Couple of little ol' infections

[RightSide]

I'm only in my 3rd month post-transplant--and already I have had two infections.  Both mild but still annoying. 

Late February, I caught a case of jock itch--of all things.    (My transplant doc looked at it and said yep, that's what it is.)  So I treated that with OTC sprays.

And now, just early last week, I caught a sinus infection: Sniffles, runny nose, blocked tear duct, thick discolored (yellow) post-nasal drainage.  No fever, so I'm just going to tough it out.

I suspect it may have been caused by a broken upper wisdom tooth that may be allowing bacteria to penetrate the sinus.  But I can't have it extracted yet, since I'm less than 3 months post-transplant.  (In case you're wondering why I didn't have the tooth extracted pre-transplant, it's because on dialysis my teeth were falling apart faster than my oral surgeon could extract them.  Some roots broke, some teeth loosened in their sockets.  As it is, I had eight teeth extracted in the 9 months pre-transplant.)

When I told my transplant nurse about all this, she didn't act surprised.  She said that it's common for transplant patients on immunosuppressants and prednisone to get some kind of fungal infection--whether it's oral thrush or vaginal candidiasis or something.  And she just shrugged her shoulders at my case of the sniffles--though my transplant neph ordered a test for BK virus just in case.

But I don't recall anyone ever warning me about these possibilities when I first applied to get on the transplant list.  Maybe they thought it was so obvious that it went without saying.  But I wish I had known in advance that I wasn't going to be in perfect health post-transplant.

Anybody else have similar experiences--low-grade infections the first six months post-transplant?   Or should I insist that my docs find a way to lower my immunosuppressant dose?

[jbeany]

Other than an a bout or two with the sniffles, no.  Of course, I was on IV antibiotics for almost 3 months with an abdominal wound, so maybe that just killed mine before they had a chance!

[Chris]

So they didn't tell you to wash out your nasals with a saline solution and if I remember the name right, bactrim for the nose. Names doesn't sound right, but starts with a B. I think I was prescribe fluctconasol (sp?) to also help, but I need to dig that bottle out.
 
I'm surprised they let the tooth part go. With such a recent transplant I would think that they would be more vigilant and have looked at it and sent you to someone they know who is familiar with transplant patients to take care of it.

[rsudock]

Throughout the 10 years of my transplant I would have bad colds/sinus infections and bladder infections. I also got ring worm from the gym as well....hang in there!!! I can't really remember catching anything too bad the first 4 months out though...but my memory isn't what it use to be since D.

xo,
R

[okarol]

They gave Jenna 10mg Mycelex, 4x per day - anti-fungal lozenge - for 3 months following her transplant.
They also had her on:
400mg Bactrim, 1x per day - anti-bacterial for 6 months
250mg Cipro, 2x per day - anti-bacterial - short-term
450mg Valcyte, 1x per day - anti-viral - 3 months

All of this was preemptive, to avoid some of the typical complications of immunos.

We monitor her labs carefully, watching the Tacrolimus and Cellcept levels each month so that they are not too high, and also being sure her white blood cell count does not go too low.

Were you given a similar medication protocol?

[cariad]

But I don't recall anyone ever warning me about these possibilities when I first applied to get on the transplant list.  Maybe they thought it was so obvious that it went without saying.  But I wish I had known in advance that I wasn't going to be in perfect health post-transplant.

Really? You don't think we tried to warn you on here? Aw, now I feel like I've failed the new transplantees.

There is a reason that most hospitals give prophylactic antibiotics/antivirals/antifungals. Were you not warned that you would be on those for probably six months at a minimum? Rachel mentioned the gym - I would add that HPV runs rampant in that environment, so if you are a member, buy yourself a pair of plastic/rubber sandals and wear them in the shower. Just remember that you got these infections before your transplant, and now the risk is elevated, but nothing to be paranoid about. My kids both contracted ringworm - two years ago it was running through the school system, last year it was lice, so far nothing this year but I won't be letting my guard down. Ringworm takes ages and ages to clear no matter how robust your immune system is, and it will leave a mark that may linger another year after you finally kill it. Home remedies usually work better than the prescriptions.Take a penny, soak it in apple cider vinegar and tape it over the site. My son complained that this burned, but it works. We alternated this with the prescription cream and finally killed the evil thing off. Some people swear by sea salt, but the theory behind it is the same - dry it out, poison its habitat by disrupting the PH balance. I never contracted it despite being on immunosuppressants.

Sorry you're having these issues, Rightside. I hope these infections are worth it to be off dialysis. Again, while it's likely that you contracted these from having a suppressed immune system, you cannot know that you would not have contracted this or something worse on dialysis. I was told that dialysis patients have low immunity as well, because once you are that ill, your body cannot put as much effort toward fighting disease. Oh, and you should always try to get your drug doses lowered. The worst that happens is that they say they don't want to do that at the present time. Good luck.

[Zach]

But I don't recall anyone ever warning me about these possibilities when I first applied to get on the transplant list.  Maybe they thought it was so obvious that it went without saying.  But I wish I had known in advance that I wasn't going to be in perfect health post-transplant.

What ever happened to informed consent?  Written, informed consent.

[cariad]

But I don't recall anyone ever warning me about these possibilities when I first applied to get on the transplant list.  Maybe they thought it was so obvious that it went without saying.  But I wish I had known in advance that I wasn't going to be in perfect health post-transplant.

What ever happened to informed consent?  Written, informed consent.

I am sure I signed something before the standard transplant part of my treatment, and I would hope that Rightside did as well. No offense meant, I am just not feeling the injustice here. Rightside, did you really expect to be in "perfect health" post-transplant? And you're only 3 months after surgery? By 3 months post-transplant I was only starting to let myself hope that I had not completely ruined my life. Maybe I'm cynical from life experience, but people die getting their tonsils out - surely you knew there were risks, some predictable, some that will utterly puzzle the doctors. Perhaps you are expecting too much from a transplant. The first year especially can be really rough. For most people, it smooths out after that, but there will be the occasional set back that can happen any time for the life of your transplant. With respect, this is comparable in my mind to having a baby then ringing the OB up at his first cold and saying that no one warned me that he would ever be ill. You sound like you are doing great. I know it's no picnic getting an infection, but try not to sweat the small stuff - save your energy for the bigger battles.

[RightSide]

They gave Jenna 10mg Mycelex, 4x per day - anti-fungal lozenge - for 3 months following her transplant.
They also had her on:
400mg Bactrim, 1x per day - anti-bacterial for 6 months
250mg Cipro, 2x per day - anti-bacterial - short-term
450mg Valcyte, 1x per day - anti-viral - 3 months

All of this was preemptive, to avoid some of the typical complications of immunos.

We monitor her labs carefully, watching the Tacrolimus and Cellcept levels each month so that they are not too high, and also being sure her white blood cell count does not go too low.

Were you given a similar medication protocol?

Bactrim and Famciclovir, but not Cipro or Mycelex.

Too bad. 
Cipro works great on bacterial sinus infections.

When I applied for a kidney transplant, they asked me what other conditions I had.  I told them "Chronic Sinusitis," but they didn't choose to do anything about that.

Even before I got ESRD, I would get frequent sinus infections ever since a particularly bad infection at age 35 permanently damaged my upper respiratory tract.

So now, if my current sinus problem continues much longer, I'll have to get a scrip for Cipro anyway.

BTW, I had asked my doctors about whether oral thrush is a possibility post-transplant.  They said yes, but that they don't prescribe Mycelex prophylactically.

And after I got jock itch, they said "Oh, of course!  For your transplant surgery, much of your groin area was shaved, resulting in little fissures in which fungi can take hold."  My attitude was "Dammit, why didn't you tell me that before you discharged me from the hospital???  I could have stopped off at any drugstore and bought an OTC antifungal spray."

Their attitude seems to be "Let's wait until RightSide gets an infection or some other complication, so then we can tell him how inevitable that was."

[RightSide]

Really? You don't think we tried to warn you on here? Aw, now I feel like I've failed the new transplantees.

There is a reason that most hospitals give prophylactic antibiotics/antivirals/antifungals. Were you not warned that you would be on those for probably six months at a minimum?

I meant that no one at the Transplant Unit mentioned the possibility of several low-grade infections.

And they have not prescribed any antifungals for me.

[cariad]

Really? You don't think we tried to warn you on here? Aw, now I feel like I've failed the new transplantees.

There is a reason that most hospitals give prophylactic antibiotics/antivirals/antifungals. Were you not warned that you would be on those for probably six months at a minimum?

I meant that no one at the Transplant Unit mentioned the possibility of several low-grade infections.

And they have not prescribed any antifungals for me.

Huh. This is Mass General we're talking about here?

My first transplant and after a rejection episode 9 years later I was given a rinse that they called "swish and swallow" to prevent thrush. It had a clean, sweet flavor that I appreciated as a kid. With the second transplant I received the dissolving tablets Clotrimizole and was on those for about 3 months. I was glad to be done with them because I would always forget to take them until last thing at night, and you cannot brush your teeth for 30 minutes after taking them, but they are bad for your teeth, so you must try to brush within the hour.

[RichardMEL]

They gave Jenna 10mg Mycelex, 4x per day - anti-fungal lozenge - for 3 months following her transplant.
They also had her on:
400mg Bactrim, 1x per day - anti-bacterial for 6 months
250mg Cipro, 2x per day - anti-bacterial - short-term
450mg Valcyte, 1x per day - anti-viral - 3 months

All of this was preemptive, to avoid some of the typical complications of immunos.

We monitor her labs carefully, watching the Tacrolimus and Cellcept levels each month so that they are not too high, and also being sure her white blood cell count does not go too low.

Were you given a similar medication protocol?

This is similar to what I had, though with some variation - they took me off the anti-fungal lozenges after about a month, and I only take Bactrim twice a week(?!) and I don't have Cipro whatever that is. The Valcyte is for six months... but the idea is the same - pre-empt any bad stuff (and the Valcyte for the six months is for CMV more than anything else).

I have the odd sniffle but so far nothing too major - knock on wood.