Please Give Me Strength & Calm

When I left Dr. Crespo's office Wednesday I was scheduled to see her in two weeks, but she smiled and said "But maybe I'll see you sooner"...meaning I might get "the call". And then as I was leaving rehab yesterday the same thing happened with the mention again of how high my LAS score is.

Each time someone has said something like this to me, while they are grinning and dancing around, I have put a fake smile on my face and secretly my stomach drops and I think "oh please give me a little more time".

I am not ready to have the transplant, and I don't know if I'll ever be. I think if I was hospitalized or really felt like I was on my deathbed, I would be ready; it would be an easy decision. The truth is I am scared to death and I have thought about just coming home...maybe it would be best if I just went home and try to die peacefully.

And then the guilt sets in...so many people are supporting me, so many people are excited about my LAS score. It seems to be the "thing" to ask when you meet people at clinic. "Hey are you Pre-OP or Post-OP? Oh, what diagnosis do you have? What's your score?" And when I tell them mine is 53, the reactions I have gotten vary from extreme excitement to hints of jealousy. So then I want to say "here take my score, I don't even want it" because secretly it scares the crap out of me, and I don't feel deserving of it.

My feelings, which I had been keeping inside, spurred a conversation with Andrea and Steve the other night. We had a very serious heart to heart about the challenges we are to shortly face, what if I were to die, my wishes, etc. All of which we have talked about before, but it was to the side of us you know, never right in front of us like this, so we needed to do it again.

I told them how I was feeling. I think they were a little shocked at first. They said they would support whichever decision I made, but that they selfishly wanted me to get the transplant because they want as much time with me as possible.

I asked them if they were ready for this because I wanted to make sure they understood how risky, how hard, how long, and how gruesome it really could be....I guess because that is what I've been thinking about and have read about. Even though we have all had the classes, the training, and a long time to prepare for this....we all agreed that we don't think we could ever be truly ready.

People have surgery every day, but getting a double lung transplant is more than just a surgery....my life, our lives, will totally change. It's trading in one set of problems, rolling the dice, and hoping the new set of challenges in keeping my body from rejecting the donor organs is better to live with than what I traded it in for.

It's not like these dime a dozen procedures where you go in and there's like 1 in 100,000 or 1 in a million chance of something going wrong. And the list of things that could go wrong are presented to you, and can be treated. I have heart caths on a routine basis because that is the only way to measure the pressures accurately between your heart and lungs. The cut into a major artery or vein (depending if they are doing right and/or left), usually in your groin, put a catheter in and push wired probes up into your heart and lungs. Pretty freaky huh, technology has come a long way. Some of the risks are piercing through an artery or vein, or getting blood clots....but the risks are very minimal (one of those 1 in a million or something). It's an outpatient procedure, you get up and walk out a few hours later....after they just put stuff up in your heart and lungs!

During a double lung transplant, there's a 15% chance I won't make it out of the O.R. The risks are so great and lengthy, there's not even a list. I will be on a heart and lung machine during surgery. I will be in ICU at least a week. I will be on a ventilator until it is proven that my new lungs are working on their own. I will be in the hospital at least a month. I will be on a feeding tube at least a month. I will be given huge doses of immunosuppressant drugs in order to keep my body from rejecting my new lungs. I will have to take these medications for the rest of my life. I may become diabetic because of these drugs, I may become anemic as well and require routine blood transfusions. There are so many things that could go wrong. I have an 80% survival rate the first year, a 50% chance the 5th year. Lungs don't last forever.

And I know that UPMC really is the best at what they do, they have helped many people, these people have gotten most of their lives back. I have met many patients that are 10, 12 year post-ops, and I think its great, but then you hear more of their stories....I developed post transplant lymphoma, I had chronic rejection and spent 6 months in the hospital, etc. etc. And I just think, is it worth it? Will I live in fear everyday waiting for something to go wrong...if I make it that far?

And so yes I am scared. I used to be brave. I have had so many tests and probes just to get here, and heck I did chemotherapy for a year as an experimental treatment to stave off the Scleroderma, and I tried all these experimental drugs for the pulmonary hypertension...and I didn't feel scared like this, I didn't have any trepidation. So, what's wrong with me now? I fear I have lost my strength, the strength that got me on the transplant list in the first place.

My mom passed away last month, right before we were to move here, and I spoke at her memorial. I sent my speech to one of my best friends for review, and she told me when she read it, she actually saw me. That made me proud. I spoke about my Mom's determination, her fight, and how she embodied the meaning of perseverance. And I said that if there was one thing she taught me, one thing that I would strive to carry on, that's what it would be...her perseverance, because I know that is what I will need. But since her death I really haven't felt the same. I thought I was ready for her to pass, she had been sick for such a very long time. But because of this recent change in me, I now fear she was my strength and her passing its kryptonite.

And so I apologized to Steve and Andrea (and I probably should to all of you too). I am scared, I am angry, I am worried, and I fear have lost all of the patience, calmness, and strength I once had.

I know I need to focus on the positive. And I guess I need to try to realize how sick I really am. A panel of the nation's best doctors have told me I am sick, have said to me this is the only way to prolong your life, so in my brain I understand....but somehow its not connecting with the rest of my body. I know I am sick, I sure as hell feel sick. It's just that I have continued to adapt for so long, I think sometimes I don't realize it.

As far as the strength I once had, I hope that it is only hiding, recovering, taking much needed deep breathes or sleep days, waiting to reemerge from within when I will surely face the greatest challenge of my life. In the meantime, I have accepted that it was my heart and my strength that set me on this course a long while ago now, so I have resolved to stay it true. Although, I did warn Andrea and Steve they may have to prevent me from bolting out the O.R. door (well like I can bolt anymore anyway :)

Side Story (but it's a good one) - I was 4 and about to enter Kindergarten and my sister was a teenager, so my Mom took us down to the health center (I remember it being one of the old buildings behind Bay Medical) to get my vaccinations and my sister's booster shot. I remember we were in a room with several chairs and a examining table. The nurse asked who wanted to go first and I pointed at my sister. She hopped up on the table and the lady gave her a shot in the arm. Then I remember acting as if I was heading towards the nurse for my turn, but then without a word...I bolted right out the door instead. I'm not exaggerating, this is a true story. I ran like the wind. I went through doors, turned corners, and even remember pushing some double swinging doors open and seeing two doctors in medical garb, who both gave me a funny look. I had no plan, I had no idea where I was going, I just ran like the devil was chasing me. I remember seeing daylight and windows ahead of me, and all of the sudden this arm came out of a room and plucked me up in mid-stride and into the air. You see, I hadn't done any RECON...come on, I was 4, but it turns out the vaccination room I had been in had two entrances; one on either side of the room. Apparently I had circled the building and was passing in front of the other entrance when my mom snatched me. All I saw was the arm, but when she turned me around and I was dangling in mid-air...Oh man, it was a look I will never forget. It had the you're-in-for-the-spanking-of-your-life-when-we-get-home mixed with something I didn't recognize at the time, but now I know it was shock and embarrassment. Needless to say the next thing I remember was being held down on the table and of course I got my vaccinations. I'm sure I was screaming and crying all the while. We laugh about it now, but I am sure my mother was horrified at the time. I ended up not getting spanked, I actually got pretty sick from the shots, which is probably why me getting my booster at 16 was never mentioned :) Don't worry...I got all my vaccinations myself when I went to college. But Fight or Flight is deeply ingrained in us all.