Anyone Working on Dialysis?

[barbara55109]

I'm 57 and have stage 4 CKD. They have found no "official" cause. I have T2 diabetes, but it is considered in control (or it was until they stopped my metformin) and I have no other diabetes related conditions. I have lived without a colon for 27 years and am often dehydrated. On July 4, 2020 I got a migraine and couldn't keep down water. I ended up spending 4 days in hospital and dropped down to stage 5 CKD. I've bounced back to stage 4, but my numbers aren't so good. My GFR moved up to 22 from a low of 7. I was at 27 before the migraine. My creatinine started rising December 2018. I went from normal to 1.98. Right now I'm at 2.37 - which is better than the 5.91 with the migraine.

If I followed the CKD, diabetes and ileostomy diets I would only be allowed water and no food. That doesn't work too well.

I am scared of dialysis. I would have to have hemo with some sort of port. My veins are so tiny they could never create a fistula. I work full time and have to keep working to keep insurance for me and my family. I can't imagine how this is possible. I can't do home hemo since I don't have the $ to install new plumbing and electrical! I've had five major abdominal surgeries and am loaded with internal and external abdominal scarring - so no PD for me. I'm fat, so no transplant for me either.

Anybody out there pull off hemo and working full time?

[Hidden]

Hi,

Are the comments concerning your access to HHD from you or from knowledgeable medical professionals? Have you actually met with the physician who will perform either the fistula or graft?

There are ways to circumvate the elimination/drain of the fluid and really don't require extensive changes to your home.

This has come up in prior posts in this community and let me again offer a suggestion. There is a great book called "Help, I Need Dialysis! How to have a good future with kidney disease by Dori Schatell, MS and Dr. John Agar. It's not expensive and I ordered it from Medical Education Institute but it's also available from Amazon. It offers information on all modalities and explains everything in detail. It could offer you some additional insight that would alleviate some of your concerns.

When I was diagnosed three plus years ago and learned what I needed to know to slow the progression of CKD I then started to learn about the various modalities of dialysis. I'm doing everything I can to stave off dialysis for as long as possible however, should that time ever arrive I've decided that HHD is the best option for me. After speaking to my nephrologist about it, he agreed with me that I would be a strong candidate for HHD and he saw no problem with that. When not hunkered down with this virus mess, I enjoy traveling the country by RV. Using the NxStage machine I would be able to continue to travel and dialyze in the evening. I would not have to make any changes in the plumbing or electricity either in my home or in the RV.

Get yourself a copy of the book, read it and highlight the portions you are specifically interested in and ask your nephrologist questions and find out the name of the surgeon that will eventually perform the access surgery and obtain a referral for a consult with that doctor and get detailed answers to your questions.

Best of luck.

[barbara55109 in reply to Hidden]

I know way more about my veins, ileostomy and other rare conditions than the drs. My IVs fail after minutes and hours. 3 days is the longest they've lasted using neo natal needles. Last iv took 3 tries. This is typical. At last hospitalization a Dr asked when my last colonoscopy was, right after I told her I'd had my colon removed in 93! No one in my state offers home nocturnal hemo, which would be best chance of keeping my job. All materials indicate electrical and plumbing required for home hemo. I have to keep working for another 13 years for insurance! I can't even cut hours as I would lose insurance.

[Hidden in reply to barbara55109]

I wish you well.

[Darlenia]

Hi Barbara. Sorry to hear about your situation. My husband recently went on in-center hemodialysis in June. There are a large number of patients at the the dialysis center of all ages, sizes, shapes, and more. While some are struggling, others are doing very well. And it's clear that there are some that are employed...as people drive up in their work trucks and others in professional attire. You should be able to arrange hours that are suitable for you and your job. My husband is still employed at age 70, but he's self employed. He picked the hours that would leave most of the day available so his sessions go from 3:00 to 6:30 M,W,F. A good number of working folks go in on Tu,Th,Sa. As for fistulas and grafts, there are three or so types and some work well with small veins. So I wouldn't worry too much about that. As Mr. Kidney suggested, you may want to consider doing hemodialysis in your home where you can control the hours you're on dialysis. Generally speaking, dialysis isn't considered until your kidney function drops to around 10% - a threshold that most insurance companies will want you to meet before paying for it. That said, it's good that you're looking ahead. Getting a permanent fistula or graft in place early will eliminate the intermediate step of getting a temporary catheter, etc. The more you know, the easier it will be. Sending positive thoughts your way.

[Olivia007]

Hello I know dialysis seems very scary my mom went through it. As far as the fistula my mom first had her port put in the spot by her heart and they put expanders in her left arm for over a month. So the expanders I assume expanded the areas in her arm for the port. Then they disconnected the port in her heart and the one in her arm expanded and they put the port there. She was 78 she lived till 84 but she had diabetes congestive heart failure and anemia and renal failure. She struggle she didn’t watch her food intake and fluid which is a major factor with her issues and dialysis.

But I would take her to dialysis because she didn’t drive never learned and didn’t speak English so as I stayed with her I would see a lot of people at talk to them a lot that were younger worked. One last friend worked at Kroger 3 days a week for insurance purposes and then the other 3 she had dialysis. Yes she was tired and exhausted but she did it. I know it seems hard but everything is hard. Do you work now? How do you support yourself? Do you friends or family?

Beat of luck

[raelers]

Hi i am not yet on dialysis, and waiting for a arm fistula,was meant to have had it in June last year,but waited and waited then covid came and then told 3 weeks ago i would be having it,still waiting, the waiting had caused me anxiety,i have another renal appointment Thursday,and i am as well as can be,so i feel to go plantbase again as there have been many on facebook that have increased kidney function.