Pre treatment Gfr 10

[Nikki100]

Hi

Am very new to this chat room, sorry if iv picked the wrong one to chat in.

Am 36 have 10 gfr a failed fistula, awaiting arm graft but cause of covid my renal doctor has no idea how long i will wait for one. There is the option for kneck line, am not to sure of getting this.

In general i have good day and really bad days, i dont eat much now have been put on little shakes, but i never losse weigh which i don’t understand.

Sorry this is long winded.

My question being, when did most people start treatment? When do you know if you need it? As i do feel ill but i just dont want to start treatment, the thought is terrifying to me.

[Darlenia]

Hi Nikki. I'm so sorry to hear about your health situation. My husband, now on dialysis, also had some good days early on but the bad days took over as his numbers showed progressive kidney failure. He was exhausted, yet had restless nights. He would often fall asleep during family visits, completely unaware that he had done so. He began to have digestive and urination issues, spending lots of time in the bathroom. His body retained fluid. And his blood pressure soared to 240/120, I worried constantly that he would die from a stroke. Then, while visiting a transplant center, he was hospitalized on an emergency basis and started on hemodialysis (HD) - the only option left to lower his blood pressure and prevent a catastrophic health event. If my memory serves me right, I believe his egfr was around 8 or so at that time. The hospitalization happened during a Covid lock down so I couldn't visit him at all. There he was, hospitalized in his street clothes-no robe, no battery charger, etc. When he was released, I was surprised at how well he looked! He was completely alert, walked to our car with a steady stride, and more. Within a few weeks, he was walking around the block a few times and wasn't battling constant fatigue. What I'd like to say is that dialysis is a lifesaver - it clears the body of toxins and more. That is why it exists. My husband was in denial and fought dialysis ferociously. Now, his only regret is that he put it off too long. With a proactive approach, he would have gone directly to peritoneal dialysis (PD) and would have avoided the chest catheter, the hospital stay, and more. By being more progressive, he also could have gotten on the kidney transplant list a lot sooner. Thankfully, he is now on it. (One can start the process when egfr is around 20 or so. Some get a kidney so quickly that dialysis is never needed.) My husband has been on dialysis now for ten months. He's still working part time at age 71, we're busy moving to a new home, and life is good. So listen to your body, listen to your team, and know that when the time is right - dialysis will save your life. And chances are that your quality of life will improve. Sending hugs and optimism your way.

[RhenDutchess123 in reply to Darlenia]

You are so right...I kept putting off dialysis until I got down to 12 gfr ...had my peritoneal cathater in and began peritoneal dialysis...I felt so much better after just a week and continue to feel better...I have been on PD for 3 weeks now and am realizing how sick I actually was...I do dialysis for 8 hrs while I sleep and feel great when I wake up...Dialysis doesnt just save your life...it gives it back to you !!

[Darlenia in reply to RhenDutchess123]

That is so true. My husband is much healthier now. PD is working well for us too. We actually travel for a few days at a time, taking the machine and solutions with us. We also took 3-day weekends when he was on HD. I just love having my hubby back. He looks so good. There isn't any doubt he would have died by now without dialysis. So very thankful.

[RhenDutchess123 in reply to Darlenia]

We are getting ready to take a 3 day trip out of town ( 300 miles by car)...it will be my first...but think we will do well...my Husband is so helpful and excited to see me get my shine back...Your Spouse does well because of your love and support...you are our Dialysis Patients Heroes....

[Darlenia in reply to RhenDutchess123]

Thank you! The change of environment will be good for both of you. If you're staying at hotels, a small platform cart (with a fold up/down handle) will help your hubby transport the machine very easily. A plastic bin holding your evening supplies can go on the cart too. These are just suggestions. Someday we hope to transition to the Amia cycler which is lighter and smaller. Have fun on your trip!

[RhenDutchess123 in reply to Darlenia]

Thank you for the tips !!...I have the Amia Cycler and yes...it is very light with built In handles

[cs65 NKF Ambassador]

Hi Nikki, Your dialysis treatment start depends a lot on how your bloodwork is. I started at 5 gfr, but I didn't have all the symptoms of renal failure. My nephrologist finally said I should start dialysis after postponing it a couple of months. I was feeling really tired, now I can't remember all the other symptoms. I started the next day instead of worrying about it over the weekend. A lot of my fears were alleviated by the wonderful dialysis team. The charge nurse stayed with me all afternoon and explained everything to me about all the paperwork. And the technician calmed me down and explained that they would start with the smallest gauge needles and taught me to take a deep breath and let it out as the needle went in. Later I talked them into letting me use the numbing cream an hour before my treatment. I found out they just clean your blood the first few treatments, then later start taking excess fluid off. That makes it gentler on your body to get used to the treatments. The reason you don't seem to lose weight is that you are retaining fluid due to your kidneys not working very much. Your renal doctor and nurses are the best ones to turn to for talking about all your questions along with the dialysis techs. They can explain all your options for both dialysis and getting on the transplant list. I was fortunate to get a living donor transplant after spending 4 years on dialysis and it is a real chance for a more normal life! Take care!

[Hidden]

Hi Nikki, sorry to hear about your dialysis issue. I started on PD dialysis when I reached GFR at 10. I was feeling great but I didn't want to wait until I felt sick, just incase I ran into problems with getting the pd line in. I started in 2016. I could not do chemo, my veins are to small. I'm glad I did PD , just hook up at night in my own bed and let the machine work for 9 hours while I slept. In the morning disconnect and ready for the day. I was lucky to not have to carry fluid in my belly during the day. Part of the reason was I still had enough kidney function at 10 to be able to do that. I just got a deceased donor kidney in June of 2019. Just wondering, is there a reason you didn't choose PD dialysis? It gives you so much more freedom. I wish you luck with your dialysis and I hope you have put your name on transplant wait list and are looking for a living donor also.

[Juliepkd]

Hello NikkiI am sorry to hear you feel terrified. Its completely understandable. I hope the people on here can help to reassure you.

I couldnt agree more with Darlenia who replied to you. Her husband's recovery mirrors my experience. Dialysis for me has been life changing in a very positive way. I had become so unwell, so very gradually, I dont think I realised how poorly I was. Looking back now, I was barely functioning. It was a revelation how much better I felt after just a few sessions. I now have far more energy, appetite, sleep, no incessent itching and a better quality of life all round.

I knew I would need Haemodialysis as peritoneal dialysis not an option due to the massive size of my kidneys and therefore no space. I had my fistula created 6 months before I started HD and was around Gfr8 when I first went to the unit. The specialist nurses were so kind and are highly trained so although I was nervous, I felt reassured and safe.

My sister (our kidney disease is genetic) had 3 attempts to have her fistula created, third time lucky and now has a Bracial fistula (high up her arm, sort of on the underside) and she dialyses 3 time a week the same as me, and she too feels so much better. Another patient at my unit has a neck line and she looks fantastic.

There is no doubt, dialysis isn't always easy, establishing a good fistula can be difficult and it take a period of adjustment both physically and mentally but the benefits for both me and my sister are immeasurable. We have our lives back, I wish you all the very best and hopefully you will start to feel better soon.

Best wishes

Julie.