Hello Wife and Caretaker Hemo Dialysis at Home

[guffynana]

  Hello everyone I am Debbie my husband is Jim. We are on our (well his) second go round of dialysis. I feel like I am getting it right in there with him. We just finished training for Hemo at Home, and started with the NextStage equipment. We came home to do our first treatments and the PureFlo died. I am making a batch right now and hoping the new machine that came today works. Wish me luck!!!!!!!  Jim first got dialysis in 2003 when he coded 3 times and was in ICU for about 2 weeks. Then he went on it in 2005 for about a year. His kidneys started functioning again and Dr. Toma (the best Neph there is) took him off because it was making him sicker. He did great until Spring 09 when he got a Charokoes foot and the pain caused him to throw up a lot he got dehydrated and his kidneys went south again. He has been on since then. We started looking at Hemo at Home about 6 months ago because they kept taking so much fluid off and making him sick. Doc tried to wean him off again but it didnt work this time. So now here we are. I have done 2 treatments at home, the first day I was suppose to have the nurse help me but the weather was so bad she couldnt get here. We are in Oklahoma and have been having horrid weather and in the middle of another bad snow storm now. SO!!!!!!! I am hoping the PureFlo works good tonight and we will do a treatment tomorrow. My husband is 66 and has other health issues but all seem to be doing really good right now. He is doing great so far with the tx at home. He was always so washed out, and frequently threw up after treatment. Now he is great and since I control how much is taken off he wont be having too much fluid taken off, so hopefully he will be better on this. He sure likes it much better. It is a hard hard road to watch your loved one go through this. I had surgery Nov 23 2010, a gastric bypass. He came to the hospital and stayed with me 2 days of the 4 I was there. I am much younger than him and I was worried to death about him, but we have a wonderful aid who comes out and takes care of him on a daily basis. She brought him to the hospital and took care of our 4 year old while I was there. We have been married over 20 years. I don't know what I will do when the day comes he goes home to our Lord, but today I don't worry about that. I just make sure he gets the best care possible. I have no problem raising cain with the docs or VA to make sure he gets the treatment best for him. I have college degrees in psychology but trust me sometimes I feel more like the doc than the doc because they are not around him all the time. I am so glad to find this site because dialysis is a tough road. I have given my husband the choice and opportunity to quit when it became so difficult. He said I don't have a choice if I want life. So that is how we look at it. It is a lifeline for us as I guess it is for everyone on it and their loved ones. I wish everyone on here blessings and wonderful wishes for life.

[BillSharp]

Hello GuffyNana,

We tried home hemo on NxStage equipment for 6 months. Had to stop because I had several bouts of severe low BP (60/30). Really scared my wife. Now I'm doing in-center and am on transplant waiting list. I think most of us look at any form of dialysis as the lifeline. Without it we would die.

I've had severe health problems since I was age 14 and next week I'll be 72, and I've often said this ill health business is harder on the care-giver then on the patient. So keep up the good work. We're all behind both of you.

[tyefly]

Hello and Welcome....  I do Home Hemo with Nxstage ... I have been doing this for  a year now..... I really like home hemo  and  I feel that I am doing much better home than in -center where I was much more sicker..... cramps ,,., washed out feeling....  I dont have any problems with BP at all.... In center   much more....

Anyway ...... Welcome.... looking forward to getting to know you ....

[guffynana]

Hi thanks. we love the nextstage and tonight our batch actually made in the pureflo. I was so excited I could have done a little dance LOL. We really like the home hemo too. My husband is more himself, and is so much less sick. well actually not sick or washed out at all. I look forward to getting to know yalll too. Thanks and have a great day.

[guffynana]

Hello GuffyNana,

We tried home hemo on NxStage equipment for 6 months. Had to stop because I had several bouts of severe low BP (60/30). Really scared my wife. Now I'm doing in-center and am on transplant waiting list. I think most of us look at any form of dialysis as the lifeline. Without it we would die.

I've had severe health problems since I was age 14 and next week I'll be 72, and I've often said this ill health business is harder on the care-giver then on the patient. So keep up the good work. We're all behind both of you.

Im sorry the at home hemo did not work for you. I understand it can be easier, but if your in a good center it can be a good thing too. That is awesome I hope your transplant comes through quickly for you. It is harder on the caregiver than the patient quite frequently, they frequently die sooner than the patient because it is so much stress on them. I try to just roll with the flo and I dont get to crazy  with things unless.............. someone a doc or nurse tries to treat him bad. Then its Katy bar the door. I hope our at home continues to work. It will be a breeze now with the pureflo I hope. Gods blessings to you

[boswife]

hello and welcome    Im wife to Bo, and he's the D person in our family.  We too are at home with nxStage for just one month now.  It's so good to see how comfortable you are already.  I think the 'process' of it all is quite doable, but my personal scardiecat self made a huge deal out of it  . It has really gone super smooth for us, but our first batch had a 'pump failure' and we too had to wait for a day to get started with pureflow, so used bags at first.  Hubby is also 67 but im bumpen 60 myself so we are pretty close in that    Well, i wish YOU and yours blessings as well, and will love hearing of your experiences...  All the best to ya 

[guffynana]

Hey wife to Bo. Yep I came home all excited to do the at home tx and the pureflo failed me LOL. I wasnt a happy camper with it. LOL. BUT the treatment is now finishing in about 10 minutes and it has ran great. NO PROBLEMS at all, so I'm great with it. I think it will make it much easier on him and me. The bags are a pain to me. My friend built me a stand for the pureflow and cycler so I did not have to be bending over to work it. I just had major surgery in Nov and it was a hassle bending down. It is awesome EXCEPT when I go to use bags. Because it is higher the bags are higher, too high for them to be convenient. So the pureflo is what I am counting on. I was terrified of the needles in the begining, that was my personal scardicat LOL. I literally almost passed out the first time I held the needles. But since the 3rd day of training I have been comfortable with them, in fact it is the easiest part for me. We'll get it down and it will make our life and our husbands life a lot easier. My husband has looked better since we have been doing it this way than he has the entire dialysis path. Does your hubby gain much weight in between? We have only been taking off 1 liter from Jim, because otherwise it is too much. He still has some kidney function so he gets rid off a lot what would be water weight then. Ok should be beeping any second. Awesome to meet you on here, it is always great to be in contact with someone in the same position as yourself. I think it makes it go much easier. I just had a gastric bypass weight loss surgery and my greatest support has been that of a couple of people who have also had the surgery. So I am glad to be in contact on here with another wife. Have an awesome day and God bless. I am glad it all working good for you guys too. Debbie

[Rerun]

Hi Guffy and welcome to IHD.  I'm so glad you found us.  It sounds like you two are doing great.  I don't do home Hemo.  I tried it about 25 years ago and didn't like it .... I'm sure things are better by now.  I may have to look into it again.

Keep it here on IHD. Com !!!

Rerun, Moderator          

[guffynana]

Hi Guffy and welcome to IHD.  I'm so glad you found us.  It sounds like you two are doing great.  I don't do home Hemo.  I tried it about 25 years ago and didn't like it .... I'm sure things are better by now.  I may have to look into it again.

Keep it here on IHD. Com !!!

Rerun, Moderator          

Hi Rerun, I am really glad we found you guys too. Yep we are doing great, of course we have a wonderful nurse who is there anytime I need to call her and will walk me through it. I would so suggest you trying it out again. I cannot even begin to imagine the differences/changes in Home Hemo in the last 25 years. I didn't even know they did it until about a year ago when I found it accidently. It has already made a huge difference in our life and it is so so so so much easier on my husband. The treatements are for some reason so much easier. You go by your weight and decide how much to pull off. I cant tell you how much easier it has made it for him. Good luck in all of it I hope it works for what is best for you. God bless.

[looneytunes]

Hello Guffynana and welcome to IHD.  I also am a caregiver to my hubby and we are working on 1 year for NxStage at home. 

I love your bubbly spirit and am looking forward to getting to know you.  Glad you joined! 

[rocker]

 

Another caregiver here, 1.5 years on NxStage and counting...

He does so much better on home D, and we can travel at a moment's notice without the hassle of arranging for guest dialysis.

 - rocker

[paris]

Welcome Guffynana.  We are so glad you found us.  This site made a huge difference for me. Knowledge and experience were the two things the members gave me.  I found more answers and compassion here than any office I visited.  It sounds like you are on top of things and are a great advocate for your husband.  You are going to fit right in here       Welcome to IHD   



paris, Moderator