Had a living donor transplant six weeks ago. First, clinic labs had my creatinine at 1.25 and over the subsequent weeks dropped to 1.02 (week 4). The following week (e.g. week 5) it jumped to 1.29. A week later, week 6, it also moved up to 1.33. All my other lab numbers seem to be fine with the exception of magnesium (e.g. 1.5) which is slowly going up. I drink A LOT of water — 4 liters a day. I had a lot of diarreaha for the first 2.5 weeks after transplant so my Tacrolimus was all over the place — as low as 4.9 and as high as 18.9. It's stabilized between 9-10 since gastro issue have resolved.
As I keep seeing the numbers rise I'm getting a little freaked out. I also suffer from anxiety and depression, so that doesn't help my mood.
Let the transplanted kidney settle you’ll be fine, maybe your tacrolimus levels are too high and you need to reduce dose, if your getting an acute rejection they normally put you on high dose prednisone or steroid to counter the acute rejection.
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Hey cobrakai...
Thank you for the words of encouragement and further information I was starting to ruin a beautiful weekend with my worrying.
With only 6 weeks to adjust, your body is still coping with what the "norm" is with both an excellent functioning transplant and medications. Please follow the guidance of your doctors on medication dose and water intake. Never anyone online. Everyone needs different combo of medications and protocol and only your transplant team knows what you need. Be patient and enjoy your new beginning! By the way, my doctor doesn't want me to drink more than 2 lit of water a day. Just check with yours to make sure you are not drinking too much.
Thanks for responding it really helps. As I come from a family with a history of both PKD and kidney transplants — I'm the fourth out of 11 to have a transplant — I know to listen to my care team exactly. I see them either once or twice a week for blood work and a visit.
My med changed after each bloodwork I took. It takes time for the body to adjust. Just follow the transplant teams instructions. They know best! I am 22 months post transplant and feel great! I ended up taking a kidney with Hep C. I took a 12 week treatment for HepC and no longer have signs. I take magnesium daily and Vitamin D3 once a week. Ask your transplant team how much water you should be drinking. I drink about 2 liters a day. About 9 months after my transplant I ended up with stones and had an endoscopy which removed the stones from the liver, gall bladder and pancreatic ducts and two days later had my gall bladder removed. Stay positive! I just had eye surgery and have to have surgery on my other eye. Just keep in touch with your transplant team abs ask questions!
Congrats on your 22 months! Coming from a family with a history of PKD and transplant, I know that I need to listen to my care team exactly. They watch me like a hawk
Hi Christopher, Hey don't worry too much about a small fluctuation in your numbers. I'm about a month from my 18 yr. anniversary with my kidney donated from my sister. I've been on tacrolimus the whole time and I know the first few months I would obsess over the numbers but luckily my doctor told me that as your body gets used to the meds and the kidney they see fluctuations. I would tell your doc about your fluid intake as you might be drinking a bit too much water. Good luck and be sure to wear sunscreen since you are taking tacrolimus which increases your susceptibility to skin cancers. Again I wish you well. -Rick
Wow! 18 years is wonderful. My uncle, who also had PKD, received a kidney from my his daughter (e.g. my cousin) 20 years ago. I received my kidney through a swap at UIC. My wife wasn't a match. My wife donated to a mother of 64 years and I received a kidney from her daughter of 38 years. It all happened so fast. Since once of my kidneys was hemmoraging from the cysts, they decided to do a double neprhoctomy w/ transplant. I guess I was the first in the world to have this particular operation done robotically with the Davinci Xi robot. I only have a four inch main incision in my upper abdomen. The "father of robotic surgery" performed the nephroctomy. I actually saw everyone — about a dozen doctors and nurses in the OR — as well as the robot before they put me under.
Yes, I was awake in the OR long enough to see the cooler my kidney was residing. It was marked with "do not remove from room" and other warning signs. In all the movies I've seen with an organ being transported, it's always in a cooler (e.g. the comedy Rat Race). I asked one of the residents "Is that my new kidney?" They said "Yes".
I don't know if they were kidding, but they wanted to give me a photo of my PKD diseased kidneys. My hometown nephrologist said "they're really cool to look at." I have a weak stomach for things like that so I declined. BTW, they removed both of my kidneys, with the robot, through my 4-inch main incision. I had lots of questions as to their size and if they removed them as a whole. Eventually I got the answers. Very dense kidneys about the size of Nerf footballs. And, once the robot had detached the kidneys, they were "bagged" inside of me and pulled out. I'm glad I didn't know too much about the operation before hand.
I am 21 months post transplant and my creatinine numbers bounce around between a low of 1.07 and a high of 1.5, but always comes down to a usual number of 1.23 or so. My docs don't worry about that range of numbers. 4 liters a day does seem high; I was asked to drink 2-3 liters. It did take some time to settle in to a steady tacrolimus level.
You are early in this process, and the numbers don't look bad to me. You should still be seeing the post-op docs often. What do they say? Their opinion will be more informed than any of us here. Congratulations on your new kidney.
Contrats on 21 months! Yes, I get labs and see my doctor at least once a week. Since my creatinine went up .25 within the last two weeks they wanted to have me do blood work twice last week. I'm about an hour out of Chicago, so the trips can be difficult. However, I'm very glad for the care.
Christopher, Your story sounds almost identical to mine. I'm almost 3 years post and everything settled ok, creatinine (still fluctuates, depending upon H2O), tacro (even now, they occasionally adjust it), even magnesium (I still supplement). After what you've already been through, you can face whatever comes but worrying a lot isn't good for your new organ. Good luck.
Thanks you for sharing you experience and words of encourgagment. That's exactly what I was looking for. Cool!
My Tacrolimus has been changed a number of times. When I had the GI problems, my TAC levels were very low so they upped my meds to 16mg. After the GI problems remedied, my TAC was way too high so they dropped it to 12. Now I'm on 9mg.
Congratulations on your new kidney. I remember my creatinine jumping around at first, as well. I was freaked everytime it went up. Eventually, it settled around 1.00. Throughout the years it has been stable and sometimes it fluctuates. Currently, it went up and now it is transitioning down. It always goes up faster than it goes down. Anyway, you need to get on the anxiety and depression issue. If you are on prednisone it will make things worse. I've been where you are and it is a very scary and uncomfortable place to be. Getting on an antidepressant and an anxiety med will help tremendously. I think what is going on is normal as your body adjusts to your new kidney. You can take imodium for diarrhea. Diarrhea will dehydrate you and cause creatinine fluctuations. Let us know how things go and feel free to reach out.
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Kidney 1982...
My two main anti rejection drugs are TAC and Myfortic. Currently, I'm not on prednisone. My dad, who had a transplant in 2007 due to PKD, was on prednisone. How things have changed in the 13 years since his transplant.
Also, I'm long time sufferer of anxiety and depression. I've been free from a major depressive episode for 15 years. I still get symptoms but take a couple meds to help stabilize. My transplant nephrologist asked me if I had any changes in mood. I replied my anxiety is a bit high. He asked why? I replied, "ya know, COVID-19 and the election." He said, we've had COVID for almost a year. He sure knows kidneys but maybe not a lot about mental health. Though when I asked him about rejection, he just put his hand on my arm and said don't worry. So, maybe he does understand. Anyway, he's a kind man.
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In my opinion nephrologists don't want to deal with nor do they understand the mental health side of all that comes with kidney disease. Mine don't like the meds, nor do they think I should ever be depressed since I have a stable kidney. I have literally been told to tag along with my nephrologist on her rounds through the dialysis center. Then, I would have something to be depressed about. I already know about dialysis, since I was on peritoneal and hemo for 3.5 years. I have a sister on peritoneal and a father with failing kidneys. Anyway, mental health is very important and I am glad you are on meds. The mental health system is ever changing. In my state, I see a meds doctor or PA who prescribes the antidepressant and a therapist for talk therapy. A psychiatrist runs the facility, but doesn't see patients. I highly recommend talk therapy. Apparently, so does the insurance company since I have unlimited visits per year compared to 10 visits a year in 1982. Again, I think your kidney will be fine. I am here along with the rest of us when you need to talk or vent.
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That's too funny (e.g. get the kidney and life's perfect)! I'm totally grateful for my new kidney and All the people that contributed along the way. However, it doesn't change the fact that I still have trouble with anxiety and depression.
I also do talk therapy. I've been with my current physchiatrist and therapist for about seven years. My medical group also gives me unlimited visits which is nice. I think they'll be doing televisits for the foreseeable future. Had my first session since transplant this past Friday.
I don't think I was on dialysis long enough to come even close to resenting it. My five weeks on PD were not that bad. I always thought of it as life saving technology. I'm not sure how I would have felt after 3.5 years. Though, the transplant coordinator was correct when she said, "you'll never get a good nights sleep." And, when the Baxter machine wants to get a hold of you in the middle of the night (with those loud beeps), it gets a hold of you. I sent the PD machine back a few weeks ago but I still have about 30 boxes of dialysate to get rid of. With COVID, Baxter will no longer come and remove it. So my wife, who also had the robotic surgery to remove her donor kidney, decided to start emptying the bags. That was a mistake as they are heavy, 6 liter bags. She was definitely aching the next day.
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My sister has a whole room dedicated to peritoneal supplies. The alarm on the machine was a big problem for her and her husband at the beginning. They received a used machine and eventually it stopped working during cycle. She requested a new machine, had to jump through some hoops, but eventually got one. She is also legally blind and was not allowed to hook herself on and off the machine. She was pretty upset about that, because she can still see enough to do so. Her husband hooks her on and off.
I was on peritoneal for a very short time and in the hospital. My father and I were never going to follow through with peritoneal because he worked all day and we lived in an apartment. We had just moved to NC from NY with his job and didn't know anyone in NC. I was transplanted with a cadaver kidney in 1978. It failed the first week. I was put on hemo and that is where I spent the majority of my dialysis time. It was fine back then. My fistulas continued to stop working and that was becoming a problem. My mother donated one of her kidneys to me in 1982. I went to college, got married and worked. Sometimes things get rocky, but work out eventually.
The first year post transplant your creatinine numbers jump all over the place. I remember I had to biopsies done of my new kidney because of this also. My immunosuppressant dose had to be lowered several times. I never did have a rejection episode. Some variation in your creatinine is going to happen, especially since it's only been 6 weeks. If you are really wondering, call your transplant coordinator
Congrats on 21+ years! And, thank you for the sharing a bit of your story. It's nice to hear that although different, everyone experiences "ups-n-downs." Fortunately, I had a great pre transplant nurse coordinator. She was readily available and called back ASAP. My new post-transplant coordinator has NEVER returned a call. So, I mainly deal with my transplant Doc and pharmacist. Both are very responsive.
Hey! Reading this string because I am also worried about my creatinine levels. I’m only 2 weeks out from surgery but super surprised my creatinine levels are still around 5.4. It was actually around 6.22 right after surgery. Came down. Then slightly up. Labs 2 days ago had 5.4. So it has come down but I guess I assumed my creatinine would be normal by now. Hospital has done various sonograms and a biopsy and said everything looks perfect. Kidney just a little sleepy. Any suggestions on how I wake it up?! Lol. I’m trying not to worry and just relax/trust the process. But the situation still causes me a lot of anxiety.
I'm sorry to hear that your new kidney is not perkier at two weeks out. What I've read from my pre-opt literature that transplanted kidneys can, in some people, take longer to wake up. I know we are all happy that we're able to get a new kidney but post-transplant can be scary too. I'm have labs tomorrow, I'm not seven weeks out, and am scared about the fluctuations with creatinine (e.g has varied from 1.02 to 1.33). Plus, they've had a difficult time getting my TAC to a therapeutic level (e.g. between 8 and 10). I will send positive thoughts your way.
In order to get more responses, you may want to post in a new thread. Your message is buried deep in a thread.
My creatinine prior to surgery was 6 or 7. Postop day 1 went down to 3.3. Day 2 was around 2.2, and day 3 I was in the ones. I have been as low at 1.02 but then in popped up to 1.33. It something that we spend your time in CKD worrying about creatinine getting closer to that magic number of ESRD. Now that we have new kidneys we're still watching, possibly worrying, our creatinine.
Are you urinating a lot? And, how's your BUN and other lab numbers? It wasn't so much my creatinine that put me on dialysis, albeit that didn't help, but rather my terrible BUN of 100. It was the BUN that made me feel terrible. At least that's what my nephrologist told me. Two weeks after starting PD my BUN was down to the 50-60 range and I felt a whole lot better. With the new kidney its ranged from 16-25. And, over the pat 2+ years my hemoglobin has been between 9 and 12. Currently, it gets better every lab. I'm now low normal on hemoglobin.
Glad you posted a new thread. Hopefully, you'll get a bunch of replies. Cool!
And all my other labs seem good. My BUN has ranged between high 50s and low 60s. Hemoglobin has improved since I left the hospital couple days ago (up to 9.4). And my tacro therapeutic levels was also stable around 9.8. They decreased the tacro and cell cept while I was in the hospital because I felt AWFUL. Feeling better now but still not 100%. Sleep l and stomach issues are the most prominent side effects for me so far as well as some chest tightness/anxiety. When it comes to urinating, I guess I could be peeing more. Need to increase my water intake. Doctors told me it’s very easy to be dehydrated at the beginning because kidney doesn’t know how to regulate.
I thought this would be an interested quick read for this forum. It's a story about me in the UIC Today news.
Newswise — Surgeons at UI Health — the University of Illinois Chicago’s clinical and academic health enterprise — have performed the world’s first robotic-assisted double-kidney removal followed immediately by a living-donor kidney transplant in a patient with severe polycystic kidney disease.
Christopher Adamsick, 50, of Yorkville, Illinois, underwent the procedure Sept. 24. Only a few days later, he reports being in high spirits and “very little pain.”
The procedure was led by Dr. Pier Giulianotti, chief of general, minimally invasive and robotic surgery at UI Health. “This is a first-of-its-kind procedure that normally requires open, invasive surgery and a very large incision. By doing the surgery robotically, the procedure is minimally invasive, the patient recovers faster, and we reduce the risk for surgical complications.”
Polycystic kidney disease is the fourth most common cause of renal failure in the United States, with approximately 150,000 Americans affected. It is an inherited disease in which clusters of fluid-filled cysts develop in the kidneys. These cysts can cause the kidneys to enlarge and lose proper function, leading to end-stage kidney disease.
A kidney transplant is the only cure for the disease.
Adamsick has had polycystic kidney disease for many years and was on dialysis for five weeks before a transplant became available at UI Health. He said he is happy to have such small surgical scars — just one 6-inch incision [actually it four inches, I measured it] and five small incisions where the robot’s arms and instruments entered his body.
“The disease can be very painful,” said Dr. Stephen Bartlett, a visiting clinical professor of surgery at UIC. “We always remove both kidneys when transplanting polycystic kidney patients. The cysts are not only painful, but they can rupture and cause internal bleeding and infection, and sometimes they get so big — up to the size of cantaloupes — that they squeeze the stomach and the person can’t get adequate nutrition and they lose weight.”
Bartlett pioneered the surgical removal of both kidneys — called a double nephrectomy — followed immediately by a kidney transplant to treat polycystic kidney disease years ago as chair of the department of surgery at the University of Maryland School of Medicine. The open surgical technique required an incision from the base of the sternum to the pubic bone. Some incisions can be up to 14 inches long.
“Traditionally, these patients had their kidneys removed first, went onto dialysis during recovery and were transplanted later in a second operation,” Bartlett said. “We combined the two procedures so that the person has one surgery instead of two and has a functional kidney when it’s all over to help them in the recovery.”
The next logical step, Bartlett said, was performing the combined surgery robotically to reduce the size of the incisions and improve recovery. When he was asked to join the UI Health transplant team, who have successfully demonstrated that robotic surgery can be used to improve recovery for numerous traditionally performed open surgeries, he jumped at the chance and came on board in February 2020.
Adamsick was an ideal patient for the robotic double nephrectomy and transplant, said Dr. Enrico Benedetti, the Warren H. Cole Chair of Surgery at UI Health, because of his weight.
“It’s harder for obese patients to be approved for transplant because there is a higher risk of complications,” Benedetti said, “but we have shown that robotic-assisted kidney transplant for obese patients is safe, and patients have fewer surgical complications because the incisions are smaller. So, when a kidney became available for him, we decided to do the double nephrectomy and transplant robotically during one procedure.”
Giulianotti expects that Adamsick won’t be the only patient to undergo this unique surgical procedure for long.
“Polycystic kidney disease is very common, and the suffering associated with not only the disease but the traditional open surgery for transplantation and kidney removal is high,” Giulianotti said. “This first case should be very encouraging to patients with PKD who need transplants. The surgery is much less traumatic, and that our patient is doing well and reporting almost no pain only three days later is really promising.”
Well the reason I was feeling no pain after three days was that I was on different pain meds. Once they sent me home, only with Tylenol, the pain was a little more significant. But, having the main incision in my middle, upper abdomen — they "scooch" the kidney down to it's proper place — I only felt pain at they location if I slept on my side. Cool! My wife, with her incision in her lower abdomen, sneezed one day and oozed for weeks.
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I was starting to ruin a beautiful weekend with my worrying. 
Kidney rejection episode 4 weeks post transplant from a living donor.
Has anyone had Covid post-transplant?
Creatine level at 90 it’s seems to go up and down from post kidney transplant!
Question for those who have pkd and had a transplant 
CMV Update
