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In a message dated 8/25/02 5:19:43 PM Pacific Daylight Time,

sisterslk@... writes:

<<

Can't wait to hear your good report! Hope you have

time for something fun on this trip also. >>

Well, I made it home and in one piece. It was a really long trip for me and

I'm really tired. LOL What else is new huh?

My report was really good. Everything is great. They did say I was over

doing it a bit. My sternum will take longer to heal with the pred and I

shouldn't be so impatient. They were sooooo happy to see my progress.

The surgeon, Dr. Bruce Reitz told me all about how my heart looked completely

different and how he had to modify the surgery for the RP. I asked him if

he would PLEASE write somthing for us. He thought really hard and then told

me yes, he would consider it and to write him a letter. LOL So I'm going to

write the letter this week. The cardiologist told me that maybe one of Dr.

Reitz's fellows would be interested in writing a paper on it and we could

actually use me as a case and it would be recorded in something. LOL SO...

you had better believe I will do everything I can to get all the info on the

heart valves and RP and get it officially documented.

Both drs agreed that RP is silent with the heart and that you don't need to

be flaring in the ear, nose, etc or have a high sed rate. That was amazing

in itself that they agreed. LOL They said it would be really important to

have an echocardiogram as a baseline and to keep watch for any changes. In

my case, there were no changes on the echo, but my symptoms got worse,

(shortness of breathe, rapid heart rate etc) and in this case they agreed

that an angiogram for the valves would be in order.

Like I said, I will try to get all the info in writing so we can use it. If

you do have any questions in this matter I'm sure you would be able to call

Dr. Reitz (or have your dr call him) and he would advise him of what he

found. They were really interested and I hope that with me being his first

RP patient, he will continue to be interested.

Well, I'm going to rest now, have to go tomorrow for more blood tests. I'm

just so happy that I'm doing as well as I am and I promise to slow down a

bit. and Rich made me write it in blood. LOL

I love you all and will get caught up with the messages soon.

Hugs

Marilyn, I'm sending in my money this week for the exercise. I have to wait

a while before I can start on the treadmill or drive yet.

Also, anyone who wants more brochures, please let me or Heidi know.

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Wow! What a great report! Now did you listen to the

part about not over-doing and being patient???? That

is so hard...especially when you are feeling better.

I really, really hope that your surgeon will write

something that we can show to our doctors. I think

that would be so valuable.

Well, I am going to go play with Cassandra and Logan

this morning. Friday is our regular play date, but

its a Remicade day this week. I'm having intense

spasms in my lower back this morning, so I won't be a

very fun playmate today. Good thing grandkids just

don't care...they love you no matter what.

Take care, , and keep getting better each day.

Love, squeek

> Well, I made it home and in one piece. It was a

> really long trip for me and

> I'm really tired. LOL What else is new huh?

>

> My report was really good. Everything is great.

> They did say I was over

> doing it a bit. My sternum will take longer to heal

> with the pred and I

> shouldn't be so impatient. They were sooooo happy

> to see my progress.

>

> The surgeon, Dr. Bruce Reitz told me all about how

> my heart looked completely

> different and how he had to modify the surgery for

> the RP. I asked him if

> he would PLEASE write somthing for us. He thought

> really hard and then told

> me yes, he would consider it and to write him a

> letter. LOL So I'm going to

> write the letter this week. The cardiologist told

> me that maybe one of Dr.

> Reitz's fellows would be interested in writing a

> paper on it and we could

> actually use me as a case and it would be recorded

> in something. LOL SO...

> you had better believe I will do everything I can to

> get all the info on the

> heart valves and RP and get it officially

> documented.

>

> Both drs agreed that RP is silent with the heart and

> that you don't need to

> be flaring in the ear, nose, etc or have a high sed

> rate. That was amazing

> in itself that they agreed. LOL They said it would

> be really important to

> have an echocardiogram as a baseline and to keep

> watch for any changes. In

> my case, there were no changes on the echo, but my

> symptoms got worse,

> (shortness of breathe, rapid heart rate etc) and in

> this case they agreed

> that an angiogram for the valves would be in order.

>

>

> Like I said, I will try to get all the info in

> writing so we can use it. If

> you do have any questions in this matter I'm sure

> you would be able to call

> Dr. Reitz (or have your dr call him) and he would

> advise him of what he

> found. They were really interested and I hope that

> with me being his first

> RP patient, he will continue to be interested.

> Hugs

>

=====

__________________________________________________

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In a message dated 8/28/02 8:37:10 AM Pacific Daylight Time,

sisterslk@... writes:

<< Wow! What a great report! Now did you listen to the

part about not over-doing and being patient???? That

is so hard...especially when you are feeling better.

I really, really hope that your surgeon will write

something that we can show to our doctors. I think

that would be so valuable.

>>

Squeek, Yes, I am going to listen. Today my body is telling me " OUCH " . LOL

I am really tired from the past few days and have promised my family and

myself to go at a slower pace. I will heal faster and not have any more set

backs. " Listen to your body " ... I think this is the most important thing we

can do and now I will take my own advise. LOL

Yes, I'm going to write to the surgeon with a written request and if I get no

answers, I will keep writting. If nothing then I will send all of you his

address and you can all write to him too. This is VERY important that we

have this documentation. Dr. Buckner and the other drs. need to see this.

Dr. B told me that RP probably played no part in my valve involvement and I

think she should be aware that it is. I just want " official " documentation

on what he saw inside of me. After all... it was my heart he was holding in

his hands and I should be able to have in writing what he found. LOL Don't

you all agree??? LOL

I'm off to take a short nap and recoup. I sure am glad to be able to be on

line more. If you don't hear from me every day ( yeah like that will happen

lol ) don't worry, i'm just resting.

I love ya all bunches.

hugs

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