Limbo anyone?

Yesterday was quite a day, to say the least. The U of U hospital scheduled a 9 hour day for me to complete the pre-transplant tests that they needed to have before they put me on the transplant list. I brought home a nasty cold from Arizona and I felt like crap, so I really didn't want to go to the hospital all day.

I left at 7:00 am, with Quintin and my mom in tow as usual and got home around 6:00 pm. My first appointment was for a chest CT scan. The surgeon needed that to map out my heart and to see what they would need to do to connect a normal heart to my funky anatomy. The girl that did the CT had to put in an IV, I forgot to tell her that I was on coumadin that thins your blood until I felt the blood running down my arm. She cleaned me up and proceeded with the CT scan. I lay on a flat surface and got into a huge donut looking machine that scans my innards. When I was in the "donut" I was waiting for the contrast (iodine through the IV that highlights your insides). When they put the contrast in it is very uncomfortable, you feel like your insides are on fire and then you question whether you wet yourself or not. While I was waiting for the contrast I was taking a deep breath and thinking positive thoughts. I started to hear what sounded like someone peeing behind me. The girl came rushing in and saying "oh I forgot to connect you to the contrast". It had been squirting all over. I guess she was too busy cleaning up my blood to remember connecting me. The burning when she tried again was bad but not so bad because I was laughing in my head the whole time.



After the funny CT scan we met with the liver surgeon and he basically told us that I need a new liver and that a heart transplant wouldn't work unless I also got a new liver. He said that it shouldn't be too difficult, (they just will elbow each other out of the way). I began to think that a double transplant may not be so difficult. I asked how many had been done in Utah.....none...... my head was spinning.

Then we went for a carotid artery Doppler (in lay mans terms, that is a neck ultrasound of the arteries). They were very concerned that I had a blockage of my left artery until we explained that I had it severed when I was two and had a Blalock-Tausig Shunt.

After lunch we met with a transplant cardiologist who threw us a major blow! After examining me and speaking to us, he told me that with all of my complications, he did not feel that a transplant would be something they could offer me. It was very difficult news. After a brief emotional wait, we met with the surgeon.

The surgeon told us that surgeons have a different view point that the cardiologists have. Where cardiologists think about percentages of mortality and long term care, etc., surgeons are concerned that the patient survives that day. He then continued to talk to us about all of the issues that a transplant would mean for me. He drew a picture on the board of what a normal heart looks like and what mine looks like, then how they would have to insert a normal heart into me. He said that it would be a challenge but he thought it was doable; even though there would be challenges. Then he spoke of my bleeding risk. Because I have had so many heart surgeries and have so much scar tissue there would be a great risk of bleeding. (During my last surgery in 2001, it took them 8 hours just to get to my heart.) Next he spoke of my liver. If my liver is so badly damaged that it would not be able to produce the proteins needed for the blood to clot I could not make it through the surgery. He spoke of doing a test to see if my liver would clot when I am off Coumadin. I told him that I had recently gone off Coumadin during my heart cath and that my INR (a test to see how thin my blood is) went down to 1.4. He said that was really good!

Apparently the congenital heart doctors and the adult liver doctors do not agree on how important it would be for me to also have a liver transplant. Congenital heart doctors feel that if you fix the heart, the liver will repair itself. The adult doctors believe that I absolutely need a new liver. It depends on how seriously scarred it is. I was reassured when he told me that he had talked to my last cardiologist at PCMC before he met with me. They have scheduled a liver CT scan for Friday and want me to bring in the slides/info from Australia from when they did a liver biopsy. If my liver is too badly damaged then they would not do the heart transplant because it would be too risky to do both.

If, however, my liver isn't too bad, a heart transplant may be a possibility but he talked about my potential to bleed and the problem with my lungs. My lungs currently only have about 50% capacity with some scarring and they are used to the very different kind of blood flow. He said that my heart is also used to the high pressure in my lungs. If they put a normal heart in me, the high pressure in my lungs may cause the new heart to fail.

He then talked about some options such as giving me a large strong heart, or a heart of a smoker which would be used to the high pressures. One thought seemed very strange. They would put a heart into my stomach (I guess sort of piggy back with my old heart). He was busy thinking of creative things, I told him that I don't want to be an experiment and I would rather let another person have my donor heart if they weren't sure I would live. He told me that they don't play like that and if they can't do it they won't. He was very honest and I trusted and liked him.

Many doctors (including my friends at PCMC)are going to be talking about me over the next few days; next Tuesday they will all be meeting together to decide what to do.
They suggested that I may want to look at other centers throughout the country if it is decided that I needs both a heart and a liver.

If you have understood all of that please explain it to me, Everything is up in the air and our lives are in limbo. I hate limbo, I could never bend that low. But now is the time when I need to stretch more than I ever have had to. Patience is a virtue they say, sometimes it is my vice.

I will of course update when I know what has been decided.

Love
Holly