Preparing for dialysis, scared and confused

[Kmpopsicle]

Hi, 49 y.o. female. To give a little background on me, I was working in 2008 when I was found to have protein in my urine. Scared and stupid I didn't go back to the nephrologist. Stopped working in 2010, complicated reasons. From 2010 to 2018 health was declining, I kept putting off going to the doctor, partly due to no insurance, no money, being terrified of what they'd find, other excuses, etc. March 2018 wound up in ER, very short of breath and very high BP and stayed 4 days. Sent home with an appointment with a great family doctor who worked with me but in July 2018 things were just still in decline so back to ER and was admitted for 2.5 weeks. Diagnosis was sarcoidosis in lungs and eyes (O2 for rest of my life and cataracts), FSGS kidneys (and only left kidney still functioning). Nephrologist from 2008 saw me in hospital and has been since then. Sarcoidosis is in remission (left with permanently scarred lungs and on O2) and kidneys are not good. 13,16,18...Last 3 GFR #'s (18 the latest #), creatinine near 4. Was listed as Stage IV Severe but the Dr. said last week am now Stage 5 (ESRD? with last GFR of 18? 🤔). Going for fistula surgery in 2 weeks. I'll start PD classes/training in July. My nephrologist is of the mind set that, even doing PD, he prefers to have the fistula in place and healed if I were to have to have HD in an emergency or for other reasons. Is it common to have a fistula put in at this, seemingly early, stage? Is it common at all, when I'm going to be doing PD, to have a fistula put in in advance of even starting PD? I wish with all my wishes that I had listen to my family, begging me for years, to go to the doctor. Years of uncontrolled hbp, diabetes (that too), and sarcoidosis about took me out. How much better health would I be in if I had listened to myself and my family? Who knows, I can only look ahead now. I feel like I'm living in a fog...confused and scared. I have a wonderful husband of 33 years and 2 terrific sons, 32 and 28, all of whom are so supportive. I thank the Good Lord for them every day. Sorry my 1st post is so long, if you've read all of this, I thank you!

[Bassetmommer NKF Ambassador]

Welcome KMpopsicle.

You are not alone in this journey. We are here to support you and answer questions that you may have.

Many of us have hindsight and wished we had done things differently. But it does not change what is happening now and so we must move forward. You sound like you have a good head on your shoulders and will be strong through the challenges.

See if there is a way to hold off on you going on dialysis as long as you can. There are many of us with low GFRs who are not doing dialysis. I have maintained a GFR of 20 for over a year by diet alone. MY creatinine is not as high. But I do not eat meat. I eat low protein, lots of vegetables and grains and watch my potassium and phosphorous. I feel fine too.

Having them put in the fistula is a good idea even with the PD. Good luck and let us know how you are doing.

[Kmpopsicle in reply to Bassetmommer]

Thanks, you said some things I have been thinking and I need another appointment to talk with my Nephrologist about some of these questions/concerns. My last visit was this is what's next, ok, see you in a month. Now all this has set in I have a lot of questions for him. Thanks again for your reply. I am working on my diet to better it.

[Hidden]

Hi and welcome to the community. You have a lot on your plate and in my opinion, it seems the best course of action is to follow your physicians' advice. Let me explain. Did you decide on PD or did your nephrologist? How much do you know about CKD and ESRD? With all of your current health issues being prepared with other options seems prudent. PD is the easiest way to get into dialysis. It does require a lot of work on your part to do the exchanges. Your nephrologist may not feel that based on your history you have the perseverance to use this modality and wants you to have the fistula in place should it be necessary to begin in-center HD.

While you provided a lot of your health history, I didn't read where you have done much to investigate each condition you now have and what you can do to help yourself. Until you learn more it seems that you should follow your physicians' advice.

Since you are in the USA check out davita.com and register for a free, 90-minute Kidney Smart class in your area. You will receive a lot of information on dialysis modalities, meal plans, and receive a lot of resources for you to have and use to become your own best advocate. There are so many other things that you need to learn, but I don't want to overwhelm you at this point. Listen to your doctors and learn what you can to be able to eventually be the decision maker where your health issues are concerned.

Best of luck.

[Kmpopsicle in reply to Hidden]

Thanks for your reply and your concerns. I have made major changes in my life. I have really had my eyes opened and, even though it's too late to change some things, am very serious about my health and taking care of myself. I have been given a second chance and for myself and my family and I take that seriously. My Nephrologist suggested PD. I am not completely in the dark as far as PD or HD goes. My aunt was head nurse at a local dialysis clinic for 15 years and my husband worked at a clinic as a machine tech and reuse tech. He then went on to work for National Medical Care as a machine tech for the southeast on home PD equipment. He would set up new patients machines, service/repair them and pick them up when no longer needed. This was from the late 80s to around 2000. There is TONS I DON'T KNOW, I wasn't trying to sound like I do. I just meant I am "somewhat familiar" with dialysis but am educating myself every day. I NEVER thought I would be in the position to be facing dialysis. I am under the care of what I consider to be a great nephrologist and pulmonologist. I now educate myself all I can about my diseases and self care. I appreciate any and all words of wisdom, information, anything anyone is kind enough to share.

[frkweber]

I have been on in center hemo for 2 weeks. I understand your concern regarding the fistula. It does seem odd that the doctor is wanting that right now, but I also understand the reasoning. I think you could ask him to wait on that for now - it's certainly not urgent. Just get yourself adjusted the dialysis as a whole first, then get the fistula as a back up. They did tell me that your veins are in better shape the younger you are, so maybe that would be an advantage for the fistula now. It also would give it plenty of time to strengthen if/when you ever needed it. Also gives you an option to use hemo at some point if you need it. I opted for hemo vs pd simply because I enjoy swimming too much and didn't want to give that up for pd. Hang in there!! Good that you are seeking help with people who understand!

[Kmpopsicle in reply to frkweber]

Thanks for your reply. Was just feeling like things were being rushed into. I do think I will get an appointment to talk to my Nephrologist one more time before having the surgery for the fistula to clear up my concerns. If course you have questions after you leave the doctor's office that you don't think of at the moment you get him with new info. Thanks again!

[Hidden in reply to Kmpopsicle]

Ask your doctor's staff if their office uses a Patient Portal. That's a great way to send in questions that come up after you leave and get answers in a timely fashion. It's also a way to get hard copies of labs and diagnostic tests as soon a the doctor reviews them.

[Kmpopsicle in reply to Hidden]

That's a great idea. I'll check into that. I have MyChart with most of my doctors but my Nephrologist is the only one not in that 'network'. Thank you for the suggestion!

[KidneyCoach NKF Ambassador]

It's important to maintain your residual function. With GFR at 18 it may be you still have some left. Try kidneyschool.org for great education!

[Kmpopsicle in reply to KidneyCoach]

Thanks, I'll check that out.