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[Guest guest]

In a message dated 8/12/01 2:17:53 PM Eastern Daylight Time,

duodenalswitch writes:

<< But after

lurking on this site for quite a while I have to say that the only

education that is accepted here is the main school of thought >>

I don't agree. If that were true, this subject would not even be discussed.

Anyway, I have learned more about DS from this list than any others I am on.

I also learned a great deal from printing out and reading all the pages on

the

web site here. I found it very sobering, and informative on top of

everything else I have learned.

http://www.pacificsurgery.com/For_Patients/walletcafor_patients.html

Also, as I mentioned in my previous post, Dr. Anthone said that patients who

can walk into surgery have a better chance of walking out of surgery. Larry

had limited mobility. That would have been a warning signal to Dr. Anthone,

and probably lots of others.

No matter how much we read of know, none of us can be sure of the outcome of

any surgery. If we don't have DS, who knows, maybe some will be having open

heart surgery (performed in an emergency situation) - no guarantees there,

either.

No guarantees with ANY surgery. I guess we all have to be willing to take

the risks or not and make our own decisions. But if anything this list has

helped me to understand the risks involved.

Carole

[Guest guest]

Aletta,

My name is Ramm. I've been with the group from the beginning .....since 95.

You need to remember that the list is a forum and everything can be discussed on it. I haven't been able to keep with all the mail but I did read your goodbye letter and it saddens me that you are leaving.

My husband has been sick for a very long time and you can't imagine what help all the information has been. I have used this information to help Dan through these past few years and without it he'd been dead a long time ago, He fought this and fought that , he's been remarkable. That's what he wanted to do and he got that opportunity. Unfortunately he only has a few more days on this earth.......and you know what! he's still trying to beat it. I've asked the doctor's to give him till Wednesday. If dialysis doesn't work and his kidneys don't start functioning. ...then it's time to give up. Sepsis, generally win's. That's what took Lita's Ralph last year.

You need to refocus and remember that there is no set pattern for this disease........it takes a different course with each person that is afflicted with it.

What ever you have going on with Bill.....well he can be a little rigid and overbearing. he does mean well and he's been a blessing to the group. He's a friend of mine. I used to live in the DC area and me, Lita and Bill would go out to lunch occasionally. Discuss things, argue, cry, laugh. We three have a shy dragger connection. My Dan is still here. Bill lost Charlotte last year and Lita lost her Ralph in January of 2001, on inauguration day. I was up there in DC. at the time.

Right now I live near Tampa and my husband has been trying to get home for the past 18 months and I was commuting to my job in the DC area.........but now.......I quit my job as of June 6th . On June 9th my daughter's dad died, so I stayed behind to help with the children and I get a call that Dan is very sick and not to be shocked when I see him. So here I am. My only support system is you guys on the list and God.

I told Dan......Honey, I quit my job to take care of you. No more going back to DC. You can't be sick anymore. Your supposed to come to our home. I fixed it so pretty. There's a new patio door in the bedroom . I put in a patio. Landscaped it Florida style. Put up a six foot fence so we could have privacy. Painted the place. It all looks so pretty. You can't be sick. Well! he's trying. But he's tried for so long the body just can't take it. So, it's all up to God now. It's been a miracle already. Last year he was so sick.bleeding internally, ravaged by pneumonia. He lost 40 pounds. Goodness, who would have ever thought that he'd recover from that and still be here. The day I quit my job. Well he started a fever and then he developed this massive bacterial infection. Please keep us in your prayers.

This sepsis, is 95% fatal with immune disorder dysfunction. I know its the end but my guys are pulling for me, with prayers and support letters ............and again they're all helping me. They are there.

All you guys need to bite your tongue. I do recommend that you stay on the list but it's your choice. It's good to have disagreements but remember ....it's our only way to exchange such important information.You know that doctor's know very little about this disease.

Aletta-------it'll be your loss.

Excuse me for being so long winded. I've been so preoccupied with Dan's care. Bill is a great guy and very involved with getting good and proper information out to all the folks and he can be a little blunt. I just take that in stride. Sometimes we all need blunt. sometimes we need to get pushed around a little so that the right information gets out. It's hard on a forum, everybody reads it and all the messages are important and they need to be accurate. I'm just happy that Bill is still so involved with the group. to me he's a blessing. (Don't let him know I said that)

Write me sometime. I get the digest form from shy dragger group and haven't had much time for input. Remember, the list is for all of us and this disease progresses differently with everyone.

love ya,