OMG, this fever....

[willowtreewren]

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.

 

Aleta

[ToddB0130]

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.

[cariad]

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.

 

Thank you, Poppy! Seems to be always the way with us - get a year's worth of drama over in 3 weeks.  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.

 

[cariad]

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. 

[cariad]

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

     

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! 

[cariad]

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! 

[cariad]

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.

 

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?

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. 

[cassandra]

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

[cariad]

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?

[ToddB0130]

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

[obsidianom]

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?

[cariad]

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. 

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.

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.

[Sugarlump]

I hope you are feeling a little better today. 
I understand what you feel about hospitals (and doctors and nurses etc not to mention that ****** NHS helpline. 
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 

[obsidianom]

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.
 

[MooseMom]

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.

[cariad]

I hope you are feeling a little better today. 
I understand what you feel about hospitals (and doctors and nurses etc not to mention that ****** NHS helpline. 
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!

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 

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.

[cariad]

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.

[MooseMom]

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?

[obsidianom]

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.

[boswife]

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 

[cariad]

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. 

[cariad]

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.

[cariad]

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!

[cariad]

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.

[willowtreewren]

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