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expat
Unread post  Post subject: Sorry to sound like a FaceBook status, but, it's Complicated  |  Posted: Wed Jul 15, 2015 5:29 pm

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Newbie here, and I am not the patient, my totally reluctant Husband is.

In his defense, he has been through a lot over the last 30 years. I think he ought to be tested for sleep apnea, he doesn't want anything to do with hospitals or Docs.

To back up a bit and give a bit of hx, he is a former Marine, stationed at Camp Lejeune, where he was exposed to contaminated water. He developed oral cancer, and in 1984 had an open neck dissection. He had a hemi glossectomy, partial mandibulectomy, lost a great deal of muscle and tissue, his carotid artery and jugular vein on the affected side. No chemo, but plenty of radiation. No taste buds or salivary glands survived. Told he wouldn't be able to talk (he does) or swallow very well ( he does) and at best he had 6 months left, and to go off and get his stuff sorted. He had no reconstruction, none was in fact, on offer.

25 years later, he was still ticking over, but a lot of little issues he was putting down to post operative "it's just stuff" started to mount up. I got him signed up for health care at the VA, and that was when we discovered he had Hep-C, probably the result of those long ago transfusions. A year after that, some bright spark at the VA thought he made an excellent candidate for triple therapy, even though his crappy labs should have ruled him out, and in less than 5 weeks he had decompensated into total liver failure.

So. We were airlifted to the nearest transplant center for evaluation, he was listed with UNOS with a MELD of 38. They kept him in hospital while we waited, and nearly 4 weeks later a suitable donor was found. Bless his heart.

He had a complicated recovery, apart from being so debilitated; a conscious VF arrest, bile leaks, an infection, pneumonia, an embolis, 4 weeks in ICU, and a total of 4.5 months as an inpatient in total. His post transplant diabetes looks to be permanent. He was also found to have autonomic dysreflexia, likely to do old damage or loss of the baroreceptors. Some of his BP swings are amazing, over 20 minutes he can go from 220/120 to 80/40. That's pretty much sorted, with meds. In fact most of all of this is sorted.

He has just completed 24 weeks of Harvoni, and is waiting for a couple of months for another viral load, he is presently undected for Hep-C.

He has been terribly fatigued the last few years, now walks with a stick, and I think a lot of his daytime tiredness is coming from his poor sleep quality. He has cheyne stokes respiration, I would think at a rough count he doesn't appear to breathe at all for 30-45 seconds, and then he starts the cycle all over again. This goes on all night long, and as well in the afternoons when he naps. I don't think it can be obstructive, as the third of his tongue that remains is tethered to the inside of his cheek, and while he is a difficult intubation, done with camera, he has a decent airway. He does not snore, I don't believe he actually physically can.

The problems are, first I believe he would be difficult to fit with any sort of a decent seal, because of his altered anatomy, and he states, categorically, he doesn't want to spend a night in the sleep lab, he doesn't want to have to wear a mask. He has an appointment with his PCP in two weeks, and I am going to try my utmost to get him to agree to at least talk to the Doc about it. I think what put the tin hat on it, for me at least, is that over the last couple of days, he has nodded off while sitting in front of his computer. Sound asleep.

Provided I can get any sort of advice on how to proceed, is it even possible to do something for him? I hesitate myself on having him go through so much as an unnecessary lab draw. I guess I am grappling with the age old question, does the benefit outweigh maintaining the status quo.


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TheLankyLefty
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Tue Jul 21, 2015 10:54 pm
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Nice to meet you expat. Sorry to hear about this. Here is what I boil it all down to......

expat wrote:
Provided I can get any sort of advice on how to proceed, is it even possible to do something for him?


No, because of this....

expat wrote:
he states, categorically, he doesn't want to spend a night in the sleep lab, he doesn't want to have to wear a mask.


I think he probably does have sleep apnea, most likely obstructive but who knows. I've seen this scenario so many times unfortunately. If he doesn't want to be helped, he'll find ways to not be helped.

Have one last "Come to Jesus" talk with him armed with everything you can. Lay it all how about how much he means to you (since I can tell he means the world to you). Why it will be good, why the mask isn't really that big a deal at all etc.... Get him to really listen. Once you lay it all out there you have to listen to him and accept what he says.

I really wish you the best of luck with this an would love to hear how it goes.

(Sorry for the late reply...very busy lately)

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Ailu
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Fri Jul 24, 2015 7:03 am
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Expat, sent you a PM for encouragement! Wishing you all the best!

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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Fri Jul 24, 2015 6:34 pm

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Thanks for that you two. I'll have another go. I'm stubborn that way. I'll let you know how it goes.


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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sun Apr 09, 2017 10:39 am

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Well, that only took....forever. He's agreed to go. He has an appointment at the VA tomorrow night at 20:30. He's only agreed to go with the provision that I go as well. I've rung them, and given his many issues, they say they are cool with that.
I'll update once that's over. I've read both good and bad things about the equipment the VA provides, and I still don't know how they are going to get a mask to fit and provide any sort of seal, if he needs one. We will see how we go.


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diamaunt
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sun Apr 09, 2017 3:10 pm
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good luck!

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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Wed Apr 12, 2017 5:00 pm

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Well, that went better than I'd hoped. The tech said she'd never had a patient to test like him before, with his anatomy the way it is.

I don't have any numbers at all yet, being the VA I have to get those results in three days from the ROI office. They may appear in the online notes, but those being updated in any sort of a timely way is pretty hit or miss. The Tech won't give you squat.
He fell asleep in under five minutes, and didn't toss or turn at all. The Tech had said they would watch and record for two hours, and if he didn't exhibit apnea, they would let him be. She was back in the room in well less than that.

He asked if she had seen him not breathing, and she said oh yes. Many times. Many many times.
So the rest of the night was spent trying masks.

First, the ResMed Swift FX. He liked it, but it was really painful immediately in and under his nose. He stuck with it for an hour, but in the end it only seemed to get worse.

The next one was the ResMed Quattro FX. He liked it better because he said it felt more comfortable, it didn't matter if his mouth was open as much, but the Tech could not get a decent seal. He never did try and sleep with it, the leaks were too bad.

The last one they had him try, was the Phillips Respironics Wisp. He spent the rest of the study in that, but could not fall asleep. He said he found it hard to exhale against the pressure, and of course the instant his mouth fell open the machine would start wooshing and he was yanked awake.

They usually send you away with the headgear, tubing and mask they felt worked best for you. She was leaning towards the Wisp. In this case, the Tech didn't know which to give him, so we brought the three home.

At some stage, we will have followup at the VA with the Doc. She said he clearly needs CPAP, but thinks there are going to be big issues, perhaps insurmountable ones, in trying to fit him.

Given the old hemi mandibulectomy, as soon as he relaxes, the remaining lower jaw drops, and his mouth falls open. He never did get more than the hour and a half sleep before he started trying out masks.

He has been hunting around online, and was all excited to tell me he'd found a really cool guy I should watch. TheLankyLefty27!! Really, I've been subscribed to that channel for a couple of years :)

He likes the Philips Respironics DreamWear nasal CPAP Mask, for one thing there are no nasal prongs, and also that the attachment is on top, not dragging on the front. It's anyone's guess if the VA will spring for that. We may be on our own buying that, if I can find a source for it. I don't know how we're going to get around the mouth breathing issue, though. He's says he's happy to try out the soft collar, or a chin strap, but thinks the tape idea won't fly. He has a beard, which helps to camouflage the deficit in the jaw, and would not want to give that up.

Once I can get my hands on the report, I will let you know what it says. Still, it's progress. I am encouraged that he is at least now willing to give it a go.


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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Thu Apr 27, 2017 2:54 pm

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We met with the Doc at the VA sleep clinic today. And five others, ENT being well represented. It's always a little off-putting for him, when they show up in their numbers, it makes him feel a bit of a prize pig on display. It seems old head and neck's are a bit thin on the ground.

I think they were very good with him though. They had a lot of questions relating to his remote surgery, and also in regard to his transplant surgery.

The plan is no CPAP for now. Instead, they want to try supplemental O2 at night. They also want to scope his airway, which he isn't dead keen on, to look for radiation damage. The 7 CT's and swallow studies done over the last five years won't do. He is iffy on going for that. The thought of anyone fiddling around in his airway makes him a bit panicky.

I've got some numbers, not the entire thing as that is a few days off in VISTA. I will email his transplant Doc tonight, he can usually shake things loose a bit faster than I am able to do. I will copy what I've got here.

Baseline Phase
Total recording time was 2 hours and 18 minutes.
The patient spent 32 minutes in stage N1 , 61.5 minutes in stage N2, 7 minutes in stage N3, and 0.5 minutes in stage REM with a total sleep time of 1 hour and 41 minutes.

There were 78 respiratory arousals, 0 snore arousals, 0 periodic limb movement arousals, and 0 spontaneous arousals with a total arousal index of 46.3 during baseline.

Respiratory events showed 0 central apneas, 1 obstructive apnea, 77 mixed apneas and 0 hypopneas.

The total AHI was 46.34 per hour, supine AHI was 0.00 per hour, side AHI was 46.04 and REM was 120.00

During the baseline phase SpO2 nadir was 88% and the patient spent 0 minutes of sleep time with O2 sats of less than 90%.

CPAP Phase
Total recording time of 5 hours and 18 minutes. Total sleep time was 0 hours and 26 minutes.
The patient spent 24.5 in stage N1, 1.5 minutes in stage N2, 0 minutes in Stage N3 and 0 minutes in stage REM. REM/supine did not occur on PAP.
There were 19 respiratory arousals, 0 snore arousals, 0 periodic limb movement arousals, and 16 spontaneous arousals.

Nasal PAP titration was initiated at 5cm of H20 and titrated up to 6cms, then BPAP 10/6 to 15/11 of H2O. Optimal pressure was indeterminate due to lack of seal from facial/jaw defect. At this pressure, the AHI 13-120 per hour. Total leakage ranges from 25-137 lpm with trials of nasal pillow, nasal mask(Wisp) and FFM (Quattro FX).

Impression:

Obstructive Sleep Apnea appears severe in mixed apnea form and failed to respond to PAP due to persistent leak with all 3 types of interfaces due to facial/ jaw defect.

Recommendations

"Discuss patient's willingness to troubleshoot PAP given that he had end-expiratory pressure intolerance to CPAP and BPAP and the possibility we may not be able to minimize leak.

Palliative O2 therapy might reduce central apnea component of the mixed apneas and keep him better oxygenated but will probably not reduce the obstructive component".


That's where the info ends. I'd be very interested in comments or suggestions. I admit most of what this all means is lost on me.


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cindyY
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sun Apr 30, 2017 5:04 pm

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Hi expat, first, I would like to thank you and your husband for his service and sacrifices, the mind boggles. I am brand new to bilevel PAP therapy, but I have looked at tons of masks online. On cpap.com, I've seen a mask that covers the whole face. I wonder if that would be something your husband could use? It's called a Total Face Mask, and they actually show two options. They don't look any more expensive than other types of masks, if that's a concern. Hope this helps you. Good luck, and let us know how you both go on.


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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sun Apr 30, 2017 5:48 pm

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Thank you cindyY. I had a look at that one, but it won't get around the problem of not being able to get a seal. He hasn't got a lower jaw on the left side.


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cindyY
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sun Apr 30, 2017 5:57 pm

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Any chance an appliance could be made to fill the gap and create a seal? Or barring that, how about something like a really thick pillow-like mask liner for just there? Know anyone that sews?


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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Wed May 10, 2017 10:51 am

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We did discuss this, and they felt it would not assist.


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Demmom
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sat May 13, 2017 10:21 pm

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I have found that the Amara View FFM has stopped my Large Mask Leaks caused by chin drop. It is a cushion under the nose so there is no contact required. The mask is fairly flexible which allows me to adjust it snugly which holds my chin in place and prevents the chin drop from breaking the mask seal. The mask has a very small surface area around the mouth and nose.


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sjbowlen
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sat May 20, 2017 4:30 pm

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I agree with cindyY, that an appliance might be built for him. The VA has labs for that and may be willing to explore that option. My hubby is totally reliant on his Mirage Activa LT which has a seal that really works well via suction. That may be an option. If he goes with a nasal mask, he might have to use some sort of chin strap to keep his mouth shut. God bless him, and you , for his service. I hope the solutions come pouring in.


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expat
Unread post  Post subject: Re: Sorry to sound like a FaceBook status, but, it's Complic  |  Posted: Sat May 20, 2017 5:23 pm

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The VA delivered an O2 concentrator here yesterday. They say they cannot fit him for C-PAP. They are of the opinion that with the O2 his sats won't drop into the low 80's, as they have been. As far as the apnea, that will remain untreated as far as they are concerned.


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