For me, waiting for the lungs was the excruciating part. I was completely lost when I got the call...sitting on my bed while Jason was running around crazy. Then when I was on the plane I could not sleep because my mind was in so many places. I will admit that I was nervous. I could feel my heart beating (not as hard as when I realized I was getting the call) and I could not settle down. I wanted these lungs more than anything at the moment, but I was scared too. When I was at the hospital it wasn't too bad waiting with Jason, Erika and Puneet, but part of me was still nervous about it. When we were taking pictures in the OR waiting room my nerves were lessening because I wanted them more and more. I was tired of waiting and I was ready to live. I held back tears when I said my goodnights to family before going into the OR, especially my brother. When my family cries, I cry. lol They were all so happy for me, but I know they were scared too. By this time though I was not scared anymore. I waited for this pair of lungs for twelve hours and I wanted them. I was ready, but looking back I see this was just the start of how hard it was for my family.
On Saturday, July 6, 2013 at 4:45 PM, I was wheeled into the OR. At that point we had a 5% of losing them (they could be cancerous, infected, diseased, etc.). Lungs are so fragile and most of the time they are not viable for transplant. However, when I was taken back Jason, Erika and Puneet were all reassured that the lungs were in the air and on their way. I was in surgery for nearly ten hours. During this time a lot happened to me. On top of that I was kept in an induced coma until Monday. Jason and Erika have been a huge help filling in some blanks for me because I had no idea what happened while I was under, of course.
At around 6:30 PM everyone got their first update. The anesthesiologist came out to say that the right lung was out and the new lungs had landed in New York. I was breathing on my own with only my left lung in (using 100% concentrated high flow oxygen) and did not need the assistance of bypass. My oxygen saturation was fair. He said that they were all surprised how diseased my right lung really was. It had a growing pneumonia which was certain to have caused problems sooner rather than later. A lot of time was dedicated to cleaning the chest cavity because there was so much fibrosis and bacteria there. At that point Erika lost it a little because they already had a lung out and in the garbage before the new lungs were even in the OR. I am sure they knew what they were doing though. Courtney arrived at the hospital at around 7:00 PM and Puneet left about then as she was on call the next day.
The second update was at around 10:00 PM. Here the anesthesiologist told them that the right lung was now in and it looked good. They were going to do the one lung in, one lung out procedure. Jason asked if the lungs fit and he was told that they wouldn't know this until they were ready to close. The next update was just to let them know that I was doing great. He was hoping the next time he came out he would be able to tell them that I had two new functioning lungs.
On Sunday July 7th around 12:30 AM the surgeon came out for the last update. He told them that I had two beautiful lungs and they were working on closing up. He said that I was having some problems with CO2 trapping and the Intensivist was working on getting it resolved. After that I would be transferred to CTICU (Cardio Thoracic Intensive Care Unit). He told them to be prepared because when they saw me I was going to have generalized edema (swelling everywhere), tubes coming and going all over my body, and look pretty sick. He said I would be in a coma for at least another day and a half.
When everyone came in on Sunday some family members took how I looked a little better than others. I was told by all of them that I looked rough. My mom said she wishes she had done more research because she really was not ready to see me when I got out. Jason knew what he was going to see because he was told by many of the doctors, but he said it was still difficult. This was the same feeling for Erika. I was very bloated everywhere. My face, hands and my feet were all huge. I had a central line that was in my neck. This is a catheter that they used to measure all my venous system pressures. It was mostly for measurements but could be used for infusions or for any type of resuscitation. There were four chest tubes draining a lot of dark, thick, red fluid that was viscous and nasty. I was intubated and because of CO2 problems they were taking ABG's every twenty minutes until the levels stabilized. This is what gave me that nasty bruise on my arm. That Sunday night Jason, Erika and Courtney left to go sleep while my mom, dad and brother stayed with me at the hospital.
Monday morning my family was allowed back in to see me around 10:00 AM with only two visitors at a time. This is when everyone was told a few things about what happened to me while I was in surgery. The lungs that I got were AB. They also turned out to be a little too big so they removed the middle lobe on the right lung and the lingula from the left lung in order to make them fit. I was also given two blood transfusions during the surgery. It was not a perfect surgery at all, but everything went well and now I was resting and waiting to start breathing on my own. While my family was visiting, my anesthesiologist was rounding with medical students about Cystic Fibrosis outside my door. There was so much to say they had been there for over six hours!
Monday Jason was coaching me to breathe on my own. Here is a video of me taking my first few breaths.
Around 8:00 that night I was extubated (the ventilator tube was removed). I was moved from the CTICU to the transplant floor Tuesday July 9th. That night I got confused and believed to have had a stroke. As hard as this is to believe, I remember a lot of this and plan to try and explain to everyone what I was going through the best I can on my next blog.
We weren't told about the donor at all. We weren't even told where they came from. We only know they came from quite a distance. Now a days with Google it is not hard to look up accidents and find out who your donor is. UNOS wants to keep things private for the families that are grieving and decided to donate so they tell the doctors not to tell the recipients or their families much of anything. All we were told was that the wait was so long because this person was able to give everything. The lungs are the last organ to be removed from the body so the surgeon had to wait before he could see them. I was told that in two years I can write a letter to UNOS telling them all about what these lungs have done for me. UNOS will then give this letter to the donor family and maybe they will reach out. I really hope they do. I would love to thank them for this gift that they have given me face to face. For now though I understand how hard this time is and how they need time to grieve privately. Maybe one day when they are ready they will agree to meet. I will be able to meet them and allow them to listen to these beautiful lungs that they gave me. I want them to see what their gift has done for me and all the other people they have saved. Including their families.
Kathryn Czechowski · Jamestown business college
This is so amazing to read and to remember. It was one of the hardest, yet one of the happiest times, of my life. To see you so sick, but knowing that this was the beginning of your new life, was so scary. I am so over joyed for you, my heart is about to burst, you deserve it all and more. Your my baby girl and always will be...I love you soooo much!
Mary Benner · Works at Fredonia Central School
I hope you got to sleep a little. I hope you are just getting excited about coming home soon. We don't care if you have to wear a mask, heck maybe you should make us all wear them so we don't give you any germs. We could have a mask party.
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