JC - Kidney Transplant

I am JC, a male with PKD polycystic kidney disease. I live in Florida and in days gone by, I have been on kidney dialysis. In September 6, 2008, I changed my diet once again. I had previously eliminated salt altogether and my doctors have always been amazed that high blood pressure has never been a problem for me.

With my diet, I eliminated most animal proteins. I restricted animal proteins to one daily meals, usually lunch. Four months after and loosing 38 pounds, my urine output increased greatly even while on kidney dialysis. The doctors are repeated several tests to see if it was possible to reduce my dialysis time and/or days. I want to do without animal protein all together but not until I get the amino acids designed for kidney patients.

ON SATURDAY, JUNE 21, 2008, I GOT A NEW KIDNEY. They called me Friday afternoon that there was a good match and that the kidney was perfect for me. The surgery was scheduled for Saturday at 8 a.m. and it was a success. From the moment they placed the kidney in me, it started working and producing urine. I feel so good. My body is still adjusting to the medications and I still have some pain at the surgery site but other than that no other problems so far. I am still amazed at how my body is slowly returning to normal. especially how my creatinine went from 8.70 (really poor kidney functioning) the day of the surgery to 2.25 (near normal) last Friday. I just wanted to share the news with all of you. The incision starts below my belly button right on my waist and goes all the way to my right side. I have 19 staples and because they are still there when I sit for too long it bothers me some. They are supposed to come out tomorrow Monday but only every other one. Then the doctors re-evaluate the incision and take the others out but I don't know when yet. I will find out tomorrow. I was on dialysis for a year and nine months. The kidney transplant was done at Florida Hospital in Orlando. I live in Miami which is about 3 hours away, so I drove up. I never had any problems with the fistula when it was placed other than an infiltration the nurse caused the very first dialysis session. I was never told to do the ball thing to keep it strong which I questioned the surgeon about it and he said that it wasn't necessary. My fistula is still working good right now and I am planning to keep it.

Fistulas take anywhere from 2 or 3 months to mature so you should plan ahead if you are going to have it done. I had mine done in May and in September when I had my first dialysis session, the fistula was good and ready. I didn't want a catheter placed in my neck so that is why I did it ahead of time. Other than lifting heavy items with the fistula arm, it didn't caused me any other problems and I work full time where I need both hands at all times. Another thing to consider is the area where you want a fistula. A lot of doctors recommend having it placed in your forearm. If at any time it fails, they can go up the arm and place another one. In my case I told them that I didn't want it in my forearm because I didn't wanted the bulging to be so visible. So, I had it placed further up where a short sleeve shirt would do the trick and it is not visible to others. Same thing with Peritoneal Dialysis. I didn't want to have the tube there permanently and deal with the possibility of hernias or infections. That doesn't happen with fistulas plus it is a vanity thing for me. I am still young and active and didn't want to have that there for intimacy reasons. I was going to be too self conscious about it.

My sister has been on dialysis almost two years now. She was on Peritoneal Dialysis PD because hemodialysis didn't workout for her. She has very small veins. While on Peritoneal Dialysis PD, she developed a hernia and they had to operate and take the Peritoneal Dialysis PD catheter out. A catheter was placed in her neck for hemodialysis while she heals but it has given her so many problems and infections that she is now on the emergency transplant list. The next available kidney should be for her.

Today is the first day that I can sit for long periods without hurting or running to lay down. Staples finally came out yesterday and I am feeling much better. The incision is below the belly button right at the waist going around to the right side of my body and up a little. Because of the staples and the location of the incision wearing pants of any kind was a challenge. I opted for underwear and pants with strings and running pants with strings as my everywhere clothes. Now, without staples I was able to wear more regular clothes without being too tight.

The transplant surgery was not what I expected at all. I thought that I was going to be in the hospital for weeks and in Intensive Care for a least seven days. I also thought that I was going to be feeling horrible and that I was going to be near death or something but that is not how it went down.

I had surgery Saturday June 21st at 8 am. By 11:30 a. m. I was in ICU already and woke up around PM. When I woke up I was feeling fine, no pain, no issues, no problems at all and my kidney was working perfectly producing tons of urine. To my surprise my entire family was allow in the room to see me two at a time. Even though I was drifting in and out due to the anesthesia, I was able to talk to them and see them for one hour, after that, everybody out until night time when they could come in again for another hour.

The next day Sunday, I was downgraded to a regular floor. This floor is strictly specialized for transplanted patients. I got to my room by 11 am. There is where I met the most competent, professional and caring group of nurses, doctors and tech's I have ever come across in my life and that is a lot for me to say since I am a nurse who works at another facility.

There I was bombarded with attention, medications and on Monday I was to be up and walking. Boy did I bitch about that but they don't take no for an answer so up I went pressing my PCA pump for pain religiously every 9 minutes for that shot of morphine. It was heaven! On Tuesday, I was told that everything was running fine and that I was going to be discharged the next day Wednesday. I could not believe what I was hearing but the doctors did asked if I wanted to stay longer. Together, we decided that I would go Wednesday if everything was fine. By 5 am they started disconnecting and pulling out tubes and IV's. I was discharged by 10 am and left the hospital at PM because you get a lot of training on the medications and are visited by a lot of staff from the transplant center to make sure you and your caregivers understand everything.

It is a slow process mainly because of pain in the incision area but not anything that can't be handle with medications. I also have to adapt to the medication regimen which I have to take at the same time everyday. I have a lot of restrictions for the first 90 days such as not being in crowds, not going to restaurants, public places, using utensils at places other than those strictly for me in my own house, not allowing sick people near me at any time, wearing a mask anytime I am outdoors, not plants in the house, no raw, uncooked or medium cooked foods, etc.

It is a sacrifice that I am willing to make for 90 days in order to live a normal life down the road. It sure beats dialysis.

FROM JC - JULY 13, 2008 My native kidneys are both Polycystic and very large. They don't work much at all other than eliminating fluids from the body. I never accumulated fluids between dialysis treatments so dialysis was mostly to clean the blood. For now, I am not planning to take them out unless they cause me problems. My sister had a left nephrectomy and swears that she will never do it again. She went through a lot of pain.

FROM JC - AUGUST 2, 2008 I feel fantastic. Like new. I have more energy than before. I am back exercising slowly walking on the beach early mornings or late afternoons so that I don't get any sun, at least for now. The pain and discomfort from the incision are gone and I am driving again without a problem. I am still not allowed to go out in public without a mask or to frequent crowded places. I am not allowed to eat in restaurants yet. Other than that, I am doing pretty good. I can't wait to go back to work but in the meantime, I am enjoying my time off.

FROM JC - AUGUST 19, 2008 The weight gain is one thing I heard a lot at the transplant center. Nurses told me that weight gain was the biggest complain of patients. I lost 18 pounds within the first 11 days post transplant and my weight has stayed the same. It fluctuates a pound or two after meals but it goes back down. Of course, I am doing everything in my power to not over eat and fall into temptation. Perhaps, that is what is keeping me from gaining weight. I do get hungry more often than before but I eat fresh and healthy snacks if I do and I am exercising daily. Salt restriction has never been problem because I am used to it. I have always eliminated salt from diet.

FROM JC - NOVEMBER 3, 2008 Four months and one week has passed since my transplant. I can honestly say that I am feeling great. I am back at work working full time. I made arrangements with my boss that I would try working full time but if I didn't feel all that good I would cut back on my hours. So far, everything has been fine. The incision area still bothers me from time to time if I have something on that is too close fitting or too tight. Since I wear scrubs for work, it has not been much of a problem. Other than that, no side effects or problems so far. It sure beats dialysis!

HOW DIALYSIS CAME ABOUT AUGUST 7, 2012 - I was able to stay off dialysis with the PKD Diet and Walser diet, although I made adjustments to fit my taste and lifestyle. I kind of became vegan to a point but did eat fish and chicken or turkey at times. I still do not eat red meats at all and by doing that I was able to postpone dialysis for ten years.

After ten years, and when my creatinine stated creeping up, I decided to have the fistula surgery so that I was ready in case I needed dialysis. My nephrologist did not agree and so I changed nephrologists. Three months after my fistula was in place and ready to use I noticed that I was increasingly tired and a trip to the supermarket would cause me to lay down for a couple of hours afterwards. At this point my creatinine was around 10 or 11.

One day while I was driving with my family I came to a red light and as I waited for the light to change, I noticed how cloudy the day was and how the clouds were suddenly all over sky. As I commented about the sudden weather change, my family seemed to have no idea what I was talking about.

Right then and there, I realized it was just me as the day was truly a beautiful, sunny and clear day. I was also dizzy and although it went away shortly after that, it returned later that night. The next morning I called my physician and requested to start dialysis right away. Two days later I was having my first dialysis session.

Dialysis was no trouble for me and I think it had to do with the fact that I prepared myself not only physically but mentally for the process. I hated sitting in the chair for 3 hours three times a week and so I made the best of it. I brought books, my computer, music and my phone to pass the time. While on dialysis I did research about the best transplant centers in Florida (where I live) and the ones with the best success rate and less waiting time based on my blood type of O+. When my kidney function dropped to 15% I requested for the doctor to place me on the transplant list and so he did.

Since I had done my homework, I multi-listed with the top three centers in Florida and waited to be called. One year and nine months later I was transplanted with a cadaveric 22 year old kidney. Had I stay listed, only with my local center, the wait would had been 4-6 years. This past June 23rd was my 4 year anniversary and I have had no rejections at all or complications other than one infection y one of the cysts of my native kidney. No other issues at all.

PKD Polycystic Kidney Disease jc story
We are  sharing our experiences with PLD Diet, an adjunct diet to consider  trying to complement a physician's prescribed medical therapy. Think  about testing this only with your doctor's prior knowledge, who can  adjust it, according to your own uniqueness by adding to your current  treatment.

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