Community Forums

VSPA · 10-15-2018, 04:11 PM

I am not sure where this should go, mabe we need a health issues section. I'm not looking to start an "Oh woe is me" thread, but I'm in the need for some info on my developing health issues. Of my three hobbies, pistol target shooting, gardening and RVing and, RVing is by far my favorite and as I have been recently diagnosed with kidney failure and was told today I will be on dialysis within the next two month if not sooner. I am wondering if there are others on dialysis that are continue to do RVing. The thought of quitting and selling the RV are just not setting well with me tonight. Any advice would be greatly appreciated.

BuzzWolfAR · 10-15-2018, 04:32 PM

There are two types of dialysis, one would allow you to continue with the RV lifestyle, albeit some changes would be required. Talk with your healthcare professionals.

sdennislee · 10-15-2018, 06:01 PM

Look in to home dialysis. Machines are small and should easily fit in your RV. The watch word is cleanliness.

Lots of other info out there, just grabbed a couple I thought would help and give you something to talk to the doc about next visit.

Best wishes

https://www.kidney.org/atoz/content/homehemo

https://ww3.nxstage.com/patient-stor...06c5cbf294fbfc

KenZ71 · 10-15-2018, 06:37 PM

Any reason someone can't go to a different dialysis center for each treatment? Assuming you can cover the distance between centers in the required time.

Gary RVRoamer · 10-17-2018, 08:46 AM

We continued our RV travels for years while my wife was on chemotherapy for her metastatic cancer. It took more than a bit of effort to arrange for her treatments in various places, so we restricted our range somewhat to stay in areas where we had already made arrangements, but it worked quite well. She got treatments every 3 weeks and we established doctor relationships in Virginia, Pennsylvania and Maine (home is Florida) so we could travel the entire US East Coast. We were long-timers, staying in the RV 5-6 months each year.

The medical system isn't set up to make this easy; you can't just drop into a chemo or dialysis center and explain your need. Each procedure requires a local doctor authorization and they won't give it on the say-so of your home physician. Liability concerns, insurance requirements, even doctor hubris make it tough on traveling patients, but it can be handled once you learn the ropes. That said, we were always able to find a doctor who was cooperative and a few even made personal calls to her primary oncologist to make sure they understood her treatment program correctly.

A friend tried to do much the same thing and couldn't manage it. Their own physician was against any travel at all, so making arrangements was problematic. Getting the medical fraternity to work with you is hard enough without active interference.

VSPA · 10-17-2018, 10:11 AM

Thanks Gary! In the dark recesses of my mind I figured that it would be difficult at best and would have to limit trips to long weekends.

Blueharp · 10-17-2018, 10:18 AM

Quote:

Originally Posted by VSPA

I am not sure where this should go, mabe we need a health issues section. I'm not looking to start an "Oh woe is me" thread, but I'm in the need for some info on my developing health issues. Of my three hobbies, pistol target shooting, gardening and RVing and, RVing is by far my favorite and as I have been recently diagnosed with kidney failure and was told today I will be on dialysis within the next two month if not sooner. I am wondering if there are others on dialysis that are continue to do RVing. The thought of quitting and selling the RV are just not setting well with me tonight. Any advice would be greatly appreciated.

I too have been diagnosed with ckd. I just recently bought our motorhome and have been full timing for 3 mos.
You probably already know this but I’ll give you a brief explanation.

There are 2 types of dialysis. Hemodialysis and peritoneal dialysis. In hemodialysis the blood is removed from the body, filtered and put back in the body. This is usually done at a dialysis center but can be done at home. Peritoneal dialysis uses your peritonium and a glucose solution to filter your blood. This can and is done at home.

I have opted for pd because I believe I can make it work with our lifestyle. The main issue is in having enough storage space for a month worth of dialysate. I’m still working on the logistics of it but between the toad and the basement I think it will work.

You need to educate yourself about dialysis (there is a wealth of information on the web) and make your decisions accordingly.

All that being said, don’t despair. I was told 2 years ago I would need dialysis in a couple of months. By changing to a healthier diet and lifestyle my numbers improved considerably. I will not give up until absolutely necessary and neither should you!

I would be interested in hearing what you come up with because it appears that our journey will be similar.

Good luck to you brother and keep the shiny side up!

Doug

VSPA · 10-17-2018, 10:57 AM

Thanks for the feedback, I can use all that I can get. Currently my first consideration is Hemodialysis and have it done at a center. I have a rare form of the disease called Fibrillary Glomerulonephritis (GN) with no known cause or cure other mabe overall auto immune failure. I even tried an experimental chemo treatment, Rituxan, that did not generate any improvement. I lost a friend last year, whose wife is an RV, to similar disease. He started out on the peritoneal but switched to the Hemodialysis after a few months due to some problems and lack of good results. A lot of my decision is based upon her advice and experiences.

Arch Hoagland · 10-17-2018, 11:04 AM

VSPA..Are you on a waiting list for a new kidney?

Blueharp · 10-17-2018, 11:40 AM

The coordinator at the kidney center I use said if I went with hemodialysis (as you noted sometimes peritoneal doesn’t work) that the only limitation to traveling was knowing where you’re going to be. They could make arrangements nationwide.

FTer&nj · 10-17-2018, 12:05 PM

Best wishes in whatever you decide. I think the main thing is to keep a positive attitude and try and do what you love.

VSPA · 10-17-2018, 05:11 PM

Quote:

Originally Posted by Arch Hoagland

VSPA..Are you on a waiting list for a new kidney?

Not yet, but I'm waiting on confirmation of an appointment with that department and one to schedule the placement of the access. I do have a positive attitude and am continuing with my life. Going to schedule a show and tell with a local center to enhance my knowledge. Though not a the pace I used to do, I've been out in my garden prepping it for winter shutdown, panning range time with another Church member, my Bible Study Leader, to go put some holes in soje targets and continuing to prep the RV for a long week end trip.

Arch Hoagland · 10-17-2018, 05:19 PM

We have a friend who received a new kidney two years ago after being on dialysis for several years.

He now works as a volunteer at the dialysis center helping those who come for treatment.

I sure wish more people would donate organs....it makes such a difference in other people's lives.