i've heard there's been some research on this with long-term successful transplants...if anyone has info....please let me know!

One of the keys to have a lasting transplant it's to don't quitting or lowering the immunosuppressive medications.

i know that's the conventional wisdom, but i've heard of studies done on people with long-term grafts lowering or ending immunosuppressive treatment with no ill effects...
after 19 years on these drugs i'd like to decrease the wear and tear to my body by lowering the dosage...if it's possible...

I wouldn't lower or stop taking the medication. Everybody I heard stop taking the medication end up loosing their kidney. What medications are you taking?

Hello july20th1988. I hope you are well. I don't know what you've been taking all these years, but if your docs have not suggested, or not "allowed" you to taper your meds over the years, then you need new docs. ALL of the long-term transplant patients I know (and I can think of about 20 off-hand) have had their drugs tapered significantly over the years, some to almost nothing. I only know of one person who is taking no meds 10 years post-transplant. He rec'd a kidney from his identical twin, and he's only been off the drugs for two years.

Even the newbies like me (9 months post-op), begin drug tapering in the first few months. I've already cut the Myfortic in half, reduced my Prograf by 6 mg daily, and cut my prednisone to just 5 mg daily. I've also been able to stop the Aycylovir, and will stop Bactrim in September.

I feel immensely better the fewer drugs I take, and my docs tell me that I will actually be healthier if I can get down to just the amount I need to prevent rejection.

I will tell you that I am a very pro-active patient, and if the subject of drug tapering doesn't come up in my usually rushed meetings with the doctor, then I bring it up. I ask if we can TRY, and the answer is usually yes. It means an extra blood test or two during the month, but that's a fine trade-off as far as I'm concerned.

Before I had my transplant, I met with a group of "oldies," people who were 15-25 years out from transplant. One of them, who became a friend, has had her kidney for 16 years, and she only takes .35 mg of prednisone a day. That's it. She's been on that dosage for 5 years, and hasn't had a single problem. But she gave me some sage advice before my surgery. She told me that I might have to fight for every drug reduction I got, but that I should never stop asking to try different things.

So that's my advice. If you're not hearing what seems reasonable from your doctors, then find another doctor.

And I'd like to know from Gbrlandr where he took all his meds all the time, and if so, what was the reason for a third transplant?

Forgot to add something...in addition to the tests I assume you do to check the levels of anti-rejection meds in your system, there is also a test called the: Cylex immune cell function assay. As I understand it, it is designed to provide a picture of how well your body is using the immunosuppressants you are receiving, and whether you are getting enough or too much. Hope this helps.

Hi nodi4me,

May I ask you at what age you had kidney failure? I had it when I was 9 months old. I had what now it's known as Echerichia Coli (sp?), on those days in my birth country was Hemol1tic Uremic Syndrome. I had been 3 months in the hospital, passed 15 days w/o urinating anything. As something new but danger, I had an open peritoneal dialysis. My mother who was only 28 years old asked if I have 2 kidneys, why can't I give one to my daughter? and they laugh at her. Donating kidneys was something unknown, at that time, in my birth country. My grandfather as a doctor told my mother as I wasn't going to live more than 5 years. Do you think my parents gave up? no, they didn't. When I was 6 years old that my kidneys were getting bad again, my doctor comment my case to a doctor from Argentina's Capitol, BS.AS. and told him to passed my case to him. At that time hemo was too agresive for kids and peritoneal was only done in a hospital who couldn't go everybody. So even my mother's kidney wasn't too compatible, it was the best chose at that time. At that time only was given Prednisone as anti rejection medication and was given a very strong medication that was taken from Europe at the time of the transplant. For 4 months the kidney worked great. Then begin my calvary, almost every time I went to clinic I had to go back to be given for 3 days big doses of Prednisone. I lived like that or worse till I came here on Oct.81 that I was put on CAPD. After 6 long years and because I was in hemo "thanks" to my dialysis doctor a good kidney came. I was 15.5+ when I received that kidney. At that time, at UCLA medical center was used for anti rejection Cyclosporine, Prednisone and Inmuran. W/o any acute rejection I almost lived with that kidney as the "oldies" you were talking about. Almost 15 years it lasted and we can say for sure if the doctors would take better care I might still had it. They always did the level of the Cyclosporine in the blood but seem they didn't check it. Once they lower it suddenly and that opened my parents eyes as they realized that doctors were not controlling the level in the blood. On October 1st 2002 I had no choice but to go back to hemo. Because I had so many antibodies for having had 2 previous transplants and mix blood tranfusions, getting a cadaveric transplant would be almost impossible. I had someone I met by internet who seem was willing to be my donor and my oldest sis who was willing to be my donor since she was 15 years old. The guy from the internet disappeared and my sis was/is overweight and I knew she never would loose the weight to be my donor + she got pregnant which just delayed everything. I don't know how I received an email from someone that mention living donors, w/o thinking these people could be relatives. I reply her telling her my situation and asking if she could help me somehow. I delayed to notice that the place she send me had/has a "Looking for" forum. When I find out, I wrote to ever willing donor who was my blood group. After alerting a lot pf people who wanted to sell their kidney, many who seem to change their mind I found the right person to be my donor. The problem at that time was the hospitals on not accepting internet donors. Aster 2 years of trying to find a hospital almost w/o hope. We found the hospital which was going to be done this transplant. Well, I a;so had to wait for my donor school vacations to come the first time to meet the team and have the last test done and months later to do the transplant. When the doctors knew when the transplant could be done,they scheduled my treatment to lower the antibodies (which couldn't be done with a cadaveric one). I had the transplant last June 5th. I'm taking Prograf, Myfortic and Prednisone. I'm still adjusting Myfortic and specially Prograf.

Answering your question, I took them in my house. But I don't understand how it help you where I took my medication. What might help you it's what I told you above. Also what help you were people as me who were use as a guinea pig to find out everything now it's known. Many times I had to suffer for things doctors did to me just for them to learn.

Hope I had answer your questions. I hope now you understand what I told july20th1988. For that reason she has had that kidney for 19 years. By the way, I'm not a him.

Hi Gbrlandr.

My God, you have been through hell all your life because of your kidneys! I am so sorry that you've had to go through all of that!! What an amazing story you have, and what an amazing person you must be!! I am in awe of all you have dealt with!

I meant to ask WHETHER you took all your meds, not when. Sorry, fingers slipped. I asked because you seemed so adament about july20th1988 not lowering his/her drugs, so it made me wonder if perhaps you had first-hand experience with kidney failure related to not taking all of your drugs, that's all.

I am so glad you were able to get another kidney last year. I hope this one lasts you 30 years!!

Hi nodi4me,

That's ok, it did "bother" me your quest. because I do have experience but you didn't knew that. Anyway, just want to tell you that feeling sorry doesn't help us. Encouraging might help. No, I'm not an amazing person. I am or was those kind of person who got angry because this happened to me. Usually my parents misunderstood this as me wanting to happened this to other family member while I really meant why me?

Yes, I did took all my medication but didn't realize how important was to keep the schedule. Fortunately, I still have my mother who is very good at giving medication at time. Once I went to my country of birth and took a lunch bag with an alarm on it to remind me when I had to take my medications.

Living with kidney failure it's difficult and more because of it's side effects. As I lived almost all my growing age w/o a good working kidney, I'm only 4.2ft. I want to do many things as driving which it's not easy since it's difficult to find a car for my size. I'm not married but get pregnant is another thing I can't do, etc.

By the way, the transplant was last month, not last year but I also hope this last forever and I wish the same for all organs recipients.

Gbrlandr

Hi again Gbrlandr -- I think we ALL get angry when this happens to us, it's just a natural response to the situation. And it's one of the five stages of grief we all go through. I recall very well how devastated and angry I was when I was told that I needed an immediate transplant. But as you said, we just have to pick ourselves up and go on.

I try not to complain to my family of the drug side-effects, and my worries, etc. That's why this discussion board is so valuable to me. It's good to know there are others out there going through similar things.

And I hope that when I write something dumb, or get something wrong (like your transplant date), everyone understands that the drugs have truly scrambled my brains!

Hi,

I know of one guy who eventually quit taking meds. His kidney, from his mother, worked for a long time, but eventually did fail. He was a very early recipient of a transplant and it seems the docs didn't have the benefit of garnering info from a large group of recipients. They kind of lost track of him and when they got back in contact, they were apalled to find out he hadn't been taking any meds, and, as it turned out, his kidney was starting to fail. He has since had two more transplants, the most recent of which is working very well.

I was very surpriesed to know what a huge range of drug dosage is out there. It seems to be very individual. It seems like I can't really go below 6 mg prednisone per day or my body notices it has foreign organs. Cellcept got reduced pretty rapidly. I did nag my doctors about the predinsone because of the stupid weight gain stuff. I was grateful for even the 1 mg reduction -- it made a 5 lb difference, which seems to have helped me be able to take a little less blood pressure medicine.

I got to quit taking all of the antibiotic stuff, went back on after a moderate rejection (pancreas) episode, then went off again. I know some people are on Bactrim basically for life.

Nodi4me, what side effects are you still having? What meds do you take?

Annette

Hello Annette,

It is amazing to know that people are taking wildly different drug dosages, not to mention a whole slew of different drugs! Of course, I always want to be that person who is only taking 2 mg of Prograf and .25mg of prednisone, but you know how that goes...

I think a lot of that is just that every transplant center has it's own protocols based on what seems to have worked for their patients over time. It also seems to depend a lot on whether the transplant center is linked to a major research facility (like UAB where I had my tx), because those facilities do constant research on anti-rejections meds.

Anyway, that's not what you asked, is it? Sorry, the writer in me can't just write a sentence or two!

I'm taking: Prograf (6mg/day); prednisone (5mg/day); Myfortic (720mg/day); Bactrim (400mg/day); Nexium, Synthroid, Diovan-for BP (80mg/day).

Short term, I'm back on Acyclovir, after a bout with cold sores (herpes) in my EYE, and iron supplements (325 mg x 3/day) for iron deficient anemia.

I'm supposed to get off the Bactrim at my 1-year check-up. Probably the Acyclovir, too, if there's been no more herpes, and the iron will be reduced then as well.

Side effects, some of which have gotten better with each drug reduction include: hair loss, diarrhea, cramps, headaches (almost daily), dizziness, trouble concentrating and focusing, being unable to mentally find a word I need, etc. The brain changes are the most troubling, and I'm afraid that's something I must learn to live with. I'm hoping that as I get back in shape after nearly two years of little activity, I will get stronger mentally.

What about you? What are you taking and what side-effects have you experienced?

Hi

I'm taking a bunch, but doses are fairly low.

Mornings I take 250 Cellcept, 4.5 Prograf (I widh that one would both drop and stabilize. It has been more than a year since tx, but the best I have been able to do id maintain the same dosage two months in a row.), 6 of prednisone, 40 of protonix (that one worked a lot lot lot better than Nexium for me -- diarrhea went away when I switched.) I am also ona weekly Clonidine (.2) patch for blood pressure supplemented by 50 to 100 mg of Labetelol, depending on my blood pressure (try to explain that to a hospital pharmacy that wants to control your meds. AAAArgh!)

At 3 p.m. I take 20 mg Lasix, .1 of Florinef, Magnesium oxide 400 mg, a multivitamin, 10 mg of Lipitor and 30 mg of Sensipar.

Evening drugs are 4 mg Prograf and 250 mg of Cellcept.

When I started out I was also on Valcyte, Dapsone, and Diflucan. Bactrim makes me throw up, so luckily I did not have to take that horse pill. I was also on Senna and a feeding tube for about a month so I could quit dry heaving and keep my meds down.

The side effects I experienced where the Prograf shimmy, diarrhea (Nexium), the emotional accentuation of the prednisone -- a really rough one when my hormones are kicking in. After I started taking the six 3 p.m.s The prednisone stuff really mellowed out. I suspect it is either the Lasix or the Magnesium that is helping there. All I know is that if I miss the 3 p.m.s I start crying with joy or sorrow or anger or nothing.

I was very lucky with the hair stuff. Mine actually seems to be healthier. This I attribute to eating more (read: too much) and a greater variety of food. My carnivorous side really took over after tx which folowed about 5 years of vaguely vegetarian fare.

The menstral cramps following tx are horrendous, but at least my libido, which was totally absent, is back. Probably thank the steroids for that, too. If I get remiss on my water intake I get leg cramps. Of course, since the blood sugars are noth high ever, I'm not thirsty. I drank more on peritoneal dialysis than I do now. I really really have to work on that.

I do drink a lot of caffeine. A little might help you with the headaches?

Do you have any idea where the dizziness comes from? I get that too sometimes. I think it is the Prograf, but my levels have been coming back in range. I, too, have to struggle sometimes to pull a word out -- a bit troubling since I've been a newspaper reporter -- a wordsmith -- since I was 14. I kind of figure there was some minor brain damage as a result of 7 hours of surgery, but I credit that for not wanting to smoke -- a most excellent side effect -- since I woke up. Haven't had one since tx. Wanted one twice (My mom had a stroke and my foster daughter got pregnant.) Didn't succumb.

Mostly I don't have side effects very regularly. Sometimes a very upset stomach. I take 1/2 a dose of phenergan for that and then sleep for half a day because the stuff wipes me out, but otherwise I would be resting with my head on the toilet seat all day. There are other anti-emetics. If you are having periodic problems with vomiting, ask your docs if you can have one or another on an as needed basis. They do prescribe phenergan for women who have unremitting morning sickness, but it is a pretty powerful med.

I think there is also some eye stuff, but it is really hard to describe and may just be normal aging of a diabetic. My wonderful eye doc and I keep pretty close track of it, but I just need a lot of light and good contrast to be able to function well. I drive in the day, but feel a little iffy about night driving, so avoid it as much as I can.

I guess it is all livable, particularly now that I have energy back. That was a long time coming. pseud-grandsons coming into my life helped with that. One is yopur basic definition of contentment; the other regularly sparks with pure joy. Both are the smartest most beautiful one-year-olds in the world. I think it is great to have "grandkids" since I don't have any kids of my own, although kids of the heart count just as much. the 24 year old married mom calls us her boy's local grandparents, since the other sets live about 3 hours away. The 17 year old single mom introduces me as her friend and encourages me to buy teal colored glitter nail polish for my 45 year old hands. She's the one I would have as my daughter if I could choose these things. We live next door to her, and she uses our house as a calming reprieve from a somewhat dysfuntional family life. My heart melted one night last winter when she was draped over the recliner filling out applications and she said "Do we have a phone book?"

Our actual foster daughter is no longer with us. Sad, but necessary. The 17 year old mom, a former volatile recalcitrant student of ours, reassures us that we are good parents, and that the foster daughter just "didn't listen." She surprises me quite often. She is slated to turn 18 and move into her own apartment in a town about 25 miles away, so I am preparing myself for major empty nest syndrome. Do you think the state will allow me to build a trolley along the interstate?

Actually, all this baby and daughter stuff is a wonderful side effect of the transplant. Wouldn't have had the energy or the new hope-fullness before the transplant. It was nice to get a rejuvenated spirit along with the pancreas and kidnsy...

Allison

Oops

I shouldn't do this at 2 a.m., should I?

You are Allison. I am Annette. My ame is Annette, my name is Annette, my name is Annette...

Can I blame this on side effects?

Annette

Wow Annette, you have a LOT going on, both with your meds and with your life! You know it's strange...the more people I "meet" on this website, the more I find that so many of us have lots of other unpleasant stuff going on before and after our transplants. It makes you wonder how much of our health problems are related to the various stresses in our life. My mother-in-law is constantly warning me about "suppressing" my anger at hubby, or whoever, because it will make me ill. Of course, she's such a nut about so many things, that I tend to ignore her, but I do begin to wonder....

Anyway, reading your list of side-effects made remembers some of those that I'd forgotten. Don't know whether to hope that that's a sign of aging or it's yet another side-effect! I too had the prograf tremors, but they've mostly disappeared. If I forget to take my meds on time, I will have the tremors for about 30-45 minutes.

As for the dizzines...I wish to heck I knew. I've had some problems with that for years, since I lost hearing in one ear. But what's going on now (just the past few weeks) is different and more disturbing. I've actually almost falled down a few times. It's like the floor suddenly disappears from beneath me, tho more often, it's like my head just rolled off my shoulders for a minute. I have wondered if maybe I'm taking too much BP medicine. I did manage to check my BP after one dizziness spell and it was quite low, but I'm going to have to keep a better record to know for sure. I also find that the more my head hurts, the more dizziness I have, and for the most part, nothing really helps the headaches. I can't afford to take something that would knock me out (timewise) and I hate the way those drugs make me feel, anyway.

I recently had the Cylex Immune Function Assay and it showed (I think) that my immune cell funciton is in the toilet. Now that may be exactly what the tx docs want, but considering how low it is, it may also mean that I can again lower the prograf and that that would help me feel better. I'm waiting to hear from my doctor right now. Will let you know what he says.

Must run, got a deadline, and everything takes longer now that my brains are permanently scrambled!

Hi Allison,

I think you are right about blood pressure shifts causing dizziness, but one doc did say during this most recent hospitalization (the only one since transplant) that Prograf can do that, too. For me, it feels like my head is kind of drifting above my body. I haven't been able to step backwards for awhile because of diabetic nerve damage in the bottoms of my feet, but this is different and more episodic.

I know stress can cause "stuff" to manifest, but I attribute my health problems to 43 years of having a malfunctioning pancreas. And to the smoking I've now given up for good. If I'm annoyed, I go yank bindweed out of the garden. If I'm sad, I borrow one of the babies -- impish smiles are immediately contagious and there are no known vaccines (thank goodness).

My mother's stroke was actually a blessing -- she has no desire to smoke or drink any more, and she regained almost all of her language and ability to walk. A true miracle, since I thought I was going for a funeral the morning after it happened. The stroke also seems to have stripped away the great majority of masks she put between herself and others, so I can actually have a conversation without hidden meanings with her. Nice.

The former foster daughter is more worrisome. I know our family is a very good place for her to be, but we can't take her back because she comes from a huge, very manipulative extended family (Her dad has 15 siblings, 9 or 10 of whom live in this small town) whose interfering influence was what made us give her up. The 15 year old who impregnated her ("true love" you know) lives one block from us.

There are so many children in this town who think that having a baby makes you an adult, and that adulthood is about being able to do whatever you want whenever you want with no consideration of consequences (Party all the time). These are kids who are not even legally able to use a blender or a knife if they work at a fast food restaurant, yet they think they are capable of raising a child. Aaaaaaargh. Can't vote. Can't drive without someone in the front seat with them. Can't earn enough money to pay rent and utilities and aren't even old enough to sign the contracts you need to sign to have your own household. I know! Let's have a baby or two instead of graduating from high school.

Well, they are only 2 months in. My general experience is that the reality of this being something more than a fairy tale doesn't hit for another five months. Maybe they will come to their senses and decide to give the baby up for adoption.

I just keep crossing my fingers for the best. Frustrating that there is nothing else I can do, but banging my head against the silly wall won't make it fall down. No fault of my head for that.

So, you see, I do have a few things -- both good and frustrating -- to distract me from side effects. Tests are good, so, if I can determine there is something to change that will make some side effects go away, I'll do that, otherwiase, not too bad a price to pay for all the possibilities that have opened up.

17 year old mom wants to take baby boy to our annual community celebration. How can I say no to the invitation to accompany her?

Annette

Hey, I have the "head drifting above the body" thing, too, always accompanied by a feeling of being unfocused, can't concentrate, etc. I HATE that. It makes it nearly impossible to get anything done in any sort of reasonable time frame.

As for the 17-year old's invite to the community celebration...you could always play up the transplant and drug complications thing. "Honey, thanks, but I just don't feel like getting out much right now." Privately, you can say to yourself that the stress of all these kids having babies has got you laid up!

When I was in my 20's I volunteered for Big Brother/Big Sisters and I was one of the first white volunteers to be paired with a black little sister. It was not quite the cultural shock you might expect because my family and I had always worked with people from all types of backgrounds in our family business. But the thing that did shock me was the attitude by so many in my little sister's social network that having a baby somehow was a status symbol, especially for the boys! For the girls, I think many of them thought that having a baby would give them someone who would love them unconditionally, just for themselves, which was something I rarely saw in that community.

I'm still waiting to hear from my doctor about the Cylex immune function test. I hope and pray that it will result in lowering my Prograf again. I cannot take these headaches or the dizziness much longer.

Hi Allison

I know exactly what you mean about the status symbol stuff. Siring a child seems to be all that for guys around here. Now, being a father has no status at all, because that involves not being able to go out and party and get more girls -- you have to give up the image of being able to do whatever you please. I think our foster daughter is not really interested in hsving the bsby love her. I think she is much more interested in having the boyfriend be permanently connected to her. She has never had any positive parenting role models so she does not know how to bring up the care and selflessness to take care of a helpless human life. The pregnancy and the resulting baby are simply tools. Being back home with her biological father is not a good idea, except that maybe it will result in her getting back into the social service system.

Many people here would say something about differences in culture, refering to ethnicity. It really isn't about ehtnicity. It is about poverty and lack of respect for education and the disfunctional claiming of victimization as an excuse for almost anything. COlor doesn't matter. Poverty -- of pocket and of spirit -- does matter.

And, of course, being a normal teenager who thinks she or he knows everything doesn't help.

If I am, seeing this -- and I truly believe this -- cultural decay (blow off adults, the law isn't for me, power comes from the end of your arm, don't connect, do drugs and unprotected sex because you are bored, just plain general lack of maening) in a town of 8,000, what must it be like in cities like Philadelphia where college bound kids get murdered?

Of course, since Harvey and I both work with kids at (or a little beyond) the fork in the road, we also get to see the turnarounds. Four students whom school administrative types basically thought were throwaways will be starting at four year colleges this fall thanks to long patient encouragement.

17 year old mom convinced me to go. I need the exercise and I get it trying to keep up with her 40 mph strolling gate. She's short, like me, but she books. I think her son will have to be a NASCAR driver to recapture these childhood "walks." I love that girl.

Why is it taking so long to get your test results? I have the basic ones on the same day the sample is drawn, and others (like the tacrolimus levels) don't take more than two or three days. I sure hope the results will help resolve whatever is going on. I know it is really a pain to be frequently discombobulated. If you've got a new life, you should be able to focus on it.

I take two blood pressure meds -- kind of like the ultralente/humalog insulin combo. I use a patch that gets changed every week, then supplement with labetelol depending on twice daily BP checks. If I'm in the 110s I don't take any extra, if I'm in the 120s I take 1/2 pill, and if I'm in the 130s I take a full pill. I have permission to dose myself up to 3 times a day with up to a full pill each time. Docs normally object to this sort of thing, so might be difficult (or not appropriate for you) to convince them. My BP is doing pretty well right now and I have no idea why, but it seems to help the dizziness.

Well, need that warm bath tonight -- 3 miles total today walking with 17 year old mom.

Have a good night. Nag your docs about the results. Hope things work out for you.

Annette (Hey, I signed my own name tonight. Progress!}

P.S.,

I tried the "I need to sit for a minute," ploy. She bought me a delicious vitamin drink...

Annette

Hey Annette - I don't know where "Allison" came from, but my name is Carol. Though there are days when I'll answer to just about anything!

I think if you and I and all the like-minded folks were in charge we could fix the world, or at least make sure everybody understands exactly what's wrong with it!! I've been saying for years that no amount of testing or forcing teachers to meet ridiculous goals, etc. will fix our broken educational system. The problem is not in our schools, but in our homes, where too many parents just don't get it, don't give crap, and don't teach any sort of respect for self or others. Ah well...I'm preaching to the choir.

Got an e-mail from my tx doc this morning. He is two states away, so I get tests results here, then the lab has to fax them to the doc, and then they have to filter down to my file in his office. Anyway, he got back to me pretty quickly and has suggested both a reduction in the Prograf and my BP meds. Yahoo!!

It's a good thing, too, because the 24-hour a day headaches are about to make me crazy!

I'll let you know if it helps. Keep on keepin on!