Hi everyone. I got this website from DaVita. My husband just turned 38 and is in kidney failure due to polycystic kidney disease. His father had it and had a transplant in 1979. His brother just got on the transplant list, and now, Rick.
We just had a successful fistula put in, after two failed ones, due to sticky platelets. DaVita is going to help us install a home hemo dialysis in our bedroom so he can do nocturnal. It’s tough because we have three teenagers, he’s a teacher for special education and I have to work full time to get these kids into college and help supplement the costs that I know are coming.
Truth is, I know no one going through this. It’s very isolating. We are still young and I find myself wanting to plan things like vacations and stuff, forgetting we are “tethered” to this machine.
I really am hopeful that I can utilize this website for information and support.
Thanks in advance for anything.
Welcome to Home Dialysis Central. You and your husband will have the best chance of a normal lifestyle that includes work with him doing home dialysis, and nocturnal should allow him the fewest limits on his diet, fluids, and time. He’s very fortunate to have you helping him! I love how you said, “we just had a successful fistula put in.”
If you search the message boards for “nocturnal” you’ll find tons of posts (206!) that will help you learn some of the daily ins-and-outs and what to expect. We also have lots of patient stories, several on nocturnal.
It’s a terrible blow to have kidney failure at 38, but you and your husband can have a good life and do the things you dreamed of (including vacations)–although some of them will take some extra planning. DaVita has a travel service that can help you find a center wherever you go in the U.S.
I’d also like to be sure you know about one of our other sites: Kidney School™. It’s a free, on-line kidney learning center that’s designed to teach self-management skills. There are 16 interactive, tailored modules on different topics, including coping, anemia, lab tests, and much, much more. You can go to Kidney School at: http://www.kidneyschool.org.
Folks here will be happy to answer your specific questions.
I am also a school teacher and started home training and dialysis around 7 months ago. I thought I would breeze through training and get home and manage teaching again straight away. Well I went back to work a few days after coming home and starting nocturnal with a Fresenius machine (which I realise now is a bit like learning to fly a plane). I dragged myself back to work for 3 months trying to stay on top of my workload and pretend to my staff and students that all was okay. My lack of sleep sapped all my energy and I realised I was not doing the kids any favours so now I am having time off to sort my dialysis out properly and work on getting myself fit again. Probably in hindsight starting straight into nocturnal (my choice) was too much to get my head around and too stressful for us. We should have started with some short daytime runs(all seems worse in the dark) but everyone approaches things differently. I didn’t want to waste daylight hours so nocturnal seemed (and is now) the best for me.
I too felt/feel very isolated and am desperate to travel (having first break next month having booked some holiday dialysis). I hate the feeling of being tethered to the “washing machine” but after all I have said it does get easier (and easier again if you can get a portable little machine that some of the folk on this forum have). I now have more energy than I have had in a long time and can enjoy life again. You will find the support provided by everyone on this forum a huge help. It is nice to think there are others out there going through similar experiences.
All the very best. You will get through this, just give yourselves plenty of time and don’t beat yourself up over things! 8)
Have you considered short daily dialysis with the NxStage
System? It would allow you both a good night’s sleep (much easier to continue working!). You could also continue to plan and take vacations–just take it with you. If you look at the patient stories on this site, there is a patient who took his machine on a cruise.
Sorry to hear your husband will have to start dialysis. We’ve all gone through that. Nobody likes it no matter at what age it happens, but, you do get used to it. I could say how dreadful it is, and I could cry about the plans I’ve had to give up. I could commiserate with people, but you know, it’s all a matter of attitude. Sure, some expectations have to be adjusted, and when you’re told you will finally need dialysis, the natural reaction is to think that life as you know it is over. That might be true to some extent, but you soon find out that if you can maintain a positive outlook, life is not over by a longshot. There are worse things that can happen.
Hopefully, a transplant will come eventually to free your family from the tether of the machine. People do manage to travel. I’ve known many hemodialysis patients who have. There are plenty of ways to travel if you can afford it. But there are ways of enjoying life closer to home as well. And there are ways of enjoying the little things a lot more. Being on hemodialysis limits travel options more than peritoneal dialysis does, but on the other hand, you get completely free days on hemo that you don’t get on PD. So dialysis-free weekend type local trips become a very real possibility. If your husband does end up doing daily nocturnal hemo, all of his days will be free, plus he will have one or two dialysis-free nights per week, and he won’t even have to diet or watch his fluid intake very much. Good luck.
I wish you the best. It is really not all that difficult at all. I would agree with everything all have said here, but as Dori said, the “WE” aspect is the most positive that couples can think. You will learn much here at this website.
“WE” happened to go through Fresenius, with a 2008H series machine and it really was easy after some practice.