Ventilator Therapy - Accepting...But

I am posting for those that have been following my situation for the last, wow -- going on 2 years. Time does fly.

I saw my Pulmonologist for my 3-month/annual more thorough checkup. She was concerned about the reaction I had to Nuvigil and was against my trying anything else in that class of drugs. She said the ONLY other thing she would consider would be Ritalin, but a discussion with the Sleep Neurologist ruled that out as he is concerned about heart involvement with Ritalin and doesn't want to risk it with my neuromuscular situation. I appreciate that because I have enough problems -- don't want to start messing with my heart.

My annual PFT was discouraging. My initial test in 10/2009 showed diminished capacity, but the 10/2010 test showed significant improvement, perhaps from using the ventilator. The test last week indicates I have slid halfway back to 2009 levels. Ugh.

I told my Pulmo how when I am doing tasks like pouring coffee, washing dishes, getting something out of a cabinet, or walking & carrying something, I cannot do the task and breathe at the same time. She said that my diaphragm paralysis is apparent in the day/sitting position and since my diaphragm is unable to support my breathing, I use my pectoral muscles to breathe. When I need those muscles for another activity...breathing ends up being sacrificed. Good to have that one explained so at least I know what is happening.

I told my Pulmo that especially based on my afternoon naps (where I leave the screen up on the ventilator), I think that my breathing is impaired and the ventilator keeps raising the IPAP to try to make me breathe or until I wake up. I frequently wake up to 17-18 (it stays at 14 when I'm awake) but woke the other day to 19.5. She looked over the download and said that I am hitting 20 (or higher) several times a night and the pattern she sees could very possibly support that theory.

Anyway -- Both the Pulmo, Sleep Neurologist & Regular Neurlogist have all said that keeping me breathing is the #1 priority and that sleep disruption and daytime fatigue, while problematic, are secondary problems. And none of them has any other ideas about solving them.

My Regular Neurologist increased my dosage of Mestinon and I DID find that I was able to pick up a book I hadn't finished and was able to read it and finish it in 3 days (as long as I read within a 2-hour window when I'm getting the most benefit from the med). I am supposed to keep taking this dosage and report back to him in a few weeks to decide IF it's giving me enough of a benefit to warrant continuing it. To the best of my knowledge (at this point anyway) it's not impacting my breathing.

I think I have my health insurance situation resolved, which is good. I will be switching companies. Some of the coverage is better, some not as good, but overall, I think it will be okay. This is a big name company and sent a representative to my home and she said she will be my contact/rep AFTER I enroll and can help with any concerns or problems after the fact. That's nice. This was NOT a problem I needed to deal with right now, but having my current plan discontinued as of the end of the year left me no choice BUT to deal with it.

As far as my therapy is concerned, I appear to be at a dead end.

However, a very kind, caring and overall wonderful forum member has offered to loan me a Resmed VPAP to try, just to see IF the breathing algorithm is enough different to give me any relief from the sleep disruptions. I ran the idea by my Pulmo who said if I can "test drive" it (meaning I still have the ventilator here to fall back on), she is okay with it just to see. I am seriously considering this very generous offer, but am taking the weekend to think about everything that has happened in recent weeks.

And to this forum member (you know who you are) -- I once again say THANK YOU for everything. You have been so good and kind to me. Brings tears to my eyes just thinking about it.

{{{{Hugs}}}} Maddy! We care!

This is all I can offer.

BlackSpinner wrote:{{{{Hugs}}}} Maddy! We care!

Thank you. The kindness and caring (and help) I've gotten here has been incredible. My situation is enough different that it wouldn't have surprised me to be told that this was NOT the place for me -- but the people here are too good to do that -- and I am grateful.

No matter where I am now, I believe that I wouldn't be this far if not for the help and input from people here.

BlackSpinner wrote:This is all I can offer.

And it's enough -- and I thank you for it.

Hey Mad

I am extremely glad your sleep doctor woke up and started thinking about you as a unique individual. That's a relief anyway... no more crazy Give-Mad-a-drug-and-ignore-her capers.

I'm sorry your news wasn't so great. You know I, along with all the others here, care about you.

((( hugs )))

Thank you for your update on your situation. I had been worried, since you had not posted in a while.

Madalot wrote:... As far as my therapy is concerned, I appear to be at a dead end. ...

While I definitely agree and understand everything you posted, might I suggest another way of thinking about this? Instead of seeing this as a "dead end", think of it as "You are on a clearly defined path, without a lot of alternative options - at the moment." Perhaps it's just the eternal optimist in me, but I always hunt for a viewpoint that opens options rather than closes doors.

Know that I am thinking and praying about your situation. There's not much that I can do. But you and your family are definitely in my prayers.

Maddie,

Glad to hear you have some answers and at least a plan and path to take. I hope the VPAP trial works. Maybe that is a better option for you at this time.

Its good to know that your doctors are trying. I am curious though if the nerve stimulator would help you any? I have a friend who had one implanted to help with bowel and bladder function as the result of trauma.

snuginarug wrote:I am extremely glad your sleep doctor woke up and started thinking about you as a unique individual. That's a relief anyway... no more crazy Give-Mad-a-drug-and-ignore-her capers.

I'm sorry your news wasn't so great. You know I, along with all the others here, care about you.

JohnBFisher wrote:Thank you for your update on your situation. I had been worried, since you had not posted in a while.

Know that I am thinking and praying about your situation. There's not much that I can do. But you and your family are definitely in my prayers.

msradar65 wrote:Glad to hear you have some answers and at least a plan and path to take. I hope the VPAP trial works. Maybe that is a better option for you at this time.

Its good to know that your doctors are trying. I am curious though if the nerve stimulator would help you any? I have a friend who had one implanted to help with bowel and bladder function as the result of trauma.

My thanks again. Especially now, it helps to have people (besides my husband) that care and are concerned.

msradar65 -- I am not sure what a nerve stimulator would do in my situation. I need to think about that one...

A couple quick things I neglected to mention in my original post...

I made BIG mistake that came to light during my pulmo appointment. She had suggested taking a benedryl to try to help me sleep through the pressure changes. I cut it in half because of the fogginess the next day. Half worked okay for about a week, then stopped. I started taking a full benedryl (25mg). Again, worked for about a week, then stopped. On my own, I added an OTC Sleep Aid. I remember mentioning in a post that I was sleeping HARD on it, but again, after about a week or so, it wasn't working so well.

It turns out, the ingredient in the sleep aid I was taking is BENEDRYL -- I was taking 75mg (25 - 50mg is the recommended dose). It was NOT an intentional thing, but a stupid thing since I didn't look at the ingredients (won't make that mistake again). My doctor could tell that I did not do it on purpose, but we agreed I needed to stop that immediately.

What she has suggested is either the Benedryl (or the Sleep aid which is 50mg) can be used for 5-7 days, then stop for 5-7 days. She said that when the effect wears off (like it does with me) sometimes doing and on/off/on/off pattern can help. So, I'm off both of them until at least the beginning of the week.

I have also figured out (and I need to talk to her about this) that sleeping on my LEFT side is much better and I have fewer awakenings. I'm guessing (and based on my initial sleep study I would think is valid) that my breathing IS better when laying on my left side, which I tend to do instinctively. The problem is that spending so much time on that side has seriously aggravated the nerves in my left thigh. My neurologist has increased my gabapentin dosage (which has helped some) but this is a big problem that again has no easy solution.

Last night, I went to bed early and was dozing lightly (on my right side) when I was jerked awake by high pressure. I felt it, but checked the machine and sure enough -- it was over 18 at that point. There is NO DOUBT in my mind that the pressure is what woke me up. And I was ticked because I was really tired and had just dozed off. I flipped over to my left side and was able to fall asleep that way - no significant pressure increase that I know of because I did not wake up again for about 2 hours. We already know that supine sleeping is a big NO NO with me, so I never do that either (plus my mask leaks like crazy on my back).

So, it's NOT just that I need the ventilator to breathe when I lay down, sleep position DOES have an impact on how bad my breathing is. I'm running out of ways to sleep that I CAN actually sleep.

Maddie,

I am thinking some sort of customer bed or bed pad to help with the pressure so you can comfortably stay on the side of preference. Just throwing that out.

I am looking at a new mattress pad..since starting CPAP I tend to stay in one spot all night rarely moving. So I awake stiff, sore and numb on that side.

I use to sleep on a hybrid water bed and it was great...but now I am back on regular bed...its far harder and less giving than my water bed.

msradar65 wrote:I am thinking some sort of customer bed or bed pad to help with the pressure so you can comfortably stay on the side of preference. Just throwing that out.

My neurologist, occupational therapist AND pulmonologist have all thrown out "hospital bed" as a possible option. I'm resisting that idea at this point, because, uh, I don't like the idea (I have my reasons). My pulmonologist is thinking that I may need to sleep more propped up to ease my breathing. I have a wedge pillow but I stopped using it because I really prefer to sleep flatter. But, it may be the lesser of a couple of evils when they are all talking HOSPITAL BED.

However, my hubby and I have thrown out the idea of the Craftmatic (sp??) Adjustable Bed. I don't know much about them, but if it would allow us to get a King (and continue sleeping together) with each side adjusting separately, it *might* be something we can consider.

But...I still don't want to. I'm in a "mode" where I am digging in my heels in child-like fashion.

Madalot wrote:
However, my hubby and I have thrown out the idea of the Craftmatic (sp??) Adjustable Bed. I don't know much about them, but if it would allow us to get a King (and continue sleeping together) with each side adjusting separately, it *might* be something we can consider.

But...I still don't want to. I'm in a "mode" where I am digging in my heels in child-like fashion.

My parents have had something like that for about 10 years or more. Don't call them "Hospital beds" Call them luxury adjusting beds, which is what they are. They are divinely comfortable with a quality latex foam mattress. We bought them new mattresses this spring and I had to "test drive" them No, No I will not request them in the new will, no I won't.

Trust a doctor to call the most luxuroisly adjustable bed a "Hospital bed". Of course you don't need a hospital bed. You need the absolutely most luxuriously adjustable bed you can find - for you and your hubby.
Thanks for the update, Kathy.

ozij wrote:Trust a doctor to call the most luxuroisly adjustable bed a "Hospital bed". Of course you don't need a hospital bed. You need the absolutely most luxuriously adjustable bed you can find - for you and your hubby.
Thanks for the update, Kathy.

LOL -- I think one of the differences is that if they order/write a prescription for a hospital bed, insurance would kick in to cover some of the costs. If we elect to get a nice, luxury adjustable bed (instead), it's on our dime.

We're still in the "let's think about this for a while" stage. I like our bed, which is only about 4 years old (I wasn't having breathing issues back then or we might have looked at adjustable beds instead - no crystal ball back then).

Hi Madalot,
I'm new here so I don't know you from older posts. I just wanted to express my sympathy and best wishes as well for having to deal with such serious health issues.

One thing that came to mind was the idea of negative pressure therapy. People with serious respiratory paralysis used to have to go into an iron lung. Well, as archaic an idea as that is, the concept of negative pressure respiratory therapy still exists and is a useful therapy for people who have difficulty breathing on their own. Respironics used to be a main player in the iron lung industry.

By the way, the contemporary "iron lung" is not a full body appliance as it was in the past. It fits on your upper body and provides respiratory assistance as needed and often just during sleep times.

I'm no expert in these matters other then personal research to deal with my own chest wall immobility. Just saying it might be a more reasonable option for you.
Jamis

As my dad got sicker, my parents invested in an adjustable bed... it was a King (in theory anyways)... really it was two XL Twins that adjusted separately. To this day my mom has them separated in her room.

I'm so sorry to hear about your condition. I have failed to raise my FEV1 level of 73 for over a year on different inhalers- symbicort and now dulera with albuterol and a nebulizer. I have a friend who uses asmanex but I"ve heard that symbicort is safer for long term safety. I hope that you can get an oxygen concentrator- it has made a difference in my sleep though I still struggle on bipap st.