The Transplant itself is a big event, but the operation pales in comparison to the side effects. By that I mean the days I spent in the hospital waiting for a kidney, having the surgery and recovering from the surgery was not the hard part of this whole ordeal.
It’s funny because if I run into someone and they ask about things they usually start with I heard you got a kidney. This does not really reflect the diagnosis, the shock of loosing your abilities, the experiences of Peritoneal and Hemo Dialysis, the feeling of having catheters stuck in your belly and neck for years on end, the threat of infection, the testing, the many other indignities and surgeries, the tedium, the terror, the many reactions to various drug combinations and the coming to terms with your mortality.
Yes I got a kidney I will say, and I am grateful to the unknown donor, have your signed your donation card I will say. They almost always say yes, but I know they have not.
Somewhere out there is a family wondering who got the kidney, I sent them a thank you note, I don’t know if the hospital actually delivered it. If your son, husband or brother died on August 19 2018 in North Bay, and you gave up his kidney I got it.
Thank you does not begin to express the gratitude I feel. I have for a few brief years my life back. A day does not go by where I do not thank “Robin”.
The process of getting on the transplant list was strait forward enough. They want to qualify people for a transplant. Life is better after transplant. A transplant is a close to a cure as an End Stage Renal Patient can get.
First they want to know if you can call a friend and get a live kidney. If the answer is yes it’s a matter of qualifying and schedulingthe surgery. You could be transplanted in 3 months.
If you are depending on the goodwill of others than there is waiting involved. In either case there are interviews, lots of blood work, ultrasounds, treadmills, and pre surgery conferences, mis starts and warnings.
I was told in no uncertain terms that the outcome would be a new kidney that could last for 5 to 15 years and I was guaranteed to get skin cancer and diabetes. The probability is that I would die from cancer not kidney failure.
If I can accept those facts then I can move forward. Do you still want to wait for 5 to 7 years for the transplant? I said yes, but not everyone does.Because I live in Canada there was one aspect I did not have to worry about and that is the cost.
The biggest complaint would be the cost of hospital parking, but guess what. They give you a special card so its only $40.00 every three months for parking so that is not evens a complaint worth making.
I was shocked but not surprised when I discovered that a disposable dialysis filter in Canada was a reusable filter in the US. The filter was reused up to 50 times between different patients. I believe that for profit should not be in the health care system. Being a Canadian makes me the lucky one.
Qualifying for a transplant in Canada follows the Canadian Society of Transplantation consensus guidelines on eligibility for kidney transplantation.
The basic checklist goes like this:
- No cancers, infections, or uncorrectable heart disease.
- No history of chronic non-compliance, hence my new found interest in shutting up and doing what I was told. Care after transplantation is important, it was explained to me that they care as much about respecting the donor as they care for you so they don’t want to give a kidney to an irresponsible fool who will not respect the gift.
3.You are vaccinated, have a chest x-ray, screened for myco bacterium, and purified protein derivative skin testing, a Serostatus for cytomegalovirus and Epstein–Barr virus and Screened for HIV infection.
4.No chronic drug abuse including alcohol. You have to keep in mind that some of the anti rejection drugs will mess up your head and mixing and matching with illicit drugs and alcohol is sure to backfire.
5.No Psychiatric problems that would be considered a high risk for increased severity of the disorder after transplantation. “Tacrolimus, a commonly used immunosuppressive drug can lead to Tacrolimus-induced psychosis.
If quickly identified and substituting with another immuno suppressant the Tacrolimus – associated neurotoxicity may be reversed by discontinuing the use of the drugs.
As soon as you start dialysis you are on the waiting list. If you’re on top of things and seeing your doctor for a yearly check-up and they discover your diminished kidney function a few years in advance of End Stage Renal failure then you can start on the waiting list years before you need a transplant.
“Pre emptive kidney transplantation should not proceed unless the measured or calculated glomerular filtration rate is less than 20 mL/min and there is evidence of progressive and irreversible deterioration in renal function over the previous 6–12 months” Which means that if your glomerular filtration drops to 20mL/min which means you are still walking about, you could be eligible for a transplant. Long before dialysis starts.
A pre emptive transplant is such a good idea. I was weakened by my diminished kidney function, 3 years of dialysis, the recovery from surgery, and the side effects of the drugs, it all would have been allot less painful if I had been proactive.
You met allot of people in the dialysis center that cannot get a transplant for medical reasons, they simply don’t qualify, you also meet people who do qualify but are a 1/10,000 kidney match.
These people wait 10+ years or never get a transplant. I matched 1 in 3 people who were rolled thru deaths door and were willing to donate a kidney. Why was I so lucky? When I went on the list there were 70 blood type “o+” on the waiting list ahead of me.
After a little over a year and I was number 60 on the list in terms of days waiting, yet I matched every third kidney that was available. Some of the other people on the list ahead of me could only match 1/10,000 or more.
After a little under 2 years I was offered my first of three kidneys. I was assured I would receive a new kidney within a year of that date. When they match a kidney they match on a number of things
1. Age / size, they give a child a child’s kidney and an old man an old mans kidney.
2.Blood typing (ABO compatibility) Blood typing measures blood antibodies. The Rh factor (+ or -) of blood does not matter. The following is by donor:a. blood type A can donate to recipients with A and ABb. blood type B can donate to recipients with blood types B and ABc. blood type AB can donate to recipients with blood type AB onlyd. blood type O can donate to A, B, AB and O (O is universal)
The following applies by recipient.
~type O can receive a kidney from type O only
~type A can receive a kidney from types A and Og
~type B can receive a kidney from types B and Oh.
~type AB can receive from blood types A, B, AB and O
I was O, blood group O is a disadvantage in the allocation of deceased donor organs as it is a match to everyone, but can only take another O. While A, AB and B, can all match with O but O does not match with A, AB and B2 so not only is there a demand for O, if you are O, there is allot of competition for a match to your kidney.
3. HLA Tissue Typing Each person’s tissues, except for identical twins, are different from everyone else’s. The better the HLA match, the more successful the transplant will be over a longer period of time. A parent and child would have at least a 50 percent chance of matching, siblings could have a zero to 100 percent match, and unrelated donors of different races are less likely to match at all.
The hardest people to match are people of mixed racial families. The best match for the recipient is to have 12 out of 12 antigen matches. (This is known as a zero mismatch.)
It is possible for all 12 markers to match, even with an unrelated deceased donor organ, if the patient has a very common HLA type. Mixed race people have a special problem in that their HLA combination is statistically even more unique than 2 Caucasian, or 2 Asians or 2 Africans.
The takeaway is please register to be a donor to increase everyone’s chance of finding a match.
Antibodies to HLA Tissue typing is done for the patient only and is repeated monthly. HLA antibodies can be harmful to the transplanted organ and they can increase or decrease over time so they must be measured while waiting for a transplant. HLA antibody levels can change following events such as blood transfusions, miscarriages, minor surgeries (including dental work or fistula replacement) or severe infections.
Percent Reactive Antibody (PRA) When you are exposed to foreign tissues, through a blood transfusion, exchange of body fluids, pregnancy or previous transplant; you develop antibodies to different HLA proteins. If you have a high level of HLA antibodies, it is more difficult to find a compatible kidney.
Serum Cross match Cells from the donor are mixed with your serum. If the antibodies show up under a special light, its positive and the transplanted kidney would be immediately rejected.
So why was I such an easy match, why was eligible for 1/3 kidneys when others were 1/10,000 allowing me to jump to the front of the line?
I was O; I had no blood transfusions, no previous transplants, and low HLA and PLA counts. Having married my college sweetheart my rate of “protein exchange” was low so was my PRA count, PRA attaches to protein, now think of all the ways we share proteins away from the dinner table.
Turning down a kidney #1
My doctor turned down the first kidney that was offered without even talking to me. The reason she explained was because it was a 75 plus year old person, I was in early 60’s and had no co morbidities so I should get a kidney from a 50 or 55 year old it could carry me through for 10 or 20 years if I was lucky.
It might only last 3 or 4 but better to try for a better one and that is when I learned about my 1/3 chance. I met the transplant coordinator after that and she explained I would be transplanted in 6 month to a year.
Cemetery Road Exit; waiting on death in the General Hospital #2
A few months later I got a call while I was driving my winter tires to be stored at my farm. I got a cell call and was asked to pull over by the caller from the General Hospital.
At 5:00 pm on the side of the road on the Queensway at Moodie it was explained to me that another kidney was available and I was to go the General Hospital at 10:00 am the next day. The patient was dying, but not brain dead and I needed to be at the hospital when the donor died. I agreed to be there in the morning and continued on my drive to the farm to get rid of tires.
I called my wife with the good news and she said I was nuts and should turn around, in fact I was in shock. So I got off the next expressway off ramp and turned around. Hoping it was not an omen the name of the exit was the cemetery roadexit on highway 7.
A restless night ensued and we were at the hospital the next day. I was admitted and we waited. We waited for 4 days, sadly the death of the donor took a long time and in the process the kidney was damaged and we were sent home with no transplant.
At least at that point I knew I was at the “top” of the list and I was assured it would only be a short time.
Decisions on the side of the road; Kidney from North Bay #3 a charm
Judy and I have very vivid memories of the third call we received. It was also on the Queensway at the Moodie exit. It was pouring rain and we pulled over to the side of the Queensway. After about a half hour discussion the 5 o’clock traffic cleared briefly and I started to move and pulled off onto an overpass to continue listening to the doctor and transplant coordinator outline the situation.
It was explained that none of the “problems” with the kidney were a big deal. They were portrayed as just a formality they were required to inform us about. All in good fun just to follow the rules in Canada.
One little problem was AIDS. The partner of the donor had had unprotected sex in Africa 20 years earlier. They assured us that there was no AIDS in the donor but it must be reported. I was tested for aids for 6 months after the surgery.
The donor died of an abscess on his brain. He had received massive doses of antibiotics and the infection was dead in his body, it just ate his brain, so not to worry. I could not get sick the way the donor did.
And lastly was something called the Epstein Barr virus. I had no idea what this was and I was told it was a virus that 95% of the adult population had, it’s just that I did not.
When an Epstein Barr positive kidney (the donor) goes into an Epstein Barr negative patient (me) the patient gets EBV. This is only a problem 1% of the time and can easily be treated with a slight change in the meds.
Remember that comment.
This is why we pulled off the Queensway onto an off ramp for some peace and quiet to reflect on all this new information. As the discussion went on and our questions got more and more specific it was explained to us that a surgical crew was at the airport with a Lear jet on standby, they were ready to fly to North Bay, get the kidney and come back and do the surgery tonight.
Do you want the kidney, if not we need to go to the next name on the list.My wife’s response was guarded and cautious; my attitude was let us get this over with. I was fed up with dialysis; a bit depressed, overwhelmed by the decision and said F it lets go. And we did.It turns out EBV is a bigger problem then they let on….
It turns out Epstein Barr is just mononucleosis unless you are on immune suppressants. Immune suppressed as in after a transplant. They said about 1% of EBV+ people who have a transplant get a flare up of EBV. This is not true. 100% is the actual number.
The understanding of the doctor who was coaching us was wrong, flat out wrong. She did not know what she was talking about. In fact the entire department of nephrology at the Ottawa General Hospital ignores the research on this topic. It is quite extensive. The belief is that the risk of EBV is less than the risk of dialysis. A comparision of risk shows them to be wrong.
The actual number is 100%, 100% of EBV- who then become EBV+ from a transplant (me) get EBV. An at that moment you are immune suppressed. The EBV proliferates out of control. Then if unlucky you can graduate to something called Post Transplant Lymph proliferative Disease (PTLP).
It’s important to note that I never progressed to PTLD, That’s not what makes it an interesting story.It’s that when you go from – to + and they track the progress of the EBV at some point they have a conversation with you that goes like this
Team of Doctors: “Uhhh sorry, its was not a mistake, but sorry you have EBV that seems to be Uhhh out of control, could lead to PTLD Uhhh, if we don’t cut your immunosuppressant’s you could Uhhh require chemotherapy, but its not cancer.
Me: Oh jeez, won’t cutting the anti rejection drugs lead to me rejecting my kidney? And what is PTLD? Oh jeez was this all a mistake?
Team of Doctors: Uhhh, sorry but that PTLD, it’s not happening. It was not a mistake; it’s just your situation this happens about 1% of the time. And yes you could lose your kidney. But hey would you rather die from PTLD, which you don’thave, lets me clear.
Me: Yah, sure I guess that make me the lucky one I guess. I mean thank you.
So my situation was every week I do blood work and watch my EBV level go up. The count goes 1,000, then 3,000, then 5,000 and when it goes to 20,000 and 30,000 you have EBV Viremia and your chances of aquiring PTLD goes up dramatically corresponding to your EBV level.
According to the literature it happens fast and well, you die.The number they kept quoting was 1% but the literature was pretty clear, it was up to 16% of the time it progressed to PTLD most often in my situation, EBV – before transplant.
In pediatric kidney transplants where there is a high incidence of EBV- transplants it progresses to PTLD up to 10% of the time.The good news is there is a treatment, always worse without one, it just that “the cornerstone of the treatment of patients with (EBV and) PTLD is restoring the host’s immunity by reduction of immunosuppressive drug therapy”
PTLD is not uncommon and appears to first year post-transplant. Being EBV negative at the time of transplant confer an increased risk, but the overall risk of PTLD has decreased over the last 15 years.
This was to become a major stress after the transplant, for me and between myself and the doctors. All of these problems are in a paragraph in a book they give you at the beginning of this ordeal, when they tell you about it, they also say you could wait for 8 or 12 years for a transplant and until you live it, you really don’t understand it.
Transplant Surgery My last memory going in was the Surgeon explaining the catheter strategy, I was in pre-op at the time and I remember watching him like I was looking through a long tunnel. My memory of that event was “oh a friend is here to talk to me, how nice” I was floating on a very soft “cloud” of some sort of drug.
I have no memory of going into the surgery, or coming out of surgery. I have no real memories of the recovery room my first memory is waking up the next day in my room. I also have no real memories of any pain.
I remember the discomfort of trying to move but I was on a wide range of pain killer including some narcotics. While I have no memory that is not to say it did not affect me.
I can remember taking picture of the process of my vasectomy, nothing graphic, just the whole process and I could laugh about that with my friends.
After my obstructed bowel surgery in Hong Kong I left Hong Kong with a big insurance package with all my x-rays and a full colour 11×14 of a mid surgery snap shot showing where my bowel was obstructed.
That I could study and look at and it had no effect. But this surgery was different. I could not look in the mirror at the scar for a year, I found myself waking up in the middle of the night moaning not in pain but discomfort over the surgery and it’s very difficult for me to watch a TV show about medical issues let alone look at a picture of my insides if one were available.
My thanks to my surgeon Dr Blew who had an excellent bedside manner and did everything he could to ease my concerns and discomfort. Dr Blew was very kind and in every way I am grateful for his skill and kindness.
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