Deleted

jules wrote:I also do not know of any deleted posts here just those madalot edited to say deleted (and perhaps dreamstalker did the same on one post).

Just if someone wants to throw out barbs that SAG / Muffy is abusive, they need to be aware that he was one who deleted abusive posts aimed at akcpapguy by a deceased forum member.

DreamStalker wrote:I confess. Though my post was 100% in jest (ie. the post never had anything to delete).

DreamStalker wrote:
I confess. Though my post was 100% in jest (ie. the post never had anything to delete).

akcpapguy wrote:Yup I remember that well Jules.......I guess I'm just seeing the abusive post here. What I, and i'll repeat I see is SAG asking for more specifics about Madalot's condition and tests she has had done before he could give a more professional answer. I happen to agree with him, based on the information that was given any advice from SAG would have been illinformed conjecture and guessing, both of which Madalot has been the subject of plenty long from her providers already. I believe it was SAG's wasy of trying to spur Madalot into pressing her Physician and other caregivers into involving her in the diagnostic side of things, not just in the treatment phase. I understand her reluctance in confronting her Physician for fear of being "fired" as a patient, however sometimes that is what is needed.

jules wrote:- Oh jeff? where are you?

Madalot wrote:To Muffy --

I am very sorry if I have come off as ungrateful to you. I realize you have taken a tremendous amount of time and effort to try to figure out my situation. I am appreciative of the effort you have made.

The persistence with which you requested information -- frightened me. I'm sure that was not your intention, but that is the truth. I have never been extremely comfortable giving much personal information or details on the internet and the manner in which you were asking just freaked me out. And when you consider how unusual my circumstances are (at least right now in this forum) I became fearful that the "wrong" people might see and my situation would get even worse than it is now.

But please know that I DO realize you were trying to help and perhaps PUSH me into taking more control of my situation.

And I had no intention of causing a "war" on this board.

Muffy -- I do thank you for what you've done. If I decide to post more specifics about my situation, you can reply or ignore, whichever is more appropriate for you. I understand either way.

I'm sorry for coming off as ungrateful. I was always appreciative of the input and suggestions. I just got spooked by the forceful nature in which some of the input was received.

rested gal wrote:Kathy, I was sorry to see that you deleted all your posts.

From my PM to you on February 17 --
"Anyway, with a nickname like "Muffy" and that cartoonish avatar he uses, it would be easy to think he's just another poster. But he is an expert on respiratory matters and the machines. He also has posted in the past under the nickname "StillAnotherGuest." ...
I have the advantage of having met "Muffy." I know how much he has helped me, and how much he's...he...him...his.

Patrick A wrote:Did I miss something? Or have I been drink too much coffee???

Muffy wrote:LOL! Well, I guess if Rested Gal tells you something twice, she must think it's important!

Again, with the data you have presented thus far (which is admittedly sparse), you may not even qualify for the Trilogy.

However, in a somewhat syllogistic arguement, the fact that you are on a ventilator suggests you may have very significant pulmonary involvement.

Madalot wrote:As far as the comment about significant pulmonary involvement, I think that is what both my doctor and DME are looking at. It's very difficult for me to get them to explain everything to me in a way that I can relate here to have it all make sense. But based on my call to my doctor this morning, she was firm in saying that I already qualify for the vent. I wish I had the understanding, and vocabulary, to express why she said that. But I trust her to know what she's doing.

As far as the DME -- I was talking to my sister and she expressed what is happening fairly succinctly -- my DME and RT are kind of new at this and my case is a little unusual and not really easy to figure out and treat. So, I'm kind of like a guinea pig in that they're just not totally sure what I need and so it's hard to give it to me. On top of this, my DME seems to be very, very busy and I think they've got more business than they can easily handle right now. And because my situation is complicated, it requires more time and attention than they can easily provide for me.

But they really are trying. I think they are making me as much a #1 priority as they can and NOT totally ignore their other patients.

As it stands right now -- my RT has an idea about what she wants to do. She has spoken to my doctor who has requested a written request with specific settings so she can review them before agreeing to them. My RT was in the car when she called to tell me this and said she would try to get the information down on paper and faxed to my doctor within 1.5 to 2 hours. That puts us at 2:00. At that point, she has to wait for my doctor to review them and let them know if she's okaying those changes. And if she takes too long to get that (the owner of the DME will NOT make the changes without written approval from the doctor), this will have to wait until next week to get the changes made.

But -- I'm okay and as okay with this as I can be. I'm back in my "I'm just not going to get upset" mode, which is an easier place for me to be.

Edited to add: I had asked my doctor if having the ventilator would qualify me for emergency status with the power company. During that huge winter storm, we were without power for 40+ hours. I sent her the form to complete and got it back in the mail today. She completed it and sent it on and here's what it said:
Diagnosis: Limb-Girdle Muscular Dystrophy (which is the correct CURRENT diagnosis).
Length of time equipment will be required: Lifetime.
Comments: Ventilator use at night for respiratory failure.

I have a hard time believing she would say this if they did not have the proper documentation to back that up.

Madalot wrote:

Muffy wrote:Well, "IMHO", you need objective data to show disease progression, like deteriorating pulmonary function testing, arterial blood gases and/or measures of inspiratory/expiratory strength. If all those are in within normal limits, I don't see how they can say you're deteriorating from a pulmonary point of view.

In re: the oxygen thing, if they did not see if the low baseline could be corrected by supplemental oxygen, I would question that from both a clincial appropriateness and reimbursement point of view.

Muffy

Madalot wrote:When I was referencing disease progression, I was referring to the muscle weakness that affects my legs, arms and eyes. I didn't notice any breathing issues whatsoever until last summer and it was just difficulty breathing when laying down to go to sleep. Because it was becoming more regular and I was noticing it more, I mentioned it to my neurologist, who referred me for a pulmonary evaluation. The testing in her office DID show reduced capacity, but it was only slightly below normal.

Madalot wrote:But when a comment is made that based on MY comments, I don't qualify for the equipment I'm getting, it frightens me. So, I question my doctor about it. And my doctor has told me, without any doubt, that I DO qualify for this equipment. So, based on comments here, I question a little further about the actual medical documentation to back that up. Now, I've done pissed her off, but being professional, she decides to let it go and simply answers my question saying "Yes, you do not need to be concerned about that."