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    July 29, 2013

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    Christa

    I am hanging by a thread trying to prevent dialysis. Do you really have to have that port thing grow on your arm or can't they just use the veins you already have? I a, 47 years old and have a very squeamish husband

    Frances Suber

    My spouse is on dialysis and have been since 2010. We are considering home dialysis. Would you recommend homme or the dialysis?

    Bill Peckham

    I dialyzed incenter for 11 years and was a dialysis success story during that time - I worked, volunteered and traveled the world. Since 2001 I have dialyzed at home and continued to be a success, working volunteering and traveling but in addition I've felt better.

    Not only do I feel better, I think the way I dialyze currently, over night and more than four times a week, is the least burdensome way I have dialyzed in my 23 years of using hemodialysis.

    I'd say give home hemodialysis a try, the only way to know for sure if it is good fit is to see for yourself.

    Herbert Morris Jr.

    Hi Bill
    My Husband has been on nxstage for 4 months now and we are planning a cruise for oct2014.we live in Louisiana could you email us any information or contacts on cruise ships that accept nxstage users.

    Thanks Regina & Herbert

    Dayna

    Hi Bill,
    I have just started reading the various blogs out there re kidneys. Your name has come up often. How did you get to where you are with kidney disease and the age at which this happened? I realize that crying and stressing over my husbands condition is not healthy for him or myself. So as of today I will stay strong and stay the course:) and find comfort and knowledge in others journey. I realize we have to be positive. My husband has diabetis, HB, and now a gfr of 22. The nephrologist told him last week to see the vascular surgeon to consult re a fistula in place as the dr wants to be pro active. We have kaiser through my employer. However it has gotten so expensive re the premiums that as of jan 2015 it will no longer be affordable at 1200 a month. He is in construction and self employed in a very small business. Having the fiddle means he will not be able to lift heavy things which is a huge part of his job. Do you know anything about kaiser and dialysis? Do you feel the nocturnal dialysis is the best way to go? At least in the beginning? I have read that the Japanese do this and people are much better off. Can you do this kind set home as well? Do you recommend any web sites? I also read that if you take Crestor it's not good for the kidneys? The dr said protein 60 gr, sodium 2000, potassium 2500and phosphorous 2000. It seems an awful generous amts for a gfr of 22. Your thoughts?

    Bill Peckham

    Hi Dayna
    I couldn’t do my job – I work through the Carpenters’ Union producing graphics for tradeshows – if having a fistula meant you can’t lift. The thing to avoid with a fistula is carrying weight across it – for instance a strap across my forearm is a no no, or carrying a bundle of wood with the weight across my forearms. Lifting things with your hand is fine once the surgery has healed and after starting dialysis he’d want to make sure the needle sites were fully clotted.

    I give my physical job a lot of the credit for how well I am able to accommodate dialysis. I started working through the union in 1995 after four years of using dialysis. At the time I felt I was in a downward spiral of not having energy, not doing much, not eating well, and not sleeping well – each thing made the other symptoms worse. Once I started working – as a new hire I got a lot of the more physical jobs on show site – I ate better, slept better, which gave me more energy which allowed me to do more, it was an upward spiral each thing made the other symptoms better.

    I’ve been doing lone dialysis at home overnight since January 2008 and have found it to be the least burdensome form of treatment over the 24 years using hemodialysis. I give over about five hours of awake time a week to dialysis, while receiving over 30 hours a week of medicine (aka dialysis) which means using home nocturnal hemodialysis has little impact on my day to day activities and leaves me feeling well. The key thing to consider is awake time spent dealing with treatment or how to maximize your awake time. To me the important thing to figure out is how to give yourself the most time awake and productive, home nocturnal does this better than any other version of hemodialysis that I’ve tried.

    As far as the diet I’d go with what the doctor is telling you, having diabetes and kidney disease is tough, my main concern would be making sure he’s eating enough calories, malnutrition is more of a problem than having a bit too much sodium

    Dayna

    Hi Bill,
    Thanks for the reply. Did you have diabetis as well, or was it something else that caused you to go on on dialysis? Because my husband does tile and works for himself, I don't think he will be able to continue his line of work because of the heavy lifting.This is when we will really be in trouble. My hope is that he will somehow qualify for financial assistance or disability since he has never put money away. I will probably go on covered California and he I would assume go on Medicare or medical. I'm doing a lot of research so I can be one step ahead of the drs. Are you anemic at all? Do you get cold often? Thanks again for your reply. I will be in touch with questions if that's ok?

    Bill Peckham

    Does your husband want to stop working? I ask because from what you wrote it sounds like you expect him to need to stop working. That is a mistake.

    You asked “How did you get to where you are with kidney disease” which I took to mean “How is it you you’ve made your kidney disease a small part of your life while working full time, volunteering and traveling” my answer is I’ve done that by working a physical job. My physical job deserves a lot of the credit for how well I’ve accommodated dialysis for the last 24 years – since I was 27 years old. Rather than bending your husband to fit the requirements of kidney disease you should be looking for ways to bend kidney disease to fit your husband. I don’t know your husband but it sounds like he is the type of guy who, like me, needs to work. It’s what we do.

    Now it may be that the damn disease will make it impossible to continue his work but unless he tries, how can anyone really know? If you want a normalish life living with severe kidney disease you have try to live a normalish life. If having a normalish life includes working then you need to continue working until you can’t, until you try and try again and just can’t work. Don’t stop working because you think there will be a time when you can’t so why even try.

    Dayna

    I see what you mean Bill. He needs to work not only for financial reasons, but also just for mental reasons. He works with his hands and lifts heavy tile. It is just himself and a helper. Though he is in demand and usually has steady work, being in construction there are slow times. What I am afraid of is his lifting. He will have to be so careful or I guess get creative in regards to his job. I just tonight googled what a fistula in the wrist looks like. I was shocked. Does the arm really look like there are bulges or are the pics from long ago? I am hoping there are more advances that make it less bulky. I don't know any other way to say it:( do you have any tips re anything that you have learned along the way that we would benefit from? One last thing re: how you got to dialysis. What I meant was for my husband, it was a result of uncontrolled diabetis. That led to now stage 4. Did you have diabetis? Ok I have bugged you enough. Be well Bill. Thanks for your replies. It means a lot. Dayna

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