Barry~ Questions , Cardiomyopathy ?

[Guest guest]

Tonya,

I am so sorry you are going through all of this right now. I

wish I had some words of wisdom or could be of help at this point, but I

don't. I will be keeping you, Barry and your family in my thoughts and

prayers.

Hugs,

a

On Tue, 24 Aug 2004 07:05:39 -0700 (PDT) Maddie Green

ladymaddie@...> writes:

Hello everyone,

I have been reading emails as I can and watching the

posts come in from everyone. IM sorry my responses

are not many, right now we are in a very progressive

state of Cardiomyopathy for Barry.

His heart rate is now being effected severely and his

breathing ceases as does his heart. He is complaining

of rapid constant heartbeat and can feel the pain in

his body pulsate with every beat of his heart. Sleep

is no longer something that is easy for him, he is in

fear he wont wake up.

Walking more then 5 or 6 steps is no longer something

he can do. Forget the muscle weakness, its all in the

heart and anything that effects the heart rate, puts

him onto the ground with complete respiratory failure.

Unable to breathe and completely unconscious, leaving

me or the children (if IM not here) to perform our

various duties of resuscitation to bring him back.

Last night was different. He collapsed coming from

the bathroom and I couldn't get him back. He was blue

with his eyes rolled into the back of his head and

motionless. I called out to the kids to come help me,

and after working on him for what seemed to be

forever, he gasped deep and then stopped breathing

again. After a few more minutes of chest comparisons

and mouth to mouth breathing for him as a team the

three of us were able to get him back. I have to

resuscitate him when this happens as we have a DNR

order that is posted on our refrigerator so if IM not

here the paramedics know that he wishes to not be on

life support and no measures are to be taken to

sustain his life.

We are in the final stages and although he appears to

look good still when sitting at rest, Mito pops its

ugly face up daily and stares at us.

He has given into this disease and I am so mad at this

monster for doing this to him.

I want him to die at home, with me, I don't want him

to be alone. This has become very hard for me. For

those of you who know me on a personal level, you know

I am in my last 18 months of nursing school. I just

left my full-time job for reasons of my own personal

safety. Now I am starting work at a friends Bar to

waitress and bartered a few nights a week for extra

cash. Barrry's medication is over $1000.00 a month

now and without him being covered under any

prescription coverage, this is impossible for me to

survive without my income.

I have been searching the web sites for Muscular

Dystrophy and can't find anything that can help me pin

point what to look for when it comes to

respitory/heart failure in this disease. The articles

all mention it, but nothing can tell me what to

expect. All of his Drs. just tell me this is a slow

miserable death for him. I don't want him to be

miserable and I want to keep him comfortable through

this. I did read somewhere that with this cardio

conduction block sometimes a pace maker can be used to

help slow the heart to a regular beat. If anybody has

any info on what I can do to keep him more comfortable

and maybe some reading material on this part of

progression it would be really appreciated.

Thanks Again,

Tonya

Ps......I contacted Hospice and because he is not bed

ridden no help can be offered right now. Any place

else I can call for in home care that is covered by

Medicare Disability? Semester starts Sept 2 for me

and the kids won't be here to help him, and I dont

know what to do.