Can someone help me out here?

[strings_man62]

Hey everybody
I am new to the sight and have some ???
I am currently on in center Hemo and I am seriously checking out HHD.
Is it really as good as it really sounds?

Currently I am on ICD 3 days a wk 5 hrs a day ( I am a big dude, 6'5" 270lbs.
They say that I would be doing HHD for apprx 21/2-3 hrs a day 6 days a wk.

I visited a man on HHD this afternoon and his dad was really trying to talk me out of doing it cause all the hassle (paperwork etc). But I've got a nursing background somewhat,(Ive finished my 1st yr of a 2 yr nursing program) so I don't really think it would be that bad. My wife will b my care giver.

Just curious on what y'all have to say.

Thanks for any help it would be appreciated alot.

String_man62

a.k.a

Ron

[Gustine]

Originally Posted by strings_man62

Hey everybody
I am new to the sight and have some ???
I am currently on in center Hemo and I am seriously checking out HHD.
Is it really as good as it really sounds?


ABSOLUTELY! It is true, a fact... been doing it since 2004 and must say my health improved so much, almost like having your real kidneys! ..in terms of diet and energy


Currently I am on ICD 3 days a wk 5 hrs a day ( I am a big dude, 6'5" 270lbs.
They say that I would be doing HHD for apprx 21/2-3 hrs a day 6 days a wk.

I visited a man on HHD this afternoon and his dad was really trying to talk me out of doing it cause all the hassle (paperwork etc). But I've got a nursing background somewhat,(Ive finished my 1st yr of a 2 yr nursing program) so I don't really think it would be that bad. My wife will b my care giver.

Just curious on what y'all have to say.

Thanks for any help it would be appreciated alot.

String_man62

a.k.a

Ron

DON'T get disocuraged! Many people out there are not well informed about the benefits of frequent dialysis at home. You have to try it to see it and feel it.

For a person your size I would highly suggest Nocturnal dialysis, you'd get more bang out of it and feel near normal and eat near normal...just like having your own kidneys


For more research I added these video links....

- Nocturnal Dialysis is Good
- JAMA on Night-Time Dialysis

Heck, even people in other countries do Nocturnal... Incenter Nocturnal Dialysis in Portugal

[strings_man62]

Thx for the reply Gustine. I have had too many surgeries on my tummy to be a candidate for PD, and they told me they didnt want me doing thing HHD while sleeping. They said I could catnap aslong as I had my caregiver around.

[Gustine]

Interesting, I also am not a good candidate for PD...never, never in my lifetime they placed PD on me, its always been hemodialysis for me. I also do not do Nocturnal, I do Short-Daily.... but I do run bit longer than suggested time.... for example, if suggested time is 2:30 then I add extra 1/2 hour....depending how much I ate, so my time can vary from 2.5hours to 3hours on the machine.... and I do 6x oper week...sometimes up to 25 times monthly... Nocturnal may be bit challenging as it takes time to adjust sleep pattern and having caretaker nearby may cause headaches, not sleeping well either. Another option you might want to look into is Incenter Nocturnal...sleep at the center all nigh and have the days free...

Originally Posted by strings_man62

Thx for the reply Gustine. I have had too many surgeries on my tummy to be a candidate for PD, and they told me they didnt want me doing thing HHD while sleeping. They said I could catnap aslong as I had my caregiver around.

[HomeDialysis]

Strings,

You will be much better off taking control of your own treatments. I would look into home dialysis with NxStage. It is a portable unit that is very easy to use. There are mny sites you can go to besides the davita site to learn more including:
www.nxstage.cm
www.nxstageusers.com
www.homedialyis.org

There is also a nxstageusers forum where you can talk wth others on NxStage and learn about it beforehand and ask any questions you may have.

[Blessed]

I'm so glad to hear from some of you doing home hemo! I am very interested - my center does not offer it but my Dr. was excited that I want to do it and said he would work with me in the future to set it up if I can't qualify for a transplant soon. I have 2 questions:

I live alone and have no family in the area, so no caregiver to help me. Do you think this will be a problem? I am only 33 years old and very capable Is it required that a caregiver be trained with you?

2nd question is that I have 2 cats, and I'm wondering if that would be a problem?

Thanks so much for your help!!

[malibu]

MM is about to start homehemo, the Social Worker at the Davita we will be training in said that the home does not have to be 'sterile'. She said that she keeps hearing that and that is not true. She asked if we have pets, I told her we do have 3 dogs. That was fine with her. I also passed on the fact that MM (and I guess I'll break down and admit that I too) am a clean freak. Our house is extremely clean and our dogs are very well trained. That was just fine with her.

I do not know about the caregiver situation, sorry.

[Gustine]

Originally Posted by blessed

i'm so glad to hear from some of you doing home hemo! I am very interested - my center does not offer it but my dr. Was excited that i want to do it and said he would work with me in the future to set it up if i can't qualify for a transplant soon. I have 2 questions:

I live alone and have no family in the area, so no caregiver to help me. Do you think this will be a problem? I am only 33 years old and very capable is it required that a caregiver be trained with you?


having no caregiver or someone to join you with training may pose a problem. Most home training clinics require you to have a partner. I've known some cases where the patient only takes a partner to training and there after the partner is not present when patient does dialysis at home. Very few clinics do allow solo home dialysis and certainly you don't need a partner for pd home dialysis.


2nd question is that i have 2 cats, and i'm wondering if that would be a problem?

home hemodialysis is less restrictive about having animals around the house, but pd home dialysis requires more precaution about animals.
thanks so much for your help!!

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[Blessed]

Thanks Malibu and Gustine! Not the answer I hoped for about the caregiver, but I had a feeling it might not be safe for me to do hemo alone with no one around to help if I got into trouble. Guess I better hurry up and get a transplant...or find a husband

[jennyc]

Hi blessed,

the protocols differ depending on the country you live in. In aus they do let you do home hemo if you are single and live alone. so long as you're not trying to take of fluid that isn't there and do hhd responsibly its ok. my hubby is only going to come to hhd training to check it out and to show my son why he can't come to our bed any more.

what my nurse told me before i had the fistula put in is that you mainly crash if you try to take off too much fluid and do it too quickly. so her example was, of course you'll crash if you try to take off 4 lts in 4 hours when you're only 3.5 lts overloaded.

also you are only young, well you're the same age as me so i consider myself young! so you shouldn't give up your independance and lifestyle becuase of CRF. my motto is think happy, be happy and that was impossible in hospital/clinic based hemo for me. just walking into the place made me sicker.

if you can't, try pd (blessed) it can give you the same independance except it can be very tricky to swim.

Ron: my nurse was saying a few weeks ago she has a patient about your size who is a body builder. he dialyses slowly over 9 hours to remoe all the build up. also as a man, it is feasable for you to dialyse more often and for longer periods as you will build up creatine faster than a woman anyway regardless of your size.


now that i have to come off pd and go to hemo i'm determined to do hhd (my peritoneal lining is failing and my levels are rising and i don't want to do extra bags and risk gaining any of the 20 kgs i've lost). i've been the spokesperson at our centre for pd and apd for a few years. i've coached a few new patients in the life of a pd person and now i feel like i'm going over to the dark side. but for the reasons listed above i refuse to do in clinic hemo. i hated it the first time around. i had such a bad experience with in hospital hemo that it almost put me off hemo for good. fast 3x weekly sessions. crashing as they are ripping your blood out at an un-godly rate over 4 hours (for me). completely losing control of my treatment and life. becuase it was also through a neck vas-cath i was clotting and not getting enough dialysis.

honestly if you're capable and want to have a good life where you can forget about your crf for a while and live well i'd recommend any type of home dialysis available.

i've really been fighting for the nx stage cycler but they don't offer it here in oz, can't get it they only supply the fresinus machine. i will miss the freedom pd gives me but hey i'll still have limited freedom.

[Blessed]

Thanks Jenny! Its interesting to hear your story, and talk to someone my age going through this also. I have not even looked into PD because I don't think I would deal well with having all that fluid in my stomach all the time. My job as a sales rep requires me to be very active and I just can't imagine feeling like I was pregnant while I am walking around in my business suit I'm also concerned about the weight gain that I hear comes from PD. So, I have decided because of those reasons that Hemo is right for me. And honestly, in center so far (2 weeks only) has been a good experience. I leave feeling better than I did when I came in, and the facility and staff are so great. My biggest complaint is dealing with this tunnel catheder - it hurts constantly, still! I can't wait to get my fistula and for it to be mature so I can get rid of this horrible catheder. Hemo is a huge time commitment and I would rather be doing it at home, preferably with NXStage. I will keep researching and hopefully they will let me do it without a partner.

Take care Jenny and I hope to chat with you again!

[M3Riddler]

[quote=strings_man62;25977]Hey everybody
I am new to the sight and have some ???

I visited a man on HHD this afternoon and his dad was really trying to talk me out of doing it cause all the hassle (paperwork etc). But I've got a nursing background somewhat,(Ive finished my 1st yr of a 2 yr nursing program) so I don't really think it would be that bad. My wife will b my care giver.

________________________________

String_man,

I would not let anyone talk you out of HHD. You will be in control.
Also, you do not have to have any type of degree to do home dialysis. Many people do not even have a high school deploma and are able to perform home dialysis. All it takes a the will to take control of your own treatments. It is not rocket science, Many can perform home dialysis as long as they are trained properly. With your nurses background, you should not have any problems at all. If there is a will, there is a way.All it takes is dedication.
You lab results will be much better as well as feeling better with more energy. You should be able to get off of your blood pressure meds if you currently take them.
I a doing NxStage 6 days a week and my labs are great. I encouage it to anyone that needs dialysis. The problem is that many clinics do not give patients a choice.
Home Hemo all the way!!!!

///M3R

[home28]

Hello, Im 26 and I help my 28 year old b/f with Nxstage home dialysis...He had only been doing in center for 2 months when we realized that wasnt for us..He is doing much better at home. As far as paper work you fill out 1 sheet each time you run and all it is is your vitals and readings the machine gives you every 1/2 hour. Everyone I've talked to highly recommends home dialysis and the nurses were telling us all the benefits if doing it at home...we had a meeting with them before we decided to start home dialysis and they explained everything to us and we were reallt anxious to start..And you can do it with out a partener its more work on you but i talked to and seen multiple people at our clinic doing it by themselves thats in Indianapoils...hope you get to do it at home if thats what you want

[malibu]

MM had his AV Graft installed Tuesday. He is healing fine but is nauseated quite a bit, feels tired/sick, and says he aches all over. Today was worse than yesterday, I guess that is how it goes. Maybe tomorrow will be a better day. I think that because his numbers are so bad (creatinine 12) this might be why the surgery is so hard on him and he feels so bad. Anyody have experience with this?

Also his appetite is not there..I guess that might have to do with being nauseated. Anywhoooooo, heres hoping tomorrow will be a better day.

Oh, I wanted to write this but almost forgot!!! We had our meeting with Davita to get home hemo started. They seemed nice and thorough. Gave us a list of what we needed to get for them before we could start training. We are trying to start training in the same month the graft was installed so that medicare will begin this month. If we cannot track down all the paperwork then we will be in trouble. Also if the graft does not heal sufficiently to use it by November 30th we are sol. Davita is doing a home visit the 16th. Hope we pass!