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what do we do now |
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Peter G 
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Joined: 02-December-2007 Location: United Kingdom Posts: 32 |
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 Topic: what do we do nowPosted: 22-July-2010 at 7:48pm |
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My Daughter was diagnosed in 2007 with IPAH and treated at Great Ormond St. She is on bosentan. sildanafil and flolan. We was waiting and having test for a transplant, well today we received the call that she is not suitable for a transplant as she would not get through the operation. this is combined problem including hole in the heart and 85% anti-bodies. So what do we do now and what do I tell her she is 17 so old enough to understand but so am I and I still do not understand
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Jack
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Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
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Posted: 22-July-2010 at 8:12pm |
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I am very sorry to hear your news.Its a hard question to answer.Firstly I would tell her the truth that she is not fit enough to have the transplant. i think with anyone especially the young it makes things harder for them if you seek to hide the truth from them.I think people deserve others to be honest with them.At the same time I think you also always have to leave people with hope. One thing I have learned with this illness is that you can never predict outcomes. Some people defy predictions and go on and on. One person on this site as had the illness for twenty two years. You just have to try to inspire your daughter to keep fighting and try to convince her that the longer she stays alive the more chance she has of surviving and living along life because of the advances the medical people are making in the treatment of the illness all the time.
I don`t envy your task and my heart goes out to you but just hang onto hope and don`t give up.None of us on this site ever do that. We will all keep on fighting to its impossible to fight anymore.Good luck and keep us informed about how you daughter is getting on. |
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Today may have been bad but tomorrow could be a whole lot better.
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susanna
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Joined: 12-March-2009 Location: Herefordshire Posts: 191 |
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Posted: 22-July-2010 at 9:03pm |
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Peter - my heart goes out to you with such a ghastly decision to make and how do you have this conversation with your daughter - As she is 17, as you say she is old enough to understand what you are
saying - have they talked to her at GOSH? I write this also as a parent of a now, 27 year old daughter, (diagnosed 18 months ago with IPAH) and a conversation no parent ever wants to have to deal with - but young adults (as I think we must call them!) are very intelligent and you cannot hide the truth that perhaps after all she is not fit enough for a transplant - but see what other medications she might be able to go on to help her - I am sure you should both be able to have help with this issue from GOSH. All I can say is my thoughts are with you and your family - please pm me if I can help/support in any way. (I am not sure if I have offered much help - so hard to put thoughts into words) Susanna
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karen
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Joined: 22-November-2004 Location: United Kingdom Posts: 2299 |
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Posted: 22-July-2010 at 10:11pm |
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I have sent you a pm Peter
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Peter G
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Joined: 02-December-2007 Location: United Kingdom Posts: 32 |
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Posted: 23-July-2010 at 12:48am |
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Thanks for all your comments and Karen thanks for the pm. We have told our daughter about the transplant situation and she is like us where do we go from here. I am even considering trying to get stem cell treatment privately I mean what have we to lose
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karen
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Joined: 22-November-2004 Location: United Kingdom Posts: 2299 |
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Posted: 23-July-2010 at 12:51am |
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the stem cell treatment is very expensive. have a chat to you ph team.
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whitewitchy
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Joined: 25-March-2010 Location: Amersham Bucks Posts: 129 |
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Posted: 23-July-2010 at 12:56am |
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firstly, Hi Peter, I wish you strength to talk with your daughter xxxxxxxxxxxxx
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((((((((love and hugs forever)))))))))xxxx Stella
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Miriam
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Joined: 20-March-2006 Location: United Kingdom Posts: 2872 |
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Posted: 23-July-2010 at 10:06am |
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Well, Peter, in situations like these, my heart goes out to you, your daughter and your family and words really fail me.
I have looked into the stem cell treatment quite closely. It is expensive, has to be done abroad, your specialist consultant has to agree to do pre and post testing and observation, and it may not even work. It's all very experimental still.
However, I personally believe that it is the last available option when all else fails. As far as I can see, all you have to lose is money.
If you look towards the top of the page on the topics of PH Related...., then you'll see Stem Cells. This includes lots of discussion, links, etc.
I can tell you that one American did it and improved but then again, we haven't heard from him in a long while so don't know what the situation is. Also someone from this site has it done but I have no idea how she's doing now. (Does anyone?)
I wish you well and hope that somewhere along the line someone will have a brainwave and your daughter will improve. Treasure each moment together.
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Laugh, Love, Live
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Rita Barnard
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Joined: 26-November-2004 Location: Wales Posts: 775 |
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Posted: 23-July-2010 at 10:19am |
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Oh dear what a nightmare and my heart goes out to you.I think in the situation
you all need to have a talk to the specialist at GOSH,who will no doubt, give you
guidance.I wish you all the strength to get you through this situation, best wishes
to you all.
Ritaxx
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To receive a smile, give one away
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Jack
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Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
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Posted: 23-July-2010 at 10:31am |
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I think in this situation you really have nothing to lose by exploring all situations but I think the important thing to do is to also try to enjoy the here and now as much as you possibly can.Don`t waste all your time thinking about tomorrow enjoy today.
In this situation you have to talk to the doctors and ask them if there is any other way forward you can go. i personally believe that a cure for PH will come with stem cell treatment but it is in its early days at present and is very experimental. But as people have said you don`t have anything to lose by exploring the possibility. Good luck and never give up on hope. |
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Today may have been bad but tomorrow could be a whole lot better.
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Peter G
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Joined: 02-December-2007 Location: United Kingdom Posts: 32 |
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Posted: 23-July-2010 at 11:44am |
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well my daughter is taking it better than me this is her facebook status
"that was possibly the most pointless 3 days of my life but at least now i know not to waste one god damn minute of somethng that could be taken just like that" Seems once again kids cope better than adults
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Jack
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Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
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Posted: 23-July-2010 at 12:06pm |
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In my experience that is how you tend to react when you are ill. You are far more accepting about things than those around you. I have always thought that in many ways it is harder for the family and friends of those that are ill than the person who is suffering from the illness.
Its usually the old that teach the young but in this instance I think you can learn from your daughter and follow her lead.
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Today may have been bad but tomorrow could be a whole lot better.
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margwxs
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Joined: 24-April-2010 Location: Cornwall Posts: 89 |
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Posted: 24-July-2010 at 4:11pm |
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Peter
Although all this condition is very new to me, I used to be a sick childrens nurse, and looked after many children with chronic conditions. I know you daughter is older than many I nursed, but I think you would find that she has realised deep down, for some time, that her condition was deteriorating. I think her attitude to the drastic news, that has shattered your dreams and hopes, is a very mature one. I too think I agree with her Facebook posting - Enjoy every minute she can - she has probably seen more of the inside of a hospital during her life, than most of us will experience, and now wants to do all the things she may never get chance to do in the future, if she goes down the route of having, what is still very experimental, stem cell treatment. This is something you all need to discuss, and then decide to do what she wants to do, rather than her face even more treatment, which comes with no guarantees. You are all in my thoughts at this very difficult time. Margaret |
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Music makes the world go round
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Jack
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Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
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Posted: 24-July-2010 at 5:36pm |
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I think that only the doctors can really say what is the best way forward but it as to be said with PH that today`s experimental treatment is often tomorrows success.A lot of the treatments we see now were experimental only a few years ago.There are never any guarantees of success with PH whatever the treatment you have.You really just have to hope for the best.
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Today may have been bad but tomorrow could be a whole lot better.
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Jets
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Joined: 04-October-2006 Location: United Kingdom Posts: 924 |
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Posted: 24-July-2010 at 9:30pm |
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Peter what an awful situation but it sounds like your daughter is a real fighter to me. All of us are I think. I am sure your PH centre will look into what next for her. We all just hope and pray that one day ther WILL be a cure for this horrid disease. Good wishes to you and family. x
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Lupus for 27 years or more and secondary PAH for 5 years but only diagnosed in Sept 2006
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Lu Lu
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Joined: 11-February-2005 Location: United Kingdom Posts: 867 |
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Posted: 24-July-2010 at 11:43pm |
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Peter, my heart also goes out to you and a terribly difficult situation to be in. I also suggest that you discuss, with your treatment centre the next step that they advise you to do.
Keep strong and I also pray every day they will find a cure for this awful disease. xx
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Live every day to the full, as you'll never live it again.
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Miriam
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Joined: 20-March-2006 Location: United Kingdom Posts: 2872 |
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Posted: 25-July-2010 at 12:19pm |
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Peter, the doctors will never "officially" recommend stem cell treatment because it is still experimental. The only way to see if they would support such a decision would be to see if they're prepared to give her the back-up and follow-up treatment she'll require.
It reallly does have to be your daughter's decision and yours too, as it is alot of spend with no guarantees that it may work. It may well be that your daughter prefers to spend the money doing something she always dreamed of doing....
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Laugh, Love, Live
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amandahale@btinterne
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Joined: 09-March-2009 Location: Gwent, Wales Posts: 183 |
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Posted: 25-July-2010 at 2:06pm |
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Hi Peter & Miriam
Its Natalie from Manchester that had the stem cell treatment, she is doing fine? I'll contact her and ask her to write a post on the ph Site!!!
xxx
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VSD repair at age 4. Diagnosed with PH March 2009 age 28.xxx
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Jack
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Joined: 22-November-2009 Location: Southend on Sea, Eseex, Uni Posts: 420 |
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Posted: 25-July-2010 at 2:18pm |
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Nice to hear that she is doing fine. Stem cell treatment may be experimental but it can give people a chance when other treatments are not an option.
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Today may have been bad but tomorrow could be a whole lot better.
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Lu Lu
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Joined: 11-February-2005 Location: United Kingdom Posts: 867 |
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Posted: 25-July-2010 at 5:50pm |
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Really glad to hear that Natalie is doing fine; that is really good to hear. x
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Live every day to the full, as you'll never live it again.
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