My Story

Dear All,

hope this is in the right place, wasn't sure wether it should be here or in the medical bit. also, plz forgive lack of spelling and punctuation, i don't have too long to type this thing.

i am 19 and am actually doing this from hospital, where i have been non-stop this last time since 15 february. i have very sever asthma, wich my pneumologist told me was unpredictable. i also have bronchopulmonary dysplasia, due to being very premature as a baby, and so on the ventilator a lot at a very early age. this means the inside of my lungs is covered in scar tssue, so the oxygen doesn't go so well into the blood.

also due to prematurity, i recently (a year ago) discovered i suffer from spinal tethering, my spinal cord was attached to my bottom bone. this resulted in paralysing of the legs, incontinence, lack of feeling and a lot of pain. apparantly it is quite common for that problem to go unnoticed till adolescence. ive had posture problems and intermittent pain for years, but no one thought it was important.

i was on nebulizers daily till the age of 7, then three years of nothing, then diagnosed with asthma, but whilst taking daily medication it only bothered me once in ten years, when i got a chest infection on top of flu (aged 14).

then september 2007, me aged 17 i did too much over the summer hols, got a chest infection that wouldn't go away, and had a big asthma attack, ended up in A&E, actually twice in the same day, because the idiots let me go after only a few hours the first time. two weeks hospital. since then, the attcks got more and more sever and more closer together each time. i was told that i was in a state of chronic non stop asthma attack, that would not respond to ventoline.

end of march 2008 i had my worst ever attack, was in a coma, ventilated for 6 days, and my kidneys packed in for a while, so i was put on emergency dialysis. the good news is that it never got quite as bad as that again, but i have since had many other health problems.

end of april i got a small virus. noticing i had a fever, and having been warned about this, i was at the GP within hours, paracetemol, antibiotics, extra steroid tablets. but next morning when i got up to go to the toilet, i fell, and slipped into a coma (i just had time to call out to my parents, who sleep in the room above me...) the small, unimportant virus had gone right into my heart. this is what is called a viral myocarditis. 8 days on the ventilator, and snce then i have had heart problems (palpitations, more breathlessness, chest pains). doctors are unsure wether my heart never fully recoverd as they had hoped, or if i already had a problem that was simply uncovered by that episode. generally speaking my heart now beats too fast, and irregularly.

since april i also had worsening problems in my legs due to the spinal tethering. when i saw my neurosurgeon in september, i wanted to have the operation to cut the spinal cord and remove the grease and liquid built up around it, but he wouldn't. 5 hours on my tummy on an opertating table was too risky, he thought i would die of cardiac arrest, or have to have a tracheoctomy, being unable to come off the ventilator afterwards, because of the stress exerced on heart and lungs in this position they get squashed. again in december i asked, and he finally agreed. i didn't want to wait too long, because the effects are irrecersible after a while. i wanted to have a chance of regaining feeling and movement in my legs, and bladder control.

i was operated on 16th february, successfully. i have already regained almost full bladder control, wich is very encouraging, as it is very difficult and rare to obtain that part. i am currently undergoing intense physiotherapy as an inpatient at the hospital, and have begun to improve my movement.

however, after the operation, my intestin went rotten, no one quite knows why. so i had part of it removed in emergency surgery. i currently have a colostomy bag, but am seeing the digestive system surgeon on wednesday to discuss the date of it's being removed, the two ends of my intestine being sewn back together. they can't do that straight off, they need to let the intestine rest, recuperate, reconstruct some for a while. i was told it could only be a colostomy bag for two months, which would be 22 april.

i also have an unkown problem affecting the left side of my body, sensation and movement. i have a shadow on my brain, for now nothing serious, hopefully no tumour in a years time, regular MRI's.

so, sorry for a long depressing post (i also suffer from depression, but recently physical problems have been so big that my hea doesn't get a word in edgeways, lol) guess i'm just looking for some support, encouragement, needed to let loose ans tell all, and wondering if anyone has anything they would like to share with me (i realise that others would not have this whole range of problems all at once, but maybe one each?...)

thanks so much

Rose xxxxx

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Yikes!

You sound like you are having a rough ride!

I have a rare genetic disorder that no one seems to know anything about.

What do you do to pass your time?

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you have been through the mill.

You will get plenty of support on here, i only found it a month ago but i can see the tremendous support veryone gives each other.

Hope things get better soon

regards

Kelly

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thnks peeps for your nice replies, well as you can tell i am able to spend some time on internet, there's TV (though not in my room, as it's too expensive...) reading, trying to do SOME schoolwork (last yr of secondary school). but here in the week (mon-fri) we have physio 9-12 and 2-5, and are therefore zonked the rest of the time...

so boredom is rarely a problem, although annoyedness at always doing the same things, all day, every day, IS!!!

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Hi Rose

This is a good place to offload and somewhere you can find lots of support. I also have bronchopulmonary dysplasia, and you’re the first fellow sufferer I’ve heard of! As you say, it means I have lots of scarring on my lungs, and twenty-something percent lung function underlying the asthma. I had nebulisers a lot as a child as well, then the asthma didn’t bother me much for a few years until I went to University, and it started to play up again. Chest infections, pneumonia and bronchopulmonary dysplasia seem to get on well together, and I’ve had quite a few of those too. Sorry it’s no help at all, just thought I’d let you know there’s someone else with bpd.

All the best in your recovery, and hope you’re feeling better soon.

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dear Daphne,

thanks so much for ur post, u r also the first BPD sufferer i've found, and ur story sounds very similar to mine: nebs when little, not much for a few years, and then a lot of bothers in late teens. please feel free to pm me if u want to talk about anything,

keep well

Rose