Did not get good news at Clinic

[chefdeborah]

I went to my first Clinic at Mayo yesterday (Thurs) down at Jax, FL and it was a great clinic! Everyone was so helpful and caring. But, I did not get good news. I was diagnosed in October. I went back in late November and had a visit and had my PEG put in.

Well since that time I have digressed a great deal. My left side is very much weaker than it was and my hands are getting weaker, especially my left. They said my speech was much, much worse and I had lost 10 more pounds (which I didn't care because I weigh too much anyway!) But, they fussed at me for not using the PEG enough.

I did not get even one "good" thing told to me. They said I would probably need to quit driving in a few months with my hands getting so much weaker. And, they gave me a cough assist. They also decided to put me on oxygen with my CPAP...or they are going to put me on a BiPAP with O2.

Have any of you ever heard of a Trilogy machine? They talked about that machine. It is a CPAP, BiPAP, and trach machine (can't remember what you call it) and you don't have to have a trach! They said that insurance wasn't covering a lot of them yet...and I don't know about Medicare either. But, I want one! One machine, everything included!

WEll, I have been a little down today, but one of my grandangels came to spend the night with me so we can clean all my chickens in my kitchen tomorrow! So, I will be working hard! They fussed at me about that too! Too much activity!

DRAT!:evil:

chefdeborah

 

[indigosd]

I am soul sorry. That is enough to make you feel a little down. Sending you hugs!

 

[handinhand]

I am so sorry for that news.. It is hard to hear these things and deal with for a few days after the appointments? I am truly sorry you have to be going through this. Sending hugs your way today, Linda

 

[Zaphoon]

Nothing like a "grandangel" to brighten the day!

 

[Ratman55]

Hello,
I'm sorry you got some bad news. I can certainly identify with weakness in the hands. My wife had dental surgery last week and I needed to drive her home afterward. We pretty much decided that was the last time I would get behind the wheel. You just go ahead and do things, as long as you can do them safely of course. Just remember, your most precious muscle is one in the center of your chest. I'm not a doctor but I detect no weakness in that one.--JK

 

[Twinsmom]

oh, Deborah...Thank God for your grandangel to help smooth the pain of a tough visit at Mayo. I'm so sorry you had so much reality thrown at you!

I agree with our beloved Ratman...the most valuable, powerful part of your body is holding you up strong!
Prayers for courage and grace!
Melody

 

[chefdeborah]

Thank you all for hovering around me when I got this news. I thank you very much!

deborah

 

[brooksea]

So sorry chef! Hang in there! But do whatever you feel you can while you can...at least that is my husband's motto.

 

[Blubear]

I am so sorry that your visit didnt go so well hun. I tried to look up the Triology machine and couldnt get a clear concise answer if it is in fact a machine that would alleviate the need to for a trach. I saw where Joelc was still recommending a trach/vent but there was no further elaboration on it. If anyone here knows what that machine is and if it does take away needing a trach, I too would love to know about it!
Hugs, Kari

 

[Blubear]

Okay I found it. Here is the web site for the Trilogy 100 that chef was talking about Trilogy100, Philips Respironics I have emailed them to get more info. I know my dad would probably like this, however I think I would prefer (if it were me) the Trach/Vent that Joelc loves so much. He does not have to wear a mask 24/7....

 

[CAHPAH]

Sorry that the news was not good but you do have a great clinic. I took my wife there two years ago for a second opinion after she got her diagnosis and we where very impressed with their professionalism and care. Wish they where closer then 18 hours away. Wishing nothing but good things for you. Jim

 

[sadiemae]

Deb, Hugs to you, thinking of good vibes for you. Lori

 

[joelc]

I just looked at the video of the Trilogy. It is an all-in-one device. (Bipap and ventilator)

Comparing it to my ventilator, it is;
Twice as big
Twice as heavy
Half the battery life

If you use a mask it is just another bipap machine. If you get a trache then it can be used as a ventilator.

 

[Blubear]

Oh thanks Joel, you pretty much answered my question on that one.
Hugs to ya, Kari

 

[irismarie]

darling DEb, so so so so sorry forall the bad news - thank Heaven you have a good clinic that is caring for you. LOads and loads of love come to you