The Two Towers
- Thread starter Jeslek
- Start date
unclehobart
New Member
I don't think firing weapons is in the English mindset.
No offence intended.
unclehobart
New Member
I dont recall you having mentioned your daughter before ... either that or Im as dense as saltwater taffy. Care to lay out a little background for my enlightenment? I've known 4 people with Downs in my life and they run the full spectrum of fully capable and quite well meshed with society all the way to barely functional and requiring near full time instituitional help. How would you characterize her level of possible future independence and cognitive grasp of general life?
unclehobart
New Member
Hell, m'boy ... H-E-double toothpicks
Aunty Em
Well-Known Member
unclehobart said:
Katies Photo Album
This is Katies website that I have begun to build and with which she is helping. We have tons of photos that need scanning and sorting! There will be links to The Down's Heart Group and other medical sites, etc. I'm building it because I have been unable to find anything positive on the internet concerning a child with learning difficulties or living with a child with a life-threatening condition. I want people to see that it is a positive experience.
CHD is congentital heart disease - she has a very large vental septal defect with left to right shunting.
Eisenmenger's is secondary pulmonary hypertension caused by CHD and is irreversible causing a gradual physical decline(hence the wheelchair) plus a nasty list of complications including pulmonary embolism and brain abcesses and eventual death, most likely in her twenties.
Treatment relieves the symptoms but cannot cure - anti-hypertensive drugs and overnight oxygen therapy. Complications are treated as they occur.
She will never be fully independent because of this and will always rely on others to help her. Generally she functions at a 6-7 year old age level although in many things she's more advanced - stroppy teenage attitude e.g. "Get out of my room!" - when I want her to pick up her stuff or "Leave me alone." - when I tell her off.
But she is also very loving and a joy to be around and I wouldn't be without her.
unclehobart
New Member
ouch.. rough deal of the deck in getting so many of the possible coronary defects. That just bites. *hug*
I remember an ER episode that covered this all wherein a Downs woman was on her last legs and admitted. The greater part of the episode was spent debating wether to look for an emergency heart lung transplant or just let nature come to pass. The mother was fairly spent and destitute and had spent her entire 30-32 year life instilling happiness and religious routine in that there was bliss in the afterlife. The daughter was happy in a way that she was dying because it meant a step towards that end. The mother also was of the opinion to just let her fade unto the inevitible. The hospital staff was trying to force her to agree to the heart lung search under the guise that the patients rights would be respected.. but being of limited ability, sought to assign an automatic 'save at all costs because the ill cannot speak for themself' reflex. They tried to cut mom out of the decision loop for a while because the girl was of the age of majority. It was one of those 'walk a razors edge' episodes.
rough deal of the deck in getting so many of the possible coronary defects. That just bites. *hug*I remember an ER episode that covered this all wherein a Downs woman was on her last legs and admitted. The greater part of the episode was spent debating wether to look for an emergency heart lung transplant or just let nature come to pass. The mother was fairly spent and destitute and had spent her entire 30-32 year life instilling happiness and religious routine in that there was bliss in the afterlife. The daughter was happy in a way that she was dying because it meant a step towards that end. The mother also was of the opinion to just let her fade unto the inevitible. The hospital staff was trying to force her to agree to the heart lung search under the guise that the patients rights would be respected.. but being of limited ability, sought to assign an automatic 'save at all costs because the ill cannot speak for themself' reflex. They tried to cut mom out of the decision loop for a while because the girl was of the age of majority. It was one of those 'walk a razors edge' episodes.
Aunty Em
Well-Known Member
unclehobart said:ouch..
I remember an ER episode that covered this all wherein a Downs woman was on her last legs and admitted. The greater part of the episode was spent debating wether to look for an emergency heart lung transplant or just let nature come to pass. The mother was fairly spent and destitute and had spent her entire 30-32 year life instilling happiness and religious routine in that there was bliss in the afterlife. The daughter was happy in a way that she was dying because it meant a step towards that end. The mother also was of the opinion to just let her fade unto the inevitible. The hospital staff was trying to force her to agree to the heart lung search under the guise that the patients rights would be respected.. but being of limited ability, sought to assign an automatic 'save at all costs because the ill cannot speak for themself' reflex. They tried to cut mom out of the decision loop for a while because the girl was of the age of majority. It was one of those 'walk a razors edge' episodes.
No-one with Down's Sydrome has ever been given any form of transplant surgery in this country. It isn't just a question of money, they don't meet the criteria laid down - amongst other things they must have insight and understanding into their illness and understand the long-term consequences of surgery - including the difficulties of persuading her to take 30+ tablets per day for the rest of her life - this excludes most people with anything other than a mild learning difficulties.
Katie has no understanding of her heart condition whatsoever, there is a severe shortage of donar organs and I am never likely to be able to afford to take her over there for surgery. Plus, at this time, the 3 year survival rate for heart-lung transplants is 40%. You also have to remember that ALL Katie's major organs are being starved of oxygen to some degree so there will be long-term effects from this also - heart and lung is not a complete cure and she may develop other organ failures.
But medicine improves all the time so there is always hope. I pin my hope on the geneticists and techniques for growing organs in laboratories which won't require the anti-rejection drugs, and educating those people within the medical profession who still think that my daughter has less right to life than a "normal" child.
Ardsgaine
Active Member
Aunty Em said:
After my dad had his heart transplant, he was taking a ton of medication. The worst was something called Prednisone, which is a drug that suppresses the immune system to prevent the body from rejecting the organ. It has severe side-effects on the person's emotions. The doesage has to be adjusted gradually, because sudden changes can induce psychotic symptoms. It's not something you can just stop taking, and even missing a dose is dangerous. It also causes the person to be diabetic, so they have to take insulin to maintain their blood sugar.
That's why the committment to taking the drugs is so important. They did a psychological evaluation of dad before he got the transplant to determine if he was emotionally stable enough to survive the effects of the prednisone. He had a brother who had committed suicide while taking prednisone (can't remember what he was taking it for), so that was a concern. When they do transplants they want to make sure the person has a determination to live. It takes a lot of effort to keep up with the medication, and it takes a strong survival instinct to weather the emotional turmoil caused by the prednisone.
My dad was on an emotional rollercoaster in those first few months after the operation. It's been over five years now, and they've been able to cut his doseage way down. In fact, they may have replaced it with something else at this point. I'm not sure. I don't think he's still having to take the insulin either.
Genetic science holds a lot of promise. By creating an organ that the body would accept as its own, it could eliminate the need for the prednisone and all the attendant complications.
I hope they can do something for your daughter, Aunty. The things you've written about her have made me very sad. I can't think of anything worse than losing a child. As you said in your post in the Creative Arts forum, parents aren't supposed to outlive their children.
Aunty Em
Well-Known Member
Ardsgaine said:I can't think of anything worse than losing a child. As you said in your post in the Creative Arts forum, parents aren't supposed to outlive their children.
Fortunately this condition is much rarer than it used to be and has almost been eradicated with early detection and intervention by the cardiac clinics. Katie was one of the last few children in this country who was not automatically scanned as a baby. Unfortunately because of it's rarity the signs and symptoms were not recognised by the local paediatric team and they did not find it until it was already too late to operate.
I have lived with this knowledge for 10 1/2 years and I feel like I have been to hell and back. Initially I was told she wouldn't make it past 15, now they say mid 20s - nobody really knows. Living with a life-threatening condition is extremely stressful and exacts a high price in emotional turmoil and it's taken me a long time to come to terms with it as I was so angry and depressed. But obviously you know some of that from your own experience. In that time I've also lost my father and my grandfather, studied for and passed my barchelors degree, suffered the breakdown of my marriage and moved back to Colchester after a long absence all of which are highly stressful events.
Now that I've finally learnt to deal with the stress I've been able to stop looking too far into the future and I've let that anger go and the depression is much less. I only began to write again 2 1/2 years ago and I feel that it has helped me a great deal. In fact many of the best writers I know have also suffered great personal loss of one sort or another. So now we just try to live from day to day and let the future can take care of itself, though sometimes it sneaks back in.
Ardsgaine
Active Member
I just can't imagine having to live with something like that.
There's a couple I've known since high school. The husband was my roommate at UF, and we've stayed friends all these years. They lost their second child a few months before her first birthday. I cried like a baby when he called to tell me. It still makes me sad when I think about her. I don't know what reserves of strength they found to get through it. I would like to think that I could go on with life after something like that, but I just don't know.
There's a couple I've known since high school. The husband was my roommate at UF, and we've stayed friends all these years. They lost their second child a few months before her first birthday. I cried like a baby when he called to tell me. It still makes me sad when I think about her. I don't know what reserves of strength they found to get through it. I would like to think that I could go on with life after something like that, but I just don't know.
Aunty Em
Well-Known Member
Ardsgaine said:I just can't imagine having to live with something like that.
There's a couple I've known since high school. The husband was my roommate at UF, and we've stayed friends all these years. They lost their second child a few months before her first birthday. I cried like a baby when he called to tell me. It still makes me sad when I think about her. I don't know what reserves of strength they found to get through it. I would like to think that I could go on with life after something like that, but I just don't know.
I honestly don't know what will happen. I had a very serious motorcycle accident in 1984 when I nearly lost my left leg, which it took me over a year to recover from and left me scarred both physically and mentally. It screwed up my career as a nurse, changed me as a person and I found reserves of strength I didn't know I had. That strength has seen me through a lot since and I can only hope it will see me through this too.