It's taken me about a week to come to terms somewhat with how we left the transplant team last week. You see, for the past two years I have held steady with my pulmonary function tests that give the doctors an indication of how these airbags are holding up. And, I am happy to say that they are still hanging on. I'm still at a whopping 26% lung capacity and I walked all of 1350 feet, using 3 liters of oxygen ... all of which are very similar to the past few years. So, what's different? Why then did they mutter those terrifying words, "We think it's time to go active"?? I'm not going to lie, I pretty much "black out" at these appointments, well, not literally of course, but they're talking, I hear what they're saying ... but it doesn't sink in. This is why I am so glad I have the support I do. This time, Bob and I sat in the cold, small, sterile exam room as we heard the words we have known would come, but are always so glad to NOT hear when we're there. "Active".
And, it makes sense. After I get over the extremem emotional rollercoaster of what is happening, I can think clearer and I slowly turn the corner emotionally with a situation I've been terrified of since it was first mentioned to me when I was about 20 years old, 13 years ago. A double lung transplant. Can you imagine, they basically cut you in half, take out your old lungs, one at a time, disconnect blood flow, nerves and reconnect and replace those cavities with another person's former lungs. A generous human soul who is giving the ultimate gift ... life. A second chance. It's mind boggling. It makes you think crazy thoughts. It tears you up both mentally and physically. But it's also exciting, and fills one's heart with hope, and a sense of purpose that has slowly been stripped away. It gives me a glimmer of hope that one day I MIGHT be able to actually live a life not attached to oxygen, in pain or so fatigued from just being awake.
I told my husband the other day when I was having a particularly emotional hour (yes, it changes hourly these days, call me crazy, lol!), that I feel so robbed. PCD has taken so much from me. It has stripped me of my ability to do so many things that I once enjoyed. Sports, running, working, traveling, sleep ... just to name a few. These days, EVERYTHING is so much harder than it's ever been. The little things that I loved to do, aren't as much fun anymore because they're so damn hard. For example, shopping. Many people (especially Bob) can attest to my love of shopping ... (for anything really) ... Well, now I have to cart oxygen around and my energy has plummeted so, it's not as fun as it used to be. I've had to "ration" or monitor my energy out like a diabetic does their sugar levels. I feel like my energy is on a budget. I have to prioritize now more than ever. If I have a particularly busy day one day, the next day I am pretty worthless. I say all of this not for pity, but because this is something that has changed, and leads the team to think I should go active. They consider quality of life a big indicator of timing for transplant. There is a term they use called the "transplant window". This is the time frame of when you are sick enough for transplant, but not too sick where they're concerned you won't make it through surgery. I am in that window, and the fragility of my situation is very real. I've got to stay healthy and strong enough for transplant, and that my friends is my new goal in life. I am fighting for a second chance at life, and if I am lucky enough to get that chance, I will be forever indebted to someone. I want to live, not just survive.
So, the plan going forward at this point is as follows. I have to update some tests for the transplant list. I will have to have a right heart catheterization, a CT scan, some blood work and maybe a few other tests. I plan to do this in February and then we will meet with the transplant team in March to review results, crossing fingers there is nothing wacky with my tests since the last round in 2014. They will then present my case to the Board and a decision will be made as to whether or not they will consider me for transplant. If accepted, they will give me what is called a "LAS" or "Lung Allocation Score", which basically determines how high or low (or critical) you are on the list. The lower the number, the "less sick" you are. If you are lower on the list your wait time is anticipated to be longer. They guesstimated I would have a LAS of about 35-38 and a wait time of 6-9 months. We were told once you are at about 40, is when "the calls" start coming in and wait time is about 3-6 months. We were told to anticipate "dry runs" ... meaning they call you for lungs and can go as far as prepping you for surgery, but last minute the lungs are deemed no good for transplantation. Of course, once you go on the list, you can be called anytime, of any day, so one has to be prepared to go into surgery once you are active on the transplant list.
Imagine, every time your cell phone rings, wondering if it is a call that could save your life?
Thank you all for taking the time to read my story. I wish that my health didn't put us in this situation, that it didn't cause so much worry to the ones I love the most. Besides actually living with such a severe disease, seeing the hurt and worry that my husband, my parents, my brother have go through, is the hardest part of it all. I am determined though to put up the strongest, hardest fought fight of my life in this entire process. On we go .... !!!!
Rebecca
