Im home tonight

KimberlyH
on 5/16/09 9:07 am

We decided to call it a early night we are both emotionally drained...he 's been sleeping all day so I thought Ide go home and let him rest. NOW...this crap is so unreal....this morming I was at the hospital early to talk with the head surgeon...complete turn around of plans....NOW...Im told surgery is impossible, they dont make the proper type of stint that is needed and the others are too risky to use and may not even work, the one has a barb end and will make the tear worse and the other isnt like ummm spread right ,like it might fit one area of the tear and compess the other area... and he would have a very high probability of stroking out, being paralized or dying...they wont operate. Sooo now the game plan is to keep him a few more days and let him come home....they think if he keeps his pressure super low, gets CAT Scan done at 1 month, 3 month 6 month and so...and watch for any changes in the tear, maybe later down the road they can put in a artificial I guess artery and maybe even then technology will have made the proper stint. I asked how long will he live and whats not to say he wont just drop on me....the say we and them can just carefullly moniter and at any sign of pains or real changes in his BP that last awhile to call emmediatly and get to hospital...but he should live his life and use common sence and not over due it. Im just at a complete loss...greatful no surgery but so fearful Im going to bring him home as a walking timebomb...all the doctor says is live your lives and and use common sence...now what kind of an answer is that? They dont tell you a damn thing, I said give it to my bluntly and thats what I get for an answer....I hate this crap. To me it doesnt sound good but I really just dont know. I guess if he heals longer then they can do the artificial artery thing but thats awhile away not like tomorrow or even next month...who knows.....I pray things go well and he stays with me.

"To accomplish great things, we must not only act, but also dream, not only plan, but also believe" ----"Anatole France"

"Joyously grasp the ties that bind you, for they lead straight to the heart"---"Wm."

Kimberly...

JoyCook
on 5/16/09 9:33 am - Little Rock, AR

RNY on 03/01/04

What a roller coaster ride! I think I'd be looking for a med center that specializes in this sort of thing. Maybe Mayo Clinic or Johns Hopkins or MD Anderson. Often these places know treatments that are not generally available and how to get signed on for them. It sounds like you have the time to research it and talk to people, but I would definitely get a second opinion in a place that has more extensive experience in this specific problem. I know it sounds scary to travel or to start over, but I have seen that be the answer.

I'm not sure where you are, but maybe there is a major med center not too terribly far from you. I'm praying that you connect with the right people quickly. I don't see how he can live a normal life the way it is. I would not accept that without a fight.

I am so sorry for all of the stress and turmoil that you are going through. I know how the medical system can make you feel vulnerable and helpless, and afraid to demand answers. I have been there with a sick child. I will never allow myself to surrender control again. (My story had a happy ending, but was terrible to live through). I will always seek medical professionals who will respect my right to make knowledgeable choices, and will help me do that. Most doctors, in this type of serious condition, are happy to have you seek a second opinion.

Keep "talking" to us! We care!

Joy

KimberlyH
on 5/16/09 11:16 am

RNY on 03/10/04

I read what your saying....when it first happened that first night Hopkins was consulted and they had him flown to this hospital its in Delaware they specialize in heart/vascular conditions from A-Z...deep down I do feel confident in the doctors here, I just am not happy with the outcome of it all. They have been in contact with Hopkins and all the team here and numerous manufactuers of the stint devices from everywhere, there just isnt, in their words, the proper stint developed yet...and anything else they do at this point is just too risky. U of MD was also considered but they thought this was the best place to go for treatment, and seriously, I wouldnt let him go to U of MD I worked with some of those doctors in the VA and I just dont feel good about them...too many residents doing the work there.. And I cant let a resident even attempt touching him thats not happening. I really am hoping or should I say praying with time they can do the artificial artery he just needs to heal more and build up some scar tissue cause right now it would be trying to sew up mush and I know that. I just dont want to know that. I guess I should say I do feel confident in the treatment option but its definatly not what I want to hear....but thank you and I have not given up not by a long shot thats just not my nature...Im going to question everything and keep asking, and do whatever I have to do cause Im not loosing him, thats just not in my lifes plan Im surposed to go first.

"To accomplish great things, we must not only act, but also dream, not only plan, but also believe" ----"Anatole France"

"Joyously grasp the ties that bind you, for they lead straight to the heart"---"Wm."

Kimberly...

JEllen
on 5/16/09 9:57 am - Capital Region, NY

RNY on 07/23/09

Kimberly-
Just wanted to let you know I'm thinking of you and your family at this difficult time.
I've been in similar situations and it is exhausting, especially - when treatment is on again- off again. the comforting thing is - DOCTORS DO WANT TO GET IT RIGHT.
Years ago, there seemed to be an all out rush to get into surgery- but they didn't have the diagnostic tools they have today. So that's why they did that. So while it's frustrating- perhaps the delay will give your husband time to recouperate some and regain some strenght.
I hope you get some definative answers from the doctors soon as to what is going on with his condition. If you can ASK MORE QUESTIONS- then if you still aren't clear you could ask: Am i understanding what you said means...."state whatever you're not clear about" then they can respond yes you understand correcty or no- and give you further explaination.
They are not God,of course, so there are times when they just don't have the answers ...- they are men and women with very fine educations- that "Practice" Medicine. and thankfully- more times than not- they Do get it right.
I'll be keeping you in my thoughts & prayers....

KimberlyH
on 5/16/09 11:18 am

RNY on 03/10/04

As much as I agree with you I wi**** was different ...its just really hard absorbing all this...but Thank you for keeping us in your prayers

"To accomplish great things, we must not only act, but also dream, not only plan, but also believe" ----"Anatole France"

"Joyously grasp the ties that bind you, for they lead straight to the heart"---"Wm."

Kimberly...

JEllen
on 5/16/09 9:21 pm - Capital Region, NY

RNY on 07/23/09

I hope you were able to get some much needed rest last night. and that you both-
have the strenght and have a better day to day. Take care.{{{Hugs}}}

Im home tonight

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Im home tonight