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gerbo
28th November 2005, 08:05 AM
Originally posted by jfkimberly@Nov 27 2005, 10:30 AM
I don't see why I couldn't have surgery to expand the thoracic cavity and a lung transplant to fill the space.


you aren't really serious there are you?? I am sure that if your lungs are basically healthy (though restricted in size), they'd expand if given more space, and even if a bit restricted, would function much better than anything transplanted.

Is surgery to expand your thoracic cage an option, or "just" a dream??

jfkimberly
28th November 2005, 08:48 AM
Dr. Campbell disagrees. My lungs never had a chance to develop, because my thoracic cavity has been restricted since infancy (fusion at 11months, mind you). When I asked after surgery last year, he said even if he could make it bigger, it wouldn't do any good. My lungs won't develop any more than they are.

Just a dream, sadly. The term "pipe dream" comes to mind.

gerbo
28th November 2005, 09:10 AM
does the bipap help, (and what does it involve??)

jfkimberly
28th November 2005, 09:37 AM
PLEASE NOTE: Most young people won't grow up to have the level of pulmonary impairment that amazed and I are living with, because treatments are so much better today!

There are images in the gallery (My Member Gallery (http://www.scoliosis-support.org/modules/myalbum/viewcat.php?cid=10)) of the machine, the hose, and the original mask. I've got a different mask now, one that fits completely over the nose. The nasal-prong one pushed up against my septum and made it ache.

Unfortunately, I haven't had any luck with mine. Amazed has seen an improvement from using hers (which is really good, because her lung capacity is less than mine!).

The idea behind it is that when I'm awake, I'm able to breathe deep and rapidly enough because I'm consciously making an effort to keep all the muscles in my chest working (not just my diaphragm). But when I am asleep, only my diaphragm is working, and my breathing rate slows, and my oxygen level drops. Then I wake up breathless, catch my breath, and slowly drift back to sleep, and start it all over again... repeatedly throughout the night (or day in my case, since I'm nocturnal).

But the BiPAP (Bi-level Positive Airway Pressure) machine is supposed to break that cycle by forcing air into my lungs, making me breathe deeper. "Bi-level" refers to the fact that it has a higher pressure for when I'm inhaling, and a lower (but never neutral!) pressure for exhaling. This is supposed to force me to breathe sufficiently throughout the night.

What actually happens is I put the mask on and I lay in the dark fighting against it to breathe, feeling suffocated the whole time, until I get so tired that I take it off in frustration so I can finally get to sleep. With or without the machine, I wake up with headaches from either lack of proper sleep or lack of oxygen. Hard to know which. And impossible to rate which one is preferable.

(If my post sounds gripey, I'm really sorry... sleep and oxygen are a sore subject for me lately. It's really not directed at you!)

gerbo
28th November 2005, 10:15 AM
no, you do not sound gripey, just understandably bothered

Is there a chestphysician involved who can advice you on this machine and whether there are ways to make it work for you?

jfkimberly
28th November 2005, 10:32 AM
I've got quite a medical team, but they aren't at all coordinated. I have a pulmonologist, a cardiologist, and a "sleep specialist" (whose board specialty is neurology, I think). It's the sleep specialist following my progress with the BiPAP. I really need to make an appointment to follow up with him, but I've been putting it off. I'm so frustrated, and after working on the BiPAP for well over a year now, I've run out of patience.

But I need to do something. Quality of life, and whatnot.

gerbo
28th November 2005, 10:58 AM
QUOTE (jfkimberly @ Nov 28 2005, 10:32 AM)
I've got quite a medical team, but they aren't at all coordinated.


same old story, but indeed you need to do something

for what it is worth, added link to a page with links to some sleep apnoea selfhelpgroups, maybe you van get some useful advice from one of them

http://www.patient.co.uk/showdoc/559/

gerbo

jfkimberly
28th November 2005, 11:03 AM
Thank you, I saw it in the old thread (which is why I posted the "oops" comment)... I'm looking over the link now to see if there's something there to help me sleep at night. Or any time of day. I'm not choosy.

DublinPauline
28th November 2005, 11:06 AM
I wonder if it would be worthwhile trying to get an appointment with Dr Anita Simmonds Consultant in Respiratory Medicine, Royal Brompton NHS Trust in London, while you're there in January. She has a huge amount of experience of working with "people like us" and of Bi-Paps etc and she might just be able to suggest a better set up for you?
There's no harm in sending her an email?

gerbo
28th November 2005, 11:08 AM
if it is lack of oxygen what wakes you up, i doubt that it would be advisable to have something to help you sleep, as that might make you ignore "warning signals", depends I suppose how low your oxygenlevels dip at night. Maybe just having plain oxygen administered at night would be possible?

There could be other reasons though that you do not sleep, pain? low mood/ depression?, which might need addressing separately to help you.

just some thoughts, for what it is worth.....

jfkimberly
28th November 2005, 11:08 AM
Oh, wow... I never would have thought of that! Do you think she could fit me in with only six week's notice?

I have insurance that should cover 50% when I'm out of the U.S. ... Can you give me her email address again? You're absolutely right that it doesn't hurt to at least contact her.

DublinPauline
28th November 2005, 11:12 AM
Here are her contact details from the website:
http://www.rbht.nhs.uk/InternetSection/peo...tantDetails.asp (http://www.rbht.nhs.uk/InternetSection/peopleFinder/consultantDetails.asp)
No email address that I can see so you may need to phone the secretary for it.
Good luck!

jfkimberly
28th November 2005, 11:18 AM
Thanks, Pauline! I'm suddenly glad I haven't booked my flight yet. I might have to work around an appointment!

jfkimberly
28th November 2005, 11:29 AM
Originally posted by gerbo@Nov 28 2005, 06:08 AM
if it is lack of oxygen what wakes you up, i doubt that it would be advisable to have something to help you sleep, as that might make you ignore "warning signals", depends I suppose how low your oxygenlevels dip at night. Maybe just having plain oxygen administered at night would be possible?

There could be other reasons though that you do not sleep, pain? low mood/ depression?, which might need addressing separately to help you.

just some thoughts, for what it is worth.....
No, you're absolutely right, gerbo. I avoid alcohol and other sedatives for this very reason. I'm afraid to go to sleep drunk.

At my first sleep study (baseline test, no intervention), it appears that in my few REM periods, my O2 sats dropped to the 60s (I think... Dr. Goza was never straight with me on that). Fortunately, though, I don't stay in REM sleep much. I should post my somnograph (I think that's what it's called that charts my sleep from the study).

I've asked repeatedly for supplemental oxygen, but everybody I've asked has said no. I can't figure out why. The word "frustrating" is getting to where it doesn't even cover how I feel.

I have no pain, and other than this issue, my mood is fine. In fact, Dr. Goza tried the "Zoloft Experiment" to reduce my non-existant REM sleep when the BiPAP wasn't keeping my O2 sats up sufficiently... The Zoloft made me depressed. Well, not depressed. Just flat. An absence of my usual happy self. I won't go near psychotropic meds ever again! *chuckle*

gerbo
28th November 2005, 11:37 AM
why wouldn't they give you oxygen?? maybe they are worried it would suppress your impulse to breathe, which would be very counterproductive.

Sounds that you need to get your cipap sorted, and clearly you have some options, hope it works out

gerbo

jfkimberly
28th November 2005, 11:43 AM
Yeah. Thanks, gerbo. I'm working up the will to continue this battle. It's so easy to just put it off indefinitely.

Amazed Jean
29th November 2005, 04:54 AM
Kim, I wanted to encourage you to keep trying with the Bipap. My pulmonologist has made me stick it out. I am still using my Bipap set at 8 and 4 and with a newer lightweight mask and the small nose cover. That alone has made a huge difference in my comfort. I also took anti migrane drugs for three weeks. I was a tad worried taking them along with my antidepressants at night but I finally feel like I have gotten some good sleep. Before we do the party thing too much - I also have gotten a huge case of some upper respiratory crud. Allen, Jae and baby Aidan all had it first and shared it with me. I now feel like hammered doo doo and am spending lots of time on the bipap to rest my lungs whenever I can stand it. Allen is out of town but is driving the whole 800 miles back today so he can take care of me. (Yep, I sure am lucky to have him and yes I know I bitch about him sometimes and I apologize for any nasty stuff just so he gets back here and fixes me soup and tea ). I promise to chat more with you in a few days just let me feel better.

mark
29th November 2005, 10:11 AM
Sorry to har your not feeling too well Jean, i don't think allan wouldn't mind you bitching about him too much its's what us guys were put on this planet for.

ps whats a hammered doo doo ?

hope your feeling better soon :squeeze: from England

mark

jfkimberly
29th November 2005, 10:20 AM
Hammered = flattened, beaten, knackered (I think that's what you guys would say), etc.

"doo doo" = poop, or less politely, sh*t

She's feeling pretty awful, in other words.

Jean, I'm really sorry that chest cold has got to you. You really don't need it! How do you cope with the BiPAP when you have to cough? Do you have the same awful feeling like the air is rushing out of you when you have your mouth open? I don't even bother trying to use the BiPAP when I have a cold. It's just pointless, since I constantly have to remove the mask, cough, then put the mask back on.

Yeah, you're right that I should keep trying with it. But I'm not feeling very motivated at the moment. I feel like I'm suffocating when it's on. I'm really not sure what to do at this point. It took me so long to get Dr. Goza to put the pressures down to levels that didn't inflate me like a balloon, I just don't think he's as receptive to my input as I would like. I really think I need to see someone else, but I don't know whom to go to.

jfkimberly
30th November 2005, 10:40 PM
This post is for Jean...

I woke up feeling particularly horrible yesterday (the past week it's gotten to where I'm taking medicine for the headaches in the morning, just so I can face the day), and I re-read you post encouraging me to keep at it with the BiPAP. Well, I decided to wait until I was too tired to stay awake any longer (8:30 am), then I started the machine, put in my mask, and huddled under the covers (it's quite cold here all of a sudden)... I woke up four hours later because I had to use the bathroom, then I went back to sleep... and then I just woke up now. I got eight hours of restful sleep and no headache!

This is the best "morning" I've had in a very long time.

Thaleias spirit
30th November 2005, 10:42 PM
Originally posted by jfkimberly@Nov 30 2005, 10:40 PM
I got eight hours of restful sleep and no headache!

This is the best "morning" I've had in a very long time.
:hammer: :hammer: :hammer:

Thats great news !!! Gosh wasnt it so worth trying it all again?

Now, if you try stick it out with the inhalers even if you dont feel a difference straight away, who knows what they should do for you also.

Keep it up .. you'll get there .. :squeeze:

jfkimberly
30th November 2005, 11:04 PM
Yes, it was. I'm going to keep at it until my trip to Florida, and see if it continues to be helpful.

As for the inhalers, Dr. Rector put me on those in 2002, just before my brain surgery, and I didn't keep up with it. I'll have to go back to see her and ask for another prescription in order to give it a shot. But I think it's worth exploring if you saw that much improvement.

Thaleias spirit
30th November 2005, 11:19 PM
I didnt notice is to start with, but I found a difference in performing the Pulmonary Function Tests and gradually over time I've seen the difference they have made. I've been on them a year and a half now, and although some days I still feel caught for breath I often dread to think how much worse I could feel without them. Plus with the chest / lung infections over the last few months, I reckon the inhaler saved me from an awful lot of problems. If they hadn't opened my airwarys the bit they did, then it could have been much more serious.

I understand the frustrations with waiting for medications to work. You want instant results but sometimes the patience of sticking with it is so very worth the frustrations you felt those early days.

Now every time you feel frustrated at BiPap, just remember those 8 hours of restful sleep without a headache!!

:niceone:

jfkimberly
1st December 2005, 12:12 AM
I will... this is my first headache-free day in ages. I actually feel good.

Did you have pulmonary functions tests back-to-back with and without the inhalers? Was there any change measured immediately?

sins
1st December 2005, 10:59 AM
The inhalers show a difference after about 10- 12 weeks.
I know my peak flow went from 250 to almost 400.That's quite a difference.The biggest gain for me was the reduction in inflammation of the air sacs.Previously I would get out of breath walking across a room whereas now I can even run 100 meters without too much trouble and climb five flights of stairs at work.previously I would be gasping after the first flight.
The inhalers cannot increase your chest wall size, but it can make what you've got work more efficiently, like getting more air through and increasing oxygen transfer.Short acting inhalers like ventolin have limited effect, it's the longer acting ones in combination with steroids do the trick.
Sins
Sins

jfkimberly
1st December 2005, 11:05 AM
*bigheavysigh* Okay, I'm convinced. I've just got to get to Dr. Rector again, then. Thanks Chele and Sins.

Amazed Jean
1st December 2005, 07:51 PM
Kim, Congratulations! I am so happy it worked. Sleep is a wonderful thing ain't it? I am missing out on some currently with the upper respiratory thing I got from my family but I am still Bipaping . I just rip it off - cough like crazy and put it back on. I can't get the O2 unhooked from the Bipap and back to me very fast, so when I cough I'm not getting O2 but as soon as I can I slide the Bipap back on and all is well. We went to see my GP yesterday and he prescribed some "cough pearls" - I took one last night and within a half hour I thought I was having a heart attack! Chest pain was incredible! It must be that the "pearl' reacting with my bad esophagus-shit! Can any one damn thing be simple? Hey I didn't cough all night but then I didn't get much sleep either. Pain is gone this AM so no more pearls for me.

jfkimberly
1st December 2005, 11:26 PM
I don't know what "cough pearls" are, but as a kid I was never given cough suppressants. My doctors and my parents were of the opinion that if I needed to cough, I had something to cough up, and it was better for me to get it out. I was given all kinds of decongestants, though, to prevent nasal drainage from seeping down into my airways and lungs. I don't know if it helped back then, but these days if I have nasal congestion, I take pseudoephedrine (Sudafed) before it progresses to a chest cold. And so far it's working! It might be worth a shot for you.

Then again, it might give you similar chest pain. Read the box label and package insert about complications. It makes me feel a bit 'anxious'. But if I can breathe, I don't care.

Thaleias spirit
2nd December 2005, 07:00 PM
Originally posted by jfkimberly@Dec 1 2005, 11:26 PM
I was given all kinds of decongestants, though, to prevent nasal drainage from seeping down into my airways and lungs. I don't know if it helped back then, but these days if I have nasal congestion, I take pseudoephedrine (Sudafed) before it progresses to a chest cold.
I remember a few years back a gp prescribing sudafed for me and it actually made me sick. So I haven't taken it since. The issue I have with decongestatnts is that I was told I shouldn't use them as a result of a thyroid issue. However upon reading further it would seem this applies moreso to an over rather than underactive throid, which I have.

Anyway what I'm saying is .. I get very conjested, nasal & sinuses. nasal drainage seems to be my biggest problem. Which explains why I've felt awful all week again. Tueday night I was upset about stuff and got very conjested afterwards. The fact the heating seems to be turned up at work didn't really help much. But the inhaler and exputex kept me clear somehow.

Funny how small things can totally throw you out of balance.