Dialysis

[Ziggydoodah]

I am getting my fistula fitted next week for dialysis. I have finally accepted that this is the next step. My gfr is at 9% but I feel the best, I felt in 7 years, since diagnosed 😳😳. Just wondering how people felt physically after starting dialysis? Do you put on weight, have more energy etc. I have googled a few sites but one thing I have learnt since diagnoses...is ask the people who have or are experiencing the same issues. Textbooks sometimes don't reflect the true reality!! Hope everyone is having a good day x

[Ziggydoodah]

I have just found some old post from 2 years ago. So I will read them. Should have done a search first 🙄🙄🙄

[GKGK101]

Best of luck with the fistula procedure, hope all goes well with it and when you start dialysis. I can't help with your query as I have yet to start, I've been told the end of the year, but Im worried about the fistula, is it required for all types of dialysis? The home option/dialysis center? I have read also about a stomach entry point.

[Ziggydoodah in reply to GKGK101]

Yes I believe you need a fistula for all types of dialysis. There are however different entry points for different dialysis methods. I have opted for hospital based dialysis. The fistula usually goes in the arm. For home dialysis, i believe the entry point is the stomach area. I had to have my gallbladder removed a few years ago after a bad pancreatitis attack. My consultant had concerns regarding the stomach portal. I have to admit, I'm not too bothered about the fistula being fitted. After being told I could get admitted as an emergency and thst they then do it in the neck or chest 😳. I was told I cant drive or lift anything heavy for 2 weeks. Something which my care team omitted to tell me. So it can cause a lot of inconvenience if you have to work. Thanks for replying. Wishing you all the best.

[KidneyCoach NKF Ambassador in reply to GKGK101]

Fistulas are the best accesses for hemodialysis. Grafts are also options. Grafts are synthetic tube inserted in replace of native vessels (Fistulas). In emergency dialysis catheters can be placed in the chest or neck. These catheters go right into the heart and are more prone to infection and generally not permanent.

Peritoneal dialysis uses the peritonium in the abdomen as a way to clean out the toxins and extra fluid. This way involves NO blood, requires no fistulas.

Hemodialysis and Peritoneal dialysis can both be done at home.

Check out kidneyschool.org or this book

Book with colors

[horsie63 in reply to KidneyCoach]

I got the book on my Kindle. It's great and very informative. I'm only at 22% but doing a lot of research beforehand. I'd like a transplant as my first option, then PD if that is required. I like my job and would like to continue as long as possible. I don't think I'd like to try the home hemo and going to a center 3 times a week would certainly affect my job/life.

[Hello67]

You are in my prayers and I know others on this site will be praying for you also. Please let us know how you are doing. We will keep you in our prayers. God bless you. 🙏🏻🙏🏻🙏🏻

[Ziggydoodah in reply to Hello67]

Thank you for your kind reply Hello67. Its lovely having such support from people like yourself.

[KidneyCoach NKF Ambassador]

Hi, generally after your fistula is created and you start dialysis you may feel better. It will take a few months for the fistula to mature and be ready for use. Some feel worse, and it may take a couple of months to find the right meds, dialysis prescription and get into the routine. Most people don't gain weight excepting peritoneal dialysis (PD) patients may. Check out kidneyschool.org and this book

Book with colors

[Ziggydoodah in reply to KidneyCoach]

Thank you for your reply. There is always someone on here who has the answers. It is much appreciated.

[RhenDutchess123]

Hope all goes well...I started PD last year and feel so much better...It does take awhile to feel more energetic, so dont get impatient and be kind to yourself...always

One Day at a Time...

[Ziggydoodah in reply to RhenDutchess123]

One day at a time...never a truer .statement!! Thank you for your reply. It is much appreciated.

[RoxanneKidney]

Please keep us posted on your situation. Prayers to you. I guess after acceptance, things pretty much will fall into place again. Unfortunately for me, I am not so good at the acceptance stuff. Thanks for sharing your story, sure does help me.

[Ziggydoodah in reply to RoxanneKidney]

I am not so good at the acceptance thing...Roxanne, that could have been me, even 2 weeks ago. I suppose if I really admit it, I am still feeling that way. I am frustrated and I suppose angry with myself that I am close to dialysis. However I have realised I don't want to waste the energy fighting something that I know is inevitable. Wishing you all the best on your journey my friend.

[garysum]

Thanks for posting. I am close to same. Gfr10. Fistula in left forearm required 2surgeries but now done. Dialysis will not start until I feel bad which I don’t. Still feel good and energy only slightly reduced. Still WFH and golfing weekly.

[Ziggydoodah in reply to garysum]

Very similar to myself Garysum. I am quite shocked at how well I feel. I always presumed i would be very ill before dialysis. No aches or pains and my skin is glowing. If it wasn't for the for the doctors thing me how ill I am, you wouldn't think I was ill. Yet when I was on high doses of steroids I felt toxic, looked ill and every joint was agony. Wishing you all the best. Keep us updated on your journey

[garysum]

Oh and transplant waitlist for 2.3 years now of typical 5 year wait for my blood type.

[Jamok]

I’m at gfr 11. Trying so hard to stay off dialysis and go direct to transplant but the reality is sinking in that I might have to do dialysis since at this time I have no viable kidney donor. I have almost 3 years in at the transplant center but need to do a treadmill stress test before I am active. Originally when I entered the transplant program I was told 3 to 7 years but not sure how that has changed due to covid. You’re lucky you’re not having symptoms. I have severe anemia and also high PTH parathyroid hormone so I believe most of my symptoms are from those two conditions. So far my nephrologist Isn’t talking about ports or fistulas but I may bring it up next time. Hope All goes well for you. Take care.

[Ziggydoodah in reply to Jamok]

I'm surprised your doctor hasn't started the process for fitting your fistula. Im based in Scotland and they were discussing fitting it, when I was at gfr 15. My results show that I'm close to being anaemic. I have been taking an over the counter iron supplement but told by doctors I am wasting my money. I feel it is doing something, even if it isn't 😎😎. Im sorry you aren't feeling great. Its such a roller coaster of a journey. I totally get what you are saying about going on dialysis. I was seeing it as a failure on my part. A major inconvenience I can do without. However now I'm trying to get into the mindset, that it is inevitable and hopefully improve the quality of my life. Wishing you all the best. X

[Jamok]

My anemia has nothing to do with iron deficiency-iron levels are normal.It is due to a shortage of circulating red blood cells aka low hemoglobin because my failing kidneys can no longer make enough erythropoietin.

I’m starting injections of a man made version this week and hoping this will help.

[Ziggydoodah in reply to Jamok]

I really hope the injections help Jamok.

[Jamok in reply to Ziggydoodah]

Thank you!

[KidneyCoach NKF Ambassador in reply to Jamok]

Jamon, to maintain good hemoglobin iron is also needed at times. The red blood cells need enough iron, and iron needs enough red blood cells to keep a good hemoglobin. They work together. Most on dialysis need both I.V. iron and injections of erythropoeitin to maintain a good hemoglobin. Best wishes.

[Jamok in reply to KidneyCoach]

Yes that’s true but my particular anemia has nothing to do with iron deficiency as my iron stores are in good shape! At least I have some thing going for me lol

[KidneyCoach NKF Ambassador in reply to Jamok]

As I said needed at times. If your anemia is ESRD related you will likely need iron at some point. But everyone is different.

[SadMad]

Everyone is different, I personally feel better on non-dialysis days and yuck on dialysis days. Have been on dialsis 21 months and am on the transplant list with a kidney this summer. If I don't get a transplant I want to switch to PT. I rather be at home. I am hooked to a BiPap machine every night so might as well be hooked peritoneally every night. But I don't think every one's reactions to dialysis are the same. There is a man at the center I go to that has been getting dialysis for 40 years and is also a diabetic. Take care and bless you.

[Ziggydoodah in reply to SadMad]

Sadmad thank for replying. Yeah im starting to realise everyone has a different experience on their "kidney journey" ...40 years 😳😳😳 wow, im not quite sure what to say regarding that!! I hope you find home dialysis, more to your liking. Im just feeling very apprehensive at how much all this is going to take over my life. I know it is saving my life but the inconvenience is what is troubling me the most. Wishing you all the best and praying you get your transplant soon .

[SadMad in reply to Ziggydoodah]

Thank you. I pray I get a kidney before I have to switch to home PT. I have other problems that make my experience different. God Bless You. One Day At A Time is my saying but sometimes forget that and dwell on the futuro. 🙏🙏🙏

[Ziggydoodah in reply to SadMad]

Just reading your reply there, reminded me of a little poem I read

One Day At A Time

This is enough. Do not look back and grieve over the past, for it has gone.

Do not be troubled by the future, for it has not come.

Live in the present and make it so beautiful, it will be worth remembering...

Take care.

[RhenDutchess123]

80% of the Dialysis Horror Stories I heard for 20 years while my kidneys were declining never happened...I do Home PD at night...it was easy to learn , although storing supplies was harder to learn...lol

But I felt so much better...none of it mattered anymore...I hook up at night and sleep through my treatment...I sleep well...my bones don't hurt...my eye bags are dimished...my brain fogs are few and far between...I don't itch...I actually feel like going places and doing things again...once a month I am given Iron Injections...and off I go on to my next monthly adventure...

Life is good...I don't call it Dialysis anymore...Its now called my Beauty and Recharge Treatment....

..

[Ziggydoodah in reply to RhenDutchess123]

Thank you for your reply!! I know dialysis is keeping us alive but its hard not to see it as a hinderence and inconvenience. You actually make it sound appealing....i know people who don't have kidney problems that would queue for a go on your beauty recharge machine 🤩🤩🤩...I love your attitude and wish you all the best xx