OMG, this fever....

[jeannea]

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.

[Sugarlump]

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!!!! 

[MooseMom]

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.   

[cariad]

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.   

Sugar, orange foods, huh? I worry that you listed 'fish fingers' under that description.

MM, thanks. 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!

[Sugarlump]

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!!!
 
You take care, hope you are going to be well enough to join us in Cambridge. Looking forward to meeting you 

[willowtreewren]

Keep getting stronger and better, dear Cariad! 

If orange food will do the trick I will send you a box of Chees-its!

 

Aleta

[cariad]

If orange food will do the trick I will send you a box of Chees-its!

Certainly worth a try!

[Sugarlump]

So what are chees-its? An American version of Ritz crackers???

[willowtreewren]

Sugarlump, they are small square "cheese" crackers that are VERY, VERY orange. I'm guessing the color comes from artificial dyes instead of cheese. 

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

Aleta

[Sugarlump]

Wow they are ORANGE!!!!! 

[cariad]

Wow they are ORANGE!!!!! 

Terrifying, aren't they?

[cariad]

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! )

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!

[jeannea]

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.

[Sugarlump]

C diff is definitely a bugger in UK hospitals, and related things like winter vomiting disease...

[obsidianom]

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.

[cariad]

C diff is definitely a bugger in UK hospitals, and related things like winter vomiting disease...

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!

[cariad]

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.

[obsidianom]

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.

[cariad]

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.

[obsidianom]

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.

[cariad]

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.

[MooseMom]

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! 

[Sugarlump]

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.

  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!

[cariad]

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!)

[cariad]

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.