Low Stage IV - dialysis questions

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Hello everyone??

I'm new to this forum but am hoping to get some information and support. So a little about my situation:

I was diagnosed with Stage IIIB CKD on Halloween, October 31, in 2011. My creatinine was 1.2 at that time. It remained stable until May of 2013 when it plummeted to 3.2. My nephrologist jumped into high gear at that point. My kidneys rebounded to 2.2 and stabled there until December of 2016 when they plummeted again, this time my creatinine dropped to 4.2 with an eGFR of 10. There has been some improvement. My creatinie iOS now at 3.4 with 14% percent function. I've been referred in to a nephrologist at the University of Kansas Medical Center which will occur on August 16, 2017. Im hopeful this appointment will at least provide some answers as to what is going on--my nephrologist has completed a biopsy and says I should have "much more function" than I've got. I also have no extra protein in my urine which he says is supposed to be another predictive measure.

I'm single and live alone. Frankly, it has been pretty challenging to cook for myself and so forth due to the extreme anemia. The anemia is now under effective treatment but has been pretty difficult. I've been able to continue working full time. (I'm a university professor.) I'm actually the last family member living in my immediate family. Do, I'm going to n Ed to navigate Stage V renal care alone.

My nephrologist has said that I'm an ideal candidate for PD dialysis. He says I would be able to continue working while on PD and should also continue exercising coding. He also says I should be able to live 15 years or more on APD. (I'm in my mid-60s right now.) he has also talked with me about the possibility of a transplant; but, I'm not at all sure that I want to pursue that option.

The questions I've got right now are

1. What have your experiences been with PD dialysis? Are they consistent with what my nephrologist has told me?

2. Whatbproblems, if any, did you encounter while on PD?

3. Did you have many infections while on Zpd?

3. What are your thoughts about transplants? Have any of you chosen not to pursue a transplant? What sorts of issues caused you to decide against the transplant?

Thanks so much for taking time to read my post and I hope to hear back from several of you.

Marj

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  • Posted

    Hi,

    I did PD for nearly two years I started in Dec 2014 and stopped when I had my transplant in 2016 I am 39.

    My experience of PD was a good one I was able to work full time and look after my two children with the help of my husband.

    PD gives you more freedom with life I did mine for 8 hours through the night, so it didn't interfere with my day.  I set my machine up each evening once everyone was sorted out and then just made sure that I was conected to it to leave enough time for any alarms which can cause delays and get up in time for clearing the machine away and going to work.

    I was lucky I didn't have any infections, as long as you do exactly as you are told in setting up it reduces the risk.  As long as you wash your hands like your life depends on it (it does) you should be fine.  I have to point out that some are prone to peritonitis but as long as this gets treat straight away you will be good.  My hospital were really good any sign of any possible issues I was called in just to make sure all was ok.  You should have 24 hour support anyway we do in the UK.

    I had a transplant due to my age, however the choice is entirely yours and you should be able to make that without feeling the need to justify yourself to anyone.  There is a gent on here who is 80 so a fare bit older than you and he has decided not to have dialysis or transplant which I feel is a very brave decision and he gets support either way.

    I had my PD catheter fitted on 5/11/14 and then it healed for 3 weeks then I had a couple of days training but that was due to me picking it up quick I could of had more if need be.  It took about 4 weeks for me to start feeling better but not 100% its not for that.  It will not improve your figures much either that is not the purpose so pplease don't be worried if this happens.  Your creatinine rises not plumets the higher the number the higher it is and the lower your GFR will be lower as this is what happens.  Your creatinine will increase more, dialysis is just to clear the toxins not improve figures.  It also takes some good out of the body as it cannot tell the difference between good and bad.  You may find you need iron and EPO to help your hb levels and possibly vit d as parathyroid can be effected.

    If you have any specific questions please ask but remember its personal experience and no substitute for medical advice.  I wish you the very best of luck 

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    • Posted

      hi helen

      I am from India(asia)

       

      My father 53 years age is having diabetes from past 17 years ,on 30 april suddenly he had an heart attack due to high BP as no blockage was found BP 240/120 .On the examination of Kidney he was diagonised with CKD stage 3 his cretanine was 2.0 and also high leakage of protine potassium was 4.7 and sodium was 136,Hameoglobin was 10.5 and elevated sugar level,Doctors advised for insulin and strictly odered to control BP.

      Again tests were done after 1.5 months 17july 2017

      His cretanine is 2.1

      BP is 80/135

      Hameoglobin is 8.1

      there is decrese in protine leakage

      we are very much worried what to do ? Mam can this disease be cured

      how much time is there for my father to prevent dylasis .

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    • Posted

      Helen, thanks so much for sharing a little of your story with me🐶 It gives me hope that this is, in fact, doable. I certainly agree that it is critical for me to both listen to and work with my medical team. And, yes, it is clear that we are each on a very individual journey with CKD. But positive stories from others is both encouraging and insightful. It gives me ideas regarding how I can manage all of this. That is very helpful.

      I've already got severe anemia, hemoglobin at 5.6 without medication. I'm also already taking vitamins, B12 and D. I am following a low potassium diet and take a potassium binder. So my nephrologist is providing a treatment plan that has me up and running quite well. Im very thankful for that.

      Again, thank you for your response.

      Marj

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    • Posted

      Yes, I don't know why this web site didn't post either of my first two attempts for so long and I don't see a way to delete them. So, I'm sorry to have created this redundancy. I do appreciate your earlier response.

      Marj

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