Post Transplant week in Hospital

The first week in the hospital was difficult and uncomfortable. It was uncomfortable because of a foot long opening in my belly recently stitched up, a general re organization of my insides, and of course a catheter, which in a way was a bit of a blessing because I did not have to get up to pee and also because of a large catheter in my neck used for extracting blood they were taking 4 times a day.

Short term discomfort, the real difficulty was the anticipation of the workings of my new kidney. The kidney did not just start up. It was heart stopping that for 3 days it did not work. At least twice a day someone would be in talking to me about how it could start tomorrow or in a month.

There were discussions about and schedules for dialysis again, Dana the vascular access nurse came to mark my arm for insertion locations and I was “hyper concerned”. That would be a euphemism for screaming inside.

It was shocking, terrifying and heartbreaking all at once.The initial dose of all the anti rejection drugs are many times the maintenance dose and my body reacted by vomiting, diarrhea, dehydration, weakness and high blood sugar briefly requiring insulin once but not again.

It was all par for the course, but yah I was “hyper concerned”, stressed, unhappy, anxious and holding my sweethearts hand when available.

Its working!

On the third day my blood tests were indicating that the kidney was starting to work and about 8 people came by to tell me the good news.

Everyone wanted to tell me from the nurse to the doctors to the surgeons. The next day even the tech that came in every morning to take my weight had a smile on his face when he told me my kidney was working.

Later the next day my first post transplant dialysis was cancelled as it was determined the kidney was up and running. Once again I was the lucky one.

All things considered my hospital stay was very good. My wife was my constant companion, even the food was not half bad, food was brought from outside and my mood was improving, I was terrified and in pain but you tend to forget the pain and remember the outcome.

Looking back on this whole ordeal the transplant was not the most difficult part. The most difficult part was the psychological toll of loosing my old life and coming to terms with the new normal.

The days moved along, I was up and walking, my bowels became regular and before the week was out I was out of the hospital. It’s a bit surreal even now to think about it. Through it all I kept thinking about the gentleman from North Bay who had just died and his family who honored his last wishes. As I was being wheeled out of the hospital in a wheelchair and going home, he was coming along with me.

Once again; thank you.

Home after Transplant, Deciding on a goal

To give you an idea of my condition upon arrival at home I just wanted to have a shower and get to bed. With help I undressed, walked into the shower, turned around once without using soap, left the shower, fell on the bed where prepared towels awaited, I was dried off, and I fell into a drug induced sleep.

There was nothing more I could do. Once home I was useless, but I decided on a goal. In high school I ran in the 400 meter event at a track and field meet and that became my goal to run 400 meters in the transplant Olympics. It’s still my goal a few years later and the best I can do is to walk the 400 meters.

To get to that level has been a struggle and I keep working at it. My transplant was mid august and it was late September before I could start walking outside. I would count off the house numbers, first try to make it to 60 then 20 and so it went until snowfall when I could walk halfway down the street and back, a remarkable 200 feet total.

That winter I could not shovel snow. By the spring sweeping the driveway was a 2 hour ordeal with 4 or 5 15 minute breaks. With the ice I was afraid of falling, I would walk the Loblaws store. My first trip was at Christmas, I drove to the store, got out of the truck and collapsed on a skid of canned coke in the front hall, I “rested” long enough that a clerk came and asked if I needed someone to call an ambulance.

It was a long time and many trips before I could walk the whole store.

Fear and Loathing in Barrhaven I was on a narcotic for pain for a week in the hospital and about a week at home. I wanted to get off it as I had some unusual experiences in Hong Kong with my obstructed bowel and the drugs I received after surgery there.

The hallucinations were quite impressive.The drugs in Canada were not nearly as good, but after only 2 weeks I decided to get off and the withdrawal was possibly the most uncomfortable part of the whole ordeal. It was a few days of Insomnia, body aches, Sweating, combined with the already prevalent vomiting and diarrhea from the high does of anti rejection drugs and an overwhelming sense of anxiety leading to rapid breathing.

The worst part is that you knew if you just took one little pill it would all go away. A few weeks later there was a family wedding, I was unable to attend and friends came over to babysit me. I could sit up and converse, go to the bathroom myself but I was just lying around unable to really do anything. No stamina, generally uncomfortable and not allot of fun to be around.

My transplant was Aug 12 2018 on Aug 29 2018 I was babysat when my wife went to a friends wedding, by Sept 20 2019 I was able to speak at my sons wedding but I was always protected, tired and I had to be driven home at 7:30pm and fell right asleep. I did manage to dance with my grandson but only for a minute. In hindsight my recovery was very slow in the first year.

3 month milestones Nightmares, Psychosis and just let me sleep, although I was walking and active I was also regressing in many ways. The anti rejection drugs were taking a toll on me. The whole drug regime was pretty tough. I was unable to drive due to exhaustion; my eating was off as I threw up most of what I ate. I developed intolerance to dairy products; I would only sleep for a few hours at a time, but did it around the clock.

Over 3 months I lost 15 kilograms. Judy drove me to all my clinic visits and at times I could not walk and required the assistance of a wheel chair, if I walked it was a dozen steps. It was all very depressing, it started with clinic visit twice a week at first and by 3 months it was down to once every 2 weeks as different drugs were tried to try to reduce my symptoms.

Those first 3 months were possible the most difficult, my activity level started at zero and by the end of the month I was able to shower and dress myself, but for the next 2 months not allot of progress was made except I kept the kidney!

I did little other than see doctors,watch TV and take about 20 different pills every day.

Exhaustion / Drug changes The drugs flow freely after a transplant. I was off the opiates; I turned down Lipitor in the hospital, which lower cholesterol. Lipitor also raise blood sugar levels and lead to type 2 diabetes. Cognitive impairment, memory loss, confusion, and forgetfulness were other problems that the FDA warns of. I was told post transplant diabetes was a given, so I decided not to encourage it, confusion and forgetfulness were my super powers so when I asked the doctors about the diabetes and forgetfulness they nodded and said “no need then, but it’s a good drug” and there was no further discussion.

I developed a problem with GERD, it only got worse post transplant. I had been prescribed Pantoloc and while on dialysis it became policy in the dialysis clinic to get everyone off Pantoloc because it also caused dementia.

I was struggling with this drug; it was difficult to get off, mostly because it allowed you to eat the foods that caused the GERD so when you stop the Pantoloc the GERD is severe. You need to change your diet when on Pantoloc. I started with oats to settle my stomach and added different foods finding out what was causing the stomach upset. Through a trial and error process over a few months and in consultation with Marie José the pharmacist and nephrologists I/we found a combination of foods / meds that did not upset my tummy. I was then able to stop taking the Pantoloc and possibly avoid drug induced dementia.

Looking for that combination of foods and meds that would not cause turmoil in my body lead to me keeping a chart I still keep where I record my pills, BP, temp, the food I eat, my sleep patterns and activity daily. It has become a habit. It was born of necessity trying to find patterns and because one missed anti rejection pill could lead to failure of my new kidney it also has become very comforting.

Blood Pressure Medications have been a constant source of problems and side effects. I suggest you write down the advice doctors give you and then compare that with the documented sided effects and then compare that with what actually happens to you. WhatI found is that doctors have favorite drugs. The next doctor may have a different favorite that sometimes contradict the previous doctor’s opinion.

You would think science would prevail, but availability bias and confirmation bias afflicts doctors as well and then we are all human I suppose. If you are ever in a nephrology clinic every doctor will try to prescribe you Lasik, in my case it lead to severe low blood pressure and permanent hearing loss.

How will I find you in my next life? One of the worst moments during this time was a period of paralysis that lasted about an hour. I was frozen in my chair unable to move watching things go on around me.

No one really noticed my lack of movement as I was fairly inactive at that point. Outside it just looked like I was resting, inside I was screaming. I thought I was dying. During that time my one concern was how will I find my wife in my next life?

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