5 Months post transplant, learning about your drugs.

[bountyhunter_ga]

Is the cure worth the end result?
In the course of receiving Kidney Donation Five months ago I was blessed with a new life. No one told me I had to be retrained however.  It was bad enough getting through all the twist and turns of adjustment to a new body part, but there was more.
About the time I figured the new Kidney was ok and working fine I had a new problem. The drugs that allow the new Kidney to work inside an old worn out Norwegian body, something else reared its ugly head. Prednisone, one of the anti rejection drug used to keep my system working with the new parts. That’s kind of like putting a Chevrolet motor in a Ford. Once the parts learn to get along and play well together things go pretty good.

What side effects may I notice from receiving this medicine?
Side effects that you should report to your doctor or health care professional as soon as possible:
•   eye pain, decreased or blurred vision, or bulging eyes
•   fever, sore throat, sneezing, cough, or other signs of infection, wounds that will not heal
•   frequent passing of urine
•   increased thirst
•   mental depression, mood swings, mistaken feelings of self-importance or of being mistreated
•   pain in hips, back, ribs, arms, shoulders, or legs
•   swelling of feet or lower legs
Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):
•   confusion, excitement, restlessness
•   headache
•   nausea, vomiting
•   skin problems, acne, thin and shiny skin
•   weight gain
This list may not describe all possible side effects. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
For those of who felt so dam good and had the world by the tail after the transplant, its quit a letdown to have someone tell you that you are being a pain.  The Medication used to help the Kidney adjust to its new surroundings is nothing short of a miracle drug. My suggestion to those that have had to use this drug is to study the side effects long before its use.  Learning the adjustment on your own can be overwhelming to say the least.
There are several other drugs that we take to merge the Kidney into a strange environment such as or body to the new kidney on the block. Just try to imagine how it was when you were a kid and had to transfer to a new school in a new state with a new parent. It’s quite similar in nature.
It’s just part of the whole healing process that one who has been chosen to receive a new Kidney or other body part needs to learn and fix for them self. This makes for a better life with the people around you.

[okarol]

I am sorry you've had trouble with the steroids. Have they considered reducing or discontinuing the prednisone? Many transplant centers reserve it for rejection rescue. Jenna is on a steroid free protocol, but she did have a big dose during her rejection a year ago. I hope you are feeling good despite the side effects!

[Deanne]

The idea of going on prednisone scares me. I was on it several years ago to treat my kidney disease and the side effects nearly killed me. I had no quality of life. I'm going on the transplant list soon and it's an issue I will need to talk about with the transplant team. I'll accept a transplant, but if I can't handle the steriods, I might need to think about moving to be near a center that offers a steroid-free protocol. It'd a hard trade-off to consider. My current job pays well and has great benefits (great insurance).

[edersham]

I'm 11 months post tx on a steroid free protocol but I was on prednisone for 4 mos when they thought the cellcept was causing an extremely low white blood cell count. It was a low dose of prednisone(10 mg) but I found it to be a little slice of hell as I gained 25 lbs and my blood sugars went completely nuts. I have tremendous respect for those who tolerate higher doses.  Anyway, it turned out that either valcyte or bactrim was the wbc culprit so 3 mos ago I got off the prednisone and back on the cellcept. Ive lost 15 lbs and regained control of my blood sugars and blood pressure. If I ever have to go back on prednisone they may as well duct tape my mouth at the same time. Tx is still a miracle given all the bumps in the road.

Ed

[Chris]

I'm a little confused about the post.
Didn't your center tell you about possible side effects before the transplant when you first looked into getting a transplant?

[chris73]

we know how you feel about the prednisone side effect.I used to read every label to see what side effects they may have,i just look at it like this:  Any side effect that meds may cause beats the hell out of dialysis anyday handsdown! ..Hope you are able to deal the side effects........Chris

[bountyhunter_ga]

Chris your right about dialysis, that was bad. Its just a new problem that doesn't hurt. I'm just doing some pretty weird stuff and my temper is extremely short. I'm hoping in a couple months to wing off this stuff . Thank you everyone we have come a long way and I don't want to mess this up.

[Ang]

any and all side effects from transplant drugs i reckon i copped,with the prendisolone i copped  very bad vision,could see fairly clearly long distance,short distance could'nt read messages on my cell phone.
through all the tests it was found that  a massive build up of fluid behind the eye balls .
promptly dropped the prendisolone from 17.5 mg daily to 10 mg.
now been on 5 mg daily for the 2 months or so.

i now wear reading glasses, but thats been coming for a few years

[RichardMEL]

I'm with Chris - a little confused. When I was in hospital after my transplant and they had me on all the fun stuff to the max - cyclosporin, celcept, preds etc etc the pharmacist not only sat with me going through EACH and EVERY med detailing the main side effects, but he also gave me the CMI (consumer medication info) printouts that we mandate in oz, and list all the expected, and more severe side effects. Fun reading (I love the "male breast enlargement" part of one of them).

I'm on 20mg and yeah it's not fun. I haven't had the mood problems (I've asked around if I've ever acted weird or 'roid rage' or anything!) but I have DEFINITELY had the hunger/weight gain. I try to counter with willpower (to just not eat!) and exercise(lots of walking). I am somewhat successful will the willpower, but the problem I find is the extreme hunger usually hits me at some time like 11pm or something... and you just don't want to prepare something healthy.. so what do I go for? the bread/toast and cheese or some other unhealthy snack.... now my tummy looks like.. well.. OK I'm only about 3-4kg over my dialysis dry weight, but still it is noticible and I don't like it!!!

Doc told me the protocol is to reduce after 3 months, so I have another month to go. I hope it goes down by more than 5mg but I fear they will go to 15mg for some time. Still, some reduction is better than none.

Anyway bottom line for me is that these kinds of things are pretty minor compared to doing dialysis and I'll take it. I mean every so often I get cyclosporin hand shakes and stuff that sucks (try putting a lid on a coffee with the shakes... that did not end well ).

As they say.. transplant is just another form of treatment for kidney disease with its own set of challenges.... we just have to deal as best we can.

GOOD LUCK!!!

[Sugarlump]

 I really liked your postscript Richard... that transplant is just another form of treatment for kidney disease with its own set of challenges...we just have to deal with it the best we can.
I'm trying, I'm really trying. I had a particularly difficult time post transplant (2nd Dec10) with kidney not working, rejection and then problems with the drugs. Had lots of changes, my stomach not tolerating any of them well, particularly Cellcept and Predisolone and now my creatinine levels rising again. Toss up between toxicity of the drugs or more rejection. They're talking another biopsy. Having had a previous transplant fail slowly after the first 3 months I'm afraid its happening again.
I can cope with the weight gain, bloating, terrible shakes, fatigue, stomach upset and depression/mood swings if only this kidney will keep working.
Terrible insomnia too since its gone midnight again in the UK.
Find it difficult to express my fears and stay positive. What can I do to make it work with me not against me.
Do you reckon diet helps, with the kidney function or managing the drug regime and if so, what. BROCCOLI? beetroot? NUTS?
Good to talk to you. Hows your creatinine doing?

[RichardMEL]

Hey sugarlump. Hang in there... I do hope your new gift isn't failing though given your history I can certainly understand that real worry. It seems that the medical staff are doing all they can to keep you in some kind of shape and the biopsy is the obvious thing to do (I've had 2 since my transplant just a week before yours so I know the feeling!).

My creatanine is doing great. 136 currently And no rejection for me.. I very much hope that it is the same from your biopsy!

I got a really good night's sleep too!!

  Wishing you can too!

[Chris]

Speaking of it's not a cure, it's a treatment, I was always told that by my transplant clinic and the first clinic I went to. When I was at a transplant seminar last year in a discussion group just for pancreas transplants, a doctor calls it a cure. To me he is an idiot for saying that and giving a false impression. e will probably be there again, but this time I am going to question his rationale about that.