Ventilator/Doctor Appointment Update

It's taken me awhile to get this written and posted. Sorry for those that have been waiting for the update. Sometimes I feel like there are only a handful of people that are interested, but then I go back through my PM's and realize there are a lot of people quietly following my situation. I thank you all for that. It makes me feel less alone in all of this.

I saw my doctor last week for my regular check up. The first thing they did, before I saw her, was another PFT. The one in October was "slightly below normal" which contributed to her decision to send me for the sleep study. This last one was normal. My doctor was pleasantly surprised and said that the ventilator IS doing its job and because I'm breathing better at night, I'm sleeping better and now breathing better during the day. I agree with that.

We DID talk about some of the minor issues going on, including the minor desaturations I've experienced, as well as the before falling asleep "suffocation" issue and the one-time suffocation problem during the night. We are still in agreement that these episodes BEFORE falling asleep are me fighting the ventilator (not purposely of course). The one that occurred during the night is unexplained at this point. It only happened the one time as of right now.

I had MY reports from my pulse ox monitor and told her that the week before, there were NO desaturations at all, yet two out of three nights the week I saw her, I was dropping below 88% once or twice a night.

My doctor feels one of two things is happening: I'm either on my back OR it's during REM sleep (which is where my problems occur) and the ventilator is kicking the pressure up to compensate. I DID have an issue two nights ago where I woke up and was able to look at the clock. The overnight pulse ox report showed a desaturation to 87% that lasted 33 seconds during the exact timeframe. I was NOT on my back so it's most likely an event causing this to occur.

We talked about ventilator downloads. That's going to be an ongoing problem I'm afraid. The download she had was very frustrating because the times on it weren't useable (they didn't make sense). She did say that the download showed one serious pressure spike each night. Because of the time problem on the download, we can't prove it, but both believe they coincide with the desats my monitor is picking up. She and I agreed that if I had an issue (a breathing issue or an awakening issue), having time information from the ventilator download AND the pulse ox monitor would help pinpoint the cause. I've contacted my DME about this and they are looking into it.

I also questioned her about why we didn't try a less invasive and expensive machine before going to the ventilator. We discussed the cost and how this is a perpetual rental rather than a purchase. She sympathized with the financial aspect, but in the end was adamant that the ventilator is what I need, right now and with the inevitable progression of the disease.

I realize I should be grateful things are improving at all. I'm also beginning to fully grasp that I'm going to have bumps in the road sometimes and that doesn't mean I'm not being treated effectively.

The way we left it is that I will continue doing my own pulse ox testing. As long as it doesn't get any worse than it is now, we'll let it ride. If I start to wake up more frequently, in the middle of the night feeling suffocated, I will let her know and she will take steps to pinpoint the cause and treat it. She did mention that it's possible that the ventilator is, for whatever reason, not always sensing my exhale and continuing to push high inhale pressure when I'm trying to exhale. If that's the case, she said it can be adjusted.

So, that's the deal. Unless something changes, I don't see her again until the end of January.

Madalot wrote:I realize I should be grateful things are improving at all. I'm also beginning to fully grasp that I'm going to have bumps in the road sometimes and that doesn't mean I'm not being treated effectively

YAY!!! I had to read thru twice to make sure you are really doing okay....Do ya think the 3 boys chattering at me in the background have anything to do with that????
I can't even imagine how hard it is for you. I do know in my own life that sometimes molehills do appear to be a Mount Everest at first glance. I'm glad things are at least starting to be more calm in your neck of the woods.
I will try to find time to write more later.
Shar:)

Hospiceangel wrote:

Madalot wrote:I realize I should be grateful things are improving at all. I'm also beginning to fully grasp that I'm going to have bumps in the road sometimes and that doesn't mean I'm not being treated effectively

YAY!!! I had to read thru twice to make sure you are really doing okay....Do ya think the 3 boys chattering at me in the background have anything to do with that????
I can't even imagine how hard it is for you. I do know in my own life that sometimes molehills do appear to be a Mount Everest at first glance. I'm glad things are at least starting to be more calm in your neck of the woods.
I will try to find time to write more later.
Shar:)

Thank you, Shar! I appreciate the support. Yes, I am doing fairly well, all things considered. It's been a stressful and emotional situation for me. I know you're newer here and don't know all the specifics of my "journey" through all of this. A quick summary to help those that aren't familiar --

I suffer from a progressive neuromuscular disease. Last summer, I began having difficulty breathing at night. I was immediately referred to a Pulmonologist that felt my breathing WAS becoming compromised by the disease, but the testing in her office wasn't bad enough at that point to treat (by insurance standards). Based on all my symptoms, she decided to send me for a sleep study, hoping to prove that way that I needed equipment. That worked and I got a cpap machine in November. She was very good about ordering FULLY data capable equipment AND regular overnight pulse ox testing. Within a month I was switched to a bipap machine when it was proven that I could not exhale against the pressure on cpap. Within 4-6 weeks, I began having issues on the bipap and it was determined that my breathing was too shallow to trigger the bipap to switch between inhale/exhale pressures. During all of this, supplemental oxygen was ordered. In the end, my DME/doctor talked at length about issues and opted to switch me to the ventilator.

And of course through all of this, I had issues (that's a very polite way of putting it) with my respiratory therapist and I frequently was so upset and stressed.

I have now figured out and have accepted the fact that my condition will sometimes cause things to appear like I'm not being treated effectively, but that's not always the case. A few bumps in the road are okay and expected in my situation.

But I AM doing fairly well right now and am grateful for it.

Glad to hear that you're doing better, Madalot. Thanks for the update. I want to say that I admire your courage in dealing with your health situation, and your willingness to share your journey with us.

KatieW wrote:Glad to hear that you're doing better, Madalot. Thanks for the update. I want to say that I admire your courage in dealing with your health situation, and your willingness to share your journey with us.

I don't feel terribly courageous, but definitely appreciate the sentiments. As long as there are people that openly ask me to share this experience, I am happy to do it. As I said, it makes me feel less alone in all of this.

You are very kind -- and I thank you for taking the time to post to me.

Hi Madalot,
I was very happy to read that despite your progressive disease, the fact that your breathing and sleeping better at night has improved your breathing during the day. How wonderful!

O.

Thanks for letting us know that you are doing okay, Madalot. I'm so glad that you have such a capable doctor and that you have a good relationship with her. It's wonderful that you've had improvement in both your sleep quality and in your breathing (both during the night and daytime too)!

You should be very proud of yourself for learning so much and being so involved in your own therapy. Although dealing with your situation must feel very overwhelming at times, there is power in knowledge! You may not always be able to alter the course of your disease, but you do have control over how you react to things. Your children are learning a lot from you as you face these difficulties and handle them with courage and determination.

I do read most of your threads, but I find that I don't have much to contribute to the discussions since your situation is very complicated. Just know that I do wish you well. Stay strong!

I too am very interested that you are doing okay.

Even though your situation is different, we all understand the frustrations and hurdles

and that is what we all have in common....

Support is universal..

hang in there,

elena

I am very pleased to hear that you are making progress and (a) wish you more solid successes in the future; and (b) remind you that MD's are like car mechanics in that they don't have ALL of the answers nor do they have tons and tons of time to spend on your situation alone so you must be your own advocate always. And it appears that you are doing exactly that.

I spoke with MY GP this week about infusing oxygen into my APAP line and all I got was a dumb look and an answer that was essentially "if I can't fix it with a pill or a referral then I can't help". So I am on the list to see my respirologist again and it could take three to six MONTHS to get into his office as I am no longer on death's doorstep (according to my GP who gave me the dumb look). So I will grab the bull by the horns and purchase a concentrator and plumbing and infuse 2L/m into the airstream to see if it brings up and stabilizes my SaO2 at night. All of my other numbers, according to my S9 are spot on and looking good now, after I self titrated.

And it occurred to me the other day that whatever test(s) that 'they' do on you, the tests are but a snapshot in time of your issue; you appear to be doing all of the right things. I am reading of and speaking with folks that have infused O2 into their airline in small quantity and are getting good results in terms of stability of deep sleep. I seem to have the same issue as you do in terms of shallow breathing during deepest sleep causing SaO2 dropping, raising blood pressure and causing an awakening by the autonomic nervous system telling my body to breathe more deeply and get the SaO2 up. There is no doubt whatsoever that this is what happens when SaO2 drops unless UNLESS one is taking sleep enhancement medication or sedatives or alcohol that messes with the autonomic nervous system and keeps one down in L4 or REM sleep while SaO2 plummets. Mine plummets on some nights, when I am totally exhausted, into the seventies. Scarey. The GP shrugs his shoulders and refers me to the respirologist.

Ultimately, the path that I want to see right now, unless the respirologist has a miracle up his sleeve, is to infuse 2 or 3L of O2 into the air line (keeping in mind that a goodly percentage is lost in the venting process) and record my SaO2 each night for several nights to compare before and after. If the 'after' shows a solid 90%+ each night and if I am sleeping more soundly, then I believe that by empirical data one has resolved the issue unless the respirologist can give me a reason NOT to infuse. And 2 - 3 L is such a small amount that when I was in hospital they seemed not to be bothered if I wore my nasal canulas or did not wear them... and would wake me up fully at night if my SaO2 was below 90% to either breathe deeply or to stick the O2 back on ..... they didn't seem to be bothered which I did, knowing that as soon as I fell back asleep deeply my SaO2 would once again drop.

We are caught between a rock and a hard place I am afraid. And for most the O2 is not necessary but one needs to be tenacious and record SaO2 every night so that there is empirical data to present to the respirologist when you meet.... otherwise they are going to go with the sleep study and that, as I say, is simply a snapshot in time of your issue.

I don't know if my issue will be degenerative with age, but would like to get it well under control NOW so that should it degenerate, we know the signs and the treatment and it is already in place. I had H1N1 last summer and followed that up with 3 weeks in a coma with full life support and acute bacterial pneumonia that just about did me in. I am lucky to be here indeed and want to make sure that, now that I know the damage caused (lung capacity at 70% they think and holding) I can deal with it to the best of my ability. So, go figure, quit smoking two decades ago to avoid COPD and then I get hit with H1N1 which gives me COPD overnight. It's not a fair world out there but at least we have the resources through our friends on the forum, etc., to make the best of a lousy deal.

Keep at it. If anything, we have learned that one needs to be as tenacious as a pit bull in order to get anything approaching quality medical treatment on an ongoing basis. To heck with these snapshots in time of my condition and PRESTO! here is your cure. You are on the right path. Keep it up!

Oh, and one other thing. Never NEVER feel that you are venting or whining when you post on this forum! What you are, in fact, doing, is sharing your life experiences of your particular situation with everyone else and that is where our common benefit comes from. I cannot begin to thank you and everyone else enough for sharing such personal and often sensitive information with me and I do the same in kind, bolstered by everyone's openess and forthrightness. It is what makes each of us stronger and better and more demanding of GOOD and PROPER treatment, even if we have to take tidbits of medical information and advice and expand on it ourselves.

What YOU are doing is very much appreciated (at least by this reader) and I applaud your efforts and progress. If what you are afflicted with is indeed progressive as I believe my affliction to be, then you are placing yourself in the most educated position possible and will be far better prepared to deal with the future than otherwise. And that is where I want to be. I want to be the best I can be so that I am around to dance at my childrens' weddings and I want to watch my grandchildren (yet to come) grow up and marry as well. And with the help, caring and sharing of my friends on this forum, my own tenacity and a pinch of medical intervention and advice that is exactly where I expect to be in 10, 20, 30 or even 40 years time.

Just to be VERY clear, I applaud you for sharing and I thank you for helping make my own life better, healthier and longer. And I think we all probably feel the same.

As a famous playwright once wrote: "All for one and one for all" (did they dance off into the sunset at that point?... THAT I refuse to do).

ozij wrote:Hi Madalot,
I was very happy to read that despite your progressive disease, the fact that your breathing and sleeping better at night has improved your breathing during the day. How wonderful!

O.

Thanks Ozij. I think it was you that suggested AVAPS to me early on in this journey. Turns out that was the ticket!! I hope you understand why I had to hold off doing anything other than researching it in the beginning. I was very lucky to have so much input from all of the people here, but the downside of that is that I got so overwhelmed with information that I just didn't know exactly what to do or when. I think I had to go through the stages of all of this with my medical team before I could get to the point I am now.

I appreciate all the help and input you tried to give me -- even if I didn't necessarily take it as fast as some might have liked.

DreamOn wrote:Thanks for letting us know that you are doing okay, Madalot. I'm so glad that you have such a capable doctor and that you have a good relationship with her. It's wonderful that you've had improvement in both your sleep quality and in your breathing (both during the night and daytime too)!

Thanks for this. The longer this has gone on, the more I have realized that my doctor IS as good as her reputation suggests. I'm very lucky to have her and have told her so.

DreamOn wrote:You should be very proud of yourself for learning so much and being so involved in your own therapy. Although dealing with your situation must feel very overwhelming at times, there is power in knowledge! You may not always be able to alter the course of your disease, but you do have control over how you react to things. Your children are learning a lot from you as you face these difficulties and handle them with courage and determination.

I do read most of your threads, but I find that I don't have much to contribute to the discussions since your situation is very complicated. Just know that I do wish you well. Stay strong!

Well, I've always been one to try to learn about this kind of thing, even though it can be daunting in the beginning. I really do feel that had it not been for this site and the kindness of the people here, I wouldn't be as far along in this as I am. I wouldn't have had the courage to squeak as loudly as I did, thus forcing the "powers that be" to make therapy changes as fast as they did.

I've had several people tell me, via PM, that they don't post in my threads because they don't feel they have knowledge or experience they feel could help me. I do the same thing with other people too. If my experience isn't such that I can help them, I let others with more expertise give them input.

torontoCPAPguy wrote:Oh, and one other thing. Never NEVER feel that you are venting or whining when you post on this forum! What you are, in fact, doing, is sharing your life experiences of your particular situation with everyone else and that is where our common benefit comes from. I cannot begin to thank you and everyone else enough for sharing such personal and often sensitive information with me and I do the same in kind, bolstered by everyone's openess and forthrightness. It is what makes each of us stronger and better and more demanding of GOOD and PROPER treatment, even if we have to take tidbits of medical information and advice and expand on it ourselves.

What YOU are doing is very much appreciated (at least by this reader) and I applaud your efforts and progress. If what you are afflicted with is indeed progressive as I believe my affliction to be, then you are placing yourself in the most educated position possible and will be far better prepared to deal with the future than otherwise. And that is where I want to be. I want to be the best I can be so that I am around to dance at my childrens' weddings and I want to watch my grandchildren (yet to come) grow up and marry as well. And with the help, caring and sharing of my friends on this forum, my own tenacity and a pinch of medical intervention and advice that is exactly where I expect to be in 10, 20, 30 or even 40 years time.

Just to be VERY clear, I applaud you for sharing and I thank you for helping make my own life better, healthier and longer. And I think we all probably feel the same.

Thank you for all your input and comments. I very much appreciate your taking so much time to support me, as well as relay your own experiences to help me work through mine. I agree with you on everything you said.

There is absolutely no doubt that my disease IS progressive. I was told that I will most likely be totally wheelchair dependent within 5 years or so. While the 5 years is just an estimate (and I'm not counting the years -- it will happen if/when it happens), based on the progression in the last 3-4 years, I think it's a fair guess. I try to take this with a grain of salt, but sometimes I get so pissed off when I can't do something so basic like walk into a store and shop. Two years ago, I WAS doing the grocery shopping for the family -- now I can't even pick up a gallon of milk from the store unless someone goes with me -- or if I need something that's on the top shelf of the store -- not going to happen!! It gets so frustrating sometimes, but I really try to focus on the positive - my husband and kids are FANTASTIC and so supportive. I know of other people with progressive neuromuscular disease whose families are NOT supportive at all. I'm very lucky on that front.

The breathing issues caught me off guard I have to admit. I had been very aware of the muscle weakness in my arms and legs so that progression didn't surprise me. My neurologists never mentioned breathing as a possible problem, but I had read where it MIGHT occur. But I sure wasn't planning on it, thus my feeling overwhelmed at times.

elena88 wrote:I too am very interested that you are doing okay.

Even though your situation is different, we all understand the frustrations and hurdles

and that is what we all have in common....

Support is universal..

hang in there,

elena

Thank you, Elena. I appreciate the kindness and understanding.

My neurologists never mentioned breathing as a possible problem, but I had read where it MIGHT occur. But I sure wasn't planning on it, thus my feeling overwhelmed at times.

Even though I knew speech issues can be a problem with my disorder, it has been very disruptive to face that problem. Even when you know it is coming, it is still discouraging.

Most of us "make do" as best as we can. But when there's a big change, it forces - well at least me - to face my own problem. I've developed speech problems. I've developed swallowing problems. And I've had to go on disability. Though I carried that insurance for a LONG time, and even though I knew it might be a possibility with my disorder - I *NEVER* expected to need to use it.

You have my empathy. I am also glad you are doing well. But don't be surprised as you face adjustments. It's never easy.

Best wishes!