Health and the pre-dialysis stage

[tigtink]

I continue to try and think of the most important lessons I've learned during my pre-dialysis days, and one of the first was not assuming all my symptoms were CKD related, and even if they were to keep in mind that those symptoms may be treatable. I was feeling pretty lousy when I found out my kidneys were failing: I was exhausted all the time, my joints hurt, I got out of breath climbing a flight of stairs, and I had trouble concentrating. Life was mostly a daily struggle just to manage the basics. When I found out my kidneys were failing, it all made sense. CKD is a systemic disease that can cause all those side effects and much more. It would have been easy (and tempting) to just conclude I was on a downward spiral and there wasn't much I could do to make things better short of dialysis or transplant.

Then I started reading about people with much lower GFRs than I had at the time who were doing fairly well with fewer symptoms and a better quality of life. So I started to take another look at my symptoms and see what might be going on that I could work on treating or at least managing and minimizing. I did all the usual things first, like being evaluated by a nephrologist, going on an ARB to reduce my proteinuria, and making sure my blood pressure stayed low to slow down progression. And I educated myself about blood results and treatment options. It became clear that this was going to be a long-term project no matter what I did. There were no easy or quick fixes. I wanted a better quality of life in the meantime.

That shift in my thinking from "oh-my-god I am dying and things will only get worse" to "this is about managing a chronic disease and finding a way to improve my quality of life" allowed me to take charge of my health and look for ways to make my daily life more bearable, and maybe even better and fuller than the life I had pre-CKD.

I am very glad now that I took such an approach. It turned out a better quality of life was possible. I discovered four things that were very treatable that could improve my health: I went for a sleep study, discovered I had untreated sleep apnea, and started using a CPAP machine. That alone I believe slowed down the CKD progression, cleared up my mind, and helped me have more energy. That was when things began to turn around for me.

Second, I did some research about CKD and anemia and decided my nephrologist was being too conservative in treating my anemia. My hemoglobin was hovering around 10 and he waited until it went below 10 to start EPO and then tried to maintain it as close to 10 as possible. For many people with CKD, a hemoglobin of 10 would be reasonable but for me it meant extraordinary fatigue and weakness and the loss of my ability to function normally. Plus he only checked my levels every three months which meant that even with EPO my levels bounced around from way too high to way too low. When my new nephrologist took over I had him do monthly testing, and when I explained to him how I felt with hemoglobin of 10 he agreed to let me vary my dosages as long as I kept it between 11-12, restarting the EPO once it got below 11. The result was a drastic improvement in my daily function and much more stable hemoglobin readings at a safe level. My friends will tell you they can tell the difference by just the way I walk whether my hemoglobin is closer to 11 or 10. My nephrologist said I am unusually sensitive to low hemoglobin levels.

Third, and some here will be upset that I would even consider this, I defied common wisdom about a low-protein diet for CKD. I do NOT advocate this for everyone, and it is probably safer for most CKD patients to at least limit their protein intake pre-dialysis to moderate daily protein levels. Many here at IHD are firm believers in an moderately low to extremely low protein diet for stages 3 and 4. I tried, really tried, to limit protein for two years, yet my kidney function dropped, I gained 40 pounds, and my joints got worse and worse from the excess weight. Then I experimented, watching my blood test results carefully each month, and began adding back protein to my diet. I read all the research, and the evidence for a low protein diet seemed to me inconclusive at best so I decided to change my strategy and see what happened. I was prepared to stop if I saw any indication of worsening kidney function. As it turned out, the more protein I ate the better I felt and my GFR went from 15 to 19 within months. I lost 40 pounds over the next two years, felt better overall, and my GFR has stabilized in the 17-19% range. I have protein with every meal now. And when I go for my transplant re-evaluations, the same dieticians who originally advised me to go low-protein tell me to keep doing what I am doing because it is working wonderfully. My point is not that everyone should try this, but that we all need to learn to know our own bodies and find out what works best for us as a unique individual. What I have concluded is that there are as many paths to dealing with CKD as there are people who get diagnosed with it. Doctors can help, and the research guides the way, but to truly make good decisions we must take charge of our own health and be willing to change course when necessary. We each have to forge our own paths.

Fourth, after treating the sleep apnea and anemia and losing the 40 pounds from the change in diet, I felt well enough to start an exercise regime, so I began doing water aerobics at the YMCA. Gradually I increased my time at the pool, and when I decided to try to get on the transplant list at Toledo they gave me a weight goal and I stepped up the exercise and lost 20 more pounds. My latest labs came back this month and my GFR is 19%, creatinine 2.64, potassium 4.5, and hemoglobin is 11. I feel better than I felt five years ago (and much much better than my low point at 14%), I am more active than I've been in years, and I can now afford to wait to get the transplant done where I want to get it done. There are no guarantees, and things could take a nose dive at any time, but I've had a good quality of life without dialysis while I wait for a transplant. Yes, it is hard work and keeping the weight off and continuing the exercise will be a constant challenge, but I'd rather spend 10-15 hours a week playing in the pool with my swim buddies than sitting in a dialysis chair. So I will try to keep going and live as best I can while I am on the list.

For some, none of these things will work and dialysis will be inevitable. I decided early on that if I needed dialysis I would accept it, be thankful, and make the best of it. But because I stepped up and took an active role in maintain and improving my health even after the CKD diagnosis, I've enjoyed a much better quality of life than if I had simply accepted my symptoms as part of an inevitable decline toward kidney failure. From everything I've been told by doctors and transplant coordinators, what gives anyone with CKD the best possible chance for a healthy future is taking charge of your health from the beginning and actively working on it. It is true pre-dialysis, during dialysis, and after transplant. It needs to be a way of life.

I share this because it helps me deal with the frustration of the wait, and because this is the kind of information I was looking for when I came here. Hopefully, this will help someone new to this disease.

[Bill Peckham]

So often people living with a severe disease lose the idea that they have agency. It is very easy to develop a mindset of helplessness against an all powerful force like a severe disease. A person blindsided by severe disease can easily fall into the trap of believing that how we feel, how we perceive our health, our quality of life is beyond our control. I think what you are describing is a sense of agency - you saw that you could impact how you felt. Congrats on staying out of the trap

[Michael Murphy]

The worse thing I have seen is the people who when told that they have ESRD begins to track there lab numbers to determine when the will start dialysis.  The problem with that approach is that every one reacts differently to their GFR.  I ignored my doctor for two years after it was time to start dialysis and they were two great years.  You should spend the time before dialysis first decide your dialysis type, you will hear every one explain that their type of dialysis is the best.  The fact is every type places some limits on a patient the trick is to match you life style to the requirements of each type of dialysis and pick one that is right for you.  Along with this when you decide get what ever acces method installled so when the time comes the starting of dialysis will be easier.  Other than that enjoy the freedom of your predialysis days and do the thing that make you happy.  As a last comment, search this site for Bill Peckham and Grand Canyon. You will find a pictur of Mr Peckham in a raft in the middle of the Grand Cayon on a next stage machine doing his dialysis.  I keep a copy of the picture on my iPad, not because Mr. Peckham is cute, but every now and then I meet a new patient and his family who think that life as they know it is over.  I show them the picture and point out if he could do this in the Grand Canyon going to Disney World with the grand kids is not impossible.  Yes Bill you have caused three families to go to Disney world and have the time of their lives.
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[Charlie B53]

I started Dialysis on PD far earlier than most, still with a gfr of about 20%.  I wasn't sick from the toxins, my labs were still well within acceptable ranges.

I was swollen, filled with excess water.  My legs were like huge balloons, leaking out, soaking my socks, scabbing over during the night, leaking again the next day at work, the scabs sticking to my socks getting pulled off increasing the size and depth of the sores, constantly getting infected and putting me in the hospital numerous times for days and days at a time.  The Dr's told me I had to stop work, apply for SSD and stay home in a chair with my feet up.  It sucked.  I cut back my hours to less than half, working only a few mornings only.  Surprising me SS approved my application on the very first try.  I still ended up quitting work almost two years before starting PD.  Once I did start PD all the water came off within days.  I haven't had a fat leg since.  I still miss working but my physical endurance is gone.  No way could I last even an hour if I was to try today.  Kidneys have continued to decline.  I'm about 4% now.  Still doing quite well just no strength or endurance any more.  But I get by OK.

[Simon Dog]

Surprising me SS approved my application on the very first try.

Under rule 6.03 (https://www.ssa.gov/disability/professionals/bluebook/6.00-Genitourinary-Adult.htm) dialysis qualifies one for automatic SSDI approval.

[MooseMom]

See, now, I didn't have any noticeable symptoms.  I never needed to be treated for anemia, and overall, I felt just fine.  Yes, I ended up having to be treated for high phos and potassium, not because I felt unwell but, rather, because that's what the numbers dictated.

There is a certain sort of horror that goes with feeling well (at least, I thought so) yet seeing those numbers getting worse over time.

So yes, each pre-dialysis patient requires different treatments for different symptoms that may or may not be apparent.

[Jean]

Excellent and well written post tigtink. Thanks for taking the time to write it and to share it with us.