Posts Tagged ‘Organ transplantation’
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A Veteran’s Take on being a Renal Patient: Ten Things I have Learned
So this article is a response/extension of an article I read earlier today.
A Rookie’s Take on Dialysis: Ten Things I Have Learned So Far.
Dialysis machines in Barrie, Ontario
I have been a renal patient since 1985. I have been on peritoneal dialysis twice, and hemodialysis once. In addition, I have had three renal transplants.
1. You’ll wait on the transplant list for what seems like forever.
It takes a good year just to get on the transplant list due to all the testing, and vetting the doctor’s and hospital’s like to do.
WARNING: Once you’re on the list, don’t change transplant centre’s or you’ll have to start over from scratch!
In 2008 I moved from Ottawa, to Barrie. I got set up with St. Michael’s Hospital in Toronto. It took me 2 years to get on the transplant list with St. Mike’s.
2. The medical staff is not your friend.
Yes it may seem like it is one big happy family. Our unit has an annual Christmas party. It’s fun (if you choose to attend,) and probably worth attending once or twice. But you have to remember the staff aren’t your friend. They are there to get paid. So if you think something is wrong, or needs investigating, etc. it’s on YOU to inform the staff. And stick to your guns. It beats having to go to the ER when something does happen.
The staff like you to believe you can live a normal life. So believe it, and follow through on it. If you need a shift change, demand it. I’ve missed dialysis a few times over the years because a change wasn’t possible. Call their bluff. Now I know what I have to do to get that change.
3. Dialysis > Death
That is such bullshit! Ok, so I’m alive.
That isn’t always better to how you feel while a dialysis patient. With the amount of dialysis we get, you don’t feel like you did when you had fully functioning kidneys.
Back to #2 – You have a right to live your life, otherwise why are you on dialysis in the first place?
4. Warm blankets are one of the best things in the world.
Warm blankets are better than hot, fresh pizza! But you should always bring a blanket just in case your unit runs out of warm blankets, or even worse, doesn’t have any to begin with. (Like at Soldier’s Memorial Hospital in Orillia.)
5. Stand up for yourself.
This definitely goes back to some of what I’ve already written here.
When you’re admitted to the hospital for whatever reason (line insertion, transplant, fistula, line infection, clot, etc.) stand up for yourself. The last time I was admitted, I didn’t get my admission papers until the day before I was released. So demand them.
Don’t like the food? Demand better.
Write a letter/email to the CEO. Talk to the nurse or patient rep. (Many hospitals now have patient rep’s to see to your care and needs. Talk to them!) Or what I did; I knocked on the unit manager’s door, and let myself in. I got what I needed in a New York minute.
6. Relax.
This seems to contradict everything else I’ve written so far. However, if you don’t relax your blood pressure, and heart rate will go up. You won’t be doing yourself any favours. So when you have time, relax. I try to relax while on dialysis, but seeing as how my blood is passing through me at a fast rate, not always the best time.
7. A transplant doesn’t last forever.
A transplant doesn’t last forever. The current estimate (and I’m not a doctor,) is 20 years for a full life of a transplant, and 10 for a half life. Most recipients will be back on dialysis after about the 10 year mark.
There are many recipients who are exceptions to this.
8. Dialysis is not a mental game.
See #6. If you psych yourself out over going to dialysis, then you’ll just cause your blood pressure to rise, and your heart rate to rise. Think of it as an opportunity to be away from the kids, or co-workers, etc for a few hours. It’s ‘you’ time.
9. Drugs.
Weather you’re on dialysis, or have a transplant – there are so many fracking drugs! So make sure to discuss them all with your pharmacist. In Ontario, you can go for a MedsCheck review once a year. It’s paid for by OHIP. Go over your meds, check there aren’t any that have been discontinued, that the pharmacy has the right dosages, etc.
Before any transplant, the social worker at your transplant centre will meet with you and ensure you have proper insurance coverage to pay for them. If not, the social worker will help you there too.
Many of the drug companies now have programs that if you loose coverage, they’ll provide your drugs for free. So be sure to ask about that, and to enroll!
10. Everything else.
- Keep an eye on your ‘dialysis adequacy‘. It’s a measure to determine if you’re getting enough dialysis or not. My unit checks mine every month. But they may not tell you what it is. So ask! You might be able to reduce the amount of time you spend there.
- Your creatinine level will never be the same again. Not even with a transplant. It’ll be close once you have a transplant, but will never be what it was when you were perfectly healthy.
- If your unit offers coffee/tea/other drinks, it’s a good idea to bring your own mug! (You save the environment, and get more than fits in a tiny styrofoam cup.)
- Be nice to the staff. They can make your life very difficult. You should stand up for yourself, but do it in a polite way.
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Renal services in Barrie – a letter
11 September, 2014
Janice Skot, President & CEO
Royal Victoria Regional Health Centre
201 Georgian Drive
Barrie, Ontario L4M 6M2Dialysis machines in Barrie, Ontario
RE: Renal services at RVH
Dear Ms. Skot,
Have you ever had to undergo long-term treatment for an ailment like cancer, or dialysis for failing kidneys?
I have been a renal patient for approximately 30 years. I have been to a number of renal clinics, from the Hospital for Sick Children, to The Ottawa Hospital, to yours; and seen the various models, and services. What RVH currently offers is, in my opinion, both a blessing and a curse.
The other day I had to visit RVH to have a blood transfusion in the medical treatment clinic. It was a very nice clinic, with three nice nurses. At any other hospital, I could simply have had that transfusion during my dialysis treatment. I already spend upwards if 12 hours a week at medical treatment, I don’t really enjoy spending extra time on top of that, when a volunteer could simply have gotten into a cab, and brought it over to the dialysis unit. Or RVH could do this new, and novel approach many hospitals are practicing – by putting the dialysis unit in the main hospital.
Why is this not a priority?
In many ways, I love that the dialysis unit is separate. You’re saving me a ton of money on parking. But then you go and try to gouge me by paying to watch your TV. I haven’t spent a dime on it. (I choose not to watch it.) As far as I am aware, RVH is the only hospital in Ontario to charge its dialysis patients to watch TV. We have no choice but to be there three times a week, and you want to nickel and dime us?
Ultimately, however, Barrie as a city has approximately 135,711 residents, according to the 2011 census. Kingston, Ontario as a city has approximately 123,363. Kingston General Hospital has a renal transplant program. Why does RVH not have one? And don’t use us not having a University as an excuse. RVH could easily partner with the University of Toronto like you already have for the family medicine program.
As a result of this situation, I would like you and RVH to make renal services a priority. Start now to bring a transplant program to RVH in the next 5 – 10 years. At the end of the day, Ms. Skot, it’s go time!
Respectfully yours,
Peter V. Tretter
P.S. Could you please do something about all those styrofoam cups that end up in the landfill? Perhaps by replacing them with paper cups that can be recycled? Thank you.
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The gift of life
I have been a renal patient since the age of 6. I had chicken pox, and that lead my already diseased kidney’s
Kidney location after transplantation. Adapted from the original source to enlarge labels, and to fix a labelling error – “artery” and “vein” were transposed. See this discussion on the English Wikipedia. (Photo credit: Wikipedia)
to not work. So I went on peritoneal dialysis. Every night while I slept, I had dialysis at home. I was doing ok but I wasn’t doing great. When you’re that age, you don’t want to take your tums (yuck!), or eat if you don’t feel like it.
So at the age of 8 I had my first transplant at the Children’s Hospital of Eastern Ontario (via the Ottawa General Hospital.) It was a great solution, I started eating more, and gaining weight. Unfortunately, I only had that transplant for five years. Fortunately, at the time you didn’t need to go back on dialysis to go on the transplant list, so a few months after I was placed on the list…
I got my second transplant. That was very fortunate, as I was in grade 6 at the time. Two years later I had to have a follow up surgery to repair the connection between my kidney and bladder. That kidney, thankfully, lasted 7 years. At this point my doctor’s started asking questions, mainly about why my kidney isn’t lasting the 10 – 20 years they expect.
I was born with Nephrotic Syndrome. You can click the link for more detail, but the laymen’s version is scarring on my kidney. The current theory is that this syndrome will continue to attack future kidney’s, meaning it’s possible I may only keep a kidney 5 – 10 years.
In 2002, I had my third transplant which also lasted 5 years. I am on the transplant list, to be one of a handful of people worldwide to have a fourth transplant, but so far I have been on the list for 7 years. I may have a long wait. Why? Due to the number of blood products (transfusions, transplants, etc) I have pretty much every antibody there is. So they are very careful which kidney they will match to me, to ensure it is a success.
This is why a living donor kidney would be most beneficial to me.
Living kidney donation has revolutionized kidney transplantation and many studies have confirmed the longer survival times for kidneys from a living donor. There are many other benefits of having a transplant from a living donor: (Source for this part.)
• Living donation eliminates the recipient’s need to wait for a transplant on the
waiting list.
• Short and long term survival rates are significantly better and provide a better outcome
than transplants from deceased donors. (On average approximately 20 years for a
kidney from a living donor, compared to 13 years for a kidney from a deceased donor).
• You know the donor, his/her lifestyle choices and history
• The kidneys almost always start functioning immediately, deceased donor kidneys can
take from a few days up to a few weeks to start functioning. (Recipient needs to return
to dialysis.)
• Shortens the waiting time for others on the waiting list
• An individuals health deteriorates the longer you are on dialysis
• A living kidney transplant doubles the life expectancy of the patient, compared to being
on dialysis.
• Kidney dialysis is very expensive. The payback for the initial cost for a transplant is one year, even after taking into effect the ongoing cost of anti-rejection drugs.
• You have time to plan for the transplant
• Waiting for a deceased donor can be very stressful.
• The surgery can be scheduled at a mutually-agreed upon time rather than performed as
an emergency operation.
• Perhaps the most important aspect of living donation is the psychological benefit. The
recipient can experience positive feelings knowing that the gift came from a loved one
or someone who cares for you. The donor experiences the satisfaction of knowing that
he or she has contributed to the improved health of the recipient.If you would like to know more, and/or be tested, you can contact Maureen Connelly, the Living Donor Coordinator, at St. Michael’s Hospital (Toronto’s urban Angel) at 416-867-3676. And if you’re not yet registered to be a donor after parting life, I encourage you to visit beadonor.ca
Thank you for taking the time to read this blog post.
Peter Tretter
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