Polycystic Kidney Disease (PKD) Support Group

I can't imagine why you would even think that being so close to ESRD would leave you anything but tired. I was exhausted and barely able to think before I started dialysis.
doing PD you will have to keep the area clean so you won't be able to keep animals in the same room. there is no reason once your access heals that you can't continue to do your volunteer work. you may still be able to ride as long as you are not doing anything too strenuous,
I can't speak about your future on dialysis but I can tell you that I felt a whole lot better once I started. after all, walking around with toxins in your blood can't possibly feel good. once your blood is clear you will have more energy and feel a whole lot better.
good luck and let us know how you do.

Befor dialysis i was riding my bike at 15 to 16 MPH over 50 miles or so. When my kidneys were failing i couldn't walk 30 feet without having to either sit down or pass out. Since i started dialysis i am back up to 15 or 16 MPH over 50 miles on a bike. Do i feel as good as before the kidneys failed? NO. Do i feel as bad as when they were saying by by? NO i am somewhere inbetween but closer to before they failed than when they failed
Bottom line is this. This is my life right now, it can get better when i transplant but before, now, and after i am going to live one day at a time and make the most of it

Hey Woodlawn!!

I completely understand where you are coming from I am in bwt stage 4 and 5 myself. It is normal in our situation to be very exhausted. I usually sleep 10 hours and when I wake up I feel like I never slept!!! I think if you don't anything to jar your kidneys to hard and keep after the infection you should be able to still do your volunteer work. But it is really up to how you feel.

Woodlawn,
You're not whining at all; you have very valid concerns and this is a great forum to express them in.

There is absolutely no reason for you to avoid your horse or to avoid horseback riding if you enjoy it and it doesn't cause pain. You're not going to get an infection from riding your horse or working in the barn anymore than you are from making dinner and eating in the kitchen (and the latter is more likely given the safety of our food supply). Just continue the good hygiene techiniques, wash you hands regularly just as you have, and you'll be fine.

If you're not rupturing cysts by riding now, you're not going to do so because some numbers on a lab sheet change. If you're not getting infections now, you're not going to now because some numbers on a lab sheet change. And any doctor who tells you to give up the love of your life, be it a horse or a child, is a selfish sob and doesn't understand medicine. The only time someone needs to give up an animal is a transplant patient who owns birds and that is because of a particular virus that birds carry that can cause rejection in tranplant patients. Otherwise you can enjoy all of your animals, your riding and all of life's other pleasures.

As for the exhaustion, I don't know what your GFR is (between stage 4 and 5 is a big range). But chances are that yes, the kidney disease is contributing to your exhaustion and sleeping 11-12 hours is your body's way of coping. Do you have copies of all of your lab tests? If so, what are your hematocrit and hemoglobin levels? And how is your iron, b-12 and folate levels? Are you anemic? Many of us are anemic long before we need dialysis and need supplemental iron and/or erthyropoetin, the hormone the kidneys naturally produce to tell the bone marrow to make red blood cells, yet reduce or cease production of when the kidney start to fail. There are treatment options that can help you feel much better and you don't need to wait till you're on dialysis to get them.

You also need to ensure your doctor(s) are treating you as a whole person and not just a set of kidneys. When was the last time anyone checked your thyroid levels? Thyroid problems are common in women in their 40s or later, yet our doctors tend to focus on our primary problems, PKD, and neglect the rest of us, much to our detriment. If you treat the thyroid problems, if they exist, you will also feel better.

Talk with your doctor about your exhaustion. And get copies of all your labs and get him/her to explain them to you. And also get your doctor to explain dialysis in more detail, what your options are, when you will actually need it, etc. Being an informed and assertive patient helps you to understand what you're facing and to face the fear head on with knowledge. You're not alone and there are many here who can help answer any questions you have.

Gentle hugs,
Ruth