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Old 08-01-14, 11:25 PM   #1
martyfoz
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Default please help

Hi my dad has been diagnosed with hd since 1999 but was symptomatic a while before then. He has of monday night been admitted to hospital with aspiration pneumonia. Doctors are sh#t!! Could anyone please tell me my dads realistic chances of survival. Is this something he can get past & go on for a few more years ?? Please im a big boy & need honest answers i don't need any fake reassuring I want real truthful answers many thanks.
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Old 09-01-14, 12:35 PM   #2
Scooby
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Default Re: please help

Quote:
Originally Posted by martyfoz View Post
Hi my dad has been diagnosed with hd since 1999 but was symptomatic a while before then. He has of monday night been admitted to hospital with aspiration pneumonia. Doctors are sh#t!! Could anyone please tell me my dads realistic chances of survival. Is this something he can get past & go on for a few more years ?? Please im a big boy & need honest answers i don't need any fake reassuring I want real truthful answers many thanks.
Hi, welcome but sorry for the reason your here.
Wow thats a big ask. I honestly don't think anyone can give you an infinitive answer to that and especially as we know so little about your father and the stage he is at.

As you will be aware, everyones HD journey is different in some way.

TBH when the time comes near you will know.

Your father was diagnosed at roughly the same time as my son and daughter, who have the Juvenile form of HD. they were symptomatic for quite some time before being diagnosed as family history was not known.

My son passed away 4 years ago due to (MRSA) and his debilitated JHD status.
My daughter is still with us but has been touch and go for last 4 years too. She is bedridden and I do not beleive she would survive a bout of pneumonia at the stage she is at now.

I think it is well documented that one of the common contributors of death with an HD sufferer is aspiration pneumonia.

I hope this has helped in some way but either way please feel free to come back and ask whatever you wish.

Sue xx
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Old 09-01-14, 12:56 PM   #3
martyfoz
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Default Re: please help

When I wrote that 1st message it was done in a bit of a panic. I'm aware my grandfather died of pneumonia with hd & when I was told that's what my dad had it knocked me I thought it was the end especially after looking on Google. But I am now confident that he'll overcome this & be okay for a while longer. Thanks Sue for your reply I'm sorry to hear about your children. My sister has juvenile hd.
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Old 09-01-14, 09:27 PM   #4
dennisw
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Default Re: please help

Hi Marty
Yes, pneumonia is a serious concern in late stage HD, but compared to your grandad's time antibiotics are so much better.
Our relative while not quite getting to the pnumonia stage was very ill and we thought the time had come. This was two years ago and he is still doing not so bad. It did take three courses of different progressively stronger antibiotics before it was cleared.
Try not to panic and stay focused. Keep a wary eye on what is happening, watch out for dehydration, and do not be frightened to calmly badger away at the doctors and nurses if you are worried. Remember do not get angry with them but get smart. Be polite but firm and if you are at all worried contact the hospital PALS team, explain what is worrying you and ask them to help. PALS is patient advisory and liaison service and they are there for you. Also contact your local Regional Care Advisor, head office on 01513315444 will give you details. Do not wait for a problem contact him or her soon so they will be ready if you need advice or help.
Good that you are there for your Dad.
Best wishes
Dennis
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Old 09-01-14, 10:50 PM   #5
martyfoz
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Default Re: please help

Thanks for replies sorry to hear your son has hd Jacqueline. Great advice Dennis thank you. Although we are unlucky like everyone else on here to have hd in the family we are extremely lucky to be a very very close family. I am a very lucky man to have the most wonderful wife that is so so supportive & 3 amazing kids aged 7,8 &9. My in laws are being amazing unlike my father's side but I won't go into that. My father hasn't been left alone for a minute in hospital my mum spends every night with him & my wife & I spend everyday whilst also swapping care of my sister who has jhd but although very symptomatic luckily not too bad. The most frustrating thing about all this is the lack of knowledge the doctors seem to have about hd. 1 openly said "you seem to know a lot more than me about this illness" which is quite worrying as I certainly don't class myself as an expert. But thanks once again for replies from both myself & my wife.
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Old 10-01-14, 10:20 AM   #6
Scooby
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Default Re: please help

Quote:
Originally Posted by martyfoz View Post
When I wrote that 1st message it was done in a bit of a panic. I'm aware my grandfather died of pneumonia with hd & when I was told that's what my dad had it knocked me I thought it was the end especially after looking on Google. But I am now confident that he'll overcome this & be okay for a while longer. Thanks Sue for your reply I'm sorry to hear about your children. My sister has juvenile hd.
Hi again, I know only too well that feeling of panic and its understandable. Its so important that at times like that you can reach out and have somewhere to go where everyone is or has been in that same situation, as I have done here on many, many occasions and still do when I need to, someone here will offer some practical advice, support or even just some comforting words, it all helps greatly.

I'm sorry to hear that your sister has JHD. My son was 36 when he died and my daughter is now 41 and is quite poorly most of the time these days.

Glad to hear your dad is going to be ok, its good that he has his family and people who care around him.

Take care hun and we're here whenever you want support for any reason.

Sue x
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Old 10-01-14, 08:28 PM   #7
Dolphin
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Default Re: please help

Hi Marty

For what it is worth, because pneumonia was what got my mum, we were expecting her to stop hanging on at some point for about 6 months beforehand.

She really had stopped talking - weighed not much more than a feather - and needed help with absolutely everything - and the hospital bed had been installed at home then.

Having said that, she was responding to antibiotics in hospital before she had another aspiration "incident". If my dad hadn't have been so unwell himself and away in hospital so she had to move into a home with all the new germs and different people to get used to, she may have summoned up the will power to keep going.

So I think it depends a lot on your situation and how strong your dad is and there's nothing like family love to help pull you through. Good luck.

Dolphin

P.S. I lost a work colleague who was in his 30s today - died in his sleep with no warning - at least this terrible disease gives us a hint that we need to live each as if it was our last
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Old 10-01-14, 08:56 PM   #8
dennisw
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Default Re: please help

Hi Marty
Pleased to read you are getting support from wife's family. I am not surprised by your experience with your dad's family. Your wife's family can appreciate your problems and be supportive, but do not have the personal risk that dad's family have. So it becomes a sort of protection by not seeing what is going on. I hope you understand my sort of psychology jumbo jumbo, but it is not at all unusual.
Pleased you find the MB a help.
Dennis
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Old 10-01-14, 09:23 PM   #9
martyfoz
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Default Re: please help

Dolphin I found your post very comforting thankyou. We've had great news today as my dad has come home !! By how you described your mum my dad is prob around same stage although we do get the odd word from him. We are all so glad he's home but are now wondering just how long for before this ****** happens again now he's had it. But we're all going to make the most of him. My children cant wait to see papa tomorrow!! The care he receives at home is second to none my mum really is a special woman! I believe if my dad was in a home he'd prob not be here now.
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Old 10-01-14, 10:04 PM   #10
martyfoz
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Default Re: please help

Dennis I know exactly what you mean. Its the way its always been. We didnt hear anything for years then all of a sudden my auntie became symptomatic & was on phone to my mum then asking for advice. Every 1 of them are so self centred its un believable. Mine & sisters grandmother couldn't even pick up the phone to see what my sister's results were when she was tested & when it became common knowledge she had hd at a very high cag count because it was jhd she still didn't ring. Needless to say I will never speak to that horrible selfish woman ever again. Im just so grateful I have the most amazing wife, inlaws & mother. We are all my dad & sis needs.
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