Turning Point - Took a While, But I'm There

To be clear, I am wondering about your trying another brand, not just another mode with your present brand.

jnk wrote:To be clear, I am wondering about your trying another brand, not just another mode with your present brand.

That's something I can inquire about, but that would take me some time to accomplish, especially considering this whole change of DME situation. My DME sold out almost 6 weeks ago, but it isn't OFFICIAL until Monday. I already know that the new company did NOT get the full, accurate information about my case.

I thought that perhaps attempting it on the Trilogy, for a day or so, might be worth an attempt.

In truth, I would LOVE to find myself a used VPAP for my afternoon recliner naps. I THINK the vpap would work well enough since the PR System One was able to sense my breathing MOST of the time. The M series couldn't recognize my breathing awake and sitting up, but I've been told by a respected forum member that the VPAP should do as well, if not better, than the System One.

I hear you though, jnk. Got it.

jnk wrote:To be clear, I am wondering about your trying another brand, not just another mode with your present brand.

I definitely hear this and it is on my "list" of things to think about/ask about/try when I can.

In the interim, my doctor has approved me turning off AVAPS and running the Trilogy in Bipap S/T mode for a night or two. She did specify that she expects me to use the pulse ox monitor to watch for desaturations (and obviously turn AVAPS back on if I desat). She didn't give me an IPAP, so I'm not sure where to set that. My minimum is 13 now, but with AVAPS, it goes up to between 14 - 16 as soon as I'm asleep, but that may be just to maintain the tidal volume.

I'm thinking of setting it to either 14 or 15 for this...

Ideally, your RT would suggest a delta.

But you knew that.

jnk wrote:Ideally, your RT would suggest a delta.

But you knew that.

Yeah, but I've been flying solo (so to speak) for so long, I'm kind of used to doing it on my own! It will be refreshing to have access to an RT on a regular basis. I'm not sure I'll know how to act!

My doctor doesn't seem overly concerned about my trying this, but then again, she didn't seem too enthusiastic that it would do anything either. I think she's out of ideas and if I pose something to her that isn't overly dangerous or reckless (and promise to behave and take certain precautions), she's okay with trying anything reasonable if it will make me happier.

Hard to say though -- she's a very tough read. I'm going to see how I feel tonight and if I'm not up to it, I'll leave the settings as is and not worry about it.

I know what you mean about your Dr being out of ideas. We're starting to do that dance too. Mike's wound has still not healed(almost 4months and still 2" deep). I know he's contemplating more surgery but is agreeing to try different approaches that seem harmless but satisfy my need to try anything new as he's watching us both wearing down. Nothing earth-shattering, just a different cleansing/packing method, additional vitamin supplements said to improve wound healing, office visits 3x/weekly for his professional wound care, and setting up a consult with a Urologist (another problem he thinks may be hindering healing). So on and on it goes!

DoriC wrote:I know what you mean about your Dr being out of ideas. We're starting to do that dance too. Mike's wound has still not healed(almost 4months and still 2" deep). I know he's contemplating more surgery but is agreeing to try different approaches that seem harmless but satisfy my need to try anything new as he's watching us both wearing down. Nothing earth-shattering, just a different cleansing/packing method, additional vitamin supplements said to improve wound healing, office visits 3x/weekly for his professional wound care, and setting up a consult with a Urologist (another problem he thinks may be hindering healing). So on and on it goes!

Oh Dori -- I am so sorry. I hope they can figure something out...

DoriC wrote:Mike's wound has still not healed(almost 4months and still 2" deep).

What kind of wound is it? Does it qualify for Hyperbaric Oxygen Therapy?

DoriC wrote:I know what you mean about your Dr being out of ideas. We're starting to do that dance too. Mike's wound has still not healed(almost 4months and still 2" deep). I know he's contemplating more surgery but is agreeing to try different approaches that seem harmless but satisfy my need to try anything new as he's watching us both wearing down. Nothing earth-shattering, just a different cleansing/packing method, additional vitamin supplements said to improve wound healing, office visits 3x/weekly for his professional wound care, and setting up a consult with a Urologist (another problem he thinks may be hindering healing). So on and on it goes!

One of the things my former RT (he's not working with me anymore OFFICIALLY because of the sale of the DME) kept reminding me is that Medicine is an Art, based on Science.

Sometimes, things just go in a way that the medical community runs out of ideas on how to resolve it. We had a friend once with a wound thing that just wouldn't heal. Sounds a like like what's happening to Mike.

I am so sorry Dori. I hope somebody comes up with something that can help --

I'm sorry to hear you're still struggling with this, Dori. Hopefully you've got good doctors on board that know a lot about this. Sometimes a major trauma center that deals with lots of wounds and burns are good at this type of thing. In places I've lived that is often the County hospital, and even though some of them have not been aesthetically impressive, they have the best care for this type of thing.

NotMuffy wrote:

DoriC wrote:Mike's wound has still not healed(almost 4months and still 2" deep).

What kind of wound is it? Does it qualify for Hyperbaric Oxygen Therapy?

Hi NM, That was a question my son brought up with the Dr(great minds think alike),but Mike is not a candidate for several medical reasons, one is that he has ear nerve damage(another war injury) that required invasive surgery and reconstruction and might cause problems in the chamber, and the other is that 2 benign calcified pulmonary lesions were discovered on a routine chest xray and confirmed by ultrasound which rules him out as well. He has other medical conditions that also disqualify him. I just started researching laser therapy, do you have any thoughts on that?

SU, I've been trying not to face that thought because it involves extensive travel and total exhaustion for us. Mike can't drive right now and I only do local driving(which I hate). My kids don't live nearby and long distance car service for multiple visits would be impossible for us to manage. The other problem is that Mike is intensely devoted to his Doctors and doesn't want to "betray" or "insult" them in any way. We saw the surgeon yesterday and he thought it was a bit smaller with no visible infection. Our appt with a urologist Tues may give us some more answers. So we're not giving up hope yet.

DoriC wrote:SU, I've been trying not to face that thought because it involves extensive travel and total exhaustion for us. Mike can't drive right now and I only do local driving(which I hate). My kids don't live nearby and long distance car service for multiple visits would be impossible for us to manage. The other problem is that Mike is intensely devoted to his Doctors and doesn't want to "betray" or "insult" them in any way. We saw the surgeon yesterday and he thought it was a bit smaller with no visible infection. Our appt with a urologist Tues may give us some more answers. So we're not giving up hope yet.

I am so sorry, Dori. You've got a very difficult situation on your hands.

As far as Mike being devoted to his doctors, my father was that way too. He had a cardiologist that he loved and stuck with through anything and everything. Sometimes that's good, but sometimes it's not so good. Getting more input isn't saying anything bad about the current doctor. Sometimes situations get so complex and the person working on it (even a doctor) can get muddled down and miss something that a fresh pair of eyes might see.

I am sending positive thoughts and vibes that Mike will start healing better. I wish there was something we could do to help you Dori.

I worked for many doctors during my career, some were fine with a "second opinion" and some not so fine at all. You're dealing with some big egos in this profession. During one of Mike's emergency surgeries, our beloved surgeon was on vacation and we used another surgeon who had scrubbed in with our Dr S on one of Mike's previous surgeries. This Dr used the wound VAC therapy in a rehab hospital setting where Mike was "imprisoned" for 3 wks with sub-optimal nursing care unless I was there. When our own surgeon returned during that time, he was distressed that we weren't coming back to him for followup treatment. He wasn't a fan of the VAC in Mike's situation(he had explained his views about the VAC previously),and he definitely didn't like the idea of a rehab facility for him where infections are rampant. When the VAC didn't work and actually got worse when he got reinfected with a fungal infection, he was happy to have us return to him with hat in hand and Mike was ecstatic. He was able to cure the fungal infection and eventually the wound closed and we got another 2 years out of it. Allowing me to vent my situation is a big help Maddy, as you know so well.

DoriC wrote:I worked for many doctors during my career, some were fine with a "second opinion" and some not so fine at all. You're dealing with some big egos in this profession. During one of Mike's emergency surgeries, our beloved surgeon was on vacation and we used another surgeon who had scrubbed in with our Dr S on one of Mike's previous surgeries. This Dr used the wound VAC therapy in a rehab hospital setting where Mike was "imprisoned" for 3 wks with sub-optimal nursing care unless I was there. When our own surgeon returned during that time, he was distressed that we weren't coming back to him for followup treatment. He wasn't a fan of the VAC in Mike's situation(he had explained his views about the VAC previously),and he definitely didn't like the idea of a rehab facility for him where infections are rampant. When the VAC didn't work and actually got worse when he got reinfected with a fungal infection, he was happy to have us return to him with hat in hand and Mike was ecstatic. He was able to cure the fungal infection and eventually the wound closed and we got another 2 years out of it. Allowing me to vent my situation is a big help Maddy, as you know so well.

I'm having a hard time interpreting this, Dori. I'm not sure if you're upset with me or not, but if I upset you, I'm sorry. You should be able to vent and if I came off as being judgmental of you or Mike, I'm sorry. I assure you it was not my intention.

Maybe I'm misinterpreting what you mean, but for some reason, I really can't tell.

Not trying to speak for Dori, but I didn't take Dori's post as being upset with you in any way, Maddie. I took this...

DoriC wrote:Allowing me to vent my situation is a big help Maddy, as you know so well.

....as being Dori expressing gratitude to you for not minding that she was writing about Mike's wound problem in the middle of your topic about a sleep problem.

The "as you know so well" wasn't snippy at all (as I read it) -- was just mentioning a fact of life -- that we all sometimes get some emotional relief by "venting" about things that bother us. I think Dori was just politely thanking you for being supportive of her feelings about Mike's situation. And was saying she knew you would understand that it helped her to do that in your thread, since you understand the value/relief we all get by "venting" occasionally.