About 6 years ago I was diagnosed with Polycystic Kidney Disease a genetic disease which causes cysts to grow in the kidneys slowly shutting them down. I was very fortunate that in April 2017 before I had to start dialysis a suitable kidney became available. Since my transplant I have seen my creatinine levels swinging wildly up and down to my consternation. It seems to me the post kidney transplant management is more worrying than the actual transplant.
I would like to hear from other transplant patients their post transplant experiences.
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I'm sorry to learn about your cr levels swinging wildly. What are your transplant Nephrologists saying about this? Have they changed your medications, doses or made any other changes? I do not have experience with this personally, so I'm unable to share any thoughts here. Perhaps you will hear from others soon. Thanks for writing in, as there are always individuals out there looking for people who are experiencing situations just like them. Stay strong and be sure to get your doctor's to explain more too.
I started on 6mg of Adaport immunosuppressant but have since reduced to 3mg twice a day. The concentration of tacrolimus in my blood has been too high. I have noticed that when the concentration drops my creatinine drops. I am tolerating the drugs reasonably well. My consultant has told me being an older person I do not need as much immunosuppressant as a younger person especially as my transplant has a 000 mismatch.
RichP48NKF AmbassadorNKF Peer Mentor• in reply toRichP48
Three months is not usually enough to stabilize your meds.
Further reduction in the dosage of my immune suppressant has resulted in a further reduction of my creatinine by 20%. My transplant consultant is on the right track when he says each patient needs a personalised medication plan.
Yes I am very strict on taking the correct dosage at the appropriate time. I have installed an app called Transplant Hero on my iPhone where I can record all my meds, the dosage and when they are to be taken and the phone rings an alarm to alert me to my next meds.
I have had yet further small reduction in my anti rejection meds as my consultants believe they can get my creatinine level down even lower.
Hello. I also have polycystic kidney disease and received my second transplant 5 years ago. My creatinine goes up when my tacro level is high. I also had troubles with creatinine jumping up right after this transplant and a biopsy showed the tacro level had caused toxicity. My meds were lowered and my tacro level has to be kept around 5. Whenever the tacro level goes up a bit, so does my creatinine. A change to cyclosporine probably wouldn't help. I took cyclo with the first transplant and had the same problem. Your doctor's will get it adjusted. Good luck!
Thanks for your comments. I am now 9 months post transplant and my tacro level has settled around the 7 level and my creatinine has also settled down. I did have a scare a couple of months ago when one of my cysts burst and kept bleeding for 6 weeks. It has now stopped, but I am told this can happen from time to time for PKD patients.
I had recently gone through kidney transplant surgery, its 4 month, still medicine are not stabilize, based on the tac level, doctor is changing the dose. But post transplant my life got changed in terms of food habits and etc. i have to take precaution not to get infected. In initial period, Infection and rejection risk are high.
Also Initial 6-9 months are so crucial, we have monitor all our kidney parameters on regular basis like Creat, Tac level, Weight, water intake and Urine Output.
Also my doctor has suggested me one application to monitor all these application "Total Kidney Care" its available on amazon app store.
I was also diagnosed with polycystic kidney desease at the age of 22. My transplant took place on the 1st April 2016. To-date I am looked after by my Nephrologist who sees me regularly on a 3 monthly basis. My medications has caused some issues like bone pain, osteoporosis and hair loss. The nephrologist makes adjustments with my meds so that I don't have to endure the side effect of the meds. I am extremely thankful for my transplant, I am watchull when it comes to my diet. I am wary about lectins, salt and fizzy drinks as this also contributes to severe bone pain. You will find that there will always be medication adjustments during your post transplant. Drink lots of water, to bring your creatine down. Exercise, is very important. I do Pilates 3 times a week and walk the other 2 days. I hope this can be of vhelp to you.
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