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Original poster

not good news about dh.

120 replies

misdee · 16/02/2005 20:38

the tests arent comepleted yet for transplant assessment but its looking very liekly he will be put on the list. however his kidneys are causing concern. he is out putting more fluid than he is taking in. is now on restricted fluid intake. if his kidney function doesnt get sorted out then he may have to stay in harefield till a heart becomes available. but as dh is tall and low body weight the doc has said it may cause problems in finding a suitable heart for him. but his heart needs to be repalced as its causing the problems for his kidney and liver. far too much to take in, and i;m not sure i'm explaing it properly.

OP posts:
sobernow · 16/02/2005 20:50

This reply has been deleted

Message withdrawn at poster's request.

SenoraPostrophe · 16/02/2005 20:51

You must be going out of your mind, Missdee. i know i would be.

Hope they find something for him soon.

Twiglett · 16/02/2005 20:52

{{{hugs}}} misdee .. you are in my thoughts

NameChangingMancMidlander · 16/02/2005 20:52

You need to get direct & detailed information from DH's specialists before you're equipped to make any decisions. Really feel for you xxx

Original poster
misdee · 16/02/2005 20:53

btw i've no idea about the mechanical heart and how it works, but i know it was devoloped last year at papworth and its a massive breakthrough. dh told me all about it last year and thought it was great. but it would mean carrying around a remote babttery pack 24hrs a day on his his belt loop to power it.

OP posts:
winnie · 16/02/2005 20:54

Misdee,thinking of you all and sending you hugs Winniex

galaxy · 16/02/2005 20:54

Just wanted to send you all good wishes misdee and let you know we're thinking of you here

Snugs · 16/02/2005 20:55

{{{hugs}}} so sorry to hear this misdee.

LGJ · 16/02/2005 20:55

Oh bugger Damn and bullshit

Will try and ring my DH over the weekend and see if he has experience on this. Not him, but a transplantee.

DH ......... meant DU

much love

LGJ

chonky · 16/02/2005 20:56

{{{{{{{hugs}}}}}}}} misdee

Original poster
misdee · 16/02/2005 20:57

thanks LGJ, have u changed your name?

OP posts:
colinsmommy · 16/02/2005 20:58

I was hoping this wasn't you. Sending you hugs and good wishes.

maomao · 16/02/2005 21:00

Thinking of you, misdee

Potty1 · 16/02/2005 21:02

Misdee - sorry to hear this. It is usual to restrict fluids if the heart failure is bad both to reduce the load on the heart and on the kidneys. Is he officially listed now misdee or are you still waiting for confirmation? I don't know much about the LVAD so can't help there, but hope that a decision is made soon.

Yorkiegirl · 16/02/2005 21:02

Message withdrawn

katzguk · 16/02/2005 21:04

hi sorry to here you news, i work in the field of medical materials and will ask at work tomorrow if anyone knows anything about the mechanical heart for you, if not i am happy to a bit of a scientific lit search for you on through the journals i have access to.

JanH · 16/02/2005 21:09

Hugs and best wishes, misdee. You are dealing with this so well. Strength to all of you. XXX

Berries · 16/02/2005 21:10

Misdee, was the mechanical heart something used in conjunction with his own heart, with some sort of pack outside. If so, Isaw (and read) an article about it (prob about a year ago now). They interviewed a 50ish yr old with it, & he said it had made a fantastic difference to quality of life, but also that it kept him going until a transplant could become available. Also read an article (bit hazy here so don't quote me) where they used it on a younger man who had heart failure following a virus & it kept him alive, but also the heart appeared to regenerate(??) so he was actually fitter when it was removed. Will try & find the information if you like. I only noticed it because it related to what had happened to my dad.

Berries · 16/02/2005 21:11

just seen katzguk posts & she is prob better placed to find relevant info. Best wishes

KBear · 16/02/2005 21:11

misdee, thinking of you and DH.

Have you had an opportunity to speak to someone who has been through what you are going through - your fears etc? The reason I ask is that someone I know has had his new heart a year this week. He had a VAD machine before that for some months. This was at Papworth. I know he and his wife were asked if they would share their experiences with others not counselling but a support group. I don't know if it was set up but I could find out and it might help to talk to someone who has been there, done that, so to speak. If you want me to find out details I will, no problem.

best wishes.
x

suedonim · 16/02/2005 21:23

Sorry to hear this, Misdee. You do really well managing to get your head round such an enormous subject, I'm in awe of you. Sending positive thoughts to all of you.

Original poster
misdee · 16/02/2005 21:27

berries i think thats the one he was on about. juts want some good news for a change.

OP posts:
ThomCat · 16/02/2005 21:39

Oh, I'm so sorry misdee, I don't know what else to say. Thinking of you, TC x

ThomCat · 16/02/2005 21:39

Oh, I'm so sorry misdee, I don't know what else to say. Thinking of you, TC x

Original poster
misdee · 16/02/2005 21:44

Potty1, he is still only about halfway through the tests atm, last one should be done friday, and we should know after that whentehr he is on the list. but his doctor feels he is likely to be put on the list. medication hasnt worked depsite dh having a brilliant cardiologist who has been doign everything possible, and we owe dh life to her, she has been excellant and always pressing onto others about his case. feel very angry about the time he spent in hospital b4 xmas at the other hospital as we told them time and time again it was heart failure but they were insistant it was pneumonia/chest infection etc, but his lungs are perfectly clear and show no sign of him ever having pneumonia.

am also very grateful to the last GP who we called out who had worked with dh cardiologist and actually knew who she was and her rep and got dh back into the hospital 3weeks ago. finally felt i wasnt being paranoid and over anxious. wish more medical people knew about heart failure and its side effects and symptoms. feel like we've been educating the local hospital about it. when dh overheard one of the nurses asking if DCM could be caused by a virus i was astounded.

OP posts: