What's your experience with dialysis? Give & get support here

@wickenburger, wishing you well and hope you get the transplant soon. Glad to hear you are managing dialysis without problems. Unlike you, I can imagine doing dialysis the rest of my life since I can't do a transplant. So far it's been fairly easy but I've only had 4 sessions so far. I appreciate your post, it gives me a positive feeling I'll be able to deal with dialysis ok.

Sunday thoughts

I’ve heard that some patients complain about the time required by dialysis despite their desire to stay alive, Three days a week (every other day) for anywhere from three to five hours on a machine can be exhausting. It can also be painful being stuck by needles or having nausea or cramps as fluids are taken off. By the time a person has been driven to the unit then waited for a treatment bay to be available then weighed then hooked up, dialyzed and at last taken back home, the better part of a day is gone.

But I've also read that dialysis doesn’t necessarily have to be”lost” time. The four sessions I’ve had so far I’ve been able to cat-nap, in between brief visits with other patients and the nurses punctuated by lots of good humor and laughter. I could’ve watched TV but am not much of a TV person, I could’ve read a book but already was too tired, I preferred meditating or dozing off. This likely will change as treatment advances and I may be able to read as the unfamiliar becomes familiar and I adjust to this new way of doing things.

The last hour is the hardest since I have spinal and mobility issues and even though the clinic has made every effort to provide a comfortable environment, this old lady’s back really hurts that last half hour.

Gives a brand new meaning to being present in the moment!

It’s still a good day to live!

@wickenburger I can’t imagine how you find it within your would to forgive that doctor. You seem to be making the best of a truly terrible situation

You have to move on. It does make me angry each time I get a life threatening infection or a Dr invoice for treatment related to the post op complications. My entire biliary system was reconstructed. Its been a long haul. I am trying to be informed about all of my medical history and new diagnosis. I look up everything watch u tube videos about recent medical treatments improvement the Dr presentations at conferences are great.

@wickenburger

I totally agree that there is great information through recorded medical conferences. I was weaned off a medication about 6 months ago after seeing an expert panelist describe it being harmful to a condition I have. I went twice to medical professionals who assured me that it was fine before being aggressive enough to insist they consult with the expert I watchwd. The proof was undeniable that the medication they prescribed was dangerous to me. It's absolutely worth researching wherever you can.

I'm so sorry that your surgeon caused more harm than good but your attitude and perseverance are going to get you far. Dwelling on the past will suck up your energy and get you no where.

Best of luck!
J

I have certainly learned a lot of medical terms. Each time I mention to my Team something I would like to explore they are slightly perturbed about my strong opinions

@wickenburger Welcome to Mayo Connect. Your story is sad to read, that you had medical malpractice issues. Hearing of your triumph in spite of that, and successful dialysis, shows your strength of character.
Where are you listed? Have you looked for a living donor?
Ginger

Hi Ginger
Thank you I am not alone so many warriors in Dialysis. I am listed at Mayo Phx. I do have a living donor I also will accept a deceased donor and a Hep kidney I am thinking at my age I should improve my options
You have a good Sunday keep posting

The medical treatment that you receive should be yours, and yours alone. The physicians guide you into making the decision, however it is your decision not theirs. To the extent they do not appreciate that, you may consider a second, third, or fourth opinion. In my case, after getting four differing opinions, I went from my big city to Mayo Clinic in Rochester where the doctors put the patient first. They have earned my trust. I have never stopped returning.

@wickenburger, you sound like me. I'm one of "those" patients, aka "difficult." I have a medical background and am intelligent enough to know when something's not quite right. When I injured my leg right after placement of my permacath and couldn't transfer from bed to wheelchair and back or chair to toilet and back, I pitched a fit when I learned they were going to send me home. They offered nursing home placement and I had another hissy fit. Ultimately they decided it was best to admit me to the hospital for a few days, dialyze me there and let my leg rest from the soft tissue injury so I wouldn't go home and fall flat on my face. You're right to inform yourself and to advocate for yourself and if that makes you one of "those" patients known as "difficult," I say you go girl!