At The End of My Rope

[Madalot]

I've been asked this privately, so I'm addressing it first:

I use the ventilator EVERY night. I skipped one night as a test, but that was the only night I didn't use it. I NEED it because breathing is difficult for me without it. Sometimes breathing is a challenge ON the machine.

I am nearing the end of my rope. I've been on basically the same settings (aside from raising the Min IPAP to 16 and a few minor adjustments) for over a year. I've never felt the settings were optimum and have been having significant problems since November. Here it is March and we haven't been able to change a thing. Yes, the RT tried two different modes, but both of them triggered the "Low Inspiratory Pressure" alarm so much that I couldn't get ANY sleep.

My doctor looked at my data a couple weeks ago - from my card, on the computer - not the printout. The RT told her that there was something she needed to see that couldn't be seen on the report. This is what she emailed me LAST Monday after reviewing it:

There is a definite pattern to your breathing at night. There are periods of increased minute ventilation that occurs about every 60- 90 minutes. Most times this is due to an increase in your own respiratory rate, not an increase in ventilator back up breaths. Based on the times these occur I think they are most likely related to REM sleep but I can't tell if what we are seeing is an effect of REM sleep since breathing is less regular during REM sleep or if you are waking up at the onset of REM sleep and that is what is causing the increased rate.

The first night you went to 16 there was a slight decrease in the variability but this was back the next day. I am not sure I can learn much more without actual observation in the sleep lab. We can match the settings you are on with our machine to try to figure out what is happening.

Okay -- I have complained about waking up almost every 60-90 minutes and she sees something going on. I know I'm going to have to submit to a sleep study if I want anything resolved and I understand that, but I'm waiting to talk to the RT. He was attending some kind of meeting where he said there would be other RT's and sleep techs and he was going to pick their brains about my case. Plus, I really want to see what he thinks about doing the study on another model ventilator that doesn't have AVAPS. He had made some specific comments and suggestions about the study and I NEED to speak with him BEFORE I schedule it.

I still wake up a lot. Some nights, I have horrible palpitations, chest pains and lightheaded feeling that makes me feel like I'm passing out rather than sleeping. I'm in the middle of cardiac testing now. Monday night, before I fell asleep, I had that awful trouble breathing that nobody seems to understand. I lay there, trying desperately to just fall asleep, but the effort it takes to get air in and out is so difficult that I come close to panic. I considered increasing the IPAP Minimum again, but was hesitant to do it because I wasn't sure if it would help or hurt. If I ever had both problems at the same time, I think I would lose my mind. Thank goodness It's one or the other because the nights ONE happens it tests my ability to cope.

I've gone back through my old threads, plus read NEW threads and try to understand all that is discussed, hoping to find something/anything that might be of help to me. But it overwhelms me so much that I can't make heads nor tails of most of it. I wish I had the "vocabulary" to take charge of all of this and make changes to the ventilator until I got it right, but I simply do not know what to do with it. I have learned so much here, but obviously not enough to help myself. So, I HAVE to wait and let my doc/RT do it, but they take so long to address anything.

I am exhausted, weak, cranky (bitchy is more like it). My daughter looked at me this morning and informed me that something I asked her we had already discussed and said that my memory is going. Great. She thought it was funny. I don't see the humor in it.

I think/feel/believe that if we could get this damned vent set up better, some of these other issues *might* lessen or disappear.

I need this fixed, but am running out of patience.

Sorry -- This is a whiney vent (no pun intended).

[robysue]

Madalot,

I'm so sorry to hear that the problems are not getting better and in fact seem to be getting worse---at least in the sense of your ability to cope with them all. And you've shown remarkable abilities to cope with a very nasty situation and it's easy to understand why you feel you're at the end of your rope.

Keeping you in my prayers and thoughts. And hoping that some of the testing shows up something that can be treated effectively in a way that genuinely improves your quality of life.

[rosacer]

Madalot,

I understand very well your need to put word to your feelings, it's OK really OK.

I hope I was able to do something to help you to find a better quality of sleep and life but I don't know what to say or what else to do than to pray. You have been very strong until now, you are an awesome person, reading you I have discovered how you are a person full of good qualities and good heart. Don't give up, something good need to arrive soon, let's continue praying and waiting the answer for this situation. You can be assured that there is a lot of people who think at you and wish you the best.

All the best

Rosie

[Slinky]

(((hugs))), Madalot, (((hugs)))

[HoseCrusher]

Let's see now...

Palpitations, light headedness, shortness of breath, unable to sleep, cranky, bitchy, forgetful... and did I read somewhere that you are 17?

Yes, I think I have figured it out...

You are suffering from "Puppy Love."




Sorry, I just heard that song on the radio and applied some "out of the box" reasoning. I hope it lifted your spirits a little.

I don't know if you have spent any time around the ocean, but there are times when the waves are crashing and things are really stirred up. After a while, everything settles down and there is some time of calm.

Life's situations often follow a similar pattern. When I find myself caught up in the turmoil and crashing waves of adversity, I often find an inner calm in the anticipation of the break through into the calm.

As always, you are in our households thoughts and prayers.

[DreamDiver]

I'm very sorry you're frustrated and disappointed with your current treatment. I cannot begin to know what you go through every night. I hope you, your RT and your doctor will arrive at the right settings for your machine soon.

[jbn3boys]

Maddy,
While I'm thankful to hear an update from you, I am saddened by the situation. I was hoping in the time that we had not heard from you that your cardiac testing would be done, that your RT would be back with some ideas, and that the sleep lab would have gotten ahold of your specific model of ventilator in order to do a sleep study. (Yep, that's a fantasy world--but I like the thought! ) Okay, I really did hope at least one of those things would have happened by now!

I totally understand the "waiting" game you are forced to participate in. I am in a similar situation, although nothing as serious as you. It is so frustrating to not be able to try anything on your own, and have to wait, wait, and wait some more for the professionals to figure something out. I "get" that part of it!

Please hang in there...you are loved and needed. You are special!! Know that we are all pulling for you, and many of us are praying for you.

jbn

[BlackSpinner]

{{{{ Hugs }}}} from me too.

I wish i could help make it better.

[DoriC]

I was hoping that you'd have some better news to update and I can't even imagine what you're going through. I think of you every day. I'm not educated enough to know the differences between your machine and the lab machine but since the Dr seems to think that with a sleep study they can match things up pretty well to your settings at home to get some answers while actually observing you, isn't that a positive recommendation? I know the situation is complicated and I hope your RT will also give you some input soon so you can make a decision asap. God Bless.

[mars]

Hi Madalot

Once again, I wish I could help more

But perhaps you can keep in mind this -

You are doing a terrific job in staying in the real world, and describing what is going on in real terms. This keeps your situation as it really is - and does not add a bigger emotional burden than you already have.

You do not exagerate by saying such things as "I can't stand this" or "this is too much" etc. You know what I mean Madalot.
Please Madalot - never say those words or anything similar, as they will make things worse for you. Stick to your reality, no matter how hard, and you will give yourself the best possible chance of working through this.

and hugs from me too.

Mars

[-SWS]

I am not sure I can learn much more without actual observation in the sleep lab. We can match the settings you are on with our machine to try to figure out what is happening.

Well, that proposal resonated with me when I read your post, Madalot. I think that's a reasonable approach. I would try to work with insurance to make that happen.

Hey, chin up... Vent when you have to... But keep making lemonade out of life's lemons. And know you have my best wishes as well!

[rested gal]

My doctor looked at my data a couple weeks ago - from my card, on the computer - not the printout. The RT told her that there was something she needed to see that couldn't be seen on the report. This is what she emailed me LAST Monday after reviewing it:

There is a definite pattern to your breathing at night. There are periods of increased minute ventilation that occurs about every 60- 90 minutes. Most times this is due to an increase in your own respiratory rate, not an increase in ventilator back up breaths. Based on the times these occur I think they are most likely related to REM sleep but I can't tell if what we are seeing is an effect of REM sleep since breathing is less regular during REM sleep or if you are waking up at the onset of REM sleep and that is what is causing the increased rate.

The first night you went to 16 there was a slight decrease in the variability but this was back the next day. I am not sure I can learn much more without actual observation in the sleep lab. We can match the settings you are on with our machine to try to figure out what is happening.

Okay -- I have complained about waking up almost every 60-90 minutes and she sees something going on. I know I'm going to have to submit to a sleep study if I want anything resolved and I understand that, but I'm waiting to talk to the RT. He was attending some kind of meeting where he said there would be other RT's and sleep techs and he was going to pick their brains about my case. Plus, I really want to see what he thinks about doing the study on another model ventilator that doesn't have AVAPS. He had made some specific comments and suggestions about the study and I NEED to speak with him BEFORE I schedule it.

The next quotes were from an earlier (Feb. 11, 2011) thread:

It's Not Going to Happen - I'm Really Stuck
topic started by Madalot - Feb 11, 2011
viewtopic.php?p=566318#p566318

Well, I got the news today that my sleep center is NOT going to get my ventilator. I wasn't told the reason, but I'm not stupid and have pretty much figured it out. It's not worth the expense to get a specific ventilator for ONE patient, especially if the insurance reimbursement for the study is so low.

If I want to have a study done, I have to use THEIR ventilator, which is different from mine and doesn't have AVAPS. Both my doctor and RT agree that while it might give us some insight as to what exactly is happening, using different equipment adds another variable to a situation that already has too many unknowns and variables.
--------------------------------
My RT told me that he is NOT ready to throw in the towel (Bless his heart -- he's a good egg). He said he's going to try talking to some other RT's and maybe sleep techs that he knows and see if any of them have any ideas or suggestions for what we can do.

But that's the deal -- no sleep study for Madalot any time soon.

_________________________________________

is there a possibility of bringing yours in to the study?

No. I've asked numerous times and they won't use it.

I've asked about sleep centers that MIGHT already be using it. According to my RT, not all sleep centers do ventilator studies, thus many don't have the equipment.

_________________________________________

AVAPS is not the only way to skin a cat, Madalot... And I think if you remove AVAPS from the equation, your ventilator can at least approximate those NPSG vent settings close enough. Thus you can at least walk away from the NPSG with SOME validated vent settings to try...

You can compare NPSG-approximated Trilogy settings against your former AVAPS settings. You and your MD (and/or RT) might THEN experimentally adjust your former AVAPS settings for additional comparison. I think that would be my own preference under the circumstances, Madalot. I'm pulling for you as always!

_________________________________________

Just my two cents... I believe -SWS understands the workings of your vent, Maddie, at least as well as your RT. If -SWS thinks NPSG (Nocturnal Polysomnography -- a sleep study) might be of benefit even if not using exactly the same kind of machine as yours, and even if it's on a machine that does not have AVAPS... well, I'd go for it.

That said, it infuriates me to think that the sleep center refuses to:
1. Bring in a machine with AVAPS just for your study.
Perhaps your doctor AND your RT could make a case to the manufacturer to supply an AVAPS machine and send personnel to assist the techs all night long during the study. The manufacturer is a VERY profitable company...surely, they could do this ONE TIME at no charge for this most unusual case. Or perhaps something like that has already been put forward to the sleep center as an option but was refused?

or

2. Use your machine for the study.
Again, perhaps getting the manufacturer to send people to help during the study.

I would think that given the uniqueness of your case, a really good sleep center would be willing to do one of those two things -- regardless of reimbursement concerns.

I would also think your pulmonologist, as respected as you've said she is, would be able to pull whatever strings necessary to get the sleep center to accept one of those options. As a pulmonologist, she refers a lot of business to that sleep center, I'd imagine. I'm sure your RT is trying every contact he has in the world of sleep centers. I'm sorry to say...I just wonder if the doctor is trying hard enough... pushing the sleep center hard enough...

Perhaps I'm expecting too much from the doctor. I'd certainly expect more cooperation from the sleep center if for no other reason than that you present such a very unusual, very complicated case. Could be quite a learning experience.

If I owned that sleep center, curiosity ALONE would make me bring you and your RT in there with YOUR machine or using an identical model machine...for an NPSG. Of course, if I owned any sleep center, I'd be out of business in a month!

Anyway, my little rant is over. For now.

Barring any change of heart by the sleep center or finding a more cooperative center, the next best thing probably would be to do as -SWS suggested here and twice in the other thread - viewtopic.php?p=566320#p566320
No wonder your doctor's comment resonated with him. He had already thought of it.

I would suggest taking the sleep study on the ventilator they have, Madalot. Then match your ventilator to those NPSG settings to gauge improvement---if any. Then experimentally add or compare AVAPS after factoring those PSG-determined changes toward the AVAPS settings...

Good luck!

Good luck, indeed, Maddie. Sorry you're going through so much.

[Slinky]

Maddie, RG's suggestion of contacting your ventilator's manufacturer about supplying "your" ventilator and a Rep experienced w/it is worth a try.

My sleep lab uses Respironics equipment, etc. when I talked to our local Resmed Rep at our local support group meetings about not being able to "tame" the abrupt pressure transition in straight bi-level mode on my VPAP Auto and asked him about any sleep labs in the area that used Resmed equipment there was only one at the time and none of their sleep docs were sleep pulmos. The Rep eventually offered to bring some Resmed equipment and attend a PSG at my sleep lab and "advise" if I really insisted on a Resmed titration. God bless his heart. You just might get as lucky!!! See what your RT thinks of THAT idea!!!

[Madalot]

I usually like to give each responder a personal reply, but that will make this thread so long, so I'm going to thank each of you individually in one line:

robysue, rosacer, Slinky, BlackSpinner, HoseCrusher (Yes, I did laugh -- 17!! I wish), DreamDiver, jbn3boys, Dori, mars, -SWS and rested gal --

My deepest thanks and gratitude to you all. Your support and kindness means a lot to me.

As far as the suggestions about my sleep lab getting the ventilator in, it's my understanding that it WAS offered to them, with in-service training AND assistance during the actual study. My sleep center refused, but since I wasn't privy to the conversations I don't know what was discussed. I DO know that my DME and RT are "upset" (I'm being nice here) about that because it doesn't make much sense, but I'm guessing the center has its reasons. This is one of the reasons I was holding off because the last I heard from my RT, he was trying to get more input from colleagues about possible settings to try BEFORE submitting to a study. Plus, the DME/RT were trying to figure out IF there was another sleep center that WOULD use my ventilator and if so, try to convince my doctor to accept a study from an alternate facility. I was waiting to hear on all of this, which is why I didn't do anything yet.

I'm tired of waiting. I'm sick of being patient. In truth, I'm pissed.

Laura, the time you took to get all that information and post it, reminding me of how many times -SWS suggested doing the study, despite it not being on my vent, gave me the kick I needed.

I am contacting my doctor today and telling her make the referral to get the ball rolling to do it. I'm still not 100% happy that I'm going to have to use another piece of equipment, but I have been waiting too long. It's time to just do it.

I'm still very frustrated, but at least I've made the decision to just do it and stop waiting. That's good I guess.

[jmcsmomma]

I am exhausted, weak, cranky (bitchy is more like it). My daughter looked at me this morning and informed me that something I asked her we had already discussed and said that my memory is going. Great. She thought it was funny. I don't see the humor in it.

I think/feel/believe that if we could get this damned vent set up better, some of these other issues *might* lessen or disappear.

I need this fixed, but am running out of patience.

Sorry -- This is a whiney vent (no pun intended).

I missed quoting the part where you have MD. My mom has MD, and other than being unable to walk for a long time, she had no complications until about a year ago. Long story short, her diaphram is paralyzed, and if she gets on her back to sleep, it nearly kills her, literally. Could you possibly have that beginning?