Introduction

[KingP13]

Hey everyone how are we all? I'm two months into my transplant and feeling fine, just wanted to know how everyone else was handling it at that stage? Also new here and looking for likeminded people to talk to and share stories with and what not while I'm in isolation haha

[Hidden]

I had a transplant about a month ago, feeling ok, getting used to the meds. Not on prednisone anymore that drug makes you super hungry, you become an eating machine, I have clinic tomorrow, kidney is doing well, blood pressure is normal.

[KingP13 in reply to Hidden]

Nice! Glad to hear it!

[PostivelyJo in reply to Hidden]

What meds are you on now. I’m13 months in and still on Pred. Your post reminds me to push to get it removed !

[Hidden in reply to PostivelyJo]

I stopped prednisone after 1 month. I take tacrolimus and mycophenelate/cellcept

[Drdetroit]

Did you have a living donor or deceased donor? I had a deceased donor & I wasn't feeling real good for about 4 months . I still take prednisone after almost 9 yrs. The doctors said since I had 3 rejection in the first year&1/2 I have to take it. They did reduce it to 2.5 daily.Good luck with your new life. Be thankful for your gift & may God Bless

[Hidden in reply to Drdetroit]

I had a deceased kidney donor, my creatinine gradually came down from 500 to 85, it increased to 120 because the tacrolimus dose was a bit high, then it went down to 100 where it’s currently stable, I do visit the clinic once a week to see either the transplant nurse or doctor, and I get blood work done as well. Prednisone makes you real hungry, I felt like a t-Rex wanting to eat anything and everything, but glad I came off it, I was only on Prednisone for a month but I don’t know what the long term effects are for someone taking it so long, I know that it’s used to treat any acute rejection episode.

[Drdetroit in reply to Hidden]

Long term effects of prednesone are bone density loss. I do now have osteoperosis. It does make you very hungry for sugar/carbs. Being on a low carb diet is difficult

[WYOAnne NKF Ambassador]

Hope you continue to do well! I am 21+ years post transplant. My transplant was from a deceased 16 year old donor. I am truly blesses because my creatinine is stable at 0.9.I continue to take Myfortic (cellcept) and Neoral (cyclosporine). I was on Prednisone until about 7 years out, as I was having bone density loss.

We are here for you and would be glad to answer any questions you might have. We are not experts here, but can answer from our own experiences only.

I have learned that we are all different and react to meds and our transplant in different ways. Remember, if you have any problems/issues that you let your transplant team know. They can't help you with it if they are not aware.

Take care!

[Lifechanger1]

I’ll be 6 months from xplant on 12/2/20. Feeling GREAT! Creatinine before surgery, 11.78, since surgery a steady 1.18! I walk 2 miles every other day, and try to get to gym for some upper body training. Turned 66 this past August haven’t felt this good in years. My enversusXR has been lowered from 6mg to 3mg daily. My myfortic has been lowered by 33%. Appetite is great and I can finally eat as much pizza as I want, along with a bunch of other foods. Was an anxious time prior to surgery and was on dialysis due to my surgery date being moved from 3/2 to 6/2 because of COVID. Hope this helps....

[Hidden in reply to Lifechanger1]

I was on dialysis for five weeks prior to Tx in September of this year. All I remember is that my BUN was around 100. I chose PD because, at that time, I wasn’t sure if my living donor (my wife) would be approved. There was a chance I would need to wait five or six years for a deceased donor kidney. That’s the waiting time in Chicago.

Congrats on your Kidney

Btw, I know what you mean about Pizza :-). Unfortunately, I gained about 10 lbs from my hospital release so I’m trying to more fiber and good carbs. The first three weeks my wife snd I had the luxury of having mom cook for us. Too much good food in that time. I too walk every day. Hoping to get back on the peleton sometime soon.

[Lifechanger1 in reply to Hidden]

I left hospital at 166 pounds. My normal weight is 203. Between the dialysis and bad kidneys I lost a lot of weight. As of this morning my weight is 190.5. Still have a way to go but in no rush. Feeling great...and that’s what counts! Keep in touch and yes good goal to get back on the peleton soon!

[Hidden in reply to Lifechanger1]

Wow! Did you have PKD and a nephrectomy? That's a lot of weight to loose during hospitalization. They did the first ever robotic double nephrectomy and kidney transplant on me — at the University of Illinois — going on nine weeks. I HAD PKD and I was hoping when the removed the kidneys I would loose, hopefully, 20lbs from the diseased kidneys. One of the resident surgeons even told me that they were the size of Nerf footballs. It seems they were more like 8lbs together.

[Lifechanger1 in reply to Hidden]

Yes it was PKD. Mine was the size of a watermelon, about 15 pounds. The other kidney was a bit smaller. Still have large stomach, but no where as near what it was. I did lose about 10 pounds during dialysis. I had to eat high protein food and was getting a lot of albumin syrup to drink while at dialysis...nasty stuff 😩

[Hidden in reply to Lifechanger1]

oh my! The size of watermelon is crazy. Nice to have them out as it caused a lot of back pain. Once I was cleared for Tx — realizing surgery was a month away — I was terrible with my phosphorus (pizza, cheese and dairy). If the transplant would have been delayed I would have been in big trouble with PD nurse. After Tx my phosphorus has been low to low normal. I’m supposed to drink Diet Coke. Since I’ve been off colas since CKD 4, I no longer have taste for them.

[Lifechanger1 in reply to Hidden]

All my numbers were way out of wack. I am drinking Diet Coke to keep phosphorus levels normal. I very rarely drank soda. I am also taking magnesium citrate. Currently all numbers r in normal range. The left side kidney was not removed and that is what is creating my oversized belly. Bottom line....if I did not have xplant, things would be a lot worse. My son saved my life!

[Hidden in reply to Lifechanger1]

Awesome son! My wife was a living donor — part of a swap with a mother-daughter pair. Daughter Elsa gave me a kidney — my wife gave mother Ester her kidney 😀. After watching my wife in pain even a month after Tx, I really understand the extent of her gift. It’s quite awesome.

Btw, I also take magnesium— mag oxide 400 three times a day. Had a good day at clinic today with creatinine at 1.17 and TAC at 8.7. So far do good

[Lifechanger1 in reply to Hidden]

👍 My son had a bit tougher time on the recovery then I did, which is typical. He and I r both doing great. He is has been under quarantine do to a student at his school having COVID. He took his COVID test today. When does it end😤

[Hidden in reply to Lifechanger1]

Same here. I was really surprised at my relatively short recovery time versus my wife Julie's recovery time. Since my surgery was robotic, my main incision is only 4 inches long and located around my upper abdomen. They end up scooching the kidney down to its ultimate location and take out the bad kidneys the same way. On the other hand, Julie had the main incision in her lower left abdomen. I tell ya, there is a lot less strain on the upper end of one's abdomen. This was my third abdominal surgery (PD catheter placement and cancer surgery). Considering it was a seven hour surgery, the pain wasn't that bad.

Is your son home from school? I do hope he's ok, but please be extra vigilant even around your son. Julie, a special ed teacher, is now teaching fully remote through at least the end of January. The two of us are spending Thanksgiving together. I guess will be Zooming family later in the day

Happy Thanksgiving,

Christopher

[Lifechanger1 in reply to Hidden]

My son is a chemistry teacher and is also doing virtual teaching for next 2 weeks. He is home with my wife and I. My incision was below breastbone down to groin area. 80 staples used to close it. My sons incision is about 4 inches. He has his own bathroom and computer room to due teaching in the house and wears mask when near us. Hand sanitizer, 80% alcohol based, is in every room. Lots of hand washing going on. Yes, we r being very careful. Happy Thanksgiving to the both of u and ur family! BTW Christopher is my sons name! My name? Vinny

[BeachLove in reply to Hidden]

Hi, your story is so inspiring and I hope that you continue on a very positive recovery path! Could you share more about how you were a nephrectomy candidate and what this surgery recovery was like? Thank you! : )

[Castildd in reply to Hidden]

Cool! I have PKD as well. About 6 weeks post transplant now however, my native kidneys were left inside. 2 weeks ago I had a kidney infection on my right native kidney. I was peeing blood as well. Not sure if a cyst burst or if the infection was due to an untreated UTI. Not sure if I’ll start having more kidney infections as my native kidneys die off? I’m hoping to avoid another surgery where they’d have to go in and remove my native kidney. But I guess you feel better without them? Mine are both pretty large.

[AndrewT]

Dear KingP13,

First of all CONGRATULATIONS (and jubilations) on your Transplant😊. I'm glad that you are feeling 'well'. I'm a few years, further down 'The Road', than you, I had my Transplant in July 2013.

I'm Not going to discuss, with you, Medications and so forth- at this Stage... they will, in any case, be being 'Reviewed'-- almost continuously. Suffice to say, they appear to be 'About Right' at the moment.

If you DO have any 'Questions', or just need any Reassurance, then please do ask me- on here or by P(rivate) M(essage). In the mean time,

Take Care, of yourself KingP13

AndrewT