Liver + Kidney Transplant + Nephrectomy is Terrifying

[BeachLove]

I have learned that I am most likely facing a liver and kidney transplant in the very near future due to my PKD. This will include a nephrectomy. This surgery is rather terrifying to me as it is so huge. Has anyone had experience with this same surgery?

[Hidden]

Hi...While I didn’t have a liver transplant, in September of 2020 I had a kidney transplant + bilateral nephrectomy. It took about 6-7 hours. I told my catholic priest beforehand “I was afraid...”. He said Jesus has this. Well you know who else had this? My surgeons. I had the best robotic surgeon in the world — Pierre Guillionti— remove my kidneys and Enrico Benedetti performed the transplant.

What I’m saying is that they don’t just give these transplant surgeries to anyone. In my opinion transplants go to the best of the best — no matter which transplant center your at. It’s natural to worry but I believe your doctors snd nurses “have this.”

I also had PKD. They chose to do the nephrectomy due to some hemorrhaging of the cysts. I guess my native kidneys were the size of small nerf footballs. The nice thing about doing things robotically is the main incision is only 4 inches long. They bag the old kidneys snd scooch them out and scooch the new kidney in to the right place. Cool!

I’m the 4th person, and youngest, in my family to have kidney transplant. There are seven more family members who are at varying stages of their PKD. I was at University of Illinois, dad at university of Wisconsin, uncle at university of Minnesota, snd another uncle at Mayo.

Best wishes with your new “parts.” And, remembe your doctors have this

[BeachLove in reply to Hidden]

Thank you, this was very helpful and encouraging. I am Catholic as well. Would you please share what your recovery was like?

[Hidden in reply to BeachLove]

Howdy BeachLove...I'm glad I can be of some help. To recall these events is also therapeutic for me. When I need more helpful, anectdotal information about transplants I come to this forum. I've learned personal experience can be so very helpful in relieving the worries that accompany transplants as well as life's other problems.

What was my recovery like? Well, I did make a mistake when I told you my surgery was 6-7 hours. Talked with my mom last evening — who needed to get my surgery status via telephone (no visitors during COVID) — she said, it was at least 8 hours.

At the University of Illinois all transplant patients, as well as living donors, are placed on a ventilator during/after their surgery. I didn't wake up from surgery for about 10 hours. To start the day I had a ventilator. That's thought. By the end of the day, though, I was able to walk to another wing of the hospital in order to visit my wife in her room. I was actually doing A LOT better than my wife, Julie.

I was told that my new kidney started producing urine almost immediately. My creatinine improved to 1.2 within 24-36 hours of my transplant. The day before surgery it was around 7.

I was in hospital for 4 days and mom drove me home. We live in the far west suburbs of Chicago. Mom stayed with us for several days at a time to take care of Julie and myself. Mom's food is just awesome. She always cooks for a platoon. Since I'm an adjunct professor, I chose to take off the fall/winter semesters. My wife was back at work within two weeks after donating. She's a special education teacher and was able to do a lot remotely.

Like I said, the big story with my new kidney is just balancing the medication so your new organ functions properly. Honestly, I had gastro-intestinal issues, a side effect of the meds, for about two months. I was on fairly high dose of my tacrolimus and then gradually tapered to your "narrow therapeutic window." I currently take 2.5 mg of TAC with a 24 level between 6 and 8. Usually it comes in at 7. Cool!

I would just say be prepared for a lot of adjustments in medication. You will have a lot of labwork. Pay attention to your labwork (e.g. be active in your new organs health) but a) don't get too hungup over fluctuations in your numbers and b) let your doctors do the "worrying for you." See I'm a worrier, so there have been two or three times where either my creatinine when up a tenth of a point or two. But, my transplant nephrologist, told me that I have little chance of rejection. I'm not sure if he should have said that to me. I don't want to get too cocky. Anyway, they just end up repeating the labs the following week. My creatinine has been as low as 1.02 and as high as 1.35 since my surgery. Normally it fall between 1.13 and 1.21. Last draw was at 1.22.

Also, things do change as COVID is still apart of everyone's life. My wife and I are extremely careful. I have not been in a store, restaurant or seen friends/family in person since my transplant. I'm in the bubble with my wife 24/7. Sometimes we're are ready to "kill one another," figuratively of course. Well I do labs every 2-3 weeks. My next labs/doctor visit isn't for an entire month.

Of course, your story will be unique to you. I'm nearly 7 months post and I had a) no complications from the robotic nephrectomy/transplant surgery and b) so far, no issues with rejection. Compared to my father, who had quite a lot of issues in his first 6 months (e.g. he go the BK Virus within that short time frame), I'm doing great.

Emotionally, I'm not doing great. The isolation of COVID kills one's mental state. It seems to exacerbate the anxiety I sometime get analyzing fluctuations in my labwork. After years of seeing my creatinine rise/GFR decline with every lab, I expect bad news. So far, so good. My new kidney is a real trooper. I see a talk therapist every two weeks, remotely which does seem to help. I'm also on an anti depressant. While COVID isn't under my control, there are a few things that are, including: my diet, exercise, sleep, and attempting to connect with others, remotely.

If you have time, share some of your experience. You can PM me or share it with this community.

Best,

Christopher

[BeachLove in reply to Hidden]

Thank you for the inspiring recount of your recovery. I am so happy for you and your wife that things went well. Also how nurturing about your dear Mom's good cooking! Ironically I am a talk therapist myself (Psychotherapist). How wonderful that you are talking to someone trained and objective outside of your family and friends.I have one final test to complete then my case goes to "Committee" for formal approval for kidney and liver transplant. This will need to be from 1 deceased donor.

I am told once approved that I could get "the call" within a year.

I am being treated at Porter Hospital's Transplant Center in Denver, CO.

Thank you again for your feedback and support : )

[Hidden in reply to BeachLove]

Sounds like your doctors have this. Cool! My wife and I will pray for a smooth and swift transplant. Hopefully, yours will come very soon.

My father, who also had PKD, was listed in the chicago area (Northwester University) as well as University of Wisconsin. Here in chicagoland the wait is forever. However, after listing in Wisconsin he had his kidney in three months. I always reminded his that he received it so quickly was because I was a UW grad (e.g. Go Badgers!). He actually received a kidney pillow as well as a stuffed Bucky Badger. No mascot for me but I did get my kidney pillow that all my nurses signed. Lately Australian Terrier has been laying her head on it. Go figure!

Since they have to list you before a living donor transplant — I guess its the law —I was on the wait list three days. I said to my transplant, nurse on the day she listed me, "What if they call this evening? Do I take the kidney?" She said, the odds were against them calling! LOL!

Oh! I remember the days that both my wife and I went before the UI Transplant committee. It was a no brainer for my case. My wife, on the other hand, had a higher that normal A1C eight months earlier. Through diet/excercise her A1C returned to normal. We were sweating it out to the very end. This is sort of funny. The day we were both approved we went out and had deep dish pizza. That's not advisable for someone on dialysis (me) nor for someone watching their blood sugar (Julie).

Anyway, keep up with the good spirits. I know my wife and I did and 9 months later I had a new kidney...

[BeachLove in reply to Hidden]

Thank you for your feedback and wonderful sense of humor!!!I love the deep dish pizza!!! I sooooo get it!!!!! I had the best pizza of my life in Chicago!

Being on dialysis, what I wouldn't give to be able to down a huge glass of ice water!

Thank you for your encouragement : )

[Hidden in reply to BeachLove]

Oh! I forgot about water restrictions in dialysis. I was early in my PD so I really never had restrictions on water. I was urinating 3 liters a day just prior to PD. However, I apparently was filtering very little. I certainly felt the toxicity of my blood.

[Balap]

My doctor advised me to go for 2 seperate surgeries. Laproscopic surgery to remove both PKD kidneys, then 3 months gap to heal completely, then Transplant. This to avoid infections (cysts may rupture and its contents can spill inside abdomen)

[LisaSnow in reply to Balap]

What transplant center were you treated at?

[Balap in reply to LisaSnow]

Institute of Kidney Diseases,Urology and Organ TransplantationIndia