New to Dialysis and Have Concerns

Hello Good People,

I am 67 and was told my eGFR has dropped to 30 and that I may need dialysis or a transplant soon. They are going to do an ultrasound to rule out a blockage.

I have had type II diabetes for over 20 years. I also have high blood pressure, and cardio vascular disease. My birth mother, whom I never met, passed away from a massive heart attack at age 63. She had diabetes also.

My adoptive dad died in 2012 after three in home dialysis treatments. I am pretty sure I don’t even want to try it. I am very concerned about being hooked up to any kind of machine for any length of time.

I am a former professional athlete who taught Karate for 30 years and I have had a great life. There’s nothing more to check off on my bucket list. I have always believed that people cling to life way too tight. Personally, I am prepared to let nature take her course, but I also have a wife and children who are both adults.

That being said, can anyone direct me to where I may read about other patients’ experiences with dialysis? A nurse friend told me that there have been great strides in the science but I am not finding anything to allay my suspicions.

Thank you, and God Bless!

Robert

Hi Robert. I just started home hemodialysis in March. I wanted to ease your mind on a couple of things.

  1. Most people don’t start dialysis until the GFR is under 15 and perhaps even more like 10-12.

  2. Everyone is different, but my GFR took about 5 years to drop from 26 to 13. I am no athlete, age 61, a 30+year T1 diabetic, on BP meds for 2 decades, and have significant cardiac disease/stents/bypass. I still make urine so that is good too.

  3. When your GFR declines more and gets in the 15-20 range it would be time to decide on PD or HD and plan on getting a PD port or HD fistula at the appropriate time ahead of needing dialysis. They take some time to heal/mature.
    Your nephrologist can advise you.

  4. I started on home hemo, which came with great training for me and my wife ( easier and safer if you hhave a care partner). aShe had to leave town for a week and i went to my nearby DaVita center (arranged by my DaVita Home HD nurse in advance). It was a great experience and i would gladly go there again. They do all the work. Just bring a phone or tablet and headphones to occupy your time.

  5. I like having flexible schedule of home HD, even though it is 4 times a week vs 3 times in center. But it is like a half-time job. Again i am still a rookie.

I hear people feel really bad when they don’t do (enough) dialysis. I feel the same as always. We just walked 3 miles and i will shower up, eat lunch, and start setting up for this afternoon.

Enjoy many more years of life ahead!
Good luck!
Dave in Kansas City.

Hi Dave,
Thank you so much for answering my post!
It has done a lot to sooth my ruffled feathers.
I am hoping that my numbers will improve now that I have moved to MS from LA. My wife and I were illegally evicted and the stress was unbelievable. We weren’t even behind in our rent.
It was very reassuring to read about the length of time it took for your GFR to deteriorate to the point where you had to go on dialysis. I know we are all different, but if I can delay my decline for even a few years, I will consider myself blessed.
Thank you again for replying. I will pray that you are granted many more years of God’s grace.
All the best,
Robert

Hi Dave,
Your story sounds like I could have written it. After a heart attack and various dyes, my kidneys pretty much gave up after skirting stage 4 failure for a few years. I awoke with a hemo port installed and did hemodialysis for a few months. The hemodialysis became increasingly draining and I’m not good with needles, so I am reluctant to get a fistula since it makes that arm useless for just about any medical procedure (BP, IV access, etc). I decided to try PD and it was one of the best choices I have made, IMHO. I have had some problems with needing it repositioned after it migrated and became tangled in my intestines. The repositioning required general anesthesia but was mostly painless afterwards. With my current setup using a cycler, I can disconnect twice per treatment, although after disconnecting twice you are finished with your treatment. There are extension connectors that can give 3 disconnects, but I don’t use it because I fear contamination from the inevitable few drops of fluid that leak out of connector ends. I would recommend this for anyone, although I guess not everyone can use it if they have had surgeries in the lower area.
If you have any questions, feel free to contact me off board and I’ll do what I can for you.

Jim

I forgot to talk about the good stuff! I learned that a gfr of 20 or lower is time to talk transplant. In fact they like it if you can transplant before ever starting dialysis. That brings up deceased or living donors. You might be surprised that someone in your circle may offer a kidney. The kicker is they need to be in good health and usually a body mass index under 30 and maybe even closer to 25 or less depending on transplant team requirements.
Anyway that gives you lots of time to ponder and get a good cardiac test to make sure there is nothing hiding in your EKG or stress test results. I have been fighting that stuff for over 3 years. Hopefully done with that now and can get on the list next year after i get off plavix for the last stent in May.
Sorry to hear about the eviction. Landlords have too much power.
Take care and best wishes.

Hi Jim. I thought about PD but i was concerned i would not like the fluid in my abdomen. Glad it works for you and many others. I am happy with HD for now.

Good Morning, Dave,
Thank you for the additional information, I appreciate it.
At this stage, PD sounds like the least likely option for me too.
I am moving forward with the ultrasound. We’ll see what the nephrologist has to say.
Landlords do have too much power. Ours were former US Marshals and we trusted them. They told us for six years that we were tenants for life as long as we could pay the rent. They lied. Actually had us surrounded by sheriffs who ordered us to leave the NOLA Civil Court building and not to return until the day of our trial when we had permission from a judge to observe. It is so corrupt in NOLA. I have made a Public Integrity Complaint about the sheriffs and will be following up with a civil Pro Se action. In the meantime, life goes on!
I wish you the best, and God bless,
Robert

One thing that’s really important when you find out you have kidney disease is to consider what you value, your goals, and your lifestyle when thinking about options for treatment. There is a decision aid to help you review your options. You might want to check it out.

If you haven’t looked at the full Home Dialysis Central site, there is a wealth of information there, including patient stories and info on treatment options under Life@Home, plus home dialysis basics and more.

The Life Options website has lots of information for people with kidney disease who would like to do what they can to protect the function they have as well as to learn about options. Here’s a link to 6 slides on topics that might be of interest to you, but check out lifeoptions.org too.
Good Future Patients

Kidney School has educational modules on multiple topics related to kidney disease. Since you don’t have kidney failure, you be most interested in the Introduction, Module 1 and 2.
https://kidneyschool.org/mods/

If you are at all interested in a kidney transplant, you might want to look into that option. Transplant programs offer education on transplant and you can be evaluated prior to when your GFR is 20. When it reaches that level you can get a transplant from a living donor or be put on the national list. Here’s a site where you can look up kidney transplant programs in your area and compare them on the number of deceased and living donor transplants they’ve done in the last year and compared to national data how quickly you might get a deceased donor kidney and 1-year transplanted kidney survival.
https://www.srtr.org/

Finally, you might be interested in joining a Facebook group that was set up by the same folks who set up this message board. It’s a closed group. To join you have to answer a few easy questions. There are over 6,000 members. Members include patients, care partners or family members, and professionals.

Thank you for all of this information, Beth. I appreciate it!
All the best,
Robert

I was really reluctant about having a PD cath put in even though I had a port for HD. I didn’t tolerate having to carry 2 liters around during the day… felt very bloated and didn’t have an appetite. I worked with the Drs and nurses and did all of my exchanges at night, having nothing to carry around during the day. For me, it works great.
I DID have to get my cath repositioned after it moved from my bladder area to around my appendix area. It was complicated by a pocket that formed around the wandering catheter which needed drained and treated with both IP and oral antibiotics. Now that the infection is gone and I’m back on my regular PD schedule (I had to use HD for a week or two until I got the cath fixed) and feel good once again. My appetite has come roaring back and now I have to concentrate on getting stronger with more stamina. During those couple of weeks when I was back on HD, I noticed a big decrease in overall quality of life. The drained feeling ruined my dialysis days and I spent the off days trying not to eat or drink too much… I didn’t miss that part of HD.
Whatever you decide, I wish you the best and have a life free from complications. FWIW, I have a BIG phobia about needles, so that could probably explain why I seem so pro-PD. I break out into a sweat when they bring out a tiny butterfly needle for blood draws! When I see the light thru those huge 14Ga needles that they use, I’m ready to run out the door!
Yeah, I’m chicken! :scream: