PD Drain Pain and Slow Drain Fixed

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On a visit to my specialist 29/07/2017 he increased my Calcitriol from 2 a day to 3 a day, after about 6 weeks on the new dosage I started to get abdominal pain on my left side about where appendix would be if it was on left side, my draining was slowing down and I developed constipation which I controlled with laxatives, I was due to see specialist at the end of September (around 2 weeks from the start of my symptoms) I had my usual monthly blood tests 4 days before my appointment, 2 days after blood tests my Home Dialysis rang to say my Calcium levels were high, as I was seeing my specialist in 2 days we decided to wait for his opinion, I suggested it was because of the increase in Calcitriol, in the last week before my appointment the drain pain was unbearable and it was taking around 45 minutes to drain instead of the usual 15 - 20 minutes and on a couple of occasions I couldn't fully empty because of the pain and slow drain, on seeing my specialist he agreed that the Calcitriol had increased my calcium and reduced it to one pill a day for 3 days and then 2 a day from then on, he said the high Calcium could cause the constipation which in turn could slow my drain, the pain could have been caused by a shift in the catheter so he gave me a referral for Xray if things didn't improve in a couple of days, I didn't think that constipation was the cause of my drain problems as I was popping enough laxatives to move things along, after around 3 days of reduced Calcitriol the pain started to ease and draining was getting faster, after 7 days everything was back to normal with drain time around 15 minutes and the fluid out was back to average, for 2 days I got double my average of extra fluid and my weight dropped about 1.2kg so I reckon I was carrying around 1kg of extra fluid. I have no doubts that the Calcium spike caused all of my drain problems, at the time it was happening I didn't even think about the Calcitriol was causing my problems so if you are having similar symptoms then maybe discuss Calcium levels with your doctor. I'm not saying that it is the answer for your problems so don't stop taking medication without talking it over with your Specialist or GP, it for sure was the cause of my problem, if you do discuss this with your doctor please feel free to reference to my experience.

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  • Posted

    Nocky,

    I appreciate you sharing this with us. I'm still waiting out the dialysis issue. My nephrologist also wants me to go through testing to see if I'm eligible for a transplant. So everything is still up on the air some. 

    I can't wait to reach the point where I can make final decisions about my treatment and then start dealing with it. I'm sure I'll be on PD dialysis whether I qualify for a transplant or not--as I wait for a deceased donor kidney or if I do t qualify for s transplant. So I really appreciate hearing specific details others experiences with it.

    Marj

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  • Posted

    No worries Marj, I have been on Transplant List for about a week now, our list here is quite short and we have been pushing organ donor awareness via media and it has been quite successful, I am blood type "A" and also have negative antibodies to other blood types so a lot of things in my favor to have a transplant by Christmas. 

    PD worked well for and I have been doing manual exchanges for 6 months now, I was going to start with the Cycler this month but have put training off now I am on list, I do 4 changes a day with the first around 5.30am and the last around 10.00pm, they can be a bit of chore when you want to go to bed early or sleep in as they still have to be done around those times, when things block up the drain can take along time and you can get terrible pain but this is rare and you get to know the signs after a while and do what is needed before iy gets bad.

    I know people doing Hemo and i think I much prefer PD as it doesn't interfere with my routine much and you can plan around it, good luck with the tests

    Cheers

    Paul

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    • Posted

      Thanks, Paul.

      At this point I'm still not on dialysis. My creatinine ranges from 3.4-3.6. My blood pressure is typically 124/72 without meds. I'm also not retaining much fluid. So for a person in Stage V with an eGFR of approximately 11, I'm actually doing quite well. My nephrologist just modified  my anemia treatment plan. He added EPO injections twice a month as needed to increase my hemoglobin to approximately 11.5. I had the first injection this past Wednesday. That has certainly helped a lot.

      So, with the changes in my BP management made by the specialist from the university (which has totally resolved my problems with very low BP) and the change in my anemia treatment, I'm feeling pretty good.

      I'm 64 years old and so thought I was likely too old for a transplant. Thus I'm pleased to think there may be a possibility that I'll qualify. However, I'm just taking this one day at a time and hoping for good news.

      Regardless of the transplant eligibility testing results, I'm sure I'll be on PD dialysis within the year. I suspect I'll feel better once that happens. 

      I am definitely finally at peace with all of this and ready to purse whatever treatment option I need when the time comes🐶 This discussion group has really helped me!!

      Marj

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  • Posted

    Marj here you start Dialysis at eGFR 15 so you are lucky not to be on it yet but I guess it wont be long, also here the transplant age use to be 70 but I think they have raised that a couple of years mainly due to the amount of available donors, as mentioned my eGFR was 6 when I discovered my problems and 8 months later I still pass over 1lt of urine a day and I haven't had an EPO injection for 4 months, my blood pressure was 150-170/90-100  and is now stable around 130/85 without medication, the only thing I can't control is Phosphorous and Potassium, they are always a little high no matter what diet I have.

    Yes EPO is good, I noticed a change after 24 hours and heaps better of a week, I only had 3 injections and haven't needed since.

    I have a blog that goes from the day I was diagnosed and will keep going until I get a transplant, not sure if you have read it, if not I cam PM you a link as I can't post links here, take care and once again good luck

    Cheers

    Paul  

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    • Posted

      Paul,

      Yes, I'd like to get the link for your blog.

      Here, in the US, I'm in a region that has shorter wait times for deceased donor kidneys. It's supposed to be between 12 to 18 months before you receive your kidney in a this region as there is a higher donation rate. Of course, quite a few people receive living donor kidneys. I'm not planning to pursue that route.

      My nephrologist has said that more often his female patients struggle with anemia than his male patients. I've been dealing with anemia since stage IIIa; fairly early into all of this. I still had about 50% function at that point.

      Fortunately I have no difficulty with potassium and phosphorus levels. They're consistently in the normal range. My sodium has run low. But since th university nephrologist, whom I visited in mid August, pulled me off a blood pressure medicine my sodium has elevated into the normal range and I do seem to be staying hydrated more easily. That has resulted in my improved blood pressure readings. I certainly feel better with my BP in this range than when it ran so low.

      The blood pressure and the anemia have been what hav caused me to feel particularly poorly. So my regular nephrologist, not the University person I saw in August, thinks that getting my anemia under better treatment will make a big difference as well. If so, I may not need to think PD dialysis until I've got around 8% renal function (or eGFR). That would certainly be good!

      Marj

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