Worn Down

[PKDPatient]

Hi, everyone! This is my first post ... it was so nice to find this site with so much information! :D

I was diagnosed with PKD when I was 19 years old ... after five years of insanely high blood pressure and other health issues. My first nephrologist warned me that the earlier you're diagnosed ... the more issues and complications you'll have. In retrospect, I guess he was right ...

Fast forward ... I'm now 37. In the past few years, my function level has gone from 60% to around 50%. If I remember correctly, my creatinine level is around 1.3. I've noticed subtle changes in the last few years ... odd things that no one could explain.

Like ... I don't really care for meat anymore. I can choke down seafood and chicken ... but red meat is nearly impossible. I can't really tell you why ... it just doesn't taste good anymore.

When I'm active ... walking a lot ... bending ... whatever ... I get a noticable blood in my urine. My nephrologist says it's cysts breaking ... and that the breaking is also causing the pain I have on my left side.

Also, I have a limited amount of energy over the course of a day. I can run errands ... be the busiest little bee you've ever seen ... but when the energy is gone ... it's just gone. It's almost as though I've had to learn to budget. If we're only doing one big thing over the weekend, I can go wild ... if we've got a whole day planned, then I'd better take it easy, you know?

And that brings us to why I'm writing ...

My beloved husband .... who is WONDERFUL to me ... thinks I should be pushing myself harder. When I try to explain that I just get worn out because of the PKD ... I think he thinks that I'm using that as an excuse. He says I should just push myself harder when I get tired like that ... but when I do push myself, I end up going to bed and sleeping 12 or 13 hours because I'm literally exhausted.

It's hard to explain to people ... because you LOOK fine. Your disease is on the inside ... not on the out where it's obvious.

So, honestly ... as a kidney patient ... SHOULD I push myself harder? If I feel myself getting worn down, should I rest ... or should I just keep going ... in the hopes of building up some kind of tolerance to this?

The nephrologist says that we've got to work on maintaining my health ... so I'm not sure if this means resting when I'm worn or pushing myself to the limit. Any suggestions?

[Beth Witten MSW ACSW]

The PKD Foundation has excellent books and booklets for people with PKD and their families. You can find these at http://www.pkdcure.org under About PKD. Look for Patient Resources. From reading the PKD Patients Manual and Q&A, I learned that people with high blood pressure have bigger kidneys. Some activities can cause the cysts to break and blood in the urine. People who have blood in their urine often have bigger kidneys. The ?Q&A booklet said that most polycystic kidneys weigh 20-25 lbs each. Obviously, the bigger the kidneys the more easily someone might tire out. To keep physically fit, the Q&A booklet recommends low impact exercises (walking, swimming, and biking). However, it suggests avoiding activities that cause the cysts to bleed and we always recommend that patients talk with their doctors before beginning an exercise program.

If you haven't contacted, the PKD Foundation, you might want to consider doing that. Their phone number is 1-800-PKD-CURE. You can also join an onling community through the PKD website and read stories of people with PKD there as well. Finally, the PKD Foundation is planning their annual meeting June 22-24 in Orlando. Patients and families are encouraged to attend. I suspect you'd learn a lot from the talks and from meeting others with PKD. If you can't go this year, plan to attend a future meeting.

[DoriSchatell]

PKD patient, there are a couple of things that you've said that don't seem typical to me. Are you certain of what your kidney function is NOW? It may be time to be rechecked. Sometimes the "slope" of progressive kidney disease is gradual, and sometimes something triggers it to move a lot faster. You're having symptoms like fatigue and protein aversion with a creatinine of 1.3 and kidney function of 50-60%--and those are usually things that happen later.

I wonder if you have anemia--this is something that causes severe fatigue and is diagnosed with a simple blood test (complete blood count) that you could ask your doctor for. Healthy kidneys make a hormone called erythropoietin that tells your bone marrow to make new red blood cells when you don't have enough. In general, folks with PKD tend to have fewer problems with anemia, but your fatigue is something to have checked out.

As far as pushing yourself through it, it's hard to say. Again, in general, the body is like a rechargeable battery and exercise is what recharges it. Even if you do have anemia, exercise is something that can help combat its effects. But, as Beth noted, you need to be careful about impact, and the extra weight of your kidneys could be making you even more tired. So, this is a question that you might do best to ask your nephrologist (kidney specialist). Please note, though, that not all nephrologists are experts in PKD. If/when you contact the PKD foundation, maybe they could point you to one in your area who IS an expert and can give you the kind of advice that will help you to be more active.

[PKDPatient]

Thank you both so much! I called my Nephrologist and I'll be going in shortly to be screened for anemia and to check on my function. I did talk to her about my fatigue and the frequent blood in my urine. She said my scans show that my kidneys are especially large and there seems to be a lot of cysts breaking.

If I understood her correctly, the difficulty comes in balancing the need to limit the damage to the kidney vs. the need to stay active and keep my natural energy level up. We'll know more after the bloodwork comes back ... thank you all SO much for your help. I'm getting in touch with the PKD Foundation also ... I believe my nephrologist is wonderful. However, it'd be nice to know if there's a PKD "specialist" in my area.

Much MUCH thanks!