Hi everyone, it's been a long time since I was on here, mainly because although my kidneys have been declining, the rest of my bloodwork has been fairly stable. It's funny though this time, I went for bloods. I felt there would be something wrong. I'm incredibly itchy, have leg cramps, frothy urine, not much of an appetite, and feel shattered all the time. I was right, I had to have an iv iron infusion as I'm anaemic, but my gfr has dropped to 9, so it's apparently time for dialysis. Whilst I had the infusion, a lovely nurse ran through my options. I think I'm going to go to the hospital 3 times a week after work ( I'm a teaching assistant so finish at 3.30) so I will do the 5- 9pm session then go home to bed. Am I being optimistic about working full time and doing dialysis as well?? I have no problem with having it, but what I'm unable to get my head round is having a fistula in my arm. It's silly, I inject myself with epo injection and have regular bloods, so it's not needles, but the thought of it makes me feel physically sick. Any tips to deal with this or how to get over it.
Time for diaylis : Hi everyone, it's been a... - Kidney Disease
Time for diaylis
You are not afraid of needles, so what is it about the fistula that scares you. The surgery is pretty easy, you heal fast from this and once healed, there is no on going pain from the fistula. It bops up and down with your heart rate, reminding you that you are alive. It takes a while to get surgery and heal, so get 'er done. Then let it heal up and strengthen. If you start too soon, like I did, you will have issues. I should have waited 6 months, not four.
Don't get me wrong, I hate dialysis. But I look at my arm and think, without this, I would be dead.
When my mam first got her fistula she was weired out by it to that she could feel it buzzing all the time but now she's use to it it's like anything at first it's strange but as the time goes by you get use to it. The surgery to actually get it went really well to and she healed really quick takes a while for it to mature in the arm my mam had hers through the chest tube while her arm fistula was maturing.
Was Clinic Dialysis your recommended option or are you candidate for Peretoneal Dialysis at home while you sleep ?
Hi thanks for your comments, I don't know why I'm so scared. I could have peretionial dialysis yes. Again the thought of a hole and tube in my belly is also daunting. Which would be best? Can I drive and go back to work straight away once I've had the catheter fitted. ??Lots of questions but my head is spinning and the tears keep falling even though I know I've got to choose one to keep me alive before I manage to get a transplant.
My nephrologist had me get my fistula a year before I needed it, but didn't tell me to exercise it with a soft rubber ball every day once it healed. So I needed a balloon angioplasty to expand it when I did need it. That's also a minor surgery which they sedate you for. The dialysis clinic staff advised me to get a ride for the first month because you don't know how your body will react, you may be very tired or lightheaded. They usually start you slowly by just cleaning your blood the first few sessions, then go on to removing excess fluid to get you down to your dry weight. Even dry weight takes a while to determine and it may change over time. All this can affect your blood pressure. You are safer not driving the first month. Other things to consider are home dialysis like PD or home hemodialysis, which you can do after work or at night. These types of treatments are considered gentler on your body since you can do them every day for fewer hours than in a clinic . I don't have personal experience with PD, but you can get guidance from your doctor and others here on this forum. I did work part time while I went to in center hemodialysis, but my job wasn't as physical as yours. It sounds like you'll probably have to start with a chest catheter at first and go in center because a fistula takes time to heal and then takes at least 6 months to mature and be ready for the needles. A PD catheter takes a shorter time to be able to be used, but comes with a greater risk of infection. There's a lot to consider, so think and learn as .much as you can before making a choice. Good luck to you!
Thank you for your advice
There is another option besides the fistula. I chose the P.D. dialysis. I was at 13 gfr and accepted the fact that dialysis was in my immediate future. I've had 3 sessions so far as training to get over the fear and uncertainty. The best part is I will do this at home not in a center.My last labs had me at 11gfr so starting early was probably a good move. Ask your doc about P.D.
This is good website goes over the different types of dialysis and also has a questionnaire which tells you the right kind for you: mykidneylifeplan.org/#eyy Also, I highly recommend checking into getting yourself on the transplant waiting list. That can be done when eGFR is 20 or below. Yours is well below that. Research generally shows that a transplant most closely resembles a normal lifestyle and extends life span. Some people manage to get a "pre-emptive" kidney transplant and skip over dialysis completely. That may not happen with you considering your current situation. However, getting an orientation at the transplant center out of the way now would be valuable. Our center told my husband which form of dialysis was best for him to minimize calcification, the number and types of exams and tests the center needed for their panel review, etc. With your dialysis timeframe, you may be able get some or all of that out of the way. Sending encouragement your way!
good luck to you in deciding what best for you . I did pd for a year and half until this June I ended up in hospital with fungal in they had to take my pd catheter out . I had to get an emergency heart catheter for hemodialysis I was so afraid of hemodialysis but I’m doing better on it then I did on pd I had drain pain every night on pd so I tell myself when I get a fistula if I could bare that drain pain everyone doesn’t get it on pd but it bought me to my knee I should be able to handle needles in my arm. I have talk to a few at dialysis they told me they put numbing cream on there fistula about 45 minutes before dialysis and this help them with the pain . I thi c you should be able to work fine if you do hemo at clinic or hospital you will have four days off not doing dialysis
Hi there, I am roughly at the same place.My egfr is now 11 and I have a fistula over a year now and my consultant said he would start dialysis anytime I wanted.
I strongly identify with your symptoms the exhaustion and zero energy to do anything.
In short I feel like death warmed up.
My best shot is a transplant but I've been on the list for over two years and I have a cousin who was willing to help with the kidney sharing scheme, but even that didn't help as we got passed over in six consecutive matches.
So good luck with your journey and if its any help know there are others in the same boat.
Thanks everyone for all your comments, advice and support. It is a daunting journey that I knew was coming to this at some point, I suppose because I'd been going to clinic only every 3 months and there was only a slight decline each time it was a shock to hear this time.
Mine was kind of the same. I knew it was coming and the decline was slow, plus I didn't feel or think I felt bad with a GFR 18. I waited almost a yr to get evaluated to go on the transplant list from when they advised me to do so. GFR 15, Creatine 4.11- Dec 2021, 6 months after my appt to get on the transplant list, all of a sudden my routine Labs came back and my GFR was 3, creatine at 11+ as well as all my other numbers were way out of wack. Ended up in the hospital, they put in a temporary port and started me on dialysis. I was (still am) very blessed to have a huge support group of family and friend and more. My 3 kids as well as multiple others stepped up to be tested. I was told it was a 5 yr wait for a deceased donor kidney, unless I could get a live donor. I was very fortunate that one of my kids was almost 100% match for me and I had a transplant in Dec 2022, just 1 year after my consult to get on the list and only 5 months on dialysis. Both of us are doing very well now. I never had to get a fistula as the healing time to use it was too long and didn't pay to have put in with transplant so soon. The port didn't bother me much other than not being able to really shower (baths only) so It didn't get wet and not being able to wear certain tops without it showing, but that's minor. Definitely get a consultant and get yourself on the transplant list and start talking about it and searching for possible donors. Don't wait as you never know when things will change quickly. Keep positive, do research, exercise and eat healthy so you are in the best health possible when the time does come. Good luck to you!🙏
I had my fistula with a local anesthetist and it was fine, there are other options. You might have time for it to mature though I didn't start dialysis until I was at 5% I do feel better now , best wishes x
