My Dad

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Hines Posted: 06-25-2010 10:49 PM

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Hiya

My dad is 57 years old has been poorly or 28 years when he was diagnosed with Pulmonary Sarcoidosis. For the duration of that time he has been able to control his condition. He has always been in and out of hospital withvarious infections but he always seemed to bounce back. He may not hae been able to do thigs that other dads do but me and my sister didnt miss ou my parents always made sure we did things as a family just not 'active' things.

He has been on home oxygen for 25 years as and when he needed it until last year when his condition got worse. He is now dependent on 15litres of oxygen 24 hours a day and i wheelchair bound. Due to the limitation of portabe oxygen cylinders we dont get out with him much. I am shocked how quickly this disease has disabled my dad in a year and it upsets me  and my family every day.

We were officially placed on the double lung transplant list last week but we also have been told that he is in need of the transplant now as he is almost too ill to stay on the active list. We as a family are over the moon that he is on the list but we are also constantly aware that at anytime he can be taken off th list.

I am just wondring if we are lucky enugh to recieve the transplant what is it like?  Has nybody had a family member go through a double lung transplant who suffered with Pulmonary Sarcoidosis? I am normally the strong one in my family but this is really getting to me and I am scared of wat going to happen.

If anyone ha been throuhg this yoiur feedback would be greatly appreciated.

Thanks

Kirsty Hines

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rita replied on 06-26-2010 11:33 PM

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Hello Kirsty

So sorry to hear about your Dad.  Unfortunately I cannot help you regarding a transplant and would suggest you ring the helpline during the week as June has mentioned.  There is a lot of help and information available and hopefully someone else will pick up on your post and be able to help you further.  You could also ask the consultant who put you on the active list if they have a patient who has been through it and might be be prepared to talk to you?  Just a thought.

Yes there are ways you can take your Dad out with you providing your doctor agrees; as June says, there are liquid oxygen possibilities if he can tolerate this kind of oxygen ( I couldn't!!) and also bottled oxygen which can also last a number of hours.  These latter tanks can be heavier but come with a bag so you can attach it to the back of his wheelchair.  However you can only be referred to a provider for this by either the doctor or whoever deals with his oxygen so you really need to speak to them directly.

I am on 2 litres of home oxygen 16 hours per day but do go out and about quite as much as I can with it  and I take more than one tank with me in the car in case I get into a mad "retail" mode.  It does give me much more freedom and better quality of life. 

I do so hope your Dad gets his transplant but do keep us updated.  My thoughts are with you

Rita

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jules1985 replied on 07-28-2010 10:23 AM

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Hi Kirsty,

I also posted a comment on here about my dad. He is 59 years old and is 60 in October so he needs to get onto the list before then. Which is is not. He has Pulmanory Fibrosis (another lung disease) and he is also bed/wheelchair bound, and at the moment he has recently increased his oxygen levels to 6 ltrs per minute.

I cannot offer too much advice, apart from my dad has the portable oxygen tanks that are smaller, but they don't allow for as much time out as the normal sized concentrators.

I wanted to ask you though - my dad hasn;t had the four day consultation where he goes through a series of tests which I presume your dad did?

At a=what stage did your dad get put on the list? I mean with regards to the amount of oxygen he was on?

My dad doesn't need as much, but is also bound to his bed at the moment, so the docs had hinted at the fact that it looks unlikely he will be put on the list...I think this can change depending on his general well-being, but im not sure this will improce much more.

It is so frustrating that the only sure to this lung disease is a transplant, and its in the doctors power to make that decision for us.

I think you'll feel the same when I say that it's so hard seeing your dad get in this condition so quickly.

I want to know how long docs expect patients like our dads, have left to live if they don't get the transplant.

do you know how much litres per minute you can go up to with regards to oxygen levels? can it go up to 20 ltrs per minute?

thanks