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OMG dh is being admitted, tonight!!

244 replies

misdee · 27/01/2005 18:14

had to call GP out earlier, gp felt that dh is cardiomyopathy is gettign worse so called dh cardiologist to get an emergency appt with her. she has just called and wants dh admitted NOW! he had a 24hr holter monitor done beginning of the week, and dh was vomiting a lot whilst on it. i have never known him to be called in this quickly.

OP posts:
Kayleigh · 27/01/2005 19:01

Misdee, will be thinking of you and your dh. {{{hug}}}

JakB · 27/01/2005 19:02

Thinking of you misdee {{{{hugs}}}}

LapsedGymJunkie · 27/01/2005 19:28

Misdee

Not sure whether your DH is being seen on the NHS, if so the best bit of advice I was ever given was this. Over your lifetime you and your family will pay to the NHS, a lot more than you would to BUPA or PPP or any of the healthcare providers, so expect/demand (but oh so nicely) answers and results and forward planning.

Go to see the cardiologist armed with questions and bring a pen and paper if you have to.

Cardiologist are amazingly woolly, I had an Ecco recently for Post partum Cardiomyopathy, and the letter to me just said waffle waffle your heart is enlarged waffle waffle and when I saw my GP his more technical version of the letter wasn't much better.

Sorry this is long, but the NHS and their Cardios really wind me up.

Thinking of you, with much love

LGJ

And apologies if you are already doing all of this.

GRMUM · 27/01/2005 19:33

Thinking of you and your family misdee.

misdee · 27/01/2005 19:34

Lasped gym junkie, how scary. post partum cardiomyopathy sounds horrible. have you been told not to have more kids?

dh cardiologist is very good, she has also told him exactly what is going on with regards to is condition. and i like the fact she knows who he is to. if we see her out and about she wil lstop and chat and ask afer him.

just wish this wasnt happenig so close to due date.

OP posts:
Levanna · 27/01/2005 19:42

Thinking of you and yours misdee.
xx

nutcracker · 27/01/2005 19:45

Oh sorry to hear this Misdee, hope you manage to get some things sorted this time xxxxxxxxx

NameChangingMancMidlander · 27/01/2005 19:47

Oh misdee. I've got my fingers crossed for some positive news for your DH. {{{hugs}}}

LapsedGymJunkie · 27/01/2005 19:48

Misdee

Yes, sadly after waiting yearssssssssssss and yearsssssssss for our little miracle. I presented 3 days later with PPCM.

So, no more babies, but DS needs a mummy, so that as they say is pretty much that.

My thoughts and prayers are with you.

misdee · 27/01/2005 19:51

that is scary. vinnie jones' wife also had PPCM. are you on medication?

OP posts:
LapsedGymJunkie · 27/01/2005 20:08

Most definitely

Go to the gym 3 days a week religously and that seems to keep it all at bay.

More worried about you my love.

misdee · 27/01/2005 20:09

its been almost 3years, in some way i am used to it. i am relieved they are doing something. tho waiting for the phone to ring is killing me. am hoping this will push thro his referral to harefield as well for transplant assessment.

OP posts:
LapsedGymJunkie · 27/01/2005 20:20

For what is worth. my uncle had a HT at 60 odd.

He is doing really well and yes at his age he may be life limited to a certain extent.

But on my next post to you I will post his story I have removed anything that could identify him as he is not famous but it is not for me to plaster his name all over MN . Hope you understand. {{{{{{ Hugs}}}}}}

sallystrawberry · 27/01/2005 20:21

This reply has been deleted

Message withdrawn at poster's request.

PicadillyCircus · 27/01/2005 20:23

Thinking of you misdee

kernowcat · 27/01/2005 20:25

{{{{{{{{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}

KBear · 27/01/2005 20:27

thinking of you too misdee - take care of yourself too.

lockets · 27/01/2005 20:28

This reply has been deleted

Message withdrawn

happymerryberries · 27/01/2005 20:28

Hope that everything goes well for you all, sending hugs and best wishes

coppertop · 27/01/2005 20:29

Wishing you and dh the very best of luck, Misdee. xxx

LapsedGymJunkie · 27/01/2005 20:33

A second chance...

During the Christmas of 1995, X felt run down and thought he had caught the flu. Within three weeks he was told he would need a new heart.

While many factors can affect the health of the heart, from diet to smoking, X is proof that anyone may one day need a transplant, irrespective of their lifestyle.

"I was in my late 50s, I never had a heart problem in my life. I hadn't smoked in 25 years. I contracted a virus called cardiomyopathy, a virus that attacks the muscle of the heart",

In fact he had a normal, healthy lifestyle with his wife and two adult sons. He was working full-time with ..........

However, he recalls that he had been feeling run down for a few months, but when that fateful Christmas came around he assumed he had the flu, as his wife had been in bed with it the week before. Early in the New Year, he started experiencing severe bouts of breathlessness. One Sunday afternoon, around two weeks into January, he was having such difficulty breathing, his wife had to call an ambulance.

"I was brought into hospital with what later transpired to be serious heart failure. And some two or three days later, having undergone various tests in the hospital, I was told that I would need a new heart."

As X had been working full-time up to that point, he found this difficult to come to terms with, moving from a situation where he was fit and well and to being told he needed a heart transplant. "That was something that took a bit of getting your head around," he said.

However X says that from the outset, he was optimistic. "You realise that hospitals are full of people who will never get a second chance, and there I am, very ill, but I've got some hope that a second chance will occur. And as one of the nurses in the ward said, the right attitude is as good as any drugs that they can give you."

While X waited for a new heart, he had to lead what doctors call a "sedentary lifestyle". This meant absolutely no strenuous activity or exercise and no driving. He wasn't even allowed take part in one of his favourite activities, golf. For someone who had come from a busy industry, this sudden change of lifestyle proved difficult.

"I sat in this chair here and I watched that bloody television!"

Then in March, a call came to say a heart was available. X was "worked up" for the operation, which means he went through all the pre-operation preparation. While he was waiting in the room next to the operating theatre, he discovered that the donor heart he was supposed to get was diseased and so was unusable. Again he remained optimistic.

"While it was a great disappointment, at the end of the day, there is no sense in replacing one dodgy old heart with another one that's not right. But at no stage did I ever despair over it. Maybe that's being stupidly optimistic, but that's the way I was."

After this setback, X had to continue with his sedentary lifestyle. He had a beeper to alert him if a heart became available, and describes this time as "greatly worrying" for his family. However, he was determined that they should not become preoccupied with his health.

"My wife got on with her everyday life, and my two boys got on with their lives. One was still living with us, the other had already moved out. But they did whatever they had to do. My wife went to her bridge at night and I was quite happy to see her going out. I didn't want her sitting in here looking at me, watching every move, listening to every noise, every strange sound out of me. And certainly the normality helped greatly."

Finally in August, around eight months after he was first told he would need a new heart, the call came. At around lunchtime, while having a snack with his wife, the transplant co-ordinator from the Hospital rang. X asked her if she wanted to see him, to which she answered, "Yes, get yourself over here as quickly as you can".

X described himself as "quite calm" when the call came. He and his wife made their way to the Hospital. They arrived at around 3.00 in the afternoon, and the operation took place at 9pm that night. The operation took 4-5 hours.

X woke up at around 11am the next morning. He saw his wife looking at him through the glass partition in the intensive care unit. He made a thumbs up gesture to see if the operation had gone OK. When his wife nodded her head to say yes, he turned around and went back to sleep!

X spent a total of five-and-a-half weeks in hospital. However within 10 days he was up and about "getting used to having my legs again".

Now he participates in a rehabilitation programme twice a week in the Hospital, which entails a general workout.

"You are asked to acknowledge the incredible second chance you got by maintaining a lifestyle that commits to a fitness level and a low-fat diet. It's the second time around, so for God's sake, look after your body".

Today X describes his life as "perfectly and utterly normal". The only difference is that he is has retired from work. But this does not mean that he is slowing down. In fact, he is involved with work of a different kind. He is now chairman of the Transplant Association, a voluntary organisation with two primary aims; the first is donor awareness, the second is providing support for heart transplant recipients and their families.

"That involves a lot of running around and organisation and correspondence and dealing with people."

If someone needs a heart transplant, members of the association are available to talk to them both before and after the operation. X believes this is hugely important for transplant recipients.

"They can see someone who has gone through the procedure, and can see them up and about, and enjoying a pint, and playing golf, and everything else. The encouragement they get from that is immense."
X obviously feels very passionately about organ donation. He believes the need for organ transplantation has no class, gender or age barriers. "People have to realise it can happen to them."

While he encourages everybody to carry a donor card, he believes this is not enough. "More important than carrying the card is to discuss within the family what your wishes are, because in the event of an accident, permission still has to be obtained from the next-of-kin. I know what my sons? wishes are if they were, God forbid, involved in a car crash or any sort of an accident. It makes the decision, at a time of great personal grief, that much easier to make."

X doesn't know anything about the donor of the heart he received. "I think about it every day. Not a day goes by that you don't think about your donor and their family, not one day. Because every day you get up and say thank God for my second chance. And you have a second chance because some family at a terrible moment in their own grief and sadness made an incredibly loving decision to donate their loved one's organs.

"To make that decision of such incredible compassion at a time when they are suffering so much themselves, it's just mind bending to get your head around."

pootlepod · 27/01/2005 20:42

Fascinating story LGJ.

Thinking of you and your family Misdee.

sobernow · 27/01/2005 20:43

This reply has been deleted

Message withdrawn at poster's request.

Blossomhill · 27/01/2005 20:46

Misdee sending hugs your way. (((xxx)))

Hulababy · 27/01/2005 20:56

(((hugs))) misdee

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