Gosh, you must’ve read my mind, because I’ve often thought if we ever win the lottery there will be a “non profit” home hemo program in the US!
I promise you this lady, if there is a dialysis machine in my home I will make home hemo look good, you can count on that! Who knows, If that happens I will be looking for daytime employment and what the hey I’m sure there is a unit that needs a tech… :lol: Lin.
Hi Lin,
I know and have met Marty. My husband is on the nocturnal dialysis and the change in him is unbelievable. We just went to Florida to Disney and we were going to a family reunion. We never made it. He had a mild heart attack and quad bi-pass surgery on Friday the 13th while Charley was going over the hospital!! What a day. We were able to fly home this past friday because he is doing so well. I truly believe that if he had not been doing nocturnal before we left he would not be in as good a shape as he is. We went to our center today and they could not believe how good he looked and how well he was doing. NOCHTURNAL!!! had kept his labs where they needed to be. Where do you live? please e-mail me and I will give you some more info. pc639@verizon.net
Pat :lol:
Hi Pat, Gosh, I got the chills reading your post; you two must’ve been so scared! I watched on tv the devestation people suffered, but then I thought that is bad enough, but how are the people who need life saving txs. like dialysis doing?
I often hear that people on dialysis have weakened immune systems, get more of certain types of cancer ect… and I wonder why. Well, I just got done listening to a program on tv by a Doctor Day who sais it is our lifestyle and diet that enables us to get cancers. In regards to diet eating more processed unnatural foods, and more hormone induced meats and poultry. Gee, now that I’m on dialysis I’m told to eat more meat, less vegies and fruits, and less whole grains, the very type of diet that promotes cancers. Of course stress is a factor too, and just being incenter raises my bp very high. I will take it at home and have bp of 120/80 and by the time they take it at tx. (standing) it is in excess of 180/100!
I can’t find a serious home hemo program, and so now am even considering pd. I really need to avoid the stress and too be able to have a good diet, more of the things that people on home hemo and pd are able to consume.
Thanks for offering information to me; it is much appreciated! Lin.
I thought of a couple of things reading through these last email messages.
First, WellBound is a CA non-profit company that wants to start more regional home dialysis programs. It has opened its third clinic in CA. WellBound is a sponsor of Home Dialysis Central. If you click on its logo on the homepage, you’ll be able to read a brief description of this company. Check out its website for further information.
Second, if you believe that financial issues affect the availability of home dialysis programs, especially daily and nocturnal ones (and who doesn’t?), use our Legislative Action Center to write your representative asking him/her to co-sponsor HR 1004 (Kidney Patient Daily Dialysis Act of 2003). To have any chance at passage, this bill needs to also be introduced in the Senate. Ask and your senator might consider doing this.
Third, if you think that more media attention might help people push for more home hemo options, write the media in your area asking them to do a story on the benefits of home hemodialysis and the lack of availability in your area. With our Legislative Action Center you can email all the media outlets in your area with minimal effort.
Contacting the Media is a good start if you can get through. I contacted Media all over; the only time I got on was when the TV station had a reporter who had a family member on dialysis. Most others I contacted don’t seem to understand what your trying to say and don’t want to make waves with the Medical Centers in the area. Not being a pessimist here just don’t want anyone to get their hopes up only to find out the media isn’t real concernced about this problem either.
Well, I for one would love to see Marty go on Oprah! Marty, if evey you need help doing anything like trying to get you (home hemo) noticed by the media please just give me a shout. I don’t know what to do, but I’ll try to help. I’m just a wanna be, but you are the one living it with your dad. Gosh, you impressed me lady, and I just know you could get their attention too. Just be truthfull and honest the way you were with me, and maybe they’ll get the picture. Maybe we need to think of an angle, a reason why they would want to do the story. Someone in media must have a wanting to do it, ect… something we could expand on. Lin.
Lin, Your not going to believe this but I contacted Oprah. No results. I think you are right about the angle. I think from a patient perspective when you contact the media and tell your story it’s considered. But when they contact the medical profession to get their input it is either made light off or they just say their not interested in discussing it. This is the deal killer so to speak. I think maybe a good angle would be for Askys or NxStage to do a show explaining dialysis and their machines. Maybe that’s what I should try contacting Oprah again and see if they would contact one of these companies and ask them to do a show. Suppose we could get a bunch of e-mails going to Oprah asking for this. Strength in numbers.
Marty, You go girl, and know I’m right along with you! When you told me about how much better your dad was doing at home I couldn’t help wondering if many of the other older pts. could be helped. When I would speak to families was told they wouldn’t consider home hemo. because it was too hard, ect… If there was a machine that was easier to use it would create an even bigger demand for home hemo.
I witnesse time and time again where elderly pts. were considered to be doing poorly because of health, but there’s a much bigger picture! Are they kept down because incenter hd isn’t agreeing with their bodies? Is the diet partly to blame? Fluid restrictions? Epo and other meds? I’ve read all that is better when on home hemo, in particular slow nocturnal Of course it makes sense that more dialysis, done slower, and a better more liberal diet makes one feel better. It’ common sense!
Please know if you need me I’m here. I’ll write letters, emails whatever. You can count on me. I have to do that Marty, because so many of the pts. and families aren’t able to. I’m glad you could be there for your dad, and I don’t even want to think how things would’ve turned out if you hadn’t stepped up to the plate. Lin.
Lin, I had about lost my dad. His mental fuctions weren’t good. No appetite, No sleep. Chronic fatigue, Low BP always, anemic, couldn’t even walk without staggering 1/2 the time. And No Hope. I knew he felt like he was going when he told me his last wishes were to dialyze at home and die at home. I would have given up right here by the looks of him and said nothing can be done but I saw something no one else did and that was his will to live. I figured if he could drag himself to dialysis 3 times a week and not try to skip treatments he must still have the will to live cause that is all he was doing. Dialysis and sit in a chair. So I personally would never judge an older person or anyone else by what they look like or act like for that matter especially on 3x a week dialysis. I was determined to do the nocturnal because I thought if this saves my dad all the stuff I have read isn’t hype. If it doesn’t then I’ll know 1st hand. When I saw the change I thought this is a miracle no patient should have to live with the effects of 3x a week rapid treatments. I still believe that. Everyone kept telling us dad would never feel better and my sister bought it. They fought with me like crazy not to give dad false hopes, not to get my hopes up, not to drag dad through the moving etc. I was told I wasn’t a doctor what made me think I knew more than them. Ask them now what they think. It took them 3 years but they finally said we want you to know we were wrong, we were all wrong. Now the joke around the house is whenever they feel lazy they tell dad they think they better get on his machine. I would never try to judge the potential of a dialysis patient no matter what age I have seen amazing differences in nocturnal patients. I feel for older patients because I don’t think their families or society in general give them a fair shake. I have decided when I go for medical treatment and they say what is your age I am going to write N/A Not Applicable. I don’t want someone else judging if I should be aggressively helped or given up on by a number on a piece of paper and the way I look. Of course if you feel sick you look weak then if you look weak and old your written off. I’ll decide if I am old and weak thank you kindly. Age N/A.
Oh Marty, I cried when I read your post, thinking what might’ve happened if you weren’t there. I worked in nursing home almost 5 yrs. and then homecare. I saw a lot of our pt. population written off. True some were dreadfully ill, but so many just needed a few changes to be made.
I’m sorry too that you had to fight with your family, but glad they see what you were aiming for. Now you can all spend many happy days with your dad, that might’ve slipped away. You’ve got chutzpa (sp) in my book! Again, I know you want all of us to have the same chance, and I thank you for sharing. Now, go hug your dad and tell him that the two of you have someone in Jersey who thinks the two of you are shining examples that home hemo can be done, and one doesn’t have to be a rocket scientist. Lin.