Post BiVad, Non-transplant........me. Am I coping? (long, graphic)

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I'd like to help
New Member


Date Joined Sep 2006
Total Posts : 13
   Posted 9/19/2006 8:18 PM (GMT -7)   
I was having breathing problems prior to my hospital stay. I'm 47, male, was a moderate smoker and sometimes drinker. Mid June I checked into the hospital for tests, my heart failed a few days later. I was told later the only treatment, aside from death, was surgical implantation of a bivad. I was in the local hosp for 11 days and remember next to nothing of the surgery or hosp. stay. I was flown to Phila. w/vads, for further evaluation in their transplant program.

I had the most realistic saga of dreams and false memories.

I wasn't eligible for a transplant. When I became aware, I had four garden hoses going in to my abdomen, connected first to a washing machine and later to a portable unit. I hurt like I never had in my life and was horrified with what they did to me. There were clear glass valves on the hoses and you could see my blood pumping. The whole time, loud sounds and my stomach jumping like I was going to give birth to an alien. I was attached to the vad for a month. The doctors didn't know what my outcome would be....and still don't.

The vads were removed on July 9. I stayed in Phila. for another 3 weeks. With a lot of medicine, prayer and a super nursing staff, I recovered to around 30%.

I have been home for close to 6 weeks. The physical pain is almost tolerable, but there is a lot of emotional stuff I don't handle well. I am permitted to drive but cannot work. I am home alone most of the time. I sometimes think that I should have died back in june. I have been following up with a heart specialist and have an appointment with a psyciatrist soon. Some days are good and others are not at all.

I didn't know where to go with this. I am here.

grammie
New Member


Date Joined May 2006
Total Posts : 12
   Posted 10/4/2006 8:53 PM (GMT -7)   
hi
   so what is the prognosis? can they do anything else? my husband has cardiomypathy,and a defibrillator. he has been sick for quite awhile. first came the heart attack at age 25,then a blood clot,then a defibrillator,it malfunctioned,and then another one. he is now 44. unfortunately, he is in heart failure and his doctor has gone as far as he can go.,except transplant. that would take place in nashville,which we live outside knoxville. he also has copd.
   the point i am trying to make is the doctors gave him up to around 5 years in 1991. try and concentrate on how much life you have now,and take one day at a time.
 tomorrow we go and see his family doctor because his legs are swollen and the lasix for his fluid is not doing the job.
 i still hope and pray,for being a christian is the only way to get through it,and the support of your family and friends.
 i will pray for you,all hope is not lost.

Juliette1
Regular Member


Date Joined Feb 2005
Total Posts : 72
   Posted 10/5/2006 8:00 AM (GMT -7)   
Hi there,

I'm so sorry you're having these problems. When I read your post it reminded me of a radio pragramme I listened to recently about post-traumatic shock caused by being in intensive care units. People have such horrifying things done to them - necessarily and with the best motives, of course - when they're partially sedated and in pain, unable to understand what's going on and with no grasp of time. I'm not surprised you're having problems with all this! Six weeks is not long to begin to adjust to the shock of it all. It's good to hear that you're seeing a psychiatrist soon and will be getting some support. Being on your own all day long is hard. Life is strange...there you are minding your own business and the next thing you know you're knocked for six...I know that's trite but it often occurs to me and I only have a problem with tachycardia.

I'm afraid there are parts of your post that I couldn't follow. What are bivads and vads? Excuse my ignorance. Is there any more treatment you could have in future?

Anyway, let us know how you are getting on, we are a pretty friendly lot on here.

Best wishes, Juliette

Post Edited (Juliette1) : 10/5/2006 9:07:51 AM (GMT-6)


els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 10/6/2006 10:16 AM (GMT -7)   
Hi, Welcome to healing well forum, we are happy to have you join us but very sorry it is under these circumstances.  I too was in the hospital for weeks and weeks and vaguely remember any of it...quite traumatic.  My heart problems came on fast also and though it was last summer I am still trying to wrap my mind around the fact of the matter.  Counseling is a wonderful idea as anyone who suffers with severe health problems or even long term health issues needs has to have some kind of support system in place which counseling will provide.  Please do know we are always here...Take care

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 10/6/2006 6:05 PM (GMT -7)   
sad  Sorry to hear about your suffering, frankly it sounds tremendously scary. but i have nothing in the line of info to help you. it took me a year to find peace and that was due to relaxation therapy and meds. do not be afraid to get on some meds at the psych office. it will help alot for theranxiety. please keep us informed, we are glad you found our forum

I'd like to help
New Member


Date Joined Sep 2006
Total Posts : 13
   Posted 10/6/2006 8:47 PM (GMT -7)   
I have had e---ons to think about zilloins of things. A few days ago I had an echo and heart doctor visit. I am up to 54% and was told I do not need a transplant. I developed an old habit of laying on my side, and darnit, it hurts a lot the whole day forward. I feel like I just got released all over again. I am still short of breath and feel like I aged more than a few years. My life is a mess, but I am glad my prayers have been heard. At university of pa there was an intern in the pastorial care dept. that helped me pray and make my piece with God, and feel so much stronger knowing her.

I cannot stress enough, despite my condition, they were the best people I have ever known. I miss them.

The prognosis at hospital release, Was totally unknown. I am one of around 150 people nation wide that they did this procedure to and I am extremely lucky. I am getting better, willing to listen and help and love life to the fullest.

My shrink prescribed some meds to help me sleep and I am to see a therapist.

Every day is a fraction of what I had. I am glad to be with you all.

Your replies are the paycheck that I do not have
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