June 15th.... nothing more...

I have a hard time explaining my life, "I look good". This is what I hear when people ask what's new & I hit them with the need for a transplant. Something tells me that if you are not plagued with a life threatening illness then you can not fully understand what we are going through. I eat, sleep & live around my heart.

My perception of the outside world is one in which major worries are getting their plants put in, taking the dog to the vet for grooming, or washing your car. All the things that used to be on my to do list. And now my list is to pick up meds & rearrange dr visits, never go far from home because the call could come in.

I need a new heart so that I can find the authentic being stuck inside this empty shell of what used to be me. I'm becoming selfish, self loathing & numb.The phone rings but it's never the call I yearn for. I hate to be disappointed because it's just you. Just you should be enough.

What if YOU could save 8 lives? YOU CAN.........

http://www.organdonor.gov/Default.asp

Skip around, ignore the cookies page, I did.. I found my home state and saw that you can change your donation status before your drivers license has expired. Don't hesitate, heaven knows your heart already..

Gift of Life...

Hahneman has had 3 heart transplants in the past 3 weeks. I just checked my pager and saw NO MESSAGES. Half tempted to call down there to remind them that I am waiting patiently, but I would never even jest with such a silly "joke". All 3 hearts have been given to men including my friend Rick who I asked for you all to hold up in prayer before me since he seems so deserving & the right candidate. Such a Norman Rockwell family setting like his needs his presence at the dinner table as he watches his daughters have families & raise grandchildren for him to enjoy during his unplanned early retirement.

The other two were on LVADs and while the machine itself is a lifesaver no one would want to live life in that manner unless they had all the assistance & personal attention that a Dick Cheney has, and I bet if the truth be told he's not so thrilled either (other than to still be alive which of course is in itself paramount). At 92 lbs I do not want to "go there". I pray that I never get sent home with the VAD Video & pamphlet..

My goal is to Pay it Forward after the second chance at life happens for me. I want to somehow be proactive in speaking in high schools or where ever they will let me speak to encourage organ donation. Procurement has so many myths that need dispelling. I hope to be able to achieve that goal with a year.. My birthday is coming up July 13th, maybe this year I will get a phone call that will be the gift of life.. one can only dream...

Back to 1B

What a roller coaster ride this past 4 yrs and esp. the past 4 months have been. Yesterday after having been in the hospital for nearly a month. I had a follow up visit with cardiology. It was only a week ago since they saw me but the GI team was basically in control of the whole sh*bang and it was necessary to get me out of the threat of further infections & back to where I had been on the transplant list.

So off we went arising at 4:30 for showers and getting there in record time 7:45!! We were first in line & I was first to be admitted, YUP admitted again, but this time it was for the inotrope Milrinone that is sent into my body via the PICC line in my right arm (a new one).

Dr Eisen was able to forego the "seemingly required" right heart cath with consequent admission to CCU, to get the milrinone started, he merely restarted it at the dose I was at post infection.

Color me thrilled. I was able to be discharged the next day. (NEVER has that happened in my 57 yrs.) An admission always led to more & more problems.

I did find out I am anemic and I will follow up on whether it's pernicious or FE deficiency. Also low in protein my albumin level was still a tad on the low side, hence that AWFUL picture that is posted on my FB page by a well meaning friend. It's a constant reminder of how sick I am and how my facial sunken features are so visible, it ages me and makes me cry everytime I see it. My sister cried for days after seeing it, I shielded her from the vision that has become me. (not always but esp. after 1 month in the hospital, no shower, and low iron & sick as a beast with infection..

Anyway back to reality, although my pump awoke me every hour on the hour beeping due to some malfunction, I just kept resetting it as it is a temporary one & the VN will arrive today to reset the 2 "real" pumps, the cartridges full of medicine arrived at about 6 PM lastnight, that company in it's infancy deserves to be praised to whomever will listen as it is THE most impressive group of nurses, doctors, pharmacists & drivers that any IV med company can offer. I hope they grow as they plan to & with my help I will make sure praise is distributed to all that matter.

Off topic a bit but never the less still relevant to my care.

I would also like to announce that my a heart became available that same day for a 26 yr old 1A pt. Not Rick but Bryan. I called Rick and told him, as Bryan was knocking at the LVAD door like Rick is, but God saw it another way & he bless young Bryan with a heart.

Hope is alive... Thank you for your prayers & positive energy.

Blessings to all, Denise

PS, now I need to stay free from infection & maybe I can have someone report to you that I am in getting a heart in the near future.. one can only dream..

I Hate Liver

I had been in the hospital the week of April 3-8, I was raised up on the UNOS list to a 1B which brings me closer to a new heart but still eons away if no hearts are donated. But I was encouraged. I had entered the hospital with some elevated liver enzymes, but they resolved quickly. While home on the milrinone I began to feel it's effects almost immediately, but then started a downhill climb feeling poorly each day.

 By the 14th the visiting nurse arrived to find me pale & in a listless state because of something unknown. I was then taken to the emergency room where I was admitted before all others due to SOB & chest pains. I began to shiver uncontrollably & could not get warm, teeth chattering I looked to Tom for relief in answering the book full of questions. His face told me everything, his tears confirmed that further. The Allentown Drs called Philly & the response was to get me there ASAP, draw some blood cultures & the ambulance was on it's way. My WBC was severely elevated indicating infection somewhere. They pulled the picc line and I felt defeated.

No more milrinone, no more 1B, I knew I was now a 7, not eligible for a heart at all if one would miraculously appear while I was sick febrile & infected. Rejection is the reason why, and why should I get a heart to waste if someone who was well could be helped. I knew it was the right thing to do but I was mad that my body betrayed me.
　
In the next few hours I was found to have a blood infection that did not come from my picc line but rather the common bile duct was backing up sludge & bile into my bloodstream. I would need to have it dilated. My past abdominal history makes this a hard feat,however it was done in 3 separate PAINFUL procedures, that rival no pain I can recall. I was in the hospital for 22 days while on antibiotics, round the clock anti nausea medications.

The GI team feel they have done the best they can without a major surgery, only time will tell. But that sours my stomach & blows my mind in so many ways, suppose I get back to 1B or even 1A & the liver flares again. This mental ping pong game is about life & death not antibiotics & inflammation. I tried to get this point across through a tearful explanation that my liver and heart ARE related. Someone said they are two separate entities, well not for me they aren't. One liver inflammation negates the progress I have made in my quest for a new heart.

I grow weary waiting, knowing full well my latest echo shows an ejection fraction of 5. How does one function in life at 5? I'm barely holding on by a thread. Fear is consuming me. My next DR visit is Tuesday, I will let them know of my "current condition". Holding my arms up to type is becoming nearly a chore, most likely deconditioned from the lengthy stay but never the less fatigue is paramount. I slept yesterday away & plan on doing it again today. My body is yearning for it. How much of this is my heart I can't be sure.. but suffice it to say it plays a major role.

"music" if you want it, not forced upon you..

Courage Doesn't Always Roar