and uncontrollable shaking.
I have been on this merry-go-round quite a few times this past year with come and go fevers, but now it refuses to go. I took two ibuprofen this morning the moment my temperature hit 99 and I started to feel chilled. It's been four hours and it's now 100.3 and I cannot stop the shivering. I also am dizzy and occasionally nauseous. I am of course afraid to overdo any of these painkillers. Is there such a thing as an ibuprofen-resistant fever? :sos; ???
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The answer is you are just attempting to mask the fever with anti-pyretic agents like Ibuprofen.
Are you on dialysis or do you have a transplant? If you have had a transplant ibuprofen can damage kidneys. Also if you are on anti rejection meds you need to call your team and let them know what is going on. This could be a rejection episode. A fever that goes on more tthan 3 or 4 days isnt something to play around with. Something is going on.
If you are a dialysis patient I would worry about an infection somewhere from acess issues.
Bottom line is CALL YOUR DOCTOR, or at least the nurses in your team.
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Call the transplant center if you had transplant.
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I really hope you get this sorted out cariad! I think it's definitely worth a call to your transplant center as you are such a special case with your transplants and not being on any anti-rejection meds. Good luck and keep us updated!
:cuddle;
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Oh, dear. This is REALLY worrisome. Do call the doctor. I know you are a tough cookie, but this could be serious and I DO NOT want anything bad to happen to you.
:grouphug;
Please, please take care of yourself.
Aleta
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With a fever that high you really need to call your doctor. Please. You need different medicine if you feel that awful. You could have any kind of virus but you don't want it to get worse. If your fever goes back up above 102 you need to go to the ER. Be safe. Get help.
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Hi Cariad,
Poor girl. :(
A fever is actually a signal that an immune system is working well, fighting a bacterial or viral illness, and this response occurs because it improves your body's ability to get rid of the bug, so a fever is a positive sign. It is evidence that you have an active immune system. Fever does not harm your brain or your body, although it does increase your need for fluids. Fevers generally do not need to be treated with medication unless you are uncomfortable (and in this case, it sounds like you are.) The fever may be important in helping you fight the infection.
In many cases, lowering a fever is not only unnecessary, it could actually hamper your recovery process, prolonging the illness rather than resolving it more quickly.
Dehydration is a big concern for someone like you who has a transplant. Keep up the fluids and rest.
Since you're not on immunosuppression - you'll hopefully do well.
But I agree about seeing a doctor, or at the very least call them and give them your symptoms/situation. Let them decide if you should come in.
I hope you're better soon!
:cuddle; :cuddle; :cuddle;
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I'm concerned that this mystery fever has lasted for so long and that it has popped up on more than one occasion. I find this to be very odd. ???
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Dear Cariad, have you been to the hospital yet?
Love,Cas
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I was concerned that you should be calling the tx team and getting yourself checked out, but I forgot that you weren't on any nasty meds (thank you karol for the reminder!) but still yeah it's a worry for sure, and I at least would be talking to the tx team (or whoever you see now since you're not near the original team of course!! :) ) just in case something more serious is going on with ramifications for your kidney.
fingers crossed!!
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How are you now? Hope you are feeling better?
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Oh, bloody hell. I guess I sort of took most of your advice. Let’s see, my last post was written Saturday 11 January at 2PM local time. I have little memory of the rest of the day and absolutely none from the following 4 days.
Had I been coherent and been able to describe my developing symptoms, I am fairly certain that anyone who's ever been inside a doctor's office could have diagnosed me in moments. So, fingers on buzzers, IHD, as I fill in the details....
I believe I went to sleep on Saturday without any real drama. The rest is second (or maybe third) hand information as I told it to Gwyn and various medical personal, and Gwyn related it back to me. I woke up very early on Sunday 12 January with a splitting headache and instantly told Gwyn to get me an ambulance. (Like most people who have a lifetime of being in and out of hospital, if you go straight to demanding an ambulance, your partner immediately snaps into action because you never ever say this.) He called NHS Direct, got a bit frustrated with the woman who was asking the same questions a hundred different ways, but she did eventually send an ambulance. They came upstairs, said they could send a doctor round or take me to A&E less than a mile away, then stated bluntly that they would strongly suggest I choose A&E. I guess I had to walk down the stairs as our stairwell is too narrow for the stretcher, but I made it. Gwyn stayed behind to wake our older son and explain the situation and make sure he could handle being left with his younger brother for a few hours.
I woke up approximately four days later with a stiff neck (hint) and enormous pain from exposure to fluorescent lights (double hint). I had no idea where I was (did not stop them asking me) I had forgot my own name and after hearing it a few times had a hard time believing I had gone through life with it as it just didn’t sound right. (Still sort of doesn’t, worryingly.) Gwyn tells me that they knocked me out with painkiller and antibiotic (Ah, you’ve all buzzed in now) and he said that if it weren’t for a monitor they had me on, he would have thought I had passed away. Yes, it was my old nemesis meningitis, though this time the potentially deadly bacterial variety. (Just noticed that you can almost get the word nemesis out of ‘meningitis’!)
Meanwhile, I am hallucinating. This is the difficult part for me as I have had a hard time accepting that none of this happened. I said to my mother that if I had had hallucinations about flying kangaroos or something I would have dismissed it by now. I am convinced that I was awake, and this same hallucination went on for days. The people on my right side were getting more and more distorted, and I believed this was somehow a countdown to my death. Every so often a bell would ring, a woman would pick up the phone and scream at the entire room that this base I needed to go to in order to get specific treatment for my condition would only accept me for a few more days, I had to pay for this, and I had to get myself there. I couldn’t just call them because I had waited too long and so they would only see me in person. Then she finally announced that they were closing for the next 36 hours and it was the last time I saw her. Did she even exist? Gwyn tells me there was only one woman screaming there, and she was tearing two doctors apart for not giving me some treatment or other, which they eventually gave me. I spent an entire day trying to determine how I was going to get myself to this supposed off-site location.
I spoke with my parents a couple nights ago and they say I had been whispering to Gwyn since that first Tuesday morning that I needed to get out of there or I was going to die. I have been trying to think where this is all coming from and I have to suspect it is a lifetime of going to American hospitals that instigated it. With a few quite notable exceptions, American hospitals and clinics have been condescending, callous, money-obsessive, and inexcusably arrogant. At least two in my personal experience have been dangerously incompetent. I guess my mind could not accept the idea that I would get this wonderful, life-saving treatment for free, so all my nightmares came out at once.
Gwyn says that I all I said to him on Tuesday was “what?” which led them to suspect that I had lost my hearing (possible side-effect of bacterial meningitis.) On Wednesday I was wittering on to him about not getting treatment there and needing to find this base I had to go to, so at least the hearing loss was ruled out. I had such limited vocabulary that I tried over and over to ask the doctors about this and they would end up just smiling and telling me that they would check on me later. Surely they are aware what this does to your brain function?
Oh, and the aggravation I gave the staff. A sweet, youngish doctor came in to do another blood draw (excuse me, doctors, blood test!) and told me that I fought him when he first tried to stick a needle in my vein. :embarassed: I had these two boxing glove-type-things on when I regained consciousness because as of that first Tuesday I started pulling lines and tubes and anything they tried to put in straight back out. The hell? It’s hard to believe it’s even possible to have such a personality change. Once I was back in the becoming-more-sane world, I managed to get the gloves off and eventually wore out the nurse who was trying to stop me doing it. Yes, I do remember pulling a tube out of my nose once I had a tenuous sense of reality, but that was not aggressive, it was more curiosity about ‘what’s this on my face?’ I still couldn’t really think straight or speak coherently.
Wednesday, Gwyn asked me if I wanted him to bring the iPad in, to which I responded “What’s an iPad?” It was rather grim for a while there. Gwyn, normally so private with our information, turned into the town crier. As I would start to remember the responsibilities of daily life, I would ask him to warn people that we might not be able to fulfill various obligations. Inevitably the answer would be “Oh, I told them.” Them being: his work, my volunteer place, my/his/our friends, his relatives, both of the boys’ schools, the football club, the rugby club, my surgeon in Chicago and my parents.
And it doesn’t stop there. I am so impressed with Gwyn, what he managed to achieve. He has been doing every last thing since that first Sunday this all happened. Aidan had a birthday party to attend that initial Sunday – the day I went in to hospital – and he still managed to wrap the present and get him there and back, and that is the tip of the iceberg.
Typical of us, we don’t do one crisis at a time, so the poor man is so knackered and so traumatized. On that first Thursday I was moved out of ICU to a ward with 5 other women. It took me a few days to settle in and get out of major pain and into a routine. My parents started to ring me as soon as they heard I could speak again. On the second Tuesday I was telling my mother that this hospital seemed great, however I knew it failed one family tragically as a child in my son’s year at school died at the beginning of the school year after that particular A&E turned the little girl away with severe tonsillitis. My mother then asks “Are you going to the funeral” I got quite confused and said “The funeral was months ago…. No, we didn’t attend.” And she said “No, I meant Gwyn’s mam, her funeral.” I replied “Mother, what are you talking about? Elsie’s alive!” and suddenly Gwyn grabbed the phone out of my hand and went to a corner to whisper to my mother. And I knew. It turns out that Gwyn’s mother had passed away and he had just been trying to find the best way to tell me. He had to go to the funeral by himself. Over 14 years together and on one of the rare days he could use my support I was completely absent. I don’t know how to forgive myself.
Gwyn told the boys about his mam before he told me, which is understandable I suppose. The trouble is that he speaks only Welsh to the boys and so after he told me about the funeral he also recounted how the boys reacted. Aidan, generally terribly sophisticated, was sad for him and the situation and wanted to know how he could help. Poor little Dyl. Gwyn said “He just broke down, collapsed on the floor crying. He said, ‘Oh, no! I’m never going to get over this.’” Then Gwyn just kept repeating to me “I said ‘nain’. I know I said ‘nain’” (Nain, pronounced ‘nine’ is Welsh for grandmother.) In other words, Dyl misunderstood somehow and thought it was me. His Welsh has never been as strong as Aidan’s and I can understand why his thoughts were in that place at the time. My mother-in-law had severe Alzheimers for the last few years, and Dyl only met her once, at a Welsh hospital, when he was four. But you never know with him, he’s one of those ‘still waters run deep’ children.
I was finally discharged this Tuesday, after the doctor hit what was possibly the last viable vein I had. My creatinine of course fell to the floor (45 or about .5), but I am told in those circumstances when one hardly gets out of bed, there really isn’t a too low. That doctor said the only concern was that my calcium was slightly elevated, but he said it was so slight that it was probably nothing. They actually communicated with my surgeon in Chicago (egos tend to get in the way there, and they are not coming from America when my surgeon is involved) and because I am allergic or ‘highly sensitive’ to most if not all antibiotics, I thought they had agreed that I should not take a prophylactic course of antiobiotics and instead just get another Pneumovax vaccine. Then I get home, immediately take myself off codeine as that drug and I do not get along, no longer felt I should take the anti-sickness so that’s gone too, and am trying to get by with just caffeine and paracetamol. Gwyn then emailed my surgeon with my current symptoms: bit of nausea, head and neck ache, and dizzy spells, which from my initial post I see I started off with. My surgeon writes back saying to call or email any time, he is going to forward my info to an infectious disease specialist in London, oh, and he hopes they have me on a follow-up course of antibiotic to stop the meningitis coming back. Say what? I do not want to go on an antibiotic. Within 3 days I will be curled up in bed lying very still so as not to upchuck. I do vomit frequently on antibiotic, thus eliminating the benefit of the drug, but it’s almost worse when I don’t throw-up because then I get no relief and just have to cope with the debilitating nausea. I am certain that all of those English doctors believed when I was discharged that they did not have to think up a suitable antibiotic for me. There was palpable relief in the room.
And then there is the symptom that I didn’t mention, and please don’t get shouty with me, I know! Call NHS Direct, tell my surgeon, tell the whole block or else I shall die! I have pain around/over my heart. It is more like a constant discomfort, closest thing I can relate it to is hitting your elbow against something and the dull, weird pain that follows. Last year I called NHS Direct, cannot remember why, I was honest with them about getting these pains and the girl on the other end literally said “Right, I’m sending an ambulance”. It took ten more minutes and a supervisor to talk her down. At this moment I am sure lots of IHDers can relate to the idea that I will well and truly have a complete mental collapse if I have to go into hospital again.
And now my terribly long post is going to end like this, without a real conclusion or point: Once again my life has been shattered. For the fourth time in less than 7 years, I feel as if I need to start rebuilding my health from scratch. I am wracked with guilt at what I have done to my children and my husband. When I had viral meningitis in late 2007 I remember how dark my thoughts turned, how I became preoccupied with the Phil Specter trial and the suicide of Lord Sutch 8 years prior, the latter an especially random choice in retrospect. I couldn’t sleep, but I couldn’t do anything useful. I would sit at the table after Gwyn had worked all day and then cooked for all of us, and I would cry because I didn’t want to eat. I couldn’t walk more than a block or two. It triggered my last hurrah with anorexia when I heard I was 85 pounds and decided I needed to lose more. In my life experience, if you are not in hospital, you’re not sick, so I was in a constant state of panic that I was never going to get past this because look, I am not in hospital! Yet I still could not walk nor eat nor stop obsessing for months.
This time round is better, at least I can say that. I can only walk for a few minutes a day, but that is actually an improvement over last time. But all I want to do is constantly warn my kids and Gwyn to be careful, don't do this, don't go there, don’t risk that. I am compulsively telling them that I love them. All these years, all these illnesses, the clinical trial, and for what? It just keeps happening and I don’t seem to be able to get on with life. I never viewed myself as ill before the trial, and for the first time in memory I look back and think ‘I have five siblings and this hasn’t been happening to anyone else. Wow. It turns out, I’m the sick one.’
I guess I do have one final question: Has anyone here had meningitis, viral or bacterial, or possibly someone like me who’s been unlucky enough to have both?
I do want to thank everyone for their concern and support. :thx;
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Cariad,
I had encephalitis as a child (major hallucinations) and I had Lyme meningitis on and off during that year that my Lyme disease was at its worst. I lived in a cave (dark and quiet) for the months that it was the worst. The sad thing for me is that I'm off the IV antibiotics, but on three orals, I'm on the maximum pain killer shy of narcotics and the headaches are creeping back up. Although I DON'T want to go back on the IV antibiotic, I will do ANYTHING to keep from experiencing the meningitis again.
Your saga sounds awful. I'm fortunate not to be able to remember the worst of the Lyme meningitis. Definite change in personality. One cannot tolerate that level of pain without its having an effect. Plus the pressure on your brain causes personality changes.
My neurologist put me on an antihistamine (which I have started taking again), to reduce the inflammation around the brain. That was completely new to my Lyme doctor, but it REALLY helps with the pain! That med is cyproheptatdine.
I'm rooting for you. You will pull through!
Aleta
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Oh my God!!! I don't even know what to say. Have you thought about writing a book? God bless you and I hope you get infinitely better and soon!!! :cuddle;
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:grouphug; :grouphug; :grouphug;
Cariad I'm in shock at this ordeal you, Gwyn and the boys have been weathering. I have thankfully had no experience with meningitis and wish that you had not either. Please know how much love and support I'm sending through cyberspace and also how often and how fondly I think of you both since the Vegas gathering. Please be fully well soon.
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Your meningitis experience sounds horrid. I am so sorry. You have nothing to feel guilty about with your family. You were sick. I'm sure they're glad you're doing better. Normally your husband would have wanted you at the funeral but he wanted you to get treatment. Just give them your love now. I have never had meningitis but I have had a bad encephalitis with seizures and hallucinations. I am sort of prone to hallucinations. They suck. I thought the specks of paint on the wall were bugs and the pictures of therapy dogs were attacking me. I think my brain is permanently damaged.
I hope you do follow up with your doctor(s). Find out about the antibiotics and the strange chest feeling. Get lots of rest and good food to get better.
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Oh cariad, I am so so sorry that this has happened. I had a terrible feeling that there was something not quite right; this business of being febrile for so long just didn't sit well with me.
Knowing your history, I have some small understanding of the emotional toll this must have taken. I understand that you feel frustrated that you have not been able to get on with your life, but if you close your eyes and take a step back, I think you may find that you have indeed moved forward. Your life has changed dramatically in that you have moved across the Great Pond and have started a new life with your family. That's a pretty good way of getting on with your life! And let's face it, when you have two young boys, they virtually DRAG you forward. It would be IMPOSSIBLE for you NOT to move on with your life with those two around! ;D
I'm also very sorry to hear about Gwyn's mum. I'm sure he would have appreciated it if you could have been with him, but he had his sons, and his wife needed care, and that's just the way life is. It is not your fault that you were ill; I'm sure you would have wished otherwise.
I've never had meningitis, so I have to wonder if having it once makes one predisposed to having it again (even if the agent causing it is different in nature). Did the bacterial variety feel any different than the viral variety?
I hope you make a complete recovery very soon. If I can be of any help, please do let me know. Take care.
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Wow, cariad. Sending you all oodles of *huggles*. So much to go through in such a small amount of time. Poor little Dyl ... bless him. I hope your recovery is speedy.
:grouphug;
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So... are you out of the woods yet? I think maybe not yet? You are back to the symptoms you started with, less fever I guess, but with an added extra bit of chest pain. Big big love coming at you from down here. My friend had viral meningitis late last year, her virus was chicken pox. And I have a friend who had a version of meningitis which affected his memory and thinking, for a very long time. We took to meeting in bars and playing word games using scrabble pieces, to improve his vocabulary again. He's in London now, I think, so I haven't heard from him in years. That's all I know about meningitis.
Please don't do the thing where, because you are so very very over hospitals, you put up with mad symptoms for ages in order not to get that plastic bracelet on your arm again. I should think you need to remain on the radar with your doctors and stuff, so that they can sort out, you know, the heart thing, and the headaches might be fixable, maybe. And the antibiotics in order not to get a relapse, they're working on that, to find cariad friendly antibiotics? And consulting with your transplant team, one wonders, so that they don't put you on something that stuffs up the kidney situation...? Sorry about asking all these annoying 'go back to the doctor' kind of questions. I guess its the opposite of what you would like.
I wish I could fix you up Cariad, you're the best. And that fellah of yours is GOLD. I don't blame you for loving your family round about now.
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I'm sorry Cariad what a nightmare . I've had encephalitis several times, And hydrocephalus every few years. I'm afraid it sounds like your experience. It's awful. But you will get better. (I would keep'n eye on you WBC though, cos those symptoms, and just in case.... It's just a blood test) I'm very sorry to hear about your mother in law.
Lots of love, and strength for you, and your family
:grouphug;
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Wow. So many people took the time to read that last post of mine. Thank you!
I had encephalitis as a child (major hallucinations) and I had Lyme meningitis on and off during that year that my Lyme disease was at its worst. I lived in a cave (dark and quiet) for the months that it was the worst. The sad thing for me is that I'm off the IV antibiotics, but on three orals, I'm on the maximum pain killer shy of narcotics and the headaches are creeping back up. Although I DON'T want to go back on the IV antibiotic, I will do ANYTHING to keep from experiencing the meningitis again.
Oh, Aleta. I just had no idea this was still a battle for you. You're approaching two years with this, aren't you. I don't know how you keep up the fight (and retain the drive to want to help others on top of that) but I have to believe you of all people will get there in the end. I just hope it's soon.
My neurologist put me on an antihistamine (which I have started taking again), to reduce the inflammation around the brain. That was completely new to my Lyme doctor, but it REALLY helps with the pain! That med is cyproheptatdine.
Thank you for that suggestion! This morning I woke up for the first time with no head or neck pain (touch wood), although the dizzy spells are coming on in force. It is always a relief to know that there are still options to try.
You have been such a role model for me on this site in the past with your kindness and your calm determination, and now you will be going forward. Thank you! :cuddle;
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Oh my God!!! I don't even know what to say. Have you thought about writing a book? God bless you and I hope you get infinitely better and soon!!! :cuddle;
Jean, you are a gem! Thanks for the support!
(I'll keep the book in mind, though many would argue that I've already written one in this thread. :rofl;)
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:grouphug; :grouphug; :grouphug;
Cariad I'm in shock at this ordeal you, Gwyn and the boys have been weathering. I have thankfully had no experience with meningitis and wish that you had not either. Please know how much love and support I'm sending through cyberspace and also how often and how fondly I think of you both since the Vegas gathering. Please be fully well soon.
Ah, monrein, I too frequently think back on the Vegas gathering with a smile or a laugh. Those wonderful stories from your life, what a fearless, no-nonsense child you were, and how that made you the ferociously intelligent, outspoken yet flawlessly polite woman you are today - I draw inspiration from you more often than you could know. Many thanks to you, darling! And may you never jump on the meningitis bandwagon! You're missing nothing by skipping this particular experience. ;) :cuddle;
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Your meningitis experience sounds horrid. I am so sorry. You have nothing to feel guilty about with your family. You were sick. I'm sure they're glad you're doing better. Normally your husband would have wanted you at the funeral but he wanted you to get treatment. Just give them your love now. I have never had meningitis but I have had a bad encephalitis with seizures and hallucinations. I am sort of prone to hallucinations. They suck. I thought the specks of paint on the wall were bugs and the pictures of therapy dogs were attacking me. I think my brain is permanently damaged.
Jeannea, thank you for responding and for sharing your experiences with me. I have no idea what the difference between encephalitis and meningitis is, and don't really have the energy to look it up, but they sound similar and similarly nightmarish. I am not prone to hallucinations, and trust me to have semi-plausible ones to make it even more confusing. Still, I get rattled easily by weird, eerie images, so from my perspective I got off much easier than you did. :cuddle;
Thanks also for the reassurance about my family. I find I carry so much guilt for having to take a month off from life every 18 months or so. A neighbour said the most brilliant thing to me yesterday when I took my first walk round the block: "You look well. That's the worst time, because you try to do too much." She is a young woman (maybe early to mid 30s?) who is about to restart treatment for breast cancer, so she's a member of the chronically ill club as well.
With both bouts of meningitis I have found that it is much more difficult to remember words. However, I did find that it kept gradually improving, until the next setback of course. I don't know if my brain damage could be called permanent, but I have to say that you strike me as one of the smartest members on IHD which leads me to believe that any permanent damage you may have sustained must be a huge frustration for you, but virtually unnoticeable to the people around you. :grouphug;
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Oh cariad, I am so so sorry that this has happened. I had a terrible feeling that there was something not quite right; this business of being febrile for so long just didn't sit well with me.
Knowing your history, I have some small understanding of the emotional toll this must have taken. I understand that you feel frustrated that you have not been able to get on with your life, but if you close your eyes and take a step back, I think you may find that you have indeed moved forward. Your life has changed dramatically in that you have moved across the Great Pond and have started a new life with your family. That's a pretty good way of getting on with your life! And let's face it, when you have two young boys, they virtually DRAG you forward. It would be IMPOSSIBLE for you NOT to move on with your life with those two around! ;D
I'm also very sorry to hear about Gwyn's mum. I'm sure he would have appreciated it if you could have been with him, but he had his sons, and his wife needed care, and that's just the way life is. It is not your fault that you were ill; I'm sure you would have wished otherwise.
I've never had meningitis, so I have to wonder if having it once makes one predisposed to having it again (even if the agent causing it is different in nature). Did the bacterial variety feel any different than the viral variety?
I hope you make a complete recovery very soon. If I can be of any help, please do let me know. Take care.
Hi MM :waving;
The viral is supposedly not deadly but it sure felt more deadly than the bacterial. I had coxsackie (sp?) that I contracted from Dylan when he had Hand Foot and Mouth disease as a baby. That was a nightmare, from just a pain perspective I would say the viral was worse. No hallucinations but my system did not even have the decency to shut down like it did with the bacterial. The headache from the viral was beyond description. They gave me powerful opioids (Dialaudid?) that left me with a whole other set of problems, the worst being a total inability to eat. The headache from the bacterial (pneumococcal) was awful but controllable with paracetamol and codeine, and now seems to be controllable with just paracetamol and endless cups/glasses of hot and iced tea. With both conditions I threw up every day in hospital. :(
Thanks for the reassuring words about Gwyn and the boys. I try to picture Gwyn and my roles being reversed, and I just don't think I could do it. He hasn't been feeling all that great the past 3 weeks - I don't think anyone we know has - and yet I'm the one who gets to lie down whenever I need to or skip any event on the horizon. :embarassed:
You're absolutely right about the boys driving this merry band forward. Last term was a mess for so many different reasons, both kids adjusting to different schools and stressed out about making friends, we spent two months in a holiday let whilst finalizing the house purchase, we seemed to just be caught in a centrifuge with no progress, and everything the kids tried out for they did not get. Not little things, either, but disturbing things. (Aidan didn't make his school football team??!!) This term they are fully settled in and the opportunities coming at both of them are threatening to overwhelm us. We may finally, at long last, reach a point of stability where we stay in the same town indefinitely and the kids can really form deep friendships over the coming years and the push forward accelerates.
I think it's a combination of feeling improved this morning, having a bit of time to reflect, and support like yours that can allow me to find the positives even in Gwyn going to the funeral by himself. When he's around his relatives he prefers to speak Welsh, I know he does, so not having me or the kids there, needing to translate constantly, probably freed him to grieve. And as terrible as it sounds, I'm sure there was a touch of relief when she passed away. We thankfully saw her only 3 weeks or so before she died, and she seemed happy enough in herself, but she didn't talk nor do much but stare at the people in the room as if she knew they had met before but she couldn't quite place them. Absolutely brutal for Gwyn and his brothers.
I'm wittering on now. You've already helped just by reading that post-zilla of mine and crafting such a thoughtful reply. Cheers for that! :beer1;
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Cariad,
Regarding the loss of words (it is such a frustrating experience!), I am almost fully recovered from that. I can tell the difference between the "normal" can't-think-of-a-word circumstance and the mental blank. I made the analogy of opening a dictionary to look up a word and all the pages were blank.
My friends often say, "Aleta is back," these days. I mostly just kept my mouth shut around others, because in the middle of sentences my brain would shut down. Soooooo frustrating and I felt like an imbecile. Because I was sitting at home in the dark for so long during the worst of it, I practiced saying, "I can't talk," for when the phone would ring. Being asked a question was the worst. It would feel like fireworks going off in my brain.
I could still manage typing, but it would take about a half hour to compose a paragraph. Recipients wouldn't see that, though, so I could maintain a semblance of normalcy. I could also read (though y comprehension was pretty shoddy). For a long time my only duty at school was reading to the kids. I would "hide" in the quietest part of the school tending to bookwork (at a snail's pace) and emerge when it was time to read. the kids hardly realized how sick I was!
I'm back to working 10 hours a day, and mostly fluent again. You will get there.
:grouphug;
Aleta
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Hi cariad ..... I hope this post finds you improving and getting better every day. We all can certainly understand your sadness and frustration with your health setback. Things like that are such a reminder of how fragile we all are. I am sorry that in addition to dealing with recuperating, you are also dealing with guilt in not being there for Gwyn in such a time of need, as well as the trauma the boys suffered. You are most definitely not responsible for the bad timing that both your health turn and Gwyn's mom's passing collided at the same time. Having read many of your posts, you are quite obviously a dedicated wife and mother and you will continue to be there for your family as you get stronger and stronger. Gwyn and the boys will continue to need you and depend on you in the future and that is a strong reason to continue to push forward towards recovering from this setback.You will get back to full strength again and will appreciate it even more hving pushed through this terrible time. It can be so hard to 'get back up' when like knocks us down, but it is what we all must try to do. Take it day by day and eventually you will get back to where you were before all of this started. Do it for yourself and the men in your life. Best wishes for a fully and speedy recovery.
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Wow, cariad. Sending you all oodles of *huggles*. So much to go through in such a small amount of time. Poor little Dyl ... bless him. I hope your recovery is speedy.
:grouphug;
Thank you, Poppy! Seems to be always the way with us - get a year's worth of drama over in 3 weeks. :P Dyl has not mentioned "the scare" since it happened, so hopefully he will have forgot about it by now. He can be such a spacey, scattered kid, it's starting to seem more like a defense mechanism than a detriment.
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So... are you out of the woods yet? I think maybe not yet? You are back to the symptoms you started with, less fever I guess, but with an added extra bit of chest pain. Big big love coming at you from down here. My friend had viral meningitis late last year, her virus was chicken pox. And I have a friend who had a version of meningitis which affected his memory and thinking, for a very long time. We took to meeting in bars and playing word games using scrabble pieces, to improve his vocabulary again. He's in London now, I think, so I haven't heard from him in years. That's all I know about meningitis.
Oh, thanks, Nat and so lovely to hear from you. I don't think I ever congratulated you on your Ph.D, but I certainly shouted out my own Woohoo! when I read the news. So first, belated but sincerest congratulations to you!
That sounds like a brilliant way to help a friend. I've been putting Gwyn through the occasional random word game. The last one was after I had a vision/memory of a dead bird that had flown into the window at my parents house. Very common bird in Santa Barbara, CA so I said to Gwyn "What is that bird that runs around in little packs.... It begins with an S?.... You know, they're everywhere in Southern California.... They can fly but if you chase them their first instinct is to run.... You've eaten one, if you've ever been to Santa Barbara, you've paid $8 for two bites of one on a pile of lettuce.... Quail! Sorry, doesn't begin with an S...."
Please don't do the thing where, because you are so very very over hospitals, you put up with mad symptoms for ages in order not to get that plastic bracelet on your arm again.
You certainly do have a profound understanding of how chronically ill people tick! I have been sitting here thinking "When is the very earliest I could stand to be sent back to hospital?" before I call my GP.
I should think you need to remain on the radar with your doctors and stuff, so that they can sort out, you know, the heart thing, and the headaches might be fixable, maybe. And the antibiotics in order not to get a relapse, they're working on that, to find cariad friendly antibiotics? And consulting with your transplant team, one wonders, so that they don't put you on something that stuffs up the kidney situation...? Sorry about asking all these annoying 'go back to the doctor' kind of questions. I guess its the opposite of what you would like.
Please don't apologise! Once again, you have this magical way of suggesting things without sounding even slightly controlling or indifferent. The doctors here want me to at least get a Pneumovax jab and a blood test, so I shall call my GP today and then be sure to mention the heart issue at my appointment. The heart discomfort is so constant that, from what I've read on the internet, I am thinking possibly, hopefully a pulled muscle? The issue that my surgeon sees as most dangerous is that I have no spleen from my original transplant. Now, I haven't really noticed that affecting me much over the decades, I always viewed it as about as dangerous as having no appendix, but I suppose it still leaves me a bit more immunosuppresed than the average person. Also, it was pneumococcal bacteria that caused all of this and I still remember from one of my biological anthro texts the words "People without a spleen die very quickly from pneumonia." One has to give props to the NHS at this point.
I wish I could fix you up Cariad, you're the best. And that fellah of yours is GOLD. I don't blame you for loving your family round about now.
Aw, aren't you a sweetheart! Cheers for that. I see Gregory is fast approaching his one year anniversary with the new bean. I'll be thinking of both of you, wishing you a carefree celebration of your new lease on life. :cuddle; :beer1;
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I'm sorry Cariad what a nightmare . I've had encephalitis several times, And hydrocephalus every few years. I'm afraid it sounds like your experience. It's awful. But you will get better. (I would keep'n eye on you WBC though, cos those symptoms, and just in case.... It's just a blood test) I'm very sorry to hear about your mother in law.
Lots of love, and strength for you, and your family
:grouphug;
Hydrocephalus every few years?! Oh, Cas, darling, I just had no idea! Y'all are so stoic on this site, I tell you what!
Thank you ever so much for the words of support. And I will certainly look out for my WBC results after I see my GP.
Here's hoping that we both make it to Cambridge in person come April! :beer1;
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Hi cariad ..... I hope this post finds you improving and getting better every day. We all can certainly understand your sadness and frustration with your health setback. Things like that are such a reminder of how fragile we all are. I am sorry that in addition to dealing with recuperating, you are also dealing with guilt in not being there for Gwyn in such a time of need, as well as the trauma the boys suffered. You are most definitely not responsible for the bad timing that both your health turn and Gwyn's mom's passing collided at the same time. Having read many of your posts, you are quite obviously a dedicated wife and mother and you will continue to be there for your family as you get stronger and stronger. Gwyn and the boys will continue to need you and depend on you in the future and that is a strong reason to continue to push forward towards recovering from this setback.You will get back to full strength again and will appreciate it even more hving pushed through this terrible time. It can be so hard to 'get back up' when like knocks us down, but it is what we all must try to do. Take it day by day and eventually you will get back to where you were before all of this started. Do it for yourself and the men in your life. Best wishes for a fully and speedy recovery.
Hey, stranger! Brilliant to see you back and, if I'm not mistaken, post-transplant. Congratulations!
Thanks so much for taking the time to offer words of support and encouragement to me. Your kind words have me blushing over here! (And I got a giggle from "the men in your life")
I hope you are also feeling the full benefits from the new kidney, and that you will keep us updated on how life treats you. We've missed your wisdom here! :beer1;
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Cariad,
Regarding the loss of words (it is such a frustrating experience!), I am almost fully recovered from that. I can tell the difference between the "normal" can't-think-of-a-word circumstance and the mental blank. I made the analogy of opening a dictionary to look up a word and all the pages were blank.
My friends often say, "Aleta is back," these days. I mostly just kept my mouth shut around others, because in the middle of sentences my brain would shut down. Soooooo frustrating and I felt like an imbecile. Because I was sitting at home in the dark for so long during the worst of it, I practiced saying, "I can't talk," for when the phone would ring. Being asked a question was the worst. It would feel like fireworks going off in my brain.
I could still manage typing, but it would take about a half hour to compose a paragraph. Recipients wouldn't see that, though, so I could maintain a semblance of normalcy. I could also read (though y comprehension was pretty shoddy). For a long time my only duty at school was reading to the kids. I would "hide" in the quietest part of the school tending to bookwork (at a snail's pace) and emerge when it was time to read. the kids hardly realized how sick I was!
I'm back to working 10 hours a day, and mostly fluent again. You will get there.
:grouphug;
Aleta
You are a warrior, Aleta. I cannot even begin to imagine myself able to maintain that schedule. My big achievements for today have been sorting a few online issues, making a few phone calls, and forcing myself to accompany Gwyn on a brief grocery shopping trip. I find that thankfully once I remember a word or a name, it sticks with me. Maybe if I read the dictionary? :laugh:
A new more noticeable issue that I have with this meningitis varietal is an unsteady gait. I imagine people who do see me walk with Gwyn think the poor man is taking his wife out to walk it off. I have not had a drop to drink since before this all started, nor do I intend to have anything until I've had quite a while off the paracetamol. I've heard too many stories about the rapid (fulminant even) liver failure that comes from mixing alcohol and acetaminophen.
Reading all these stories I cannot help but think I've actually been very, very lucky. :grouphug;
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Come on Cariad, people that have never had anything wrong with them, or their nearest, and become 94 years of age are lucky
I hope you keep getting better, so we can meet for the first time ever, and Rich, and Sugarlump etc
Love, Cas
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Come on Cariad, people that have never had anything wrong with them, or their nearest, and become 94 years of age are lucky
It's an eye-of-the-beholder thing, isn't it!
I made my various appointments and had to go to the GP's surgery 3 days in a row, but it's done. I had the pneumovax shot and that was painless, I had an EKG (also painless, unsurprisingly) and a blood draw (awful, lots of pain, huge needles and usual problems with my battered veins).
The GP will ring me on Monday morning. He was reluctant to refer me to London and said something about 99.9% of local residents' issues being treated in our county. I tried to find a nice way to say "We are so out of our depth here. Please don't make this about egos and statistics." The way I am feeling now, I could probably skip seeing the London infectious disease specialist as I am definitely on the improve, but I'd rather just go and see what she has to say. We have private insurance but she only takes NHS. I feel I could persuade him if I put any effort into it, but also strongly believe in picking my battles. You would not believe the sheer number of companies Gwyn and I have had to take on since we moved here, I've never seen anything like it. It's exhausting.
I am also concerned about the numbness I feel in both arms. I worry it's a sign of heart issues, but I just had an EKG yesterday. The nurse seemed to imply that the EKG would tell me if my heart is fully functional, but I am concerned about blood flow and suspect I need a different test for that. What is that treadmill test called? I have lost so many words! Should I ask for that, something else, or does the EKG really give enough information?
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Hi Cariad ...... I think you're referring to a stress test. There are a couple types. There's the treadmill one and there's one where they give you a shot to induce the effect of being on a treadmill.
You're a smart cookie staying on top of all these things ..........and a trooper, because you are so right, it literally is a full time job .....
Best regards.
Todd
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Numbness is usually a sign of a neurological issue not blood flow. If you have had meningitis I wonder if that could be the issue . Also any issue in the neck at the cervical nerve area can cause numbness in arms. Do you have weakness too or just numbness?
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Hi Cariad ...... I think you're referring to a stress test. There are a couple types. There's the treadmill one and there's one where they give you a shot to induce the effect of being on a treadmill.
You're a smart cookie staying on top of all these things ..........and a trooper, because you are so right, it literally is a full time job .....
Best regards.
Todd
Aw, you are so supportive, Todd. Thanks for this. Yes, the stress test! I had one pre-transplant #2 and the doctor said there was some sort of leaking but that it was minimal and I guess perfectly normal? ??? She did ring my coordinator from the test room in the hospital to tell him that she could give me the all-clear. (Benefits of going to a private hospital during a recession. They were so bored and under-challenged that I'm pretty sure I was the most exciting patient they had all week.)
Oh, and hell yes to the full time [volunteer] job comment. :2thumbsup;
Numbness is usually a sign of a neurological issue not blood flow. If you have had meningitis I wonder if that could be the issue . Also any issue in the neck at the cervical nerve area can cause numbness in arms. Do you have weakness too or just numbness?
Huh, neurological issues? I don't know what to hope for now, heart issues or CNS gone wonky. I guess neurological issues are less likely to kill me with little warning. I would say I do have weakness all over, not specifically in my arms. I chalked that up to being almost immobile for 3+ weeks. My grip is nowhere what it used to be, just trying to get the handbrake off the car after my husband has been driving it is a Herculean task. It feels like my arms have fallen asleep, so numbness and tingling. Pain over my heart is gone, the GP suspected that was muscular because at my appointment he pressed on that area (apparently "not even that hard") and I wanted to scream. I've always heard that if you have pain in your chest that spreads to your arms/shoulders, you're in trouble. The sensation in my arms comes and goes, it is here as I type.
When I first asked the GP (lovely man, not trying to bash him) about the possibility of heart problems he referred to my age and said "It's not too often that a XX-year-old will drop dead of a heart attack." OK? And....? Unfortunately, I have been the rare exception before, and I fear being it again, so that was not soothing in the slightest. Still, the GP did order the EKG and a blood test with some protein that is being measured that should indicate something or other. I was much better with the medical details before my memory was staggered by these diabolical bacteria. :P
Thank you so much for this information, obsidianom. It gives me hope that I am not being overly cavalier by not immediately rushing to hospital. I will mention this to the GP when he calls Monday and see if I can at least relax when it comes to my heart function.
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I hope you are feeling a little better today. :cuddle;
I understand what you feel about hospitals (and doctors and nurses etc not to mention that ****** NHS helpline. :Kit n Stik;
I am glad I don't live in the states and have a gun, there have been plenty of times when I would have shot myself or them!
I had hallucinations after my first transplant whilst in Addenbrookes Hospital. They gave me cyclizine for nausea and i was allergic to it.
I was convinced I wasn't in my body anymore and that I was watching myself and that really freaked me out. When I started screaming they went to "her"
rather than "me".
Big hug from me :cuddle;
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For cardiac eval. a stress test is useful but an echocardiogram and arteriogram are also important.
Numbness in the arms can be caused by radiculopathy in the cevical nerves in the neck. Basically its a pinching or trauma to the nerve roots going to the arms that start in the cervical canal in the neck (C4 to C7) . Many reasons this could occur from arthritis to heniated disc , or possibly meningitis. The fact it is in both arms could mean disc or could be some other neuro syndrome .
When a person has an MI or heart attack it rarely goes down both arms and the pain is usually accompanied by other symptoms like dizziness, nausea, sweating , jaw pain etc. Women often dont have pain as much as men in an MI.
If the arms continue to be numb I would refer you to a neurologist to test the nerves and that physician could order an MRI if disc injury is suspected.
Hopefully it will improve on its own and you can move on. That is quite possible. You have been through a lot so you may need to just heal.
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Like obsidianom, I'm hoping that what you are experiencing is just post-traumatic stuff and will resolve itself in time. Still, it must be quite worrying. Please do keep us updated! Take good care of yourself and let us know how you are doing.
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I hope you are feeling a little better today. :cuddle;
I understand what you feel about hospitals (and doctors and nurses etc not to mention that ****** NHS helpline. :Kit n Stik;
I am glad I don't live in the states and have a gun, there have been plenty of times when I would have shot myself or them!
:rofl;
Yes, no kidding! I remember being on the phone to our insurance company and screaming across the house to my [then] 7-year-old "Aidan, this company is trying to kill your mother!" I think I could have shot them and argued self-defense! But I shouldn't even joke about that, lest an American in a fragile mental condition gets any ideas....
I had hallucinations after my first transplant whilst in Addenbrookes Hospital. They gave me cyclizine for nausea and i was allergic to it.
I was convinced I wasn't in my body anymore and that I was watching myself and that really freaked me out. When I started screaming they went to "her"
rather than "me".
Big hug from me :cuddle;
See, that's what I would call a plausible-enough hallucination, that the hospital is ignoring your pain. Those are awful!
Thanks for the support! All being well, I'll see you in Cambridge. :cuddle;
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For cardiac eval. a stress test is useful but an echocardiogram and arteriogram are also important.
Numbness in the arms can be caused by radiculopathy in the cevical nerves in the neck. Basically its a pinching or trauma to the nerve roots going to the arms that start in the cervical canal in the neck (C4 to C7) . Many reasons this could occur from arthritis to heniated disc , or possibly meningitis. The fact it is in both arms could mean disc or could be some other neuro syndrome .
When a person has an MI or heart attack it rarely goes down both arms and the pain is usually accompanied by other symptoms like dizziness, nausea, sweating , jaw pain etc. Women often dont have pain as much as men in an MI.
If the arms continue to be numb I would refer you to a neurologist to test the nerves and that physician could order an MRI if disc injury is suspected.
Hopefully it will improve on its own and you can move on. That is quite possible. You have been through a lot so you may need to just heal.
I think you've nailed it with the neurological issue suggestion, obsidianom. I have found that the discomfort in my arms lessens if I remove layers of clothing - not tight clothing, either, a fleece jacket or similar. I also get these pulses of pain at the back of my head, right at the base of my skull. My right shoulder blade has been a bit rough, too. I think the various pains are too diverse and scattered to be heart issues. I've had PHN (agony) so I remember how mercurial that all was. I also remember that a drug - think it was called Lyrica - saved my life back then, literally. I detest the seedy nature of large pharmaceutical companies, but, at the risk of being too macabre, suicide looked like my best option before the transplant neurologist came along with his prescription pad.
Ah, just as I was typing this my GP called. He consulted with an infectious disease specialist (they so don't want me going to London it would appear) and I've been prescribed an antibiotic for the foreseeable future. :( So much for the drug-free days. I hope I'll get to enjoy them again as I went through too much to only get 2-3 years with no prescriptions to fill. They've chosen doxycycline which I've taken in the past but cannot remember if it makes me nauseous. It's a favoured anti-malarial with anthropologists, and since I cannot, cannot, cannot have those vicious drugs like Lariam, I hope this will not destroy the effectiveness of that antibiotic for me. My dream is to take a family holiday to Africa before my youngest gets too much older.
EKG was normal, the nurse was not able to draw enough blood to get the protein that marks heart function. This is one problem I do have with the NHS - blood tests so frequently go wrong. I've only been back here 18 months or so and I've had one blood test completely lost, one blood sugar draw where they tested for everything but my glucose level, and now this. My GP said my liver is "improving". Stop right there! Back up, I was never told there was any liver involvement. He said it was expected (more or less) because of one of the drugs they gave me. Thankfully, he did add "I'm not worried about your liver." I do love my red wine and worry that that will catch up with me the way everything seems to do. (Although it hardly matters at the moment as I still have no desire for alcohol.)
I asked about these various pains being neurological and he said it was certainly a good possibility. It's not severe enough for me to ask for a medication but it's nice to know that if things do take a turn for the worse, I have options.
Thanks everyone for the continuing support, suggestions, and enormously helpful information.
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I remember your horror stories about Lariam, and I'd hate to read more stories like these. So, good luck with the "new" antibiotic. At what point do you think they will decide to take you off of it? What do you take "the foreseeable future" to mean?
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How about a Chiropractor for your neck /arm back pain. I have had good sucess myself with my neck issues with a good chiropractor and they dont use drugs.
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oh goodness Cariad, you dear soul...I think of you often and come here to see this! And though i cant add anything here except i had meningeal cacol or some name like that when i was 17 and nothing related to it since, i can only say BE WELL friend... You have shown such strength through life, You've always amazed me, and im wishing you the strength through this as well.... my prayers and best wishes for you sweetheart... jill aka boswife
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oh goodness Cariad, you dear soul...I think of you often and come here to see this! And though i cant add anything here except i had meningeal cacol or some name like that when i was 17 and nothing related to it since, i can only say BE WELL friend... You have shown such strength through life, You've always amazed me, and im wishing you the strength through this as well.... my prayers and best wishes for you sweetheart... jill aka boswife
Oh, Jill, what a surprise! How lovely to hear from you. Thank you for these amazingly supportive words. Great news that you seem to have vanquished meningitis for life, that certainly does give me hope that there can be an end to this.
I was glad to read in another post of yours that you feel you are on a healing path after Bo's passing. You've brightened my day (and many other people's) so many times, you deserve to have sunlight filling your days. I consider you a true Californian in the way you approach life - it's about the love you share with others. Your posts always bring me back to that simple rule. [Yes, I adore California and do see love and tolerance as 'Californian traits'] Do take care of yourself and please continue visiting whenever you're up to it. :cuddle;
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I remember your horror stories about Lariam, and I'd hate to read more stories like these.
Oh, that drug... direct from hell....
So, good luck with the "new" antibiotic. At what point do you think they will decide to take you off of it? What do you take "the foreseeable future" to mean?
I shudder to say it, but I think the GP is thinking forever-ish. I'm hoping that my surgeon will feel differently. I'm not sure why I went so long without getting sick once I came off antibiotics in the 1990s. Once my creatinine went up and I was prescribed more powerful immunosuppressants in higher doses, I understood why I was getting so deathly ill. With the crushing illness after the biopsy, OK, that kind of made sense too with the stress of a procedure that I knew I didn't tolerate well and only just coming off the drugs. But why so many infections now? I've been re-immunized, I take no immunosuppresants, my kids are old enough that they no longer go around putting random objects in their mouths and contracting every disease in existence. It's frustrating. This cannot all be for want of a spleen, I just don't believe that.
And I hate that word 'spleen'. It sounds gooey.
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How about a Chiropractor for your neck /arm back pain. I have had good sucess myself with my neck issues with a good chiropractor and they dont use drugs.
I've been thinking of seeing a physical therapist actually. My genius husband still plays rugby and comes back with a new injury after each game. He was able to get physical therapy for his shoulder via our private insurance and it helped him quite a bit. I would have to get a referral from the GP so I'll ask him if he thinks a chiropractor would be the better choice, can't say I know what the difference would be. My mother goes to some sort of new agey style chiropractor that she cannot stop raving about, so I'll ask her about that, though chances are England will not have adopted this method yet. Thanks for the suggestion!
I also have a giant, unopened bottle of Gabapentin that has been calling to me recently. I know it's not the best idea to self-medicate, but this was prescribed to me for nerve pain a few years ago and I've taken it before with few side-effects. With my first bout of shingles Gabapentin was like a miracle in getting rid of the headaches. Sadly, it was useless when it came to my second round of shingles and the resulting, excruciating PHN. The pain really isn't that bad, especially after I take painkillers, but I worry that will change. Gaba and Lyrica seem to actually calm the nerves and encourage healing rather than just continually mask the pain. I guess it's another question for the GP!
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Not doing well on the doxycycline. :( I take it at night because these drugs make me sleepy, but for about two hours every morning I am drastically ill. Then I start to feel better but am still somnolent the rest of the day. I have taken four doses, only the first one was tolerable. I am going to give it a full week and if the side effects don't calm down I'm going to call Chicago. I wish they would just refer me to London. Honestly, I know from hard-won experience that I not only need a specialist, I need a specialist who further specializes in transplant.
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It is really important to take Doxy with meals. It can wreak havoc on your gut otherwise.
I'm on three antibiotics (including 300 mg of Doxy daily) and I do them with breakfast and dinner. Then at lunch time I take my probiotics to counteract the bad side effects.
I've been battling the Lyme for almost two years now. I did a trial run starting Wednesday to see if I could go off the Cyproheptadine (antihistamine for the Lyme Meningitis). All was good until today and my massive headache is baaaaack. Sigh. I'll start the Cyproheptadine again in the morning. It takes a few days for it to take effect. I see my Lyme doctor on Monday.
Aleta
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Can you get some Zofran too? Ask for the ODT. Keep pushing for that specialist.
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Thanks for the suggestions, Aleta and Jeannea. I have been on doxycycline for about 2 weeks now and it is only just starting to be tolerable, I think switching to having it with food as suggested has made a considerable difference. Normally mornings are the worst with dizzy spells and feeling sick, which gives way to a low-grade headache that only responds to Ibuprofen, which I don't like to take too much of. This morning I felt well enough to get up and make the tea and coffee plus the lunches for everyone, and do my portion of the school drop off, so that was a good start to the day, and here it is early evening and still no headache. I need to email my surgeon in Chicago and ask if he thinks I can come off this drug anytime soon. I am terrible at remembering to take drugs, and years off them has not helped me improve.
Does anyone know if you can have alcohol with doxycycline? I do so love a glass or two of red wine with dinner. I've already had a small glass on several separate nights while on doxy, and one large one when my husband surprised me with a dinner out, no kids. It says in the patient leaflet in large print to not have alcohol with the drug, but then I've read that most antibiotics can be mixed with moderate alcohol with no problems. According to the old story, the blanket 'no alcohol' rule comes from World War II when soldiers would take antibiotic for venereal disease. By telling them it was dangerous to have alcohol with the antibiotics, they were trying to prevent them from getting soused and spreading the disease, or contracting fresh trouble. Does this sound like a just so story?
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Cariad, I can give only anecdotal evidence:
I don't usually need antibiotics, but when I do, I always take them with food. (But I'm still not the most interesting girl in the world. :P) It does make an enormous difference in fending off nausea.
As for alcohol and antibiotics, I vividly remember an instance decades ago when I was told by my then-prescribing physician not to drink alcohol with an antibiotic I'd just been given. I didn't think much of it, and that afternoon I had lunch with a business colleague. He had ordered a dark ale, and I had a sip. ONE SIP. By the time I got back to the office, I was entirely lucid but could not keep my head upright because the room was spinning and lurching. I think I had to be driven home. You might be able to tolerate alcohol while taking antibiotics, but I most certainly cannot. Since you've had no problems, I'm not sure why you should stop enjoying your wine with dinner!
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Since you've had no problems, I'm not sure why you should stop enjoying your wine with dinner!
Well, I went without any wine for a few nights, then had a desperately needed glass Sunday night. We have these perfect glasses from a wine tasting we attended, if you fill it to near the top it is still only 175ml, or what a restaurant will serve you if you ask for their smaller pour. I had one of these, near the top, and woke next morning with a headache that I just knew was the wine. :( Had nothing last night and feel pretty great this morning, so I am giving up alcohol while on this med. It will certainly give me incentive to follow up with doctors and get off it as soon as recommended. I'll probably double my hot tea intake as that is the only other drink that truly relaxes me.
Thanks for your input. I'm off for a cry now. :'( :wine; :guitar: :'(
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Oh, I'm sorry to hear this! For how long do you think you'll be on this particular med?
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So worn down. I'm sick again, and Gwyn is struggling, too. Vomited violently yesterday for about 4 hours. The only other symptom I had was the dizzy spells which they are calling vertigo. I have an intense headache over my right eye at the moment and ibuprofen doesn't seem to have touched it. Unable to take antibiotic yesterday and nausea today has brought me to the conclusion that I should skip it tonight. My stomach and chest muscles are sore from all the upchucking. If this is the meningitis coming back then I give up.
:(
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Cariad,
Ask about cyproheptadine. I am lost without it.
I have not had a drop of alcohol for over a year now. Oh how I long for a margarita, but getting well is far more important to me than the short pleasure of drinking alcohol.
I wish you could catch a break! :grouphug; :grouphug;
Aleta
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How is your BP? When I have vomiting episodes with headaches, I often check and have pretty high BP and need an extra clonidine. That may be tough depending on what BP meds you have or don't have. Do you have a fever? Check that often. Can you keep anything down yet? If you can't keep anything down for days or get a bad fever, pls call your doctor.
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How is your BP? When I have vomiting episodes with headaches, I often check and have pretty high BP and need an extra clonidine. That may be tough depending on what BP meds you have or don't have. Do you have a fever? Check that often. Can you keep anything down yet? If you can't keep anything down for days or get a bad fever, pls call your doctor.
Embarrassingly, I don't have my own BP monitor. I used to, perhaps I gave it away during the big move overseas, or perhaps it's in our endless supply of boxes. Blood pressure is an interesting measure that I didn't think of - the vertigo makes it feel like I may actually have low blood pressure. No fever, that I have been checking. I started up the doxycycline last night after skipping two days due to being unable to keep anything down. That may be why I feel so wrecked this morning, although I was able to eat last night. I am supposed to call the GP and try to make an afternoon appointment with him, but I don't even want to leave the bed. I need to email my surgeon in Chicago, too. (I know, I keep saying I will....) I am going to see if we can just blank the doxycycline. Thanks for the suggestions and concern, Jeannea.
Ask about cyproheptadine. I am lost without it.
I will, thanks!
I have not had a drop of alcohol for over a year now. Oh how I long for a margarita, but getting well is far more important to me than the short pleasure of drinking alcohol.
Wow, a year! You're right though, if I had to give up alcohol forever but it meant never going through this madness again, well who wouldn't be happy to make that trade off? Hopefully we'll both be able to enjoy the occasional libation soon.
I wish you could catch a break! :grouphug; :grouphug;
And you, Aleta! You've been fighting far too long.... Thanks for supporting me through this battle! :cuddle;
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My Lyme doctor switched me to penicillin (in addition to doxycycline and tindamax) at my last visit. Oiy! 3000mg of penicillin a day really does a number on my gut. I pretty much have to nibble my way through the day. If my stomach gets empty, I'm in for some real pain! I take probiotics and eat yogurt at lunch when I'm not taking any antibiotics to keep the gut flora happy.
If you continue to have the headaches, do press for cyproheptadine. I have no side effects from it and it keeps my head pain at a hardly noticeable level.
You may not know that Carl was in the hospital all last week on a heparin drip as a cautionary measure to keep a blood clot from going from an aneurism in an artery in his arm into his hand, causing him to lose the hand. He had the artery replaced on Friday, leaving an 8 inch incision to heal. We are tough old birds, though. :2thumbsup;
Get yourself better, dear Cariad.
Aleta
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My Lyme doctor switched me to penicillin (in addition to doxycycline and tindamax) at my last visit. Oiy! 3000mg of penicillin a day really does a number on my gut. I pretty much have to nibble my way through the day. If my stomach gets empty, I'm in for some real pain! I take probiotics and eat yogurt at lunch when I'm not taking any antibiotics to keep the gut flora happy.
That is quite a course you're on! Probiotics are fantastic. Gwyn just bought a load of Rachel's Youghurt, which just happens to be a Welsh brand. Soooo expensive in the US!
If you continue to have the headaches, do press for cyproheptadine. I have no side effects from it and it keeps my head pain at a hardly noticeable level.
That's superb news! Definitely a drug I will remember if/when needed.
You may not know that Carl was in the hospital all last week on a heparin drip as a cautionary measure to keep a blood clot from going from an aneurism in an artery in his arm into his hand, causing him to lose the hand. He had the artery replaced on Friday, leaving an 8 inch incision to heal. We are tough old birds, though. :2thumbsup;
I was telling the woman at the veg stand at our weekly market about how 2014 was shaping up for us (poor thing did open the door by asking!) and she said that at least things will have to get better for us because our start was just so catastrophic. Hopefully there's truth in that for you both, too. It's got as bad as it can get, so now things will begin to improve. I don't know about the 'old' (you two don't act it!) but you don't have to tell me about the tough. Nothing like struggling to keep pace with a newly transplanted friend to impress upon a person just how rugged you both are. :)
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Most. Pointless. GP. Visit. EVER.
Apparently, since I made this appointment on an urgent basis, they just put me with whomever had availability, which was not my usual GP.
He said I had to stay on the doxycycline, that it was not a drug that gave people any real problems, but I could take a few days off to let this stomach virus clear if I wanted. My blood pressure was 100 over some mumbled number. Everything else was just sort of "I don't know, ask your GP." I said I was only there because NHSDirect told me to see someone urgently and he said "They always say that." Oh.
I am so lucky to have a surgeon in Chicago looking out for me. I finally got an email out and he emailed me back within an hour saying "sounds like the doxycycline doesn't agree with you". Yes, thank you, appropriate response! He contacted the infectious disease specialists there and given that I've had problems with penicillin and zithromax, the following suggestion was made:
"I would specifically ask if she has ever taken a cephalosporin - if so, keflex 500mg once a day is one option; alternatively levofloxacin 500mg QD or moxifloxacin 400mg QD would be a good alternative."
Oh, man! These sound like biological weapons. The surgeon favours levofloxacin, but I have a feeling I will go to the NHS with this list and they will say "Are you a soldier in a current war...? Then no dice, sister!" We'll see. I think first I'll take that break from antibiotics that the GP mentioned. :P
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Geeze! :thumbdown;
I hope the yoghurt does some good for you!
There are several "families" of antibiotics and surely you will be able to find one that works without working you over. :cuddle;
Aleta
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I don't know what your trouble with penicillin was. As a reminder there is a 10% crossover of penicillin and cephalosporin allergies. I am allergic to penicillin from childhood. I tried a cephalosporin as an adult. Awful hives and large swelling of the joints. I itched and hurt.
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In 25 years of practice I have never seen a crossover cephalosporin allergy with penicillin. Yes it can happen but it is very rare. Cephalosporins are about the safest and easiest to tolerate of all the broad spectrum antibiotics. I use Keflex (cephalexin) a lot in practice. Levoquin and the other quinolones like it are more risky and have more potential for issues like tendon problems and are effected a lot by kidney disease.
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^
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Levoquin and the other quinolones like it are more risky and have more potential for issues like tendon problems and are effected a lot by kidney disease.
I took levaquin and after just one dose began having soreness in my Achilles heel tendons. Was really irked at my dialysis neph for prescribing, especially since it is a "Black box" warning antibiotic (she said I was her first patient exhibiting this side effect). Fortunately, I never experienced the more serious tendon problems like rupturing.
I was one of the first doctors to see this problem in the achilles back about 15 years ago. I researched it and helped patients with a class action lawsuit at the time. I have seen many cases of this . The drugs (cipro and levaquin) cause damage to the cells of the tendons causing cell death and holes in the micro archtitecture of the tendons. This can lead to ruptures in some cases. They are difficult to treat. We eneded up having to purchase a cold laser for the office to treat these as it is one of the better treatments for this condition.
I only use these antibiotics when I have no other choices. Keflex is far safer and most people can tolerate it well.
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I mentioned the Levaquin black box warning to my nephrologist in Long Beach back when I believe the news was first coming out (2007/2008). He looked concerned but said he had never seen this himself. I took Levaquin after transplant because I had pleaded my way into this trial and my surgeon had got a protocol deviation from the FDA just for me, so I didn't feel I had very solid ground to be a further nuisance by demanding different drugs as well. It does make me horribly nauseous, though, so I use that more than the black box warning which does not exactly seem to have revolutionized antibiotic prescribing in the US.
When I was being discharged from the hospital here, I said I didn't want to take Levaquin because of the black box warning. They had no idea what Levaquin was, so I said it goes by another name, I think it begins with a c.... OK, they call it cipro. I said it could cause ruptured tendons and his response was "that's pretty rare...." Lovely doctor, too, I just think he felt the walls closing in on him as here was this person who underwent some operation or other that just complicated everything, and was supposedly allergic to two different classes of antibiotic, and now was refusing to take a third. I don't even know if they do black box warnings over here. It's refreshing to hear that I'm not the only one who finds this a colossal risk that is only worth taking under the most dire of circumstances.
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I don't know what your trouble with penicillin was. As a reminder there is a 10% crossover of penicillin and cephalosporin allergies. I am allergic to penicillin from childhood. I tried a cephalosporin as an adult. Awful hives and large swelling of the joints. I itched and hurt.
Oh, sounds miserable! This is the kind of thing I would probably get.
Whether or not I am actually allergic to pen and zithromax is debatable. It's not a true allergy in the sense that my lips do not turn blue within moments of taking it. It is, however, a fast-acting rash that my surgeon has finally said once and for all "I would avoid it if you've had past problems with it." Not being a true allergy, they gave it to me intravenously to combat the bacterial meningitis and decided they would just treat the rash. (Well done Gwyn for explaining this so well that they knew the way forward.) And guess what, no rash. There did seem to be a small rash developing near one of the IV sites, but that was over a week in to treatment. Strange. I blame the clinical trial. I react so differently to everything now, my life has been split into pre and post-transplant halves. My last reaction to penicillin was pre-transplant.
Come to think of it, Gwyn is allergic to penicillin as well, so it really doesn't make sense that I would react differently to pen post-transplant. (He donated his immune system with his kidney, and at least one other participant in the trial developed a Bactrim allergy after receiving stem cells/kidney from a donor who had a sulfa drug allergy.)
Thanks for the warning, Jeannea. I will be on alert if they prescribe the new drug to me.
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Cipro and levaquin are not the same drugs. They are in the same family but are different. Levaquin is once a day dosing and cipro is twice a day usually. Also they have a slightly different bacterial sensitivity. Levaquin is more broad spectrum while cipro is stronger against gram negative bacteria like e-coli. That is why cipro is often used for UTIs as most UTis are e-coli.
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Cariad, how are you feeling today? Are things getting any better at all?
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Just the question I've tuned in to ask..
I've been away a little while and was shocked to hear what you've been through - thank goodness you saw a doctor all those weeks ago. You've really been through the mill but I love your sense of humour!
" I've been putting Gwyn through the occasional random word game. The last one was after I had a vision/memory of a dead bird that had flown into the window at my parents house. Very common bird in Santa Barbara, CA so I said to Gwyn "What is that bird that runs around in little packs.... It begins with an S?.... You know, they're everywhere in Southern California.... They can fly but if you chase them their first instinct is to run.... You've eaten one, if you've ever been to Santa Barbara, you've paid $8 for two bites of one on a pile of lettuce.... Quail! Sorry, doesn't begin with an S...."
(Sorry, I can't get to grips with that highlighting option though I know it'll be something simple!)
You did make me laugh! Only last night I took my partner on a long and winding track down the wrong path. .again.
Also very glad to hear you are coming to Cambridge- in the UK? If so, and you fancy a meal with a complete stranger, message me. I'd like to offer a fellow IHD-er and amazing family a meal. Sounds like you all need a good break. Hope you have a splendid time here. We live in the centre of town so easy to find.
By the way I'm on Keflex everyday - no problems.
Would really like to know how you're getting on...
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Hello Iona Do you live in central Cambridge??? 8)
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Hello Sugarlump...yes I do.. Cambridge UK. Are you in Cambridge? Visiting Cambridge?
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Wow, once again overwhelmed with the concern and support shown here. Thanks all of you!
I don't have a load of time this morning so forgive me if I seem short with everyone, but I wanted to know if this sounds familiar to anyone:
I have been struggling with a total lack of energy. I walked to the hospital and back (maybe just over a mile) on Tuesday and needed days to recover. I don't really eat anymore, not like I used to anyhow. I used to eat quite a lot, in my opinion, perhaps too much even. I don't know, really, since my views of food were screwed up so long ago thanks to my post-transplant experience.
Yesterday was a typical day post-meningitis. I had a muffin in the morning and felt nauseous straight after, then a cereal bar right before I went to volunteer at the charity shop. Charity shop manager who also likes to experiment in the kitchen made cranberry almond cake, so I had a slice of that to be polite (not that it wasn't lovely, it was) and again felt nauseous. My husband made pasta for dinner, I hadn't really thought about food all day (which is not like me) had a few bites of the pasta, felt too sick to continue and stopped. I don't drink anything with calories, so while the GP said to drink Lucozade I truly do not see that happening. I was trained early in life not to "waste" calories on drinks, so it's just not in me to do this. (And I hate the taste!)
In summary: no longer feel hungry, when I do eat I cannot tolerate much food. I tend to want simple carbs now, where I had little taste for them before the illness. Could this be why I feel so exhausted all the time? What is going on and how do I fix it? I feel like I cannot go out to restaurants anymore because I won't want to eat and if I try I'll feel sick and need to lie down. Thanks for any tips or thoughts!
Iona, you are so sweet. Thank you for your message, you really lifted my spirits! Please read this thread http://ihatedialysis.com/forum/index.php?topic=29113.0
and then JOIN US!!! We have people flying in from Australia and America, so I don't think we'll be able to accept any excuses from someone who lives in Cambridge! I live in the Midlands, and we are still making arrangements, but we intend to be there for some or all of the festivities! Hope to meet you soon! :)
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Here's the problem. You were terribly sick in the hospital for about 2 weeks. When your body is fighting a difficult illness, it feeds on your fat and muscle for energy to fight. When you get home, you find that you are much weaker. I was in a coma for about 2 weeks then about another week in the hospital. I went to stay with my parents and my mom turned her downstairs sewing room into my bedroom. I used a walker for a month and it was 3 months before I could have my bedroom upstairs. I also needed a month of physical therapy. I think that it's great you're walking. You need exercise to get stronger. But you also need to recognize your limits. You will feel different than you did before being sick.
The food thing is tricky. When I am constantly nauseated, I stand in front of the fridge then the cupboard and stare. When I see a food that doesn't make my stomach turn I eat that. I can usually eat eggs for protein when I feel bad. You need something with protein to get stronger but I don't see anything wrong with carbs either. You need to eat something. I don't like those protein drinks either. I would probably skip restaurants for a few weeks. Did you get any Zofran yet? It can really help. Ask for the ODT version that dissolves on the tongue.
Recovering can be hard! Be kind to yourself.
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When I was recovering after feeling very poorly, and finding it difficult to eat anything
I found I could eat orange food!!! (Fish fingers, carrots, marmalade, orangs and orange juice etc)
I don't know if there is any logic to this but it worked!!!! :o
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Cariad, I don't have any advice, but I just wanted to tell you that I'm thinking of you and hope you recover quickly. I'm really sorry that this illness and subsequent recovery has been so difficult. Lack/loss of appetite raises all kinds of red flags. I hope you can find some foods that you can tolerate. Food is fuel for the body, and without it, well, no wonder you feel tired. It's a vicious cycle. Let us know how things go for you. :cuddle;
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You are very wise, jeannea, and make a lot of sense. I am a panicker when it comes to getting back to normal after illness. I think it goes back to having this ridiculously dramatic illness so young and just bouncing back so effortlessly, as kids will do. I guess it gave me unrealistic expectations as to how quickly a person can be expected to get back to normal after fighting off highly fatal bacteria. I reckon the stomach flu was more of a setback than it would have normally been since I started out at less than 100%. I don't have dissolving Zofran, but I've had that before and it is magical stuff. I believe the anti-sickness I have (but didn't even think to try yet, duh again!) is called cyclizine. If I feel nauseous after dinner I'll have to try it. It's probably why they gave it to me, you know, to actually USE, and not just talk about and then chuck in the back of a drawer. :P
Sugar, orange foods, huh? I worry that you listed 'fish fingers' under that description. :rofl;
MM, thanks. :cuddle; It sounds obvious when you say it, but of course it took me until now to think that there might be a connection between not eating and not wanting to get out of bed. I astonish myself with my brilliance sometimes!
Dare I announce that today was better? It was our first gorgeous, warmish, DRY day in quite a while. Gwyn and I walked in to town, then walked to collect Dyl from school, then walked back to town to get Dyl posh ice cream, then walked toward home only to run into Aidan and his friends, then ran an errand for Aidan and then walked home. I don't feel completely wrecked, and I ate more than half of a pesto, mozzarella and tomato sandwich from the local bakery with no ill effect. I'm calling this progress!
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Hey my fish fingers are definitely orange, contain cod and produced by the wonderful Captain Birds Eye!!! They do contain protein in an easily managed amount!!!
:yahoo;
You take care, hope you are going to be well enough to join us in Cambridge. Looking forward to meeting you :waving;
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Keep getting stronger and better, dear Cariad! :cuddle;
If orange food will do the trick I will send you a box of Chees-its!
:grouphug;
Aleta
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If orange food will do the trick I will send you a box of Chees-its!
:rofl; :rofl; :rofl; :rofl;
Certainly worth a try!
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So what are chees-its? An American version of Ritz crackers???
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Sugarlump, they are small square "cheese" crackers that are VERY, VERY orange. I'm guessing the color comes from artificial dyes instead of cheese. :rofl;
We have Ritz crackers here in the US, too. Here is a link so you can see the color: http://www.cheez-it.com/products.aspx (http://www.cheez-it.com/products.aspx)
Aleta
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Wow they are ORANGE!!!!! :o
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Wow they are ORANGE!!!!! :o
Terrifying, aren't they?
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Progress, I think.
Just got off the phone with my GP. He said my labs came back perfect but I forgot to ask for specifics so I'll have to try to get those results today.
He asked about the doxycycline and when I explained that I came off it he asked if I'd be willing to try a lower dose, so I said fine. He reiterated that this would be for life so I will have to check in with my surgeon in Chicago and see if there is any other possibility with that. He said no to the Keflex and relatives because he said it increases the chances of contracting C. diff. and that they try never to prescribe it in the UK. Of course I thought of Iona immediately but said nothing. I said I was surprised as that recommendation came from the infectious disease doctors who specialise in transplant at Northwestern and that perhaps C. diff was not as big a problem in the US. He said it was very common and very dangerous and that it shouldn't be different in America, which put me in the awkward position of having to explain the concept of different disease loads to him, and that this was an issue when I moved from Wisconsin to California, so surely there are differences between the two countries.
I tried not to smush any egos as I said that this transplant procedure is so new and complicated that really the only ones who understand it are the doctors who performed the operation. He seemed to take that well. I am going to try 50mg/day of doxy, then if that doesn't work he is going to refer me to London as he said at that point "we are out of options". (So that's how to get a referral - have a situation with guaranteed failure and they cannot hand you off to the next doctor fast enough! :laugh:)
He also said he would 'liaise' with my doctor if necessary, which is great. I see him in 2 weeks. I also remembered to ask about seeing a dermatologist and he said he would take a look and see if it was anything to be concerned about. OK! Sounding like a broken record, I stated that the transplant dermatologist had told me it looked like pre-squamous cell carcinoma. He wanted to biopsy it but for some reason I just couldn't stand the thought back then. Worryingly, having already seen a specialist did not impress the GP and he said "Well, it depends what he means by that." I sort of assumed that what he meant by that diagnosis was that this was a treatable stage before cancer, and that if you left it to sit it was quite likely that you would eventually have Official Cancer. When did GPs decide that their assessment was just as good (if not better!) than a specialist's? Anyhow, I will continue with the softly softly strategy, but will eventually get what I want. We have private insurance so I'm going to ask for a referral to use that.
Incidentally, my father thinks all doctors are infallible (not sure how after what he's seen them do to his kids) and we've had arguments about whether certain doctors should do the world a favour and leave the field. When I was still recovering in hospital I was telling him about how they were reacting to the news that I have had two transplants and he said "The trouble is you know more about this than any of them." *BOGGLE* I don't know, perhaps I was hallucinating again. I know more about something - a medical procedure no less - than a doctor? What happened to you, Dad?!
Oh, and this GP, my regular point of contact in the medical world, said that they do see people react poorly to doxycycline quite regularly, opposite of what his colleague I saw a couple of weeks ago said. Jesus, I do hate it when they argue through me. Work it out between yourselves, boys, because if I have to listen to this bickering any longer you're both losing your television privileges for a month!
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Keep working that system! You'll get to London yet. Then all you'll need is a luxurious hotel with a spa.
C. diff is definitely a real problem here in the US. I've had my share of suffering from it. But I think that if you never had it before and you're not currently in the hospital, most docs don't worry about it when choosing antibiotics.
I hope the lower dose works for you.
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C diff is definitely a bugger in UK hospitals, and related things like winter vomiting disease... :thumbdown;
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The reality is ANY antibiotic can cause c. diff. .. That is the problem . However some antibiotics like Keflex that are fairly broad spectrum have a higher rate of this side effect. I have never had a patient of mine develop c. diff. from my prescriptions in 25 years and I use Keflex as my number one antibiotic for skin infections /cellulitis. It is fairly safe antibiotic. However using it for a very long term periods like you describe is very different then my experience where I tend to prescribe it for a week or 2. The longer a patient is on it the higher risk.
Why does your doctor feel you need antibiotics for so long? I havent really followed all your problems but I beleive it is for meningitis isnt it? Did they ever do a culture and sensitivity on the fluid? Are there other antibiotics that the bacteria is sensitive to? Sulfa based antibiotics often are used here long term very safely for chronic urinary tract infections and dont cause a lot of c. diff. . Another option possibly is trimethoprim, which is also used for UTIs but it can cause hyperkalemia(increased potasium).
Sorry for all the issues you are having. Medicine has so many areas like this where there are no perfect solutions.
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C diff is definitely a bugger in UK hospitals, and related things like winter vomiting disease... :thumbdown;
What the heck is winter vomiting disease?! Sounds exactly like what I just had. It was indeed winter, and the vomiting aspect cannot be overstated!
Keep working that system! You'll get to London yet.
GP told me to bring the name of the doctor I want to see in London to our next appointment. Seems like a pretty clear message that he's given up!
Then all you'll need is a luxurious hotel with a spa.
That would be therapeutic.... or so my argument will go. :)
C. diff is definitely a real problem here in the US. I've had my share of suffering from it. But I think that if you never had it before and you're not currently in the hospital, most docs don't worry about it when choosing antibiotics.
I've certainly heard word of outbreaks but I don't think I've ever had it.
I hope the lower dose works for you.
Thanks, jeannea!
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The reality is ANY antibiotic can cause c. diff. .. That is the problem .
Oh great! I'd be lying if I said this was welcome information to receive. :(
However some antibiotics like Keflex that are fairly broad spectrum have a higher rate of this side effect. I have never had a patient of mine develop c. diff. from my prescriptions in 25 years and I use Keflex as my number one antibiotic for skin infections /cellulitis. It is fairly safe antibiotic. However using it for a very long term periods like you describe is very different then my experience where I tend to prescribe it for a week or 2. The longer a patient is on it the higher risk.
That could be the issue, actually, although Iona was saying upthread that she takes it every day, so unless I misunderstood she is on a prophylactic dose as well, and here in the UK. The other problem could be that I couldn't remember the names of the other antibiotics in the family, because it wasn't Keflex but a related one that the surgeon thought I should take. Perhaps one of them is safer than Keflex?
Why does your doctor feel you need antibiotics for so long?
Not exactly sure myself. Lack of a spleen because they routinely removed the spleen from transplant recipients back in the day. Suddenly getting illness after illness every winter, with these diabolical 'swinging fevers'.
I havent really followed all your problems but I beleive it is for meningitis isnt it? Did they ever do a culture and sensitivity on the fluid? Are there other antibiotics that the bacteria is sensitive to? Sulfa based antibiotics often are used here long term very safely for chronic urinary tract infections and dont cause a lot of c. diff. . Another option possibly is trimethoprim, which is also used for UTIs but it can cause hyperkalemia(increased potasium).
I think the meningitis got their attention, but it was more like the last straw in a pile of illnesses since 2010 (zoster reactivation, unspeakable PHN, recurrent UTIs, annual flu, strep so severe that my tonsils were almost touching, and now this). In summary, my situation is that I went into renal failure in 1975 at this age: http://ihatedialysis.com/forum/index.php?topic=19662.0 and through a series of misdiagnoses and gross malpractice, passed the point of no return where my kidneys could not be saved. Received a living donor kidney in 1976, that lasted almost 34 years to the day. Second transplant was part of a clinical trial wherein I received my husband's kidney and stem cells with the goal of creating durable chimerism and stopping all immunosuppressive medication after the first year. All of that was completely successful; I have incredibly durable chimerism and have been off all meds since March 18, 2011. But it is a clinical trial and some wonky events have occurred across the participant pool, some explainable and others not. I would like to know why, when I've lived most of my life with no spleen, it is suddenly becoming such an issue. I thought my spleen had regenerated to some extent, and I've theorized that my lack of medical issues could be down to that.
I did take penicillin and Bactrim for nearly 20 years after my first transplant. I am convinced that that is what left me with a possible allergy to pen. I did ask if I could just take pen since I had no reaction in hospital, but the GP claimed that you get a rash the first few times and then you go into anaphylaxis. Of course this contradicts what the allergy specialist told me years ago, but I cannot argue every little detail with this man. I would be over the moon to take Bactrim. No problems with it and I did take it for UTIs last year. My first British GP laughed when I told him Chicago had requested I get Bactrim. He said something about it being an old drug used for cardiac patients that he personally hadn't prescribed for 25 years. He had to call the pharmacist to make sure they could even get ahold of it! (They could, they did.) I'll mention the other antibiotic you suggested to Chicago. I don't think I need to worry about potassium, but if anyone would know it would be my surgeon.
I am unsure about what tests were run whilst I was in hospital. They did do a lumbar puncture (or spinal tap if you're hip enough to use the old lingo!) I believe to confirm the diagnosis. They do know it was pneumococcal bacteria.
Sorry for all the issues you are having. Medicine has so many areas like this where there are no perfect solutions.
Thank you for your concern and repeated efforts to help people, me and many others. It has not gone unappreciated. :)
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Just for yur info, Bactrim or trimethoprim/sulfamethoxazole (sulfa) is very commonly used in US. I dont know where the doctor in your area got his info on it not being available. It is still first line med in the US for UTIs and works well for a lot of infections and chronic use and prophylaxis. It works best against gram negative bacteria but can be used for other types too if they are susceptible. It is safe for long term use unless you are allergic to sulfa.
Ask your doctor about it. It has fewer side effects then many others. Again, everyone reacts differently. However since you have used it successfully in the past , that bodes well. I would push for it, especially if the Chicago doctors are in favor of it. Sometimes old meds work best . They are tried and true.
Thank you for the kind words.
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I emailed my surgeon in Chicago, when I have more time I'll ask a silly question related to that just to get a range of opinions/experiences. He has not replied which is really not like him, so perhaps he's on holiday or something.
I also picked up my lab report this morning. There are little exclamation points in front of anything out of range. My liver function test was not perfect. Low bilirubin (3 umol/L when normal range is 4-20) and high Total Alkaline Phosphatase (112 u/L, normal being 35-105). I am quite familiar with bilirubin thanks to my children (many of you parents know what I'm talking about) but the total alkaline phosphatase sounds more serious. Anyone have experience with it or know what it could mean with regards to my liver function? Thanks in advance.
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I beleive the low bilirubin (which is only slightly low) could be from lack of a spleen. The spleen normally breaks down old blod cells and the hemaglobin is broken down there to bilirubin. So without a spleen you may have less. If you had liver disease it would possibly be ELEVATED , not lower.
The alkaline phosphatase is only a tiny bit elevated. I have seen levels much higher before there is any issue My wife routinely runs 112 or higher and has for 10 years. It could be liver such as bile duct partial obstruction , but it just doesnt seem that high. Bone is the other possibility. High bone turnover like in kidney disease with hyper parathyroidism can cause it.
Anyway, that is why looking strictly at numbers is often confusing if you dont see alot and arent used to seeing small variations. I have learned to be cautious about small anomalies like this . Clinical corelation is vital. Do you have any symptoms of liver disease? Any history? Any hostory of hyper parthyroidism or hyper calcemia /hyper phosphatemia?
Basically I am not that impressed with these numbers without some symptoms to match. I would repeat them anyway in a few weeks to see if they improve or get worse. Try not to worry too much.
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That's really interesting about the spleen and its effect on bilirubin. I had no idea. I've never even really looked at my liver numbers before so I'm learning.
Thanks for the reassurance on the alkaline phosphatase. I did a quick googling before I posted and it sounded like it could be quite dire, so I'm happy to hear that you can be outside the normal range and still normal, if that makes sense. I don't think I have any history of liver disease, and my history of hyperparathyroidism was less than they expected of someone who was in ESRD. (I believe it was Zach who posted articles on this site about how you need a bit of hyperparathyroidism in renal failure or else you may have an entirely different, serious problem.) I took calcitriol for a few months but was told my labs suggested I was being overtreated, and this was all many years ago. My favourite GP whom I saw back in the states, a lovely South African, used to end many of our appointments with "Stay off the internet!". It's so easy to get oneself worked up over the worst case scenario.
On another note, I heard back from the surgeon. Such a sweetheart, he apologised for the delay, which was all of 36 hours from when I sent my message. His words were "Bactrim may not give the best coverage against the pneumococcal bacteria but I will check with [infectious disease specialist]" He hasn't answered my question about whether I need to take these antibiotics for life, so I am going to take that as a yes for now and hope it changes over time.
He did say to go ahead and try the lower dose of doxy, but that if it continues to cause a problem then another drug will be necessary. I love how seriously he takes patient quality of life. He has never expected me to just live with unpleasant side effects just because I've had a complicated health history.
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He hasn't answered my question about whether I need to take these antibiotics for life, so I am going to take that as a yes for now and hope it changes over time.
Oh, I really hope you won't need to take them for life.
He did say to go ahead and try the lower dose of doxy, but that if it continues to cause a problem then another drug will be necessary. I love how seriously he takes patient quality of life. He has never expected me to just live with unpleasant side effects just because I've had a complicated health history.
Sounds like you've found yourself a gem of a doctor!
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My favourite GP whom I saw back in the states, a lovely South African, used to end many of our appointments with "Stay off the internet!". It's so easy to get oneself worked up over the worst case scenario.
;D My transplant surgeon told me exactly the same thing when my transplant started to fail and I would come in and say, I read on the internet there's this new drug in America that can hallt rejection...
He told me no NHS trust in UK would pay the price for these drugs at development stage and that it wasn't as simple as that...
A little knowledge is a dangerous thing!
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;D My transplant surgeon told me exactly the same thing when my transplant started to fail and I would come in and say, I read on the internet there's this new drug in America that can hallt rejection...
He told me no NHS trust in UK would pay the price for these drugs at development stage and that it wasn't as simple as that...
A little knowledge is a dangerous thing!
Ha, excellent! Great minds and all that (theirs and ours!)
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Just for yur info, Bactrim or trimethoprim/sulfamethoxazole (sulfa) is very commonly used in US. I dont know where the doctor in your area got his info on it not being available. It is still first line med in the US for UTIs and works well for a lot of infections and chronic use and prophylaxis. It works best against gram negative bacteria but can be used for other types too if they are susceptible. It is safe for long term use unless you are allergic to sulfa.
Ask your doctor about it. It has fewer side effects then many others. Again, everyone reacts differently. However since you have used it successfully in the past , that bodes well. I would push for it, especially if the Chicago doctors are in favor of it. Sometimes old meds work best . They are tried and true.
Thank you for the kind words.
I need to thank you, obsidianom, because at your recommendation, I did ask Chicago about Bactrim and the transplant infectious disease specialist said YES!!! I had just assumed that Bactrim was off the table as they had prescribed it before but didn't mention it as a possibility this time around. It might be a battle to get the UK GP to prescribe it as I mentioned that they don't routinely use it here (supposedly) but if I successfully convince them, no more doxycycline!
I am overjoyed! Many thanks for the suggestion!
Still hoping to get to London because I believe that in researching the trial and reactions to the trial I may have discovered the answer to why I am suddenly coming down with every infection under the sun. I am hoping that this doctor will be willing to discuss my theory and tell me if it makes medical sense. If not I could email my surgeon, but I always hesitate to contact him if it's not immediately medically necessary.
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No, no, no, a billion times no!!!!!!
I feel a cold coming on, my throat is really dry. I just took my temperature and I HAVE ANOTHER FEVER. About 99.5.
I never got the doxy script filled and am paranoid that I just let pneumonia bacteria back into my system. I see my doctor before work on Friday - I want to take Bactrim, or really anything but that drug that will ruin my ability to work. I don't know what I'm going to say to the GP, if I'll be honest or not. I hate that little kid feeling of being scolded by medicos. I'm not someone who is prone to nervousness about disease, but I am getting wound up here. :(
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Oh cariad, I'm really sorry to hear you might be sickening for something. I don't blame you for feeling wound up. Do you think you should try to get an earlier appointment?
Get well soon! I hope this will just magically go away. :cuddle;
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Rest, fluids, Tylenol, positive thinking. What's to stop you from filling the prescription today?
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It seems to be just a cold. I've been diligently drinking my apple cider vinegar and water. (:puke;) It cheers me to think of the rhinovirus sizzling in an acid bath. (Hmmmm. Perhaps this is once again affecting my brain....)
I see the GP in two days so there seems no point anymore in getting the prescription filled. Oh, Jeannea, it was 9:41 PM here when I posted last. The pharmacies I know of in our area shut at 8PM or earlier although in an emergency I'm sure there's a 24-hour one in one of the major cities near to us. By near I mean 15-20 miles away. So that was why I didn't jump and go fill it - not motivated!
I think it's at its worst today, which is not terrible. Teachers' unions took industrial action (again) so my younger son and I got to have a lie-in as his school was shut for the day. Aidan's school operated as normal. Hopefully the extra bit of rest will do the trick and I won't be sniffling tomorrow at work. :waving;
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Cariad, you do make me titter!
Hope you feel much better tomorrow...glad the strike allowed you some precious sleep :2thumbsup;
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Iona, I've been thinking about you and hoping you're completely recovered from your own latest health challenge. Please tell us how you are doing if you get the chance.
Well, things are slooooowly moving forward. I've been contacted by Guy's Hospital and need to make an appointment with their infectious disease group. I also have a dermatology appointment (that needs to be rescheduled, but at least I am one step closer to having a few worries addressed).
I am frustrated about this antibiotic nonsense. I must have misunderstood something the doctor said because I realised that it's been two months and I still don't have a prescription for Bactrim despite the GP saying I could have it. I thought maybe he had thought he had given me the prescription but didn't? I was nervous even getting the prescription from him as he seemed to think it was the same as clotrimizole, and unless I am irreparably turned around on this, that is wrong.
So I rang the medical centre only to be rung back the next day by the GP saying he was going on holiday for 10 days and that any other doctor there could help me. So I rang again, a doctor rang me first thing in the AM over my week's holiday and I missed the phone. Phoned back, they said he *might* call back, jumped in the shower, which is of course when the doctor chose to try again. At this point I told Gwyn I was going to invoke my sanity-preserving rule: if doctors make any treatment whatsoever too difficult to obtain, I give myself permission to blank it. Yes, I know this won't be a popular statement here, but there it is. So I rang back a third time and told them that I am almost never available to answer the phone during the day, could we please remove the talking-by-phone step? They said I could come in for a med check that afternoon with a nurse practitioner and she could prescribe whatever I needed. "I'm not on any meds, there's nothing to check" seemed a reasonable statement, to which the receptionist said that my prescription stated that I needed a med check in mid-May. "You mean the prescription that I never received?"
So, I went down there and, no word of a lie, the nurse practitioner had no idea what Bactrim was, was clutching one of those med books like a security blanket and kept repeating the word 'Bactrim' in a questioning tone, but she seemed to be mispronouncing it, splitting the syllables incorrectly no matter how many times I repeated it for her. "Bact-rim? Bact-rim?" over and over and over. I said "It's a sulfa drug" and "It's an old, common medication" numerous times, but nothing helped. She finally explained that the GP was not going to prescribe it, that he wanted Guy's to prescribe it instead. OK, fair enough (not really, my previous GP fearlessly prescribed it without all of this palaver).
I have to make an appointment down in London within the next two weeks despite having scarcely a spare moment between now and mid-July. I really don't want to take a day off as I hate forfeiting the salary, but I think that will be unavoidable. Oh, well, I should be grateful that I am getting exactly the care that I asked for, and I am, truly.
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What a bunch of screw-ups. I hope the people in London are better able to help.
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Thanks, Jeannea! I go down to Guy's next Wednesday. The appointment says I'm to go to the chest clinic, though. Chest clinic? Is that even a thing? Don't have the energy to deal with it right now so am just going to go down there and hope it will sort itself out. Somehow it always does. I'm bringing the tubes from Northwestern with me and going to implore them to help me with that, too. Apparently, Louisville needs to be forewarned that the blood is arriving. I don't think there is a hope in hell that this will work out for them, but perhaps I'll be pleasantly surprised. I remember now that during the trial they had to have staff available to begin work immediately on the incoming blood samples, and it would take roughly 14 hours so they would all have to work through the night until it was finished. Very time sensitive. FedEx International is not nearly as precise as the American version so this may end in disappointment.
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I am going down to London tomorrow. No idea if this is even the correct clinic or will do me any good whatsoever. I suppose I just want to firstly get the damn Bactrim already and secondly discuss what it is that I may have done to myself by participating in the trial. I need to speak to someone who doesn't just pretend to know what I'm talking about, and I don't believe there are many doctors in this country - any country - who can do that right now.
Had a unique situation at work a few weeks back. It is GCSE season (or was) and we had one regular who would always come in, order a pot of Assam and tell us about her tests. I work with an unusual crew for a tea room. One co-worker is an engineer by training. He's one of these that seems to know a bit about everything, and can be rather pedantic when he thinks he knows more about a subject than the other person in the conversation. Most who know him suspect there's something off about him - his social skills are weak, but he does seem to realise that it's something he has to work on, and I like him as a person, I've just accepted that he will often wander off in the middle of a conversation, and make tense little noises whilst I'm speaking indicating that he has something to say next.
So, a few weeks ago this woman was prepping for her exams and saying she wanted to eventually work in stem cells regenerating organs, or making it possible for those with spinal injuries to walk again, or similar. She went on for a bit about the miracle of wiping out waiting lists and giving someone a perfectly matched kidney. I thought for a moment if it was appropriate to mention myself, and finally decided that if she's really interested in this work it would be wrong to just stand there silently. So, I gave her the 50p tour of the state of stem cell transplantation today. My co-worker walked in toward the end, had an absolutely stunned look on his face, inhaled as he does when he's about to grace us with his superior knowledge and then very pointedly checked himself and changed his tone to enquiring rather than lecturing. He literary said "people on dialysis have to.... I mean, I'd heard that people on dialysis have to watch how much they drink?" I said absolutely, except when they don't. I drew the line at saying the word 'urination' in an eating establishment, so I just sort of talked around it by saying it depended on the type of dialysis and how much function the person retained. Don't know if the girl got anything out of the discussion in the end.
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Good luck with your trip to London Cariad. I hope you are able to get what you need.
That is too funny about your coworker though. I feel lucky that I work at a stem cell company, so people actually kinda understand. The company also developed a treatment for GVHD, so when I tell them I had it, it has the effect of giving me a little 'street cred' so they don't get irritated that I'm only there part time lol.
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You're funny, anyway good luck tomorrow, I do hope you get the Bactrim too
Love, Cas
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I have two friends very much like this fellow of whom you speak! One realizes his deficit in social skills and has worked diligently over the past 15 years to improve. The other is not quite so socially awkward, except for being pedantic. I can well imagine what that conversation must have been like.
Good luck on your trip. May you get some answers and some Bactrim.
:grouphug;
:grouphug;
Aleta
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I hope the trip to London helps. Keep us updated.
That's a really sweet story. It sounds like he was trying hard to show he knew you knew more.
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Well, that could have gone better.
I am pretty sure I've now been officially flung into the NHS black hole of despair, or something. Yesterday I was trying to find a train ticket down there and flatly refused to pay the nearly 70 quid for a return ticket to London Bridge. I investigated as many options as possible and decided I'd try a trick we've used before - drive south until I'm just inside the London underground system, then park up and tube the rest of the way.
Everything was going swimmingly - I had found advice on the internet that Hillingdon is the best option for this manouevre, so I am bombing down the M40 smiling at how clever I am when I hit a solid wall of traffic a mere 3 miles from the park and ride. Before I knew it, I was so delayed that I never would have made it to my 10:15 appointment. As I was stuck in traffic I asked Gwyn to ring Guy's to ask if there was any point in me continuing on. I decided that until I heard otherwise, I would go down there anyhow and hope that they had also been delayed and would still see me. Then my horrible SatNav sent me in the wrong direction.... twice.... and I got to the station only to see "Sorry, car park full" scribbled on a sign. I puled over and tried at least a dozen times to ring the department and ask what to do, or at the very least warn them that I wasn't going to make it. If I did reach someone they would just transfer me back to the phone menu. Gwyn had the same experience when he tried, and I finally gave up and turned back home. Gwyn emailed the doctor I was going to see who wrote back one word "thanks". Sarcasm? Perhaps, no way to tell.
So I am walking away from this situation. The letter they sent me basically said that if I didn't turn up they'd never speak to me again and I'd have to go back to my GP. I feel bad about letting Joe (surgeon) down, but it is only sodding Bactrim and they just won't hand it over. As much as I'd like to meet this doctor at Guy's and see if she can offer any assistance, I cannot afford to gamble a day's salary, the price of a train ticket, and the petrol just to try my luck again when I suspect she won't be able to enlighten me any further about the long term consequences of this transplant.
Sigh. I got such a nice woman on the phone when I rang Guy's a few weeks ago - the charming, competent ones are there, I just cannot reach them and my frustration has got the better of me.
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Thanks for all the support, ladies! Shame I have no new information to offer.
Jeannea, I agree there was something sweet about my coworker's response. He does try, and ever since I've realised that he isn't trying to be rude we have a good time working together. The chef is a Polish woman and one day he was clearly trying to impress both of us with his knowledge of Polish cuisine - he got the same self-satisfied look on his face that my younger son gets when he knows he's done something well, where he glances over at people in the room to make sure they've noticed what he's done. It is charming in its way, even on a 36-year-old.
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:banghead;
How are you feeling now?
Don't worry about the 'blacklisting' nonsense remarks from the NHS. If you still want/have to make an app in Guys you could try to arrange that by phone, and be proactive by "advising" the only time you will be available for receipt of a phonecall (so Doc doesn't waste precious time (did work a few times, no garanties of course) ,and you won't miss the call...... Doc can arrange the app in Guys, and the Bactrim if you still want/need that.
Good luck with everything, and lots of love, Cas
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Thanks, Cas! Weirdly, I have already received another appointment date, and it's for later in the morning which should make it easier to get there on time. Perhaps the doctor herself sent my info for rescheduling because I don't think Gwyn or I ever officially canceled the appointment.
I also have to schedule a blood draw for the trial. I can only get it drawn on specific dates, and I have to tell them which day I will have it done. They don't like pre-booking these appointments here, it's a weird system that many people complain about, and it doesn't work well with the way America does these things. It was nice to talk to Northwestern, though. The current research coordinator and I talked at some length about the trial and the differences in our healthcare systems and I feel I have been updated somewhat on the state of the research.
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Sounds promissing, and I'm very glad you feel more informed about the trial.
Good luck, and love, Cas
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Glad you have another appointment!
Is there anything you can share about your trial? Like you I just love to hear about the trial differences and find the whole thing vastly interesting!
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Is there anything you can share about your trial? Like you I just love to hear about the trial differences and find the whole thing vastly interesting!
I wish I had answered this earlier as I remember very little about that conversation now that it's been a couple weeks. The big news is that they are now being funded by Novartis - yes, the Myfortic people. Talk about hedging one's bets! (Spell check recognises Novartis but not nephrologist? Odd.)
The PBSC conditioning that this trial uses is proprietary, and they have been criticized for not freely sharing that information, especially since it seems to work very well indeed. My doctor has no personal financial stake in this so I doubt it was his decision to keep any description of that key component out of the scientific literature. It was disclosed to me who did stand to gain financially because participants should always be made aware of that information.
We talked about the trial entering phase III, but I believe that happened some time ago. They are now collaborating with other hospitals across the country to bring this procedure to more and more patients. Perhaps Novartis is interested in acquiring a patent on the procedure? Dunno. I know the first trial I looked at entering was for Belatacept and being done at UCSF, and I've been following the results of that off and on. Belatacept is an infusion that supposedly has no side-effects (that seems unlikely to be completely true, but I've never been on it) and has shown promise for allowing patients to come off all other drugs, but you do still get these infusions every 6 weeks or so. Last I read, Belatacept had been acquired by Bristol-Myers Squibb, was in Phase IV, but it had been placed in their 'orphan drug' division, which cannot be good news. I would love to ask Joe (surgeon) what he thinks of Belatacept, I don't think he's aware of how close I was to enrolling in that trial. The doctor was willing to rewrite the protocol for me to participate, the problem was that they were trying to do it as a double blind study so receiving Belatacept was not going to be a sure thing and I wasn't willing to risk being assigned to the control group.
I love having access to such fascinating information and learning what they really think of each other. It is so competitive. Next time I see Joe, assuming there is a next time, I will have to ask him what he thinks of the Hopkins trial. I imagine it will be brutally honest and if he sees any flaws in it, he will point those out. I would bet money that you would find the same reaction if you were to ask your doctors about Northwestern's study.
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You are right about them criticizing them for not disclosing the proprietary information. Before I started this my surgoen and I had talked about the northwestern study and he did mention that...that no one knows exactly what they are doing to the harvested stem cells, and that it was always subject to corporate whims since they were the ones paying for it. A few months ago he had mentioned that the company had been bought out, so they weren't sure what was going to happen next.
I also heard a couple things about a patient or two in the northwestern study I probably shouldn't know. If you finally clean out your inbox I can PM you lol =P
The Hopkins study is all being funded by the immune tolerance network. I am still the only participant at this point. Their inclusion criteria is extremely strict and rejecting people left and right. One doctor said they had set out to answer a few specific questions, and too much variability would make it harder to answer. I was told a lot of people were waiting on the results of this study. I am almost to the drug withdrawal part. I have to pass by biopsy test on the 30th of July and then they can start it.
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Oh, I had also read an article about NY Presbyterian starting their own program like the one at Hopkins. When I asked them about it they had said a colleague had actually left to go there. I told them quite frankly that I thought that was a scary prospect. NY Presbyterian does not have a bone marrow tx program at all. At Hopkins I felt relatively secure because they have been doing bone marrow tx for a long while, have a great set up for it, and their nurses are all very familiar with the process and problems that can arise.
The double arm transplant recipient at Hopkins also apparently received stem cells from the cadaveric donor and is only on sirolimus. I asked about that as well and my BMT doc said it was nothing like this trial at all, and they just give the stem cells and hope it works through some black box mechanism. Sorta reminded me of the Stanford trial where no one kept donor cells for more than a couple weeks.
Do you ever just stop and be amazed that your blood DNA is a perfect copy of your husbands? You even have XY DNA now!
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You are right about them criticizing them for not disclosing the proprietary information. Before I started this my surgoen and I had talked about the northwestern study and he did mention that...that no one knows exactly what they are doing to the harvested stem cells, and that it was always subject to corporate whims since they were the ones paying for it. A few months ago he had mentioned that the company had been bought out, so they weren't sure what was going to happen next.
Thanks for the comments, it's wild getting to talk to you about this since we are obviously hearing from opposing sides in many respects. This is exactly the kind of criticism I expected. They bicker like children sometimes, it's funny and predictable. I think your surgeon suggesting that they are subject to 'corporate whims' is hyperbolic and a smidge misleading, though. The PI owned her own company that took on much of the financial risk of this and therefore deserved in my opinion to reap any financial reward that could develop from it. It's a capitalist country, she didn't create these rules. (I have no personal stake in this beyond being really grateful to Joe and all the effort he's put into helping me, so that should not be read as angry nor defensive.) As far as I've ever heard, most of the funding came from ITN and the Department of Defense. I had not heard that the PI had sold her company but I guess that would explain why her name doesn't seem to be listed on the trial details any longer. I see the cell conditioning as no different from creating a new drug and insisting on exercising your rights to patent the formula. I do suspect that if Hopkins gets anywhere with this trial that they will eventually have to get corporate funding, there is so little available in the way of public funding. :(
I also heard a couple things about a patient or two in the northwestern study I probably shouldn't know. If you finally clean out your inbox I can PM you lol =P
One step ahead of you! Cleaned out my inbox a week or two ago, so I'm eagerly awaiting the gossip on Northwestern, though a small part of me is petrified that some of the dirt will be about me. That could be awkward.... :)
The Hopkins study is all being funded by the immune tolerance network. I am still the only participant at this point. Their inclusion criteria is extremely strict and rejecting people left and right. One doctor said they had set out to answer a few specific questions, and too much variability would make it harder to answer. I was told a lot of people were waiting on the results of this study. I am almost to the drug withdrawal part. I have to pass by biopsy test on the 30th of July and then they can start it.
Yes, this is part of the job though, they must find that balance. Put another way, broader inclusion may make it harder to answer their questions, but how many questions will they be able to answer if they are never able to recruit another participant? They need to address this, decide on a solution and move forward with the study already.
Wow, 30 July. Not long now. Fingers crossed for you. I didn't have to have a biopsy before coming off myfortic, but I did for prograf. I do not react well to biopsies and will never have one again. Best of luck to you. You know I'll be waiting to read your updates!
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Do you ever just stop and be amazed that your blood DNA is a perfect copy of your husbands? You even have XY DNA now!
I honestly don't give the transplant much thought these days, but I guess that is a little crazy that I cannot be identified by my own blood anymore. I believe I already had some XY DNA because I've had two boys and I read somewhere that if you've ever had a boy you will have traces of their DNA left in your system. Perhaps having them helped pave the way for my body to be more accepting of the stem cells and kidney. Pregnancy is one of those biological mysteries, at least that's what we were taught at school, because you have this foreign material (for lack of a better word) in your body and yet your system does not attack it. It can create antibodies of course, but for whatever reason your system does not press those antibodiea into service.
I suppose that my immune system has now been taken over by my husband's DNA, lucky me, he's one of those people that fights off all illness with ease. Although come to think of it, it has yet to serve me as well as it's served him, witness the bacertial meningitis that started this whole topic....
I do so hope that this doctor has answers for me next week (assuming I make it to the appointment). One of the huge drawbacks of these trials is that doctors outside the trial no longer have any idea how to approach you. This woman was recommended by Northwestern, so hopefully....
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Ah, I don't think I ever mentioned that shortly after writing this last message I received a letter through the post informing me that they had changed my appointment to mid-August. Except we are planning a trip out of the country for that week, and they even set it for 10AM which would force me to travel during peak hours. Because I can never reach them by phone I'll have to email and explain that I won't be keeping that appointment and will need yet another new date.
SO I am right around six months past when I was supposed to be starting a lifelong course of antibiotic, and still no bactrim. Must resist urge to invoke sod-it-all rule....
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Go for it. Throw fits. Dance naked in the streets. Whatever gets their attention.
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Gah! That has to be frustrating. I hope you get in to see this doctor soon :(
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I tried to find the parts of this conversation that summarized what is going on, and scrolled through many amusing pages, but I still missed the relevant details. Lots of discussion of car parks and phone calls.
Something about wanting to go on a lifelong prescription of Bactrim.
Gregory is on a life long prescription of Bactrim. He got it by getting pneumoccal pneumonia and losing his first transplant. I don't recommend that course of action. This is some kind of trial?
Anyway,
hey Cariad!!! You rock!
xn