Hello friends,

I will be posting information here to keep everyone informed with what is going on. I know Maria is in your thoughts and I appreciate all the support you have been showering us with. I will need and ask for more support when we get back home! Feel free to tell everyone you know about this diary. All they need is the link.

I will not use my favorite spreadsheet style that Harry Perros likes so much :-) I will try regular prose.

Post 1. We came into the hospital Monday morning, December 17. Maria wanted to come in after the holidays, but her heart could not take it any more. The two weeks prior she could not sleep at all and was extremely weak. We called the doctors Friday the 14th and arranged to come in on Monday. She was placed on two medicines (called inotropes) to help her heart pump stronger. This event placed her at the top of the priority list. She and 9 other persons were at the top of the list that Monday. The number changes daily, as people move in and out; not all 10 are competing for the same organ. We cannot know any more information about the waiting patients, just the total number.

The doctors explained their immediate goals: stabilize her condition and keep her strong for the transplant.

On Tuesday night the doctors placed her on a balloon pump to help her heart squeeze. The medicines alone were not sufficient. The pump worked but the down side was that Maria now had to be in a flat position 24/7.

We achieved the stabilization goal sooner than average -  the doctors brought the kidney function back to normal within 3 days and the heart function within expected range in another two. She was able to eat well for a couple of days, so we succeeded in the second goal as well.

The medical numbers and her pain/anxiety level will fluctuate all the time; myself and the daughters have learned to cope with that. The main objective is to keep her in a condition that, if the organs become available, we do not have to decline them due to her condition. This roughly means no infections, kidneys functioning well (creatinine below 2), strong body (they will feed her through an unpleasant nose tube, if need be), good psychological condition. Her blood type is O, the rarest among all types, so any offer is precious and cannot be missed. On average, type O patients wait the longest on the list.

On December 27, they pulled the balloon pump off. The hope was that the heart could sustain its function without it, so Maria could sit on the bed comfortably. They told us that in the past they had patients on the pump for more than two months. Very, very uncomfortable, but the patient does it, somehow.

The summary of post 1: all is going according to plan. The doctors have the situation under control. Maria's immediate problem is anxiety and a little pain from lying in bed for so long.

Post 2, January 3, 2013. Maria remains stable and is a bit tired, psychologically. The balloon pump is still off. She has had her share of hospital infections and a mild pneumonia. We did not miss an organ offer, though, so no harm done. All is going according to plan. The goal is to keep her in this condition till the offer.

The entire family celebrated New Year's with some bubbly (I smuggled in some Moet & Chandon, but the doctor on call switched it to apple cider).  

Post 3, January 12, 2013. Maria remains stable and is a lot better, psychologically. We have done some relaxation exercises (they call the technique Visual Imagery) that worked wonders. Sleep is a bit of a problem; for some reason, the medicine regimen works every other night. Eating is the second problem; there is no appetite. On the plus side, she was able to walk every single day. With a bit of luck, today we'll take a trip to the "Butterfly Garden" outside the hospital.

All is going according to plan.We are ready for the offer.

Post 4, January 17, 2013. Maria's condition has deteriorated abruptly and significantly. She is fighting for her life the last two days.

Post 5, January 19, 2013. Maria's condition has not improved. The doctors will give it one more try over the next 2-3 days.

Post 6, January 21, 2013. The doctors pulled away the life support at 11am. Maria passed away peacefully at 4pm.

Post 7, January 22, 2013. We'd like you to remember her this way - always smiling, because she was our rock when we needed it

            and enjoyed her life

                                                                  and leaves these girls in her place

after she gave me 11 years more than the 5 we both asked for back in 1997. 

She was so serene with the kids holding her hand, during her last 5 hours. Her heart was pounding so calmly.  It calmed us all and made me believe for a moment that she would live for ever. 

At 4 in the afternoon she set forth to find her sister Christina. Christina had a liver transplant in Greece on Wednesday the 16th - she passed away on Friday the 18th, due to excessive bleeding.

The last 5 hours with Maria were a dream.
With love,
Despina-Candice and Simon
Nora, Natalie

Post 8, January 24, 2013.

A Celebration of Life will be held at 2 p.m. on Friday, February 1, 2013 at Duke University Chapel, 401 Chapel Drive, Durham, NC 27708. The family openly welcomes and encourages all who knew her to attend and will lovingly receive friends prior to the formal service at the family’s home, where she welcomed each and every one with open arms, 105 Redfern Drive, Cary, NC 27518, on Saturday, January 26, 2013 from 2-8 p.m and Sunday, January 27, 2013 from 2-8 p.m.

In lieu of flowers, the family asks friends to consider donations to the HHT Foundation (hht.org) and to spread the word about the importance of organ donation.