Expectations

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I have so much to be thankful for at this moment, I should be counting my blessings. I have not gotten close to needing dialysis. Yet I am still feeling discouraged. My creatinine has remained stable at about 2.8 gfr 17 for the last 7 months, after dipping to 3.86 gfr 12 in March (in what could have been a lab error or dehydration). I worked with a personal trainer for four months to learn a more vigorous and targeted water aerobics routine. I go to the pool for an hour six days a week and do a combination of finning and leg exercises and a half of hour of cardio exercises. In addition, I go to senior water aerobics classes and have fun with friends. I am much stronger now and clearly it has helped me remain stable. My potassium, hemoglobin, and co2 levels have remained normal. I have 4 years and almost 8 months accrued at University of Wisconsin, and almost 4 and a half years accrued at University of Michigan. It is looking likely that a transplant will come through in the next year or two, with a pretty good chance my kidneys will hold out until then. (I put myself on hold at Toledo because I don’t want my transplant there.) I’ve built up my support system with friends at the Y and they have become a big part of my social life. We go out to eat and help each other when we can.

So, I should not be discouraged. I am in so much better shape than I could have hoped for 5 years ago when I had my fistula surgery and the future seemed so bleak. My nephrologist even asked me if I would accept a transplant at this point, which is a logical question given my labs. He said I might be able to go on like this for years. I didn’t say it out loud, but I thought: ”Oh no, please!” What I am doing is clearly working, but it feels so much harder to maintain this level of functioning now than it did a couple of years ago. The labs just do not tell the whole story.

If I miss more than a day at the pool I start feeling bad. My joints ache and I lose all motivation to get anything done. I gain weight and worry about being put on hold at the transplant center. And I go into an emotional funk if I don’t interact with people on a regular basis. I tried cutting back to 3 or 4 days a week at the pool and it did not work. I feel great in the pool, but working out this much uses up all my energy and it is hard to keep the house clean and keep up the demands of daily life. I feel guilty about complaining, but this is hard. The wait is hard, the occasional drop in function is unnerving, the uncertainty is maddening. I’d love to just settle into this routine, live my life, and be content to know that the transplant will come in time, but I can’t seem to get to that point emotionally. I just get tired, physically and emotionally.

Am I just expecting too much? My labs are as good as they were but I don’t feel as well as I did. I forget that my body has struggled for at least 8 years with severely decreased kidney function. If I was on dialysis I most likely would be this tired or more, and going to the pool every day is a lot more fun and healthier for my body. I think I need to accept that this is the way things need to be for now and be grateful for the good things. Sometimes that is easier than others. I sure hope a successful transplant will leave me with a little more energy and life won’t be quite as hard. I guess that is what we all hope for during the wait.

[MooseMom]

The moment we say, "I should feel …", we put an unnecessary burden upon ourselves.  This is where the "expectations" can cause havoc.

During my pre-dialysis years, I found that being in the pool and exercising was probably the most effective coping mechanism for me.  How interesting it is that you seem to feel the same way about the pool!  Exercising in the pool is a safe way to work out, so I am very glad that you have found this to be true for you, too.

You've said that you feel great in the pool but that working out this much is draining.  Perhaps you could vary your workout a bit?  Maybe strength exercises one day and cardio the next?  Regular workouts help us feel that we have some control over our lives and over our kidney function, and this feeling of having "control" is emotionally crucial.

I worked with a personal trainer several years ago; she helped me to create a strength training regime that I could do at home with minimal equipment.  I need to begin again; the summer is relatively short here where I live.  I do not like indoor pools, so I get a season pass to our Park District's outdoor pool each summer, and today is the last day the pool is open for the year.  I swim in the summer and do my strength training the rest of the year, so tomorrow it will be back to the weights and bands.  Anyway, my trainer emphasized the benefit of mixing up my workout so that I wouldn't get bored and just quit!  Perhaps mixing things up a bit could work for you, too?

So, instead of cutting back to 3 or 4 days, could you maybe do your workout on those 3 or 4 days and use the other 2 days to just swim?  Sometimes if I'm feeling tired but still want to be in the pool, I'll just walk from one end of the pool to the other, propelling myself through the water with my arms.  There are sometimes other older ladies in the pool doing the same thing, so we might have a chat while we walk through the water.  It doesn't sound much like "exercising", but it breaks the routine and is more effective exercise than one might think.

Oh, also, I have one of those kickboards, and I'll use that to "swim" back and fourth.  There are all sorts of things you can do to vary your routine.

Are you sleeping well?  Poor sleep over time will enervate even the healthiest of people.

You are right.  The wait is hard, the occasional fluctuating numbers is terrifying, and the uncertainty is soul-destroying.  But you are doing all of the right things.  The idea is to keep your body as strong and as healthy as possible so that when a good kidney comes to you, your body will more easily handle the rigors of surgery.  A healthy kidney for a healthy body!  We all know that a pre-emptive transplant is the ideal, and it looks like the odds are good that this may be what is in store for you!

It is very hard work to feel blessed and grateful every damn day, especially when having kidney disease that is so severe that the words "kidney transplant" are being knocked about.  Sure, you DO have things to be grateful for, but the truth is that there are also things in your life that make you rage with the unfairness of it all, the unnecessary worry and strife. 

It is exhausting trying to find the balance between feeling grateful and feeling stressed.  Both are valid feelings.

So, no, I don't think you are "expecting" too much.  I think you are merely living in hope just like the thousands of other people who are in your same position, just like you've said in the very last two sentences of your post.
 

[Cupcake]

Wow! I love to swim, too! Maybe we should start a group for renal bathing beauties! I risk it since I'm on PD, but I'm very careful to cover my exit site/catheter with a big sheet of tegaderm. I'm also picky about where I'll swim- no water aerobics in the crowded little therapy pool! And when the lap swimmers give me the stink eye for being slow or just water walking, I give it right back!

Part of your renal failure symptoms could be contributing to your lassitude- things get better with dialysis and especially transplant. I'd take the first good kidney they offer!

One day at a time, keep working on that new kidney!

[MooseMom]

"Renal Bathing Beauties".  I love the sound of that!   

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Thanks for the encouragement, MooseMom. And I love "renal bathing beauties" Cupcake! I can't do other forms of exercise because of arthritis in my knees and feet. But I so love being in the pool and I never seem to tire of it.

I guess with as long as this has gone on and as hard as I have worked to keep healthy, I should allow myself to feel whatever I feel. I think the biggest thing triggering me now is that it's time for my re-evaluation at MI next month. Last year at this time was SO hard. I had appointments at both Toledo and MI, plus two appointments with two cardiologists and a stress test and echo (because Toledo would not accept my cardiologist report from MI, even though I have NO cardiac issues.) I had to drive to Toledo twice and spend the night with a friend, and the surgeon at Toledo was a real jerk. So knowing it is that time of year again is making me crazy. Because I put myself on hold at Toledo, I will only have the one appointment in Ann Arbor, and both the other transplant centers are allowing me to skip the stress test and cardiology appointment this year. What a relief!

To answer your questions, I am sleeping VERY well because of all the exercise, so that is not an issue. Thanks to my trainer, I have many different options with the pool exercise, so I can experiment with less taxing routines part of the time.

I may be able to go on on for some time like this, but I will definitely accept the first good kidney than comes my way. I am so grateful I can come here and gripe about it all without being judged. I go through cycles where I feel optimistic and hopeful, then other times when it all just overwhelms and frustrates me. I saw my primary care doctor today and she really cheered me on.  There's a kidney out there for me so I will keep doing my best until my time comes. Then at least I will have new challenges instead these same old ones!

[MooseMom]

I am very glad to hear that you are sleeping well; that's another great benefit from working out in the pool.  I did not remember that you have arthritis.  Working out in the water is perfect for you!  It seems to help you in many ways.

So, you have your re-eval coming up?  LOL!  Talk about a major trigger!  Even though this year's workup won't be so fraught, it's hard to entirely forget the extra hassle you had to endure last year.  No wonder you are feeling down at the moment.

I found that some days I'd wake up and just feel it in my waters that it was not going to be a good day.  It happens.  When it does, it's ok.  Just remember that tomorrow you can hit the reset button.  And also remember that you are in excellent position to get that good kidney and to recuperate quickly!

Let us know how your evaluation goes next month, OK?