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Post transplant with meds behind me
One of the adjustments that I was going to have to make was accepting help from people.....and having my parents move into my 2 bedroom duplex to help with aftercare. Now, let me say this up front, I LOVE my parents. But the idea of the 3 of us living in my 1100 sq ft duplex was daunting, and right off the bat, I experienced my first encounter.
My parents decided that if they were going to have to live with me for 6 weeks, at least, that they needed a queen size bed. Now, I have one queen and one full bed and I offered to move the full into my bedroom and let them sleep on the queen. But no, my mattress wasn't hard enough so they had to get their own. Ok...I can deal with that....but what is going to happen to my antique metal bed frame? Oh, we'll take it to our storage building at home and put it in there. Ummm, that might work, I thought. Only that wasn't what happened. Instead, it wound up in my garage, further cluttering my small parking area. While that doesn't sound like much, at the time, it was. Then, after all this had transpired, the reality of the entire situation hit and I went into a panic attack. Wound up in the fetal position in my bed in tears all night long over what was going to be happening in my life from this point on. Constant medication, constant medical tests, loss of independence. But, what was my option....6 feet underground?
Throw in the fact that every time my cell or regular phone rang I wondered if it was the transplant clinic, it just made me very moody and jumpy. Yes, they would use the pager but, as we found out in our training sessions, they liked to make an attempt at a personal call so they could tell you in a calm manner and relay instructions. So, every day I wondered if this was the day and would feel disappointment when I looked at the caller ID. And if it wasn't that pressure, there were the monthly visit to the clinic for blood work and echo's. I got to the point where I was no longer embarrassed to show my chest to strangers because nearly everyone in the hospital had seen it.
My ejection fraction was around 18% when I was first tested...now it was dropping to below 15%. For most normal people, their EF runs between 50% and 70%. I was running out of energy too, but luckily enough my principal, Alton Royer, and the BAPS district were kind enough to let me work shortened days. I'd come in about 9am and leave about 2pm which still gave me time enough to get some things done at school and deal with kids and parents but I wouldn't have to do morning or afternoon meetings. Walking into the building was enough to wear me out for an hour. I couldn't even finish a bowl of soup at lunch without getting exhausted. I'd come home every afternoon and crash on the couch watching Food Network. Paula Deen would coook and I would dream that I could have the strength to fix the food. In fact, since this whole experience had started I had lost nearly 100 lbs. I needed to lose the weight, just not quite like that! But, even if I did get excited about fixing something to eat, the whole procedure would wear me out and I would not have the strength to even eat.
I also began to have some weird dreams. I'd dream I was in the operating room and could hear the doc say they couldn't do the transplant because the sarcoidous was back. I'd dream I would die. I'd dream I'd find the perfect husband in the hospital (that one I liked!). Luckly enough I had nearly 120 sick days gathered up, so when I was worn out I'd just stay home. My other 2 counselor co-workers, Michelle and Jerry, did a great job of helping out with school stuff. My friends Lisa, Melenda, and Dawn would offer to pick me up and take me home after some of my doc appointments. My other coworkers, both male and female, offered to get groceries for me. I also got a phone call from another transplant survivor, Chuck Stophel, who happened to attend my church. He did something for me that others hadn't been able to do....he made me laugh. He had some of the most hysterical stories of his experience and put them in such a funny format that I found myself relaxing when he would call. Had not personally met him but enjoyed each of his phone call. But I'm a pretty independent person, and accepting all that help was not easy to do. Sometimes I did, most times I did not. There were times when I was trying to put groceries in the car that I wished I had!
Thanksgiving started coming up and the clinic said that, unfortunately, Oklahoma has a high accident rate around the holidays so to be sure and stay within 2 hours of Tulsa (in fact, I had to stay within 2 hours of Tulsa since this began) and carry my pager. My only request was that it didn't happen during the OSU-OU football game! But about this time I could tell that I was getting weaker. I had experiences at clinic where my BP dropped to 85/60 and 84/40. In early December the clinic called and wanted to do another heart cath, which meant getting poked in the groin again. Not exactly one of my favorite things!
I was so depressed over this, and tired so easily, that I decided not to decorate for Christmas. Now, you have to know that I come from a family that decorates like the Griswald's...lights around the outside of the house that an airplane could land, every crook and crannie filled with Santa's, nativity scenes, elves, and snowmen. For me to state this was a big deal. But, my friends Amy, Lisa, and Melenda...known as "the 3 ho's", bought me a small tree and decorated it for my office. I came to work one morning and there, lite up beautifully, was a fully decorated tree. They came in after I left the day before and decorated it, then Jerry turned the lights on when she got in the office that morning. Was a wonderful surprise. That Sunday, some of my Emmaus friends dropped by with gifts and snacks and we laughed and laughed.
I was just getting ready for bed when my phone rang. Judy, one of the transplant nurses, called and said they had a possible heart. I was to go in and they would draw blood and see if it would be a match with the antigen. So, I called Amy to see if they'd take me to the hospital. That was an interesting conversation:
Me: (As husband Wendell answered) Are you ready to take a trip?
Wendell: Sure! Where do you want to go?
Me: To the hospital.
Wendell: Why? Wouldn't you rather....
Me: The have a heart, Wendell. I need to get to the hospital.
Wendell: Oh. OH! Okay, be there shortly. (followed by a click)
I called my brother and told him what was going on. He said he'd call my parents and they'd meet me at the hospital. (He lived closer to the hospital than I did.) I guess he tried to leave without his pants until Susan reminded him he might need them! While I was waiting on Amy and Wendell to arrive, I paid a few bills so they could be mailed if I was in the hospital, then I called Lisa and let her in on the secret. She promised to call Melenda and my coworkers and let them know. Amy walked in about then and asked if I was ready for this...told her I didn't think I had a choice!
We went to the hospital and I just started to dial Judy to let her know we were there when she walked up. She and I went to the 3rd floor ICU while Amy waited for Wendell, who was parking the car, and my folks. I gave my phone to Amy and headed with Judy. That was an odd feeling because the cell phone and the pager had become part of my body.
I was stripped down and put in the bed, got a few ID tags, then they tried to put an IV in. Ha! After 3 attempts Brittany gave up and called an IV tech in. Brittany gave me a quick bath to make sure there were no germies on my skin, then Dr. Morris came in to try to put the subclaven catheter in. After about an hour of trying in every bodily position a bed can possibly be put in, he decided they'd wait until I got down to surgery. When my folks got back to ICU they told me that Alton, Melenda, Lisa, and Amy and Wendell were there as well as my minister, Mark. Each one got a chance to come back. We found out that the heart was local so there wouldn't be much waiting except for the other transplant teams to get into town. Dr. Whitneck, the head of cardio at Saint Francis and a very dear man, came in and introduced himself, explained to all of us what was going to happen, and said he wanted this to be the perfect heart for me. Dr. Spahn, who had interviewed me for the transplant list, was out of town and Dr. Endsley was at a conference. I was putting my faith into someone I'd never met before. But, I instantly took a liking to Dr. Whiteneck.
About 1am, I sent most of my friends home to get some rest because they said it would be about 8am before it would happen. So they all showed back up about 7:00 am. Melenda's mom had to be taken to ER that morning for some non-major issue so she traveled between ER and my room to see how things were going. My Aunt Marilyn and Uncle Jim came over as well. Roy, one of the nurses, said it would be ok for everyone to come on back and be with me before they took me down, so we had about 15 people crammed into my room. Just before they came back they gave me the "good drugs" so I was starting to get pretty loopy. Things moved pretty quick after that...nurses started coming in and getting stuff gathered up. They hooked up a portable heart monitor/defib machine and I remember making the remark that it looked like a tackle box. Melenda said she wanted what I was having if I could make a tackle box out of that contraption!
Soon they said it was time to go and we started down to the surgical floor. I remember waving to everyone as I left them and arriving in the operating room. The table was cold and the nurse asked me if I was ready for this, then they told me to breath and things went dark. My next sensation was feeling the tube down my throat and someone telling me to breathe. I then realized that my hands were in restraints and that I wasn't back in the same CICU room...which meant that the transplant did not go through.
Eventually, the tube came out of the throat and people began to come back to fill me in. The first thing I asked was if the sarcoid kept me from getting the transplant, but that was not the case. As they were getting read to cut me they reviewed the donor heart one last time and noticed some bruising on the back of the heart. They were afraid that something would be wrong with it and opted out of doing the procedure. They had already given me the anti-rejection drugs so that was going to be a bit of a problem. Dr. Whiteneck was very disappointed but, as he said earlier, they wanted this to be a perfect heart and they didn't want to take a chance. The only problem I had after that was that I couldn't wake up. I was so tired and exhausted that the drugs just put me on my back.
My friends were so worried about how I'd react to the news, but I think they were more disappointed than I. Melenda was still in ER with her mother and when they all walked down to tell her they were crying. She thought I didn't survive the transplant! They filled her in then went home to sleep.
I stayed an extra day and they went ahead and did the heart cath. Since I had the anti-rejection drugs in OR I couldn't be out in public too much so I didn't go back to work. There were only 3 days left before Christmas break anyway. When I got home, Melenda's kids called and Grant told me that he bet I'd gotten some good rest at the hospital. To cheer me up my three friends brought Mexican to my house and they related what all had happened while I was back in CICU getting ready. Eventually, I was allowed to go out in public and attended the OMS Christmas party at Alton's. Then, after spending the holidays with the folks, I came back into town and my friends took care to make sure they checked on me.
One thing I learned throughout this whole ordeal is that you need to have great friends in your life, and I do. Through the beginning of this until this very day, I have learned that true friends are one of the greatest things a person can have in their life....and I have many.
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