headed to hemo

[nanadar]

Pd is not working for me... too much pain and too much puking. just talked to my Dr. and I am headed to Hemo. They will be putting in a line in my neck within the next 2 weeks and then I'll have the lines put in my arms after that. I am really dreading this move. I watched my mom and my uncle suffer on hemo for 15 years and now I'm headed there. At least with PD I thought i could have some sort of normal life... now I'll be married to the hospital and some damn machine to keep me alive.  Hubby says we'll get through it... I'm not so sure.
how bad is "home hemo" ?

[cattlekid]

Home hemo rocks!  I do short daily home hemo, 2.5 hours per day, 5x per week.  I do it on my schedule.  Sometimes it's in the afternoon on a weekend, but most times it's after work.  I get home from work, get the machine priming, get dinner made and eaten, then it's time to hook up for 2.5 hours of quality time with the iPad and TV. 

If short daily doesn't suit, there is also extended and nocturnal home hemo.  With those, you do longer treatments, which give you more flexibility with diet and fluid restrictions. 

My labs are better and I feel great.  I have no washout feeling after a treatment.  Many times, I'll do an afternoon weekend treatment and immediately go out to dinner or go run errands. 

I would definitely look into home hemo as an option. 

[Home hemo]

My husband did home hemo for about 1.5 years, after about 4 years of in-center and a few months of PD.

Home hemo puts you in charge of your treatment, how long it is, how much you take off, how often it is.  Of course, it's still dialysis, and there are needles, but we found it was a blessing to us.  My husband usually did it every-other-day for about 3 hours, depending.  Longer always makes you feel better, but it's, well, longer.

[shutterbug05]

For me HHD is the way to go.  If I could not do HHD I would be doing PD.  Going back incenter is not something I ever want to do again if I can avoid it.  I do 3 hours 5 times a week.  Usually 2 on and 1 off and repeat.   I try to make sure that I don't take 2 days off in a row.

When I was on incenter I was only able to do dialysis and sleep on dialysis days and usually did not feel well until mid-day the day after D. 

Definitely take a look at HHD if it is available at your clinic.

[lmunchkin]

Like those above, I advocate for any kind of Dialysis in the home. I can't stand the In-center experience.  We do NxStage (Home hemo) 3 on and 2 off, and we do it when we want.  It takes commitment, but it is totally worth it.  John's labs are better than ever and we just love being in our own enviroment.  I work at present, 7:30 to 4:30 five days, then get home, sit down to eat, and John has learned very well how to set machine up before hand, and I just hook him up!

He is a good patient, wonderful husband and so kind hearted!  I love caring for him and I know he appreciates the fact that I do him at home! Plus, mind you, there are 2 days that we don't do D, and that is a Godsend!

If you learned PD, dear, you can learn hemo.  It is dealing with the blood and is more to learn but it is still Dialysis, but different ways of doing it.

Sounds like you have a good man behind you, Nadar.  He is right you know, you will get through this and of course, we are here to help!

Keep us posted,
lmunchkin

[bevvy5]

Hubby had to make the leap from PD to hemo last September.  We transitioned to home hemo as quickly as possible and have been home since the end of December.

It's not PD, but for him PD never did work super well.  In Centre hemo was just as bad as with only 12 hours a week, they had to try to take so much fluid off that his blood pressure would tank and he'd be falling down all the time.  He feels better than he ever has since he does eight hours overnight three to four times a week.  If we want to go away for a couple of days, we go and he can do back to back overnight runs when we get home to "catch up."  Takes a bit more work to travel but we're not hauling around a trunk full of PD supplies for a weekend away.

It's more work for me but as I said to his neph at clinic today, if I don't have to visit him in the hospital, hopefully not worry about the complications that have plagued him over the three years he's been on dialysis, I don't care how much work it is.

 

[lmunchkin]

It's more work for me but as I said to his neph at clinic today, if I don't have to visit him in the hospital, hopefully not worry about the complications that have plagued him over the three years he's been on dialysis, I don't care how much work it is.

My sentiments exactly Bevvy.  My hubby hasnt been in the Hospital since Feb. 2010.  He hasnt had any problems at all.  Just goes for monthly work ups at the clinic and that is it!!!! When he was in-center, he was always having to go for tests and stuff.  Since doing hemo at home, it just hasn't happened.  It is hard to believe its been 2 1/2 yrs.  Wow, time does fly.

Even though it can sometimes wear on me, I still would go the extra mile for him, than to do In-center.  I just remember how washed out he was.  Hopefully they have changed that somewhat and people are becoming more aware of their care.  I just hope his in-center days are through.

I also love to Dialysis him on our deck outside.  We enjoy the out doors, so we try to get out there as often as we can.  I just hope you look into all options, Nadar.  PD was a great modality too, but I saw visual improvements with Hemo.  As long as its done in the home.  Its more pleasurable to me.

God Bless,
lmunchkin

[MommyChick]

This might be a stupid question but how does home hemo work?
I know about PD at home. They have been trying to get me to do that since I started dialysis in 2005. I refused to do that though because of the catheters. Plus it seems that everyone at my clinic who had been on PD always came back to the clinic with infections & had to redo hemo-dialysis.

Curious about home hemo?
Thanks

[amanda100wilson]

It works just the same as in unit except that you have the luxury of being I. Your own home and choosing when you want to dialyse.  A lot of us use a NxStage machine which is much smaller than a regular machine which means that you can travel with it.  It doesn't need to be plumbed to the water system and can use bags of dialysate when you travel.  The main drawback is that dialysis units require a partner to be trained for safety reasons.  The main benefit is that it is more frequent so there is not the washed-out feeling and you feel much better.

[MommyChick]

It works just the same as in unit except that you have the luxury of being I. Your own home and choosing when you want to dialyse.  A lot of us use a NxStage machine which is much smaller than a regular machine which means that you can travel with it.  It doesn't need to be plumbed to the water system and can use bags of dialysate when you travel.  The main drawback is that dialysis units require a partner to be trained for safety reasons.  The main benefit is that it is more frequent so there is not the washed-out feeling and you feel much better.

Thanks, yeah I've been hearing about the NXstage on a lot of these chats. I guess you guys have to stick your own needles?
I def. couldn't handle that, 7 yrs & I still cant watch them stick me, haha  (at least I don't pass out anymore)

[shutterbug05]

If you have a care partner they can be trained to do the cannulation for you.  In my case I do everything my self as I do not have a care partner and usually dialyze alone.  The requirement for a care partner is really at the discretion of the clinic. 

[MommyChick]

If you have a care partner they can be trained to do the cannulation for you.  In my case I do everything my self as I do not have a care partner and usually dialyze alone.  The requirement for a care partner is really at the discretion of the clinic.

That would make it kind of hard for me. My hubby works nights & normally sleeps during the day. Other family members work & have there own busy lives. I don't think it would be to convenient for me.

[Home hemo]

I guess you guys have to stick your own needles?
I def. couldn't handle that, 7 yrs & I still cant watch them stick me, haha  (at least I don't pass out anymore)

Do you have a fistula?  My husband's fistula got so big that, as they say, he could stick it with his eyes closed.

Another method that is sometimes used for home hemo is a "buttonhole" that is developed over time at the center, and then at home you just need to soak the scab off before you insert.

[MommyChick]

I guess you guys have to stick your own needles?
I def. couldn't handle that, 7 yrs & I still cant watch them stick me, haha  (at least I don't pass out anymore)

Do you have a fistula?  My husband's fistula got so big that, as they say, he could stick it with his eyes closed.

Another method that is sometimes used for home hemo is a "buttonhole" that is developed over time at the center, and then at home you just need to soak the scab off before you insert.

Yes my fistula is pretty big & nasty.. ICK !
When I was pregnant & doing dialysis everyday they tried talking me into "buttonholes" but just discussing it made me feel a little faint,  I get squeamish easily

[lmunchkin]

That would make it kind of hard for me. My hubby works nights & normally sleeps during the day. Other family members work & have there own busy lives. I don't think it would be to convenient for me.

Home hemo is not for everyone because of the reasons you explained, but you and hubby could still do it.  He could go and train with you and both of you can learn it.  When you get home, you could do the set up and all he would have to do in the evenings is hook you up and when treatment done, he can unhook you. If you have a big thick fistula (Rope) then you are an easy stick like my John.  He cant see very well to stick, plus his fistula is in his right arm and he is right handed.  But he does the setting up of the machine. He has everything ready when I get off work.

When he said he wanted to learn to help me in some way, I was hesitant, but I watched him everyday for a couple weeks, now, he sets it up better than I do.  He knows me better than anyone, and he saw exhaustion in me and decided to do more! I never said a word to him about how tired I was, but he KNEW! He is an awesome man.

So yea, you and hubby can do this in the evenings.  That is when we do it.  Only thing is it does take commitment.  It does require space for supplys, but I got to tell you, We hope to never go back in-center.  We started out at home and want to remain there.  Don't give up on the thought of it M.Chick.  Find out more about it, cause like I say, if you learned PD, you can learn hemo at home!

As Amanda said, you will have to do it more frequently, but the more frequent, the better you will feel.  Your husband may have to help you with it at first, but once you both get it down, its just another thing!  It becomes so routine.

I would at least try it and if it doesnt work, then you can always go back to In-center.

God Bless,
lmunchkin

[MommyChick]

That would make it kind of hard for me. My hubby works nights & normally sleeps during the day. Other family members work & have there own busy lives. I don't think it would be to convenient for me.

Home hemo is not for everyone because of the reasons you explained, but you and hubby could still do it.  He could go and train with you and both of you can learn it.  When you get home, you could do the set up and all he would have to do in the evenings is hook you up and when treatment done, he can unhook you. If you have a big thick fistula (Rope) then you are an easy stick like my John.  He cant see very well to stick, plus his fistula is in his right arm and he is right handed.  But he does the setting up of the machine. He has everything ready when I get off work.

When he said he wanted to learn to help me in some way, I was hesitant, but I watched him everyday for a couple weeks, now, he sets it up better than I do.  He knows me better than anyone, and he saw exhaustion in me and decided to do more! I never said a word to him about how tired I was, but he KNEW! He is an awesome man.

So yea, you and hubby can do this in the evenings.  That is when we do it.  Only thing is it does take commitment.  It does require space for supplys, but I got to tell you, We hope to never go back in-center.  We started out at home and want to remain there.  Don't give up on the thought of it M.Chick.  Find out more about it, cause like I say, if you learned PD, you can learn hemo at home!

As Amanda said, you will have to do it more frequently, but the more frequent, the better you will feel.  Your husband may have to help you with it at first, but once you both get it down, its just another thing!  It becomes so routine.

I would at least try it and if it doesnt work, then you can always go back to In-center.

God Bless,
lmunchkin

I'm so used to only doing 3 days a week I know I wouldn't like doing more. I had a hard enough time doing dialysis everyday when I was pregnant. That wore me out! Thinking bout changing makes me very nervous, but it is something to think about.
Thanks everyone 

[lmunchkin]

Its okay, I understand clearly. It does require more time which ends up being better for ya, but like I say, its not for everyone.  Just offered, because you asked about it.  Me, being the advocate for "EVERYTHING AT HOME" just trying to help those who show interest!

I do understand your fears though! Youv'e been dealing with this for a looooonnng time, dear and so young!

God Bless,
lmunchkin

[Home hemo]

Marna,
I realize you have probably decided not to do home hemo, but I did want to correct one thing just for future reference.

As Amanda said, you will have to do it more frequently,

This depends on the type of home hemo.  "Regular" home hemo can look identical to in-center hemo, at 3 times per week, 3-4 hours per time.  My husband did that most of the time he was on IV chemo, so he could keep the chemo in as long as possible. 

When he was taking oral chemo, then he usually did home hemo every-other-day, which is one more day every 2 weeks compared to in-center.  That was the best, since it meant there was never a "Sunday night issue," waiting to see if he had to go to the ER because he couldn't handle going 3 days.  In either case, if he would try to go 3 days, we could be flexible and if he had any trouble, we could just put him on the machine.

Also, you can divide the workload any way you want.  My husband did set up like Imunchkin's.  But he also stuck himself and taped everything down, because I'm the one who gets queasy.  Then I hooked him up, did the paperwork, made adjustments during the run, and did the clean-up after dialysis, when he was usually tired or hungry. 

It was kind of like the folks who have spouses come to dialysis with them and play cards or whatever, except we got to say what time he dialyzed, we got to decide if he could have ice or food, we got to use the computer or TV or whatever, we got to adjust the amount of dialysis according to how he was feeling, etc etc (just a little commercial there!).

[MommyChick]

Thank you all for the imput, I appreciated it 

[M3Riddler]

Pd is not working for me... too much pain and too much puking. just talked to my Dr. and I am headed to Hemo. They will be putting in a line in my neck within the next 2 weeks and then I'll have the lines put in my arms after that. I am really dreading this move. I watched my mom and my uncle suffer on hemo for 15 years and now I'm headed there. At least with PD I thought i could have some sort of normal life... now I'll be married to the hospital and some damn machine to keep me alive.  Hubby says we'll get through it... I'm not so sure.
how bad is "home hemo" ?

nanadar,

In my opinion, they are planning backwards... you should try to avoid any access in your neck if possible to preserve those spots for later down the road if needed.  This is the easy way out.  Yes, chances are if you cannot be on PD for that much longer it will lead to that, but if you are waiting two weeks, then they should also be working you up for a fistula during that time.  It takes time for a fistula to mature, so there may be no getting around it, but if if was known for a while that you would eventually be switching, they could have been doing the workup for the fistula.  It takes approx 2-5 months depending on your veins to mature.
 If they say your veins are too small for a fistula and want to put in a graft, I would ask for details on the size of your veins.  Many US surgeons just dont like working with veins/artery smaller than 4mm because it is much easier for them to work with a larter vein/artery than trying to create a natural fistula with smaller veins.  This also contributes to their success level. 
When they do the workup for the fistula, make sure they look at both arms and legs.  Ask the vascular surgeon when you see him what size veins/artery he likes to work with before placing the synthetic graft.
Grafts are much easier for the doctor, but not necessarily better for you as for the most part do not last nearly as long as a good fistula.
If he does not like working with smaller veins/artery, you may want to get a second opinion from a different surgeon with no affiliation to the current.   A second opinion never hurts....   Not to say this is going to happen, just a suggestion from personal experience.  I encourage you to read this article ( including power point presentation)   This article is sad but true for many ( not all ) American Vascular Surgeons.   

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/fistula-first-american-surgeons-are-still-last.html

[M3Riddler]

Pd is not working for me... too much pain and too much puking. just talked to my Dr. and I am headed to Hemo. They will be putting in a line in my neck within the next 2 weeks and then I'll have the lines put in my arms after that. I am really dreading this move. I watched my mom and my uncle suffer on hemo for 15 years and now I'm headed there. At least with PD I thought i could have some sort of normal life... now I'll be married to the hospital and some damn machine to keep me alive.  Hubby says we'll get through it... I'm not so sure.
how bad is "home hemo" ?

Quote from: nanadar on July 19, 2012, 01:26:49 PM
Pd is not working for me... too much pain and too much puking. just talked to my Dr. and I am headed to Hemo. They will be putting in a line in my neck within the next 2 weeks and then I'll have the lines put in my arms after that. I am really dreading this move. I watched my mom and my uncle suffer on hemo for 15 years and now I'm headed there. At least with PD I thought i could have some sort of normal life... now I'll be married to the hospital and some damn machine to keep me alive.  Hubby says we'll get through it... I'm not so sure.
how bad is "home hemo" ?



nanadar,

In my opinion, they are planning backwards... you should try to avoid any access in your neck if possible to preserve those spots for later down the road if needed.  This is the easy way out.  Yes, chances are if you cannot be on PD for that much longer it will lead to that, but if you are waiting two weeks, then they should also be working you up for a fistula during that time.  It takes time for a fistula to mature, so there may be no getting around it, but if if was known for a while that you would eventually be switching, they could have been doing the workup for the fistula.  It takes approx 2-5 months depending on your veins to mature.
 If they say your veins are too small for a fistula and want to put in a graft, I would ask for details on the size of your veins.  Many US surgeons just dont like working with veins/artery smaller than 4mm because it is much easier for them to work with a larter vein/artery than trying to create a natural fistula with smaller veins.  This also contributes to their success level. 
When they do the workup for the fistula, make sure they look at both arms and legs.  Ask the vascular surgeon when you see him what size veins/artery he likes to work with before placing the synthetic graft.
Grafts are much easier for the doctor, but not necessarily better for you as for the most part do not last nearly as long as a good fistula.
If he does not like working with smaller veins/artery, you may want to get a second opinion from a different surgeon with no affiliation to the current.   A second opinion never hurts....   Not to say this is going to happen, just a suggestion from personal experience.  I encourage you to read this article ( including power point presentation)   This article is sad but true for many ( not all ) American Vascular Surgeons. 

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/fistula-first-american-surgeons-are-still-last.html 


The docs should be informing you about all dialysis options available.... in-center AND Home Hemo and with the information, you should make an educated decision.  If they do not offer a certain type of hemo dialysis, then they still must inform you of any centers around you that do offer it and let you decide and not just place you in-center.    Education is key.. Dont wait for them to tell you, but rather learn and educate yourself and ask...
You are your best advocate..

///M3Riddler

[nanadar]

well I've been on Hemo for a week and a 1/2 now. I'm happy to report that all the pain has disappeared and I am finally feeling better. I accomplished 3 things today.... which in my world is HUGE.  We are on the waiting list for home hemo. I have a central line for now and will get fistulas in my arm in sept. ( there's a waiting list apparently)  I'm hoping to be transfered to the hospital that is closer to home than the one I'm at. It's $60.00 by cab every time I go.... yikes. hubby doesn't drive so I'm on my own to get there and back. So far i am feeling better and last night I drove myself there and back. That 45 minute drive home at 11:00 pm is brutal.  But so far so good.  I'm wanting home hemo but the thought of sticking my self with a needle is a fear I'll have to overcome. LOL ( I'm just a wuss for that kind of thing LOL )  I am catching up on a lot of reading though and my unit has individual TV sets so I can watch the 6:00 pm news so it's ok. Hubby says he might have to buy me an I Pad. LOL
Thanks for all the support.
best wishes to all, you are a wealth of information. I love you guys.
TTFN Darlene


" don't play leap frog with unicorns"

[MaryD]

It's really good news to hear you are feeling better on HD   

[Home hemo]

I'm wanting home hemo but the thought of sticking my self with a needle is a fear I'll have to overcome. LOL ( I'm just a wuss for that kind of thing LOL ) 

My husband never liked the sticks.  I suppose no one does.  But he didn't like getting stuck at the center, either.  At home, he could bite on a rubber kitchen spatula and endure those few minutes, moan and groan if he wanted to, and he could then enjoy freedom for the rest of the hours.

If you can afford an iPad or laptop, I'd encourage you to go ahead.  In the long run, there will be lots of times it's handy.  Dialysis patients spend a lot of time in centers, in hospitals, etc.  Anything that lifts your spirits is worth its weight in gold.

[amanda100wilson]

 really recommend an iPad or other tablet.  so much smaller than a lap top and really sits on your lap nicely.