Just A Few Questions

[renalpenguin]

Hey everyone! My doctor referred me to a transplant team- guess I'm on my way to begin the transplant process (which I know is very long!) I have a couple questions (which I'll ask my transplant team eventually, but my doctor says it can take a few months before I'm contacted, and I want to get an idea what they'll say before then).

First of all, I've been on prednisone already, and I hate it!  I'm really afraid of being on it forever as an anti-rejection med. I was wondering what an average dose is (right after transplant and later for matinence)?

Also, I'm already immunosuppressed, but a nurse said "it's worse with a transplant". What are the precautions for avoiding germs after the transplant? I'm already very careful (washing my hands all the time, avoiding crowds) but are there stricter precautions than that (like not traveling or eating out- I'm kind of concerned about that.)?

[susan parry]

i received my transplant on august 5.  i was told to avoid crowds and sick people.  my surgeon says a mask (over my face) wont protect me but i still wear it for my own piece of mind while in a store. 

i dont take steriods (some hospitals dont give them after transplant and some do is my understanding).  i am on 3 different meds, prograf, cellcept and rapamune.  (very expensive). 

i was told to avoid eating salad out as you dont know how well it was washed.  also no unpasturized items, no cold meat (has to be microwaved first).  i can go out to eat but i have not.  its flu season and i cant get the flu shot (too close to transplant) so i would rather avoid people for now (rather be safe then sorry). 

hope this helps

sue

[BrandyChloe]

I'm close to transplant (hopefully by the end of the year) so I can't comment on the drugs but the infectious disease doctor I met with as part of my transplant workup said no more salad bars after transplant (no guarantee they are keeping the food at the proper temperature), no more fresh deli meat as there is no guarantee they are cleaning the blades properly between slicing (she said the pre-packaged deli meat is fine), no undercooked or raw meat. She said the best thing when eating out is to be sure everything I eat is cooked.

I have a kidney buddy who had a transplant in July who ate a chicken salad sandwich a co-worker brought in for lunch one day and she was sick three days! She figured it hadn't been kept cold enough (she immediately went to the doctor to be sure it wasn't a kidney issue but all was well.)

[kellyt]

I was placed on about 40 mg of Prednisone while in the hospital and discharged at 30 mg.  It as a slow decline and currently, one year after transplant, I'm on 5 mg.  I would be lower, but the problem I'm having with a lymphocele caused me to hold at 5 mg.  My doctor is going to try to get me off the Prednisone 100%, but we'll see.

We ALL hate Prednisone.  It's the "redheaded stepchild" of the pharmacy!  ha ha  And I can say that cause I'm a redhead!!! 

Also, as far as the immunosuppressants and precautions after transplant - I wash my hands, keep away from sick people, especially kids, I'm more careful around animals, don't eat rare meat, make sure my other meats are cooked thoroughly and use Chlorox wipes when cleaning.  That's about it.  I've never been a sickly person anyway.  I don't know if that has anything to do with it.   Since transplant I haven't had anything but 2-3 bouts with allergies and that's it.  I'm not crazy weird about cleanliness, but it's on my mind.  I always wash my hands when I come home from shopping or any place outside the house.

Don't let them scare you our of a transplant.  I started the process to get on "the list" in Oct 2007 and would have been on the list by December, but I had to have a tooth pulled and I had to wait until January 2008 to do it.  The "committee" only met every other Wednesday and I was listed on Feb 13th.  Not too long.  I tested three people before they finally accepted my sis-in-law.

It has all been worth it (even the Prednisone, which I HATE).  I was able to miss dialysis (at least for now) and I'm extremely thankful.

The side effects of the immunosuppressants are far worse than I imagined, but it's all been minor (major to me, but minor in reality). 

[cariad]

I never followed any special precautions with my transplant. Oh, wait, I don't get live vaccines - that one the doctors and my family were always on top of, but other than that, give me any list of  post-transplant"don'ts" and I can pretty much guarantee I've done them all. I think these precautions are more for the first year after the procedure.

Of course you can eat out, travel, live your life. Whether something can be described as "worse" or not really depends on what doses you end up on of which meds, and how they make you feel. Can you ask about steroid-free protocols at your center? Those are pretty standard now. To answer your question, a maintenance dose would probably be 1-2mg/day. If you are that unhappy with the meds once you get your transplant, demand to have them changed. It may take some searching, but someone will eventually listen to you.

Please try not to think about these things in terms of the rest of your life. With the speed of medical innovations, I doubt any of us will be on the same drugs in 5-10 years or so (unless we happen to get something that works perfectly straight away). Some transplant patients (a small minority) go off their drugs entirely and do just fine - not recommended, but it has been done. You just never know what the future has for you.

Good luck!

[renalpenguin]

Hey everyone,

Thanks so much! You've totally made me feel better. I've begged my doctor to send me to a hospital with no-steroid protocols, and he said he'd try his best.  (But one or two miligrams of prednisone after a year or so would be heaven for me- I've been on prednisone forever to prevent kidney failure, and not only did it not work, but I've been on as much as 50 mg a day for six months!) And I thought my nurse was probably just being dramatic (like always) about "it's so much worse" but I just wanted to make sure.

[murf]

How do you know if you are close to a transplant? I have no idea when mine will arrive. All I know that after the phone call, try to get to the hospital ASAP. My specialist calls it kidney lotto. There is no queue but it has to match well. Maybe this just happens in OZ.

[kellyt]

From what I've read here you will receive a call and they will tell you that you are either 1st, 2nd or 3rd in line and they will call you back.  Apparently, when they tell you they have a kidney for you you don't necessarily have to get to the hospital ASAP.  You have time to get yourself together.  Someone who has received the call can give you a better answer on that.   To my knowledge you don't know when you are about to get your kidney.  Some people receive the call and don't get that kidney but then receive another call in a few weeks or so.  Are they at "the top of the list"?  I don't know.  Rest assure they will match the kidney up to the most qualified (matched) recipient.  Good Luck!  I hope you get that call SOON!   

[BrandyChloe]

My brother has been approved to donate a kidney to me but he wants a last meeting with the doctor before giving a definite yes. That meeting is on November 27th. Hopefully we will be able to schedule the transplant soon after.

[kellyt]

That's great Brandy!  Good Luck!

[RichardMEL]

How do you know if you are close to a transplant? I have no idea when mine will arrive. All I know that after the phone call, try to get to the hospital ASAP. My specialist calls it kidney lotto. There is no queue but it has to match well. Maybe this just happens in OZ.

in OZ it's a little different to what kelly posted. Basically "the list" as it were is nationwide, so it doesn't matter what hospital you are "attached" to (as in renal unit) - well it does sort of matter, but I'll get into that in a little bit. Anyhoo so the donor pool is the whole nation - which is good (and saves the whole issue in the US of listing with multiple hospitals in different states and all that) - but with such a low rate of donation that we have it's obviously still a problem. So the "list" (and I write it in quotes because it's not really a list which has any kind of order to it, excepting your time on dialysis, because each time a donor organ comes up the names on it are all shuffled according to blood group match, HLA match, time waiting, etc - then the red cross(who run the transplant operation) pick the top name on the list(probably the top two or three as a few backups, but I'm not certain on that part) and call the renal team responsible for that patient(or more likely whoever is on call at that hospital, since they'd be part of the responsible renal team). Then THEY decide if they will accept the organ for transplant. This is what I meant before about it may matter a bit which unit you're attached to - as some teams/doctors are more conservative than others and may take less risks - so may not accept an organ if they feel there's too much risk, yet another doc might accept it. In the end though you're really in the hands of the medical system and those that decide. In my case I just have confidence that they will make the best call they can when it comes to an organ offered for me and when they accept it it will be the best chance I have. So anyway when the organ is accepted by the renal team THEN they call you and tell you to get your butt to the hospital - so basically if you're called, it's pretty much that they have the organ for you rather than you're a backup or whatever.

I've not yet had a call in nearly 4 years on the list, but I have been informed that I've been matched to donor organs before, but they went to people who had longer time on the list. That's fair - that's the way it should work.

Yours will come soon murf - I am sure. When you least expect it as they say.

[kellyt]

Thanks Richard!   

[cariad]

In the US, the queue is more or less linear by region as far as I was told. You are listed, you are placed in the pool with others of your blood type, and when a kidney comes up, it will go to whomever matches in that region who is next in line. Cadaver kidneys are only matched with recipients of the same blood type, because otherwise the wait for an O would be much longer than it is (since anyone of any blood type can receive an O)

The only exception is a "perfect" match - a 6/6. A kidney that comes available is first matched nationally and if anyone is a 6/6 match, it does not matter where you are, that kidney goes to you. Only about 5% of candidates jump the queue, according to UCSF.

So, if you are not sensitized and you get a call for a kidney that is not a perfect match, that would indicate that you are near the top. In fact, there was an interesting article a while back about an economist that studied the poor decisions that can be made when a surgeon or a patient knows an individual is near the top of the list. I suspect that article was posted here when it came out a few years ago, but I will try to find it and post the link.

That's my simplified understanding, anyhow. I've never received a call, and I'm not really waiting on one now.

[murf]

This site is brilliant. I have learned more about Kidney disease in the last two months than in the last four years. Thanks to one and all for the great info,

[st789]

Same here, the information here is so helpful, since doctors are so busy with...next....

[cariad]

Here is the article I was thinking about: http://www.slate.com/id/2175642/

I think some of the recent innovations like "extended donor criteria" consent forms may solve a bit of this issue, but it's an interesting comment on human behavior.

[Romona]

I got called about 6 weeks after being listed and was in no way mentally prepared. I guess it was good in a way because I didn't think too much. I tried to think of a reason to say no but couldn't come up with one. I had a UTI at the the time and was half way through my antibiotics. The coordinator called me back and said the surgeon wanted me to come down. He thought I had enough treatment. They tested me and I was cleared. Try not to think too much about average wait times ect.. if it matches it matches. There is no way to predict when or where.

[kellyt]

Same here, the information here is so helpful, since doctors are so busy with...next....

You know, I loved my Neph.  Never had any problems with him.  But I realized after finding this site is that he didn't give me a lot of information.  THEN I realized it was because I wasn't asking for any information.  I think he could kind of tell that I was just showing up to my appointments.  I was compliant with my meds and all, but I was seriously in denial - for 14 years!  When I found this site I started asking him questions - questions with specific words in them that made his ear perk up.  I think he realized at that point I was ready and the information came pouring out of him.  Now, would he just sit and chat with me for as long as I asked questions.  Heck no!     But at each visit, which was at that time monthly, I took 2-3 more questions with me.  I felt more prepaired in the last year (2008) than all the years from 1994 to 2008.

To be more specific, I was asking what my creatinine level was (never did before - never cared); what my GFR was; could I get copies of my labs; would he do hemo if he were in my shoes; asked about buttonholes; asked about nocturnal dialysis, etc.  He realized that I had finally made it to the party.   

[RichardMEL]

yes, a 6/6 match (very rare, but it happens) cuts across the list here too. Since they're pretty rare it doesn't really make much difference to the averages I reckon.. and because they are so rare if it comes up it comes up. I think I'd do a cartwheel if I got a call saying they had a 6/6 match for me - I'd know the chances would be that much better for a long lasting transplant. The reality though I know is it's more lilkely to be a 1 or 2 out of 6 match.

I've often said it here but I definitely feel that information is vital to those of us in this sort of situation. If I have more understanding about my situation, and the factors that can affect it, and what it all means, then *I* can make informed decisions about my treatment, and it makes things like dietry and fluid restrictions that much easier to handle because rather than just having some dietician go on about do's and dont's - to actually understand WHY it is so important makes it easier to handle. For me anyway. I think I'm the only one in my unit who is excited about monthly bloods and I pester them to find out what the results are when they are in. Even if it's not good I *need* to know for me... and I'd rather know ASAP than for some appointment because I can make changes as soon as I can which will hopefully be better for me overall.

So questions are good. Getting answers is good and understanding is priceless.

[murf]

I think I'm the only one in my unit who is excited about monthly bloods and I pester them to find out what the results are when they are in. Even if it's not good I *need* to know for me... and I'd rather know ASAP than for some appointment because I can make changes as soon as I can which will hopefully be better for me overall.

I'm the same when it comes to monthly blood tests. Love to see how things are going. I often take the sheet home and google any information that I don't quite understand.