Shortness of Breathe with PKD ?

[Frankie24]

Hi All,

Was on a business trip out of state last week for work, PKD, stage 4, egfr 16 %, the days were 20 hours long and the trip lasted for a full week. Needless to say I am still exhausted not to my surprise. I began having bouts of shortness of breathe, mostly while walking and going up flights of stairs. My nephrologist blame's it on my arythmias with my heart, but my heart is stable right now with medication and all my tests are fine. I have to be retested for everything by my cardiologist to be on the safe side. Does anyone else experience shortness of breathe due to their kidney disease, it just seems strange to me that this would not be a factor.

[Hidden]

I sometimes have that problem when I bike too much in excessive heat or cold. I've since learned to not push myself too hard in extreme weather and to limit my bike riding to a set amount and pick up additional exercise indoors when needed.

How much extra activity did you do on your business trip? It sounds like you may have exhausted yourself. I hope you're taking a couple of days off to recoup your energy.

[Frankie24 in reply to Hidden]

Much more than my usual exercise, a lot of walking, going up and down many flights of stairs, endless meetings, the days were much to long.

I appreciate your response, and as I said, my body just gave out once I got home and I slept for a full day and a half.

I still find it frustrating though that I cannot do what my co-workers and those around me who are healthy can. Honestly I still resent this. I am trying so hard to stay away from the denial aspect of this cause that just gets me into trouble, but some days I cannot help it.

I am preparing for dialysis and wonder where that will leave me when trips come up. So much worry...I sure hope my living donor transplant happens sooner than later I guess. My work place is very physically active and pro-active toward everyone being physically fit. I am afraid to tell people that most days I don't feel so great anymore and I put on a front. Only my immediate supervisor knows my situation.

Anyway, thanks for the chance to vent and for listening. I always appreciate all your great feedback, advice, etc.

[aben]

I sometimes experience this if I overexert myself. For a while afterwards, until I've had a couple days or so to rest and recover, I'll get short of breath from things that normally would not be beyond my activity level. In my case, anemia is a big part of it. I'm anemic not because of low iron but because of my kidneys being too damaged to produce sufficient amounts of the hormone (erythropoietin) that signals the production of red blood cells. There's injections they can give that are a synthetic version of the hormone but I've elected not to start them yet and the anemia isn't severe enough yet where my nephrologist has any objections to my chioce to delay.

[rabbit01]

Yes I am at the same stage as you with 16% eGFR and I get very short of breath. I believe that it is due to the kidneys not removing water from the blood so you end up with too much of it which affects the ability to take on air. I also have anaemia due to my kidney problems which again reduces how much oxygen my blood carries. My doctor has said that I can start erythropoietin (epo) if it gets worse. BTW I take my hat off to you that you are still working at this level. I am too but am able to work 4 days from home and 1 in the office. All the best.

[raybacci]

I'm stage 4 and often have had shortness of breath-first diagnosed as asthma--but it is not astma it is water in the lungs- water pills help

[Frankie24]

Thank you for all your replies, I appreciate the input and will use the information when meeting with my nephrologist in a couple of weeks. I run into the problem of him asking if I have any questions and I always have my list but sometimes feel like he doesn't really hear what I am saying or he wants to make it another one of my doc's problems to deal with. As for getting rested, well, my body went into pretty much shut down for about a day and a half all I did was sleep, so now I am back in action. Thank you all again.

[Hidden in reply to Frankie24]

I know you are a veteran of these issues but if I can make a suggestion. Don't wait until the end of your time with the doctor for him to ask about your questions. Once he walks into the exam room explain your concerns and let that be the first thing he has to deal with. It's your agenda, not his. It's your time and appointment. Set the tone. Best of luck,

[Frankie24 in reply to Hidden]

I will be sure to address him before he addresses me at our next appointment. Thanks again.

[steve680]

It could be anemia you're experiencing. When was the last time you had a Complete Blood Cell Count? If your hemoglobin is below normal, that could explain it, but either way you should mention it to your cardiologist. If you also experience chest pain or chest tightness while exerting yourself, you should definitely mention it to your cardiologist ASAP.