Hi everyone. I am 78 YO with CKD diagnosed in 2009 at GRF of 55. Now my GFR is 10. My Nephro has asked me to get the PD catheter installed soon. Right now I am feeling OK. No Edima, no nausea, no head ache, no diarrhea, walk one mile everyday, little anemic, not diabetic, Plant based diet. I take Amlodopine 5 mg once a day for my blood pressure. (160/80). He wants to increase Amlodophine to 10 mg to lower the BP.My question is once the catheter is installed and healed do I have to go on dialysis immediately or I can wait for another year or so till I start feeling bad. I would highly appreciate your help/ know how in this matter. God bless you all
SAM
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I can tell you that I didn’t even start seeing a nephrologist til my Gfr was 11. Although I knew I had been diagnosed years ago I felt fine. Fortunately my doctor listened to me and I didn’t get catheter placed til 4 years later! I was at 2. I would just ask if you could wait awhile. I knew it was ultimately my decision and I feel I made the right one.
Ok, you are the first one I've head of that waited until your egfr was "2" before starting dialysis. One of the issues I've had with all this was that in January 2020, the kidney education person at my neph's office said that I dialysis was "eminent" for me at egfr 11. So I was frantically getting everything prepared for PD. But then when i saw my neph again, he said, "how are you feeling"? I told him I felt ok, just anxious about starting PD. He said that I could start, but it was up to me if I wanted to wait until I "felt" worse and had more symptoms. I said that I would wait. We'll I've waited and I'm at 7.4 this last month and just went on a snow ski trip with my grandkids this weekend, so I'm not feeling that "bad" obviously. I am thrilled to hear that you made it to "2". The lowest I had heard before was "5". So this means there's the potential that I could continue to kick the dialysis can down the road a bit longer which would be awesome! There's a couple more things on my bucket list I would like to do before I start. So we'll see how this goes. Are you on PD or hero?
Hi my GFR is 10 & 4years ago they wanted to put a fistula in but I didn’t want it. I am like you feel not too bad can manage although I haven’t got problems with BP so they said all the time you can manage that’s ok. I think back & if a fistula was put in or anything else it would not have been used. Have your bloods done regularly. Please just wait you know how your body feels. I will wait & I am now 84. Best wishes & take care
My husband had his fistula surgery a year ago when his kidney function was at 15. Still not on dialysis yet and oddly his blood test yesterday showed improvement at 24. I didn’t know that could happen. You are better off, in my opinion, to be ready with a fistula and not have to go into emergency situations when necessary.
It took several months to get the “kinks” worked out of my husband’s arm fistula initially. He only has to keep up with a few exercises to keep it developed and strong. His gfr was at 15 when he did this coupled with the fact that he was extremely ill otherwise. Dialysis looked very near for him. Then he lost his appetite and thus weight. He was not that overweight in the beginning. His last gfr was 24 which is a mystery to us as we thought this is rare. Consider your other symptoms combined with your gfr when making this decision.
You may or may not have to start dialysis after your Catheter is placed...but you will have to go to the Clinic once a week and have it flushed...and Medicare will not pay for the surgery if dialysis is not started within 30 days...
Please explain your comment that Medicare will not pay for the surgery if not done within 30 days. 30 days from when? From when the doctor tells you to do it or when you reach a certain GFR? I am praying I get a call for a transplant first. Also anyone here considering PD and live alone in a small apartment? I have no room to store even 15 boxes of fluid and am scared to keep area clean and hook myself up each night. Thank you for your support and comments here. BB
I had my surgery done on Feb 4..and didnt start Dialysis until March 2...because it was not In Feb...they wouldnt pay for my surgery..I was only 63 and not on Medicare yet ...you may already be on Medicare...or have private i esurance. It may be different...but if you are down to 10 GFR your doctor may recommend starting Dialysis while waiting for transplant to help protect your other organs...plus being on Dialysis will move you up on the list....If you dont want to do PD at home because of the space issue, you can always do Hemodyalisis in the Clinic..you should tell your Doctor your fears about PD
Great info. Thank you. How did you take care of your fistula for PD over the years? Is it hard to manage with it in the abdomen area? Restrictions? Risks?
It must be cleaned and bandaged daily...but it only takes a few minutes...I keep my tubing and transit set taped down to my tummy so it doesnt get tugged and I am very careful to have clean hands and supplies when I hook up and unhook from my Cycler...other than that I dont think about it much...its actually very tiny...I do very well on PD...I feel so much better, evan though I never really thought I felt bad....I do PD 8 hours while I sleep, then unhook when I wake up....I forget most days that I am even on dialysis
I think the nephrologists are too quick to tell the patient to get a PD catheter or a fistula. In my case, it was like the first of December and my nephrologist said "you better get it now because a lot of doctors go on Christmas holiday and I don't want to see you in the ER and get a chest catheter." I felt okay with a 15 GFR, and have seen people on here with an 8 and still working and doing fine. I think he rushed to have my catheter put in. I don't know how that affects how he bills Medicare or my Humana insurance but I think it probably is beneficial to him. I would do what others have said and listen to your body. You certainly don't want to be in an ER situation where they have to put a chest cath in as those have a high probability of infection, but you don't want to rush putting the catheter in and then regretting it. I started dialysis or training for dialysis about a month after the catheter was put in. I did start the process of getting on the waitlist at my local transplant hospital. They did add me to the wait list and maybe I was just a little bit healthier than without starting dialysis.
Hi! You have time to evaluate your situation and consider your options. You're in charge of your life, no one else. I do know you're very fortunate not to be a diabetic. You do have high blood pressure which you will want to keep in check since high blood pressure is one of the leading causes for kidney decline. The aging process also lowers egfr over time so that is expected. (I have a friend whose mother made it to 100 with very, very low egfr - I got the impression it was around 2 or 3 at the time she passed from an unrelated cause - her pace maker battery ran out.) If I was in your situation, I would give considerable thought to a catheter placement. (Btw, fistulas and catheters are two different forms of access used with different types of dialysis.) I do know I'd definitely want to lower my blood pressure, and I would keep an close eye on how I felt physically. The one thing you want to avoid is an emergency hospitalization. In my hubby's case, he wound up hospitalized because his blood pressure soared (240s/120s) and the only way they could bring it down was through dialysis. (He then had to move off hemodialysis to go to peritoneal dialysis - his preferred choice). At the time, he was taking 3 different forms of blood pressure meds. It's interesting that you're on one right one. So simply be aware of your options, think about matters carefully including type of dialysis should that be needed, and live life accordingly. I sense you will make a great decision regarding your health!
Thank you Darlene for your very good advice. My BP was high with amlodophine dosage at 5 mg. Now that my cardio has increased the dosage to 7.5, my BP has come down 20 pts. It is avg. 142/70/55I do daily log.
I have realized that doctors do not analyze our blood chemistry in very detail. They look at 2-3 variables during the visit.
I have to do lots of research to tell him about the pros and cons of some meds. eg: he wanted to increase (x2)the dosage of amlodophine so I very politely told him that it will result in water retention( edema).
Then he changed his mind and kept the same previous dosage.
Anyway thank you for good advice. God bless you and your husband.
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