• A Veteran’s Take on being a Renal Patient: Ten Things I have Learned

    Date: 2015.03.07 | Category: Health, Rants & complaints | Tags: ,,,,,,

    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

    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.