Profile picture for user karencope
KAREN C. Caregiver

Scared so scared ..

Wed, 05/07/2014 - 3:29AM

I, after yet another fitful night? sleep quite literally stumbled upon this site in the wee small hours - I'm hoping if I tell my partner?, Steve? / my story it might help me clarify things in my mind as currently I do not know what the outcome of Steve' recent LVAD surgery will be & I am so very scared.

After spending some week? as an in-patient Harefield Hospital undergoing yet another heart transplant assessment we were told Steve needed to be fitted with a LVAD ? this was done some 10 days later on Weds 12 March.

Steve? recovery after this procedure has been anything but plain sailing:-

*The day after his initial surgery Steve returned to theatre following a severe bleed

*Steve remained in ICU for some 3 weeks where he received 1:1 nursing care - he was fully sedated, ventilated, regularly had his blood filtered & for sometime had to be supported with a RVAD too.

*Eventually Steve was weaned off all the above support & he returned to Rowan Ward where initially he seemed to make good progress however it soon became apparent that all was not well & Steve was diagnosed as having a great deal of fluid on his left lung. It was hoped that this fluid would dissipate of its own accord but when it didn?t / Steve? condition worsened & the decision was made to drain off this fluid.

*During the above procedure Steve? lung sustained an injury caused the lung to fill with blood - Steve spent the next few weeks attached to a chest drain. Once again it was hoped the accumulated blood would dissipate but when it was discovered that blood was thickening at the base of the lung the decision was made to return Steve to theatre to clear this accumulated blood on Thurs 1 May.

*After this operation Steve was returned to ICU where he remains ? once again he is receiving 1:1 nursing care & is being supported with oxygen, blood products / filtering.

We, Steve? family & myself hope to meet with the consultant, VAD nurse tomorrow to discuss his current situation whilst I am just so very scared that I might never get my Steve back.

Thank you for listening Karen

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Profile picture for user vincent
Steve V.

Wed, 05/07/2014 - 10:07PM

Karen

My name is Steve as well - My LVAD was placed in Nov 2012

My recovery had many more downs than ups & included about 8/9 weeks of ICU

I also had some of Steve's issues and many more of my own

Now 17 months later - Life is GREAT!!

Every LVAD situation & recovery is unique and challenging

Please, remember that if Steve was at the point of getting an LVAD that he was OUT

of options and was dying with no hope of recovery or surviving

Steve was going to die without the LVAD - NO DOUBT

So NOW he must fight for his life and you must fight right along with him

It will get harder before it gets easier and the family will question WHY

If he survives and I believe in him, his doctors, his LVAD team and the love of his family - He must fight and fight hard - it will not be easy or simple and certainly not quick -- I would suggest that you your family get your mind right for fighting with Steve with everything you have for the next 3/4 months

I believe on Labor Day your family is going to have a great BBQ & party with Steve doing the grilling

Keep us posted on his recovery