My Journey With Kidney Disease


Chapter 1:
I suffer from Polycystic Kidney Disease in stage 5.
It means at birth, since it is a hereditary disease, I am born with growths on my Kidneys that inhibit their function.
The problem is that it gets worse gradually over time.
The first 30 some years of your life may be relatively perfect, and then over time you start to see some symptoms.
You start with getting gout when you are younger. As you get older you sleep more and more as your Kidneys have to work overtime because of their reduced function.
With this being said, if you sleep too much and you have got gout in the past, then you should talk to your doctor.
You will then be assigned a Kidney specialist. The new doctor will adjust your meds to make it less damaging for the kidneys.
After seeing the specialist for a long perior of time, the specialist will eventually want you to know about dialysis and transplants which are the only 2 real options for people with Polycystic Kidney Disease.


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Chapter 2:
One day I had difficulty breathing, so I knew is was the sign I was waiting for so I was called into the dialysis unit urgently at the hospital for my first dialysis treatment. I felt so good, it was something I wished would have happened 5-10 years ago. There is nothing to it. You accept a needle to the arterial (artery) and the same size needle (15 guage) to the venous (vein). Treatments last 4 hours, 3 times a week. I start early in the morning at 7AM, and they disconnect me fully around noon. It doesn't interfere with my life as I sleep through it all.
Just the other day I received a call from Toronto General to say that I only have to wait about 1 more year for a transplant. The kidney they have for me will be a deceased donor, from a car wreck, or suicide or whatever. I'm cool with cloned kidneys, genetically modified kidneys, animal kidney/kidney parts. The atrificial kidney that you wear around your waist, or anything else. I am open to everything at this stage, even grown kidneys in the artificial womb.
So, i'm just killing time now :)
Until next time.. you can tell what i'll write about next??
That's right, about my nice kidney installation.
Make sure to be an organ and/or tissue donor. Here is the site for Ontarians, just have your health card number ready. https://beadonor.ca/. I've been almost a year and a quarter on dialysis and going strong. There really isn't anything to it.
Later.
Lord Chancellor Shampoo (LCS)
For more information on Polycystic Kidney Disease, please click on this link to the Healthline.com Web Site.

Thats it for now, until chapter 3!

Chapter 3 (wrote by Dad for me):

On Jan.29 2025

Shampoo was called from Toronto General Hospital and they said he was the backup for a kidney transplant. There was 1 person ahead of him, and if there was any issues in which that person couldn't take the transplant, then he was the candidate to have surgery. Well it turned for the worst. Just a couple hours before we were headed for Toronto, they called saying the kidney was a no-go. Maybe it was damaged. It could be a number of things. Anyhow he is at the very top of the list in Ontario Canada for a kidney! I'll keep you posted!

Feb. 11 2025 9:30 P.M.

Got a call from Toronto General Hospital to have Shampoo there at 9:00 A.M. the following morning as the primary for a kidney transplant and we were very excited. We got up a 4:00 A.M. and left for the hospital at 4:45 A.M. Biggest snow storm of the winter so far! The 2 hour drive took us 4 hours. When we got there, we went to the transplant ward and we're told that the operation would be around 7:00 P.M. that evening Feb. 12 2025 and they started doing all kinds of tests (bloodwork, cultures, chest xray etc.) in preperation for the surgery. That afternoon Shampoo was sent to the Dialysis Department for a 4 hour treatment so his blood would be clean for surgery.

At 6:30 P.M. we were informed that the surgery was delayed until 4:00 A.M. the next morning Feb. 13 2025. We were a little dissapointed. At 9:30 P.M. I received a call telling us that the transplant might not happen as there may be a problem with the donor kidney and we would know by midnight if it was a go or not. We were a little more dissapointed. Midnight came and went with no word so now we are into Feb. 14 2025. 4:00 A.M. came and went with still no word. At 6:30 A.M. we were told that the operation was delayed and would possibly be done at 7:00 P.M. that evening. During the day, Shampoo and I spoke with several doctors about post operative care and medications etc. Shampoo was also sent to Dialyses for another 3 hour treatment. At 5:00 P.M. the head doctor of the transplant departmentcame to see us and said that the surgery was a go but would not be done intil first thing the next morning.

Feb. 15 2025 9:00 A.M.

Shampoo was brought into the operating room. At 12:30 P.M. I got a call from the surgeon that Shampoo's transplant went very well and the kidney was working good and that he was going to recovery and would be brought back to his room and I could meet him there. I went back to his room only to find it empited out and was told that Shampoo was being moved to another room and all our stuff was moved out and would go to the new room but it had not been assigned yet. Shampoo arrived back on the ward a 2:00 P.M. and was put in his new room where our belongings were not there!! I went to the nurse's station and no one seemed to know what happened to our stuff. I went to other nurse's stations on the ward and finally found a nurse who had seen the bags in another room and sure enough they were there with the wrong person's name on them. What luck!! Shampoo got settled in his room and hooked up to a bunch of stuff to moniter him and was alert and feeling great. At 5:00 P.M. he had an ultrasound done on his new kidney which took about an hour and he asked the ultrasound person if he was given a girl or a boy kidney and was told it was a girl kidney. He was very happy with that and I told him that female kidneys were far less likely to develop a chronic kidney disease like polycystic kidneys which I learned from Google and he thought that was great. At 9:00 P.M. he was feeling great, drinking lots of fluids and producing lots of urine.

Feb. 16 2025 7:00 A.M.

Shampoo did not sleep all night and he was very tired and his incision was very sore. He did not feel hungry all day and did not eat or try to stand up and walk. He had his first day of anti-rejection and immunosuppressant medications and showed no signs of any side effects. His new kidney started the day at 12% function and finished the day at 21% function. He drank lots of water and produced lots of urine which was blush red in colour. The doctors and nurses were very happy with his progress.

Feb. 17 2025 7:00 A.M.

Shampoo only slept 2 hours through the night and was very tired again. He had no appetite again and was very low on energy. The doctor came to see him at 10:00 A.M. and put him back on his original dosage of his medications he had reduced prior to his transplant which should help him sleep properly. His bloodwork was done and his kidney function had jumped to 34% which was great. He continued the doses of his anti-rejection and immunosuppressant medications with no issues. He was able to relax and get some sleep in the afternoon which he really needed and ate all of his supper meal! During the afternoon his urine turned from a blush red colour to a yellow colour which was a very good sign. At 7:00 P.M. he was unhooked from all his moniter equipment and had his catheter removed and used a walker and carefully walked around the ward and his nurse was very impressed as was I. He sat up on the side of his bed for an hour and a half getting up and moving around a little about every 10 minutes which helped to loosen up his abdomen.

Feb.18 2025 7:00 A.M.

Shampoo slept well all through the night and felt much better. The nurse took all his vital signs and said that everything looked good. He had his bloodwork done and his kidney function had gone up to 47% and he kept drinking lots of water and his urine output was very good. He was still holding water as his hands and feet were bloated up but with the increased kidney function we were told that this would go away. He ate well all day long and went for walks around the ward several times. We met with a pharmacist who went over the new medications he would be taking and why they were needed and that he would be taking them twice a day to keep his kidney healthy.

Feb.19 2025 7:00 A.M.

Shampoo slept well again all through the night and his kidney function was now at 56% and he was feeling really good. His urine output was excellent and his incision was feeling less sore every day. We met with the discharge coordinator to go over the procedures for picking up medications to bring home and were given a booklet with all kinds of information on how and when to take medications at home as well as tracking the times and doseage of each of the anti-rejection and immunosuppresant drugs every day. We would have to take his Blood Pressure, Pulse, Temperature, and Weight twice a day and record this as well for outpatient visits to his outpatient kidney specialist in Toronto General Hospital who he would see every second Friday. He was also assigned a outpatient transplant coordinator who would make any appointments for follow up tests which would be needed during the next 6 months. This would be our contact if we needed to call for any reason from home. He would also have to go to Toronto General Hospital every Monday and Thursday morning for bloodwork for the next 6 weeks to make sure the kidney is functioning properly and to adjust any medications as needed.

Feb. 20 2025 7:00 A.M.

Shampoo's kidney function is at 68% and he is feeling fantastic! His bloating has all gone away and he will be discharged today! He says he feels 25 years younger and is in great spirits.

Mar. 05 2025

Shampoo has been home for 3 weeks and doing great. We have been back an forth to Toronto General for bloodwork and tests 7 times so far and everything is good. His kidney function is now at 81% and he shows no signs of any side effects from his medications.