So this post is in response to that question. And I would invite any of my readers to comment adding their recovery story as well since we all know recovery is very different from patient to patient.
"you said that before and after transplant was the most painful thing you ever endured. can you expand on that? i have been on the transplant list for 8 months and my fear isn't really dying but the recovery after surgery. of course i would love to live a normal long healthy life but i have come to the realization that, that's not my fate."
Transplant WAS the most painful thing I have ever endured as far as Physical Pain. Well, and I guess I can comfortably say emotional pain as well. Let me just get right down into the worst of it. When I woke up from my transplant surgery I honestly don't remember a whole lot. I remember I was told they left my incision open on my left side because the lungs had to be trimmed a little to fit so they wanted to let some of the swelling go down before sewing me up. I remember it hurt, but the medication they gave me pretty much kept me in a state of drowsiness and the pain wasn't noticeable. I was sooooo thirsty! I was on the vent through my mouth for several days after transplant and I was not allowed anything to drink because of the vent. My lips were chapped and my mouth hurt. I was allowed some sponges on a stick soaked with very little water to swab my mouth to keep it somewhat moist. I only remember the first day or two vaguely because after that I slipped into dimentia which is caused by several things but mainly to pain meds and my body adjusting to the immuno-suppressants. It was HELL. I didn't know what was real and what wasn't real. It was like having reality mix with my worst/scary nightmares. I 100% believed Bryan was having an affair. I was unable to realize this was just dimentia. I thought that when he was leaving the hospital he was meeting another woman. I then dealt with grief that I had been such a burden on him that I had pushed him into another woman's arms. I thought the bed (which was air filled to help with circulation) was leaking a toxic gas and I had tremendous panic that I had to somehow shut it off or it would poison and kill me and everyone around me. I then thought I had killed 62 college students with a house porch which I was in when it slid down the snowy parking lot of the college crushing and killing kids in it's path. When it finally stopped I could hear the voice of girl screaming as she was pinned underneath it. I heard her friends in a panic try to dig her out. . . . I heard her scream until she could no longer and she died. I knew I was going to be punished by the law for murder. I was in the ICU and parents of these students tried to get into the hospital and kill me. I felt like I deserved to die. They were outraged that their child was dead and the hospital was keeping me alive. My parents and Bryan were confused when I would ask them "What are they charging me with?" as in how many counts of murder. . . .There is so much more, I had dementia so badly I lost track of time and reality and I am not even sure for how long I don't know if it was days, or weeks but it was emotion HELL. I also thought the doctor and staff were doing radioactive experimental treatments on me then when I figured it out they were trying to kill me and make it seem unsispicous. So to give you an idea of what my world was like post transplant remember I thought all of those things really happened because the two worlds of dream and reality had become one. Coming out of dementia and realizing that I was unable to get out of bed, which also made me realize I was being cleaned up after daily like a baby, was tough. I was completely helpless until I gained the strength to do things more on my own.
Now "Physical" pain: Once I started to understand my surroundings and come back to reality, it was a different kind of pain. I couldn't move from the pain of the chest tubes and my incision. I just laid flat on my back. Everything just felt tight. I did get off the vent for about a week (or less) and my CO2 levels became EXTREMELY high again. I had developed pneumonia which cultured positive for cepacia. I don't remember much of that week at all. I was re-vented with a trachea because they figured it would be best and more accessible if I went off it and needed to be put back on again. I went weeks or a month on the vent. I got a bowel block and my kidneys were struggling so I swelled up about 4 times my original size. That was painful. The daily x-rays in my room I dreaded. They slid a cold hard flat plate behind me which put pressure on my chest and that was every day! I had been bed ridden for so long that I got bed sores on my back and on my butt. When they would change/clean my bedding and wash me clean with soapy towels I had to be rolled from side to side. It hurt, I cried. . . .but I worked hard to have the strength to roll to each side on my own and grab hold of the side rails of the bed and lay on each side. The biggest cause of pain for this was the Chest Tubes. Once the chest tubes came out I started to feel a lot more relief. Weening back of the ventilator was physically exhausting. Learning to "breath" after being vented that long was hard. It took me like a week to ween off. Going off the vent for just hours at a time. I had to set goals each day and push myself in order to strengthen to my new lungs enough to breath on their own.
SETBACKS: Recovery is a roller coaster. . .two steps forward and 3 steps back then one step forward and 2 steps back. I had many of these occurrences. I could not talk with the trachea vent and that left me alone with my thoughts and it was hard to communicate. I struggled with depression and even a little regret. At one point I felt like I wasn't going to have the strength to pull through. I felt like I was going to die. I wrote down all my possessions and who I wanted to give them to. I didn't have much left at that point since we sold about everything we owned to get a transplant but I had my wedding ring which I wanted my niece MJ to have (when she got older), my horse Princess I wanted my Mom or my Grandma to have and my new Palomino Mare I was going to give to my sister. That was all I had left that mattered to me. It was hard emotionally to not give up, to find the strength to endure. I had a song that strengthened me for months before my transplant. Josh Groban "You are loved". So when post transplant got to be more than I could bare, Bryan brought me my mp3 player with that song on it and I listened to it over and over. . . . "don't give up because you are loved" and those words reminded me that what I was enduring was not just for myself but for my family, my husband and everyone that loved me.
All in all the pain control at UPMC was top notch. I respond well to pain meds. It wasn't pain free. My chest ached and I had to slowly build up all my muscle in my legs. I had become very weak from laying in bed for so long so I would become exhausted after just walking a few yards. Bryan was the best support and physical therapist for me. He would help me and support me as we walked at an Extremely slow pace, then he would push me to go a little farther until he had me doing stairs and by the time I left I was able to walk 5 flights of stairs on my own. It was a long slow journey for me. With a lot of ups and downs.
WOULD I DO AGAIN?: Honestly the answer is yes. I would go through all of that again because although at the time it seemed unbearable and painful at so many levels, I sit here 3+ years later and I reflect on all the things I have done in the last 3 years along with the ability to breath and live a normal healthy life. I would do it all again for more of the life I have now. More days of no breathing treatments, more days of no coughing, more days of new opportunities, more days to spend with Bryan, more days to ride my horse, more days to pursue my dreams in life.
I still have some strange pain pressure where I was cut and ghost pains where the 4 chest tubes were. I only weighed 68 lbs when I was released from the hospital and it took time to finish recovering at home. I know nothing worth doing is ever easy. So I figure although my transplant was the hardest thing I did, it also has been the best and most rewarding thing I have done in my lifetime.
LISTEN TO "YOU ARE LOVED"
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