Home-Hemo Caregiver Member

[willieandwinnie]

Hi Everyone
My name is Kathy and I have been doing my husband's dialysis at home for 3 years now. My husband (Len) became serious ill in 2001 and spent over 6 months and had about 21 operations, in two different hospitals. He developed septic shock and all his organs started to fail, he died on me a couple of times. From my post you know his kidneys couldn't recover. The Nephrologist at Washington Hospital Center had to threaten the dialysis center in our area with calling insurance and Medicare in order for them to accept my husband as a patient. They claimed he was too critically ill for them to take. He came home from the hospital on December 1, 2001 and weight 115 pounds, (down from 160). I had a home nurse for a short period of time, to teach me how to do the small bowel feeding tube, TPN, and his abdominal wound care. I can report that he no longer has feeding tube, TPN and finally after 4 and half years they closed he’s wound. Our clinic never informed us that home dialysis was an option, I read about the NxStage machine out in the waiting room one day and came out and ask the Nephrologist about it in December and by February of 2003 we started our training and started in our home the first of April 2003. We use the Fresenius 2008H and have the RO stuffed in a closet. We lost 2-hallway closet to storage, had to have a plumber and electrician come do some work. I can say that my husband has benefited from this greatly but I can understand the other caregiver’s remarks about no time off. I honestly, have had no time off in 5 years now. My husband does feel guilty about it, but what are you going to do, FOR BETTER OR WORSE. Thanks for letting me vent.

[Sara]

Just wanted to say welcome and offer a big HUG to you, Kathy.  My name is Sara, my husband Joe is just starting out on dialysis (well, since January) and I'm trying to help him all I can.  I'd love to hear more about your (you and Len) story when you get a chance to post more.

[Rerun]

Welcome Kathy.  You've had some interesting times to say the least.  Feel free to vent here.  It is for patients and their families.  We all need to bitch once in a while.  But, there is a lot to learn on here too and we're proud of that.   

[Bajanne]

I was deeply moved by your story.  To me it is a story of survival, something that resonates with me.  It is great that you obviously do not have a bit of giving-up in you!  Keep on!  I am very proud of you both.   As the others said, this is a wonderful site, with lots to learn, caring and knowlegeable people (with a few crazy ones thrown in for good measure), and an open invitation to vent!!

[Epoman]

Hi Everyone
My name is Kathy and I have been doing my husband's dialysis at home for 3 years now. My husband (Len) became serious ill in 2001 and spent over 6 months and had about 21 operations, in two different hospitals. He developed septic shock and all his organs started to fail, he died on me a couple of times. From my post you know his kidneys couldn't recover. The Nephrologist at Washington Hospital Center had to threaten the dialysis center in our area with calling insurance and Medicare in order for them to accept my husband as a patient. They claimed he was too critically ill for them to take. He came home from the hospital on December 1, 2001 and weight 115 pounds, (down from 160). I had a home nurse for a short period of time, to teach me how to do the small bowel feeding tube, TPN, and his abdominal wound care. I can report that he no longer has feeding tube, TPN and finally after 4 and half years they closed he’s wound. Our clinic never informed us that home dialysis was an option, I read about the NxStage machine out in the waiting room one day and came out and ask the Nephrologist about it in December and by February of 2003 we started our training and started in our home the first of April 2003. We use the Fresenius 2008H and have the RO stuffed in a closet. We lost 2-hallway closet to storage, had to have a plumber and electrician come do some work. I can say that my husband has benefited from this greatly but I can understand the other caregiver’s remarks about no time off. I honestly, have had no time off in 5 years now. My husband does feel guilty about it, but what are you going to do, FOR BETTER OR WORSE. Thanks for letting me vent.

Hello "Kathy" welcome to the site, It sounds like you have had a hard time but I commend you for sticking it out with "Len" and being a very supportive wife. Feel free to come here and vent as often as you want. Also tell "Len" to come and post too. Again welcome to the site.

- Epoman
Owner/Admin

[Naggy6]

kathy

I just have to say God Love You for what you do for your husband. I know some people would think well what else would you do? Well there are people out there that despite the fact that they say they love their spouse would not do what you do.

I have been very fortun-et as my husband has taken darn good care of me. After my last transplant I went through some pretty bad times and he took care of me. Let me just say he did things for me that I never imagined I would need any one to do for me, at least not for a long, long time.

I have siblings that would not do even a fraction of what he did. I'm lucky if they even visit me never mind help me.

[kitkatz]

You have been  bumped from the last page to the first page. 

[annabanana]

Wow, Kathy. I am very impressed with you! Len is very lucky. It's good you were bumped to the 1st page.
A.

[petey]

Hey, willieandwinnie!
I searched for this thread about two months ago and found it wayyyyyyyyy in the back!  So glad you got bumped because I got to read about you and Len again -- which always makes me feel less alone.

How is Len doing today?

[okarol]

I never got to  you both so here's a big    and a    a    for you guys!

[MyssAnne]

Kathy, I never got to welcome you either, so here goes!!! 

How's Len doing lately? 

[willieandwinnie]

kitkatz, why did you   me. I was staying back there minding my own business. I just love this   It's great. kitkatz, really thanks for bumping me up, it will give the newbies a chance to read about Len and I, and hopefully inspire other caregivers.  

annabanana, thanks. Len will tell you he is pretty lucky. He has said more then once that if it hadn't been for me, he would of been dead along time ago.  

petey,   for asking. And you should never feel alone.  I feel like crap.   I was no sooner getting over that flu bug and I had to take Len to GP yesterday afternoon to get them to rewrite he's blood draw prescription and wouldn't you know it, the Doctors nurse (Kathy) was sick as a dog with head cold or respiratory something and just my damn luck, this afternoon my thoart hurts and my nose is acting twitchy. I'd like to ring her neck,   she knows what Len has been through. It just drives me crazy.   Len is okay, he hasn't been sleeping well and his stomach is still acting tender. God, will I be glad when spring gets here. They have us under a severe thunderstorm watch today and Len has become a worry wart (don't know when that happen), he didn't use to be.

How's my buddy Marvin doing? How is being back at school full-time going? Are you pooped when you get home? Thinking about you.

[willieandwinnie]

  You guys are just too sweet. 

[petey]

Oh, no -- w&w -- please don't get sick again!  Here's what I say to that nurse at Len's GP's office --    . (Don't you just love this new icon??)   Please take care of yourself and hose Len down with disinfectant so he won't get it.  What did the doctor tell Len?

Lord have mercy, I'm pooped!  I had totally forgotten how hard I worked.  My tail is dragging!  I had also forgotten that at school my students call my name 1,000 times!  Every kid in my class has to have my undivided attention all at the same time -- and my biggest class has 29 students in it!  Thank goodness we're out all next week for Easter!

[Slywalker]

willieandwinnie I'm so glad that Okarol bumped you up!!!     It was very interesting reading your story.  Gosh - so many people go through so much and yet we live to tell about it.  That, of course, is the best part - living to tell about it.   

Have a great day!!!

Sandyb

 

[willieandwinnie]

Update.  I joined IHD 2 years ago today and boy have our lives changed. I don't know what I would do without you guys advice and listening to me  . Thank you all. 

[annabanana]

I agree about IHD being a wonderful site.
And, Kathy, your puppy dogs are the cutest dogs I've ever seen!
Love their smiles!
A.

[kitkatz]

Happy two years! 

[Ohio Buckeye]

I'd never seen this intro either so I'm glad it was bumped.
Boy, you 2 have been thorugh a lot.

[rose1999]

I have to own up, for ages I thought you were Willie and Winnie (not Kathy and Len) - after a while I realised it was Len, as you spoke about him, so I thought you were Winnie and Len  - then one day the lightbulb came on and I realised Winnie & Willie are the cute dogs in your avatar 

[del]

Glad to read your post.  I was thinking your names were willie and winnie too until something clicked and I realized the dogs were willie and winnie!!!  I'm a care giver too and might not be any time off but I think it is worth it just to have the freedom of dialyizing at home.  I spent many a worrisome day at school when hubby was driving to center especially when it was snowing or the roads were icy. Only got one fright in the 6 years he was driving.   He always phoned about the same time every morning to let me know that he was at the center. One morning he was about half an hour late and I was starting to panic a little when he finally phoned.  He had gone off the road. The first thing I asked was if he was hurt, then I asked if the personwith him was hurt, then if the car was damaged.  Had to do my priority list!!  Nothing was damaged he was just about an hour late for dialysis. car was just off the side of the road stuck in mud. he started stopping traffic until he got enough people to lift the back of the car and get it back on the road.  So home hemo is worth it just to not have the worry of him having to be on the road in all weathers.