Life Altering News
12:34 pm, January 27, 2017... a moment forever burned in my memory. Leading up to this moment I had been admitted to the hospital, AGAIN. My parents and I just spent a great weekend in Pittsburgh with my Aunt, Uncle, cousins and friends at a Pulmonary Hypertension fundraiser. However, as the night ended I was not feeling my greatest and had retained fluid in my abdomen and calves. (My diseases put too much stress on my heart which causes me to retain fluid)
On the way home the next day, I ended up feeling much worse and began having chest pains that made it almost impossible to breathe. So, we went directly to the Cleveland Clinic. Without fail I ALWAYS have the craziest roommates. While waiting in the ER to be transferred up to my private room, a lady was brought in. We learned that she burnt her finger (and pretty badly according to the ortho surgeon) and I guess it got squishy the next day... SO she cut it off!!! WITH SCISSORS. No joke, you can't make this stuff up. My mom and I like to call these unique people "joy bombs". Little bombs God gives us when he knows we need a good laugh. Furthermore, we learned that they also had to check her toes just to be sure they were all there. Could you imagine going into your job and having to worry about another person cutting their extremities off because they didn't like the way they felt? This woman acted perfectly fine and calm as well! The medics and nurses kept commenting on how she's got a nice smile especially for missing the top of her finger. (Personally, I think that just proves the crazy... The joker smiles a lot too) Made for an interesting wait to say the least!
After meeting with the Pulmonary team, we decided that while I was already stuck there, we should schedule to get some of the transplant work up done. A few days later after pulmonary function tests, gastric emptying test, scans to make sure my esophagus works and functions properly, a right heart catheterization and many other tests and scans the transplant Doctor came in to talk to my parents and me. He began discussing some of the results, their thoughts on my case, and their new goals for me. Finally, my dad asked the big punch in the gut question that we needed to know the answer to. What were they thinking in terms of life without a transplant and are we to the point where its our only option. I had to look forward at the wall in front of me because my gut feeling said what was about to come out of his mouth wasn't going to be good news. Dr. Lane then proceeded to say that they were thinking I had 6 months to 2 years without a transplant. The feeling I got in my chest is almost indescribable. It almost felt like my heart swelled up, exploded, and then stabbed. I actually don't even think that accurately describes it. Then he proceeded to explain why and what the averages were for lung transplant in regards to life expectancy. As he continued talking, I couldn't look at him anymore and kept looking at the wall. Eventually, I was struggling to keep it together and started crying but, covered my face with my blanket to help me keep from sobbing.
As soon as they left, still trying to remain in control I cried. Hard. My dad walked over, sat on my bed, and put his arm around me. I looked over and saw my mom facing the windows with her head down, crying as well. My thought at that moment was why. Why them? My parents are the nicest, most generous, respectable, self sacrificing people I know. Seeing these monsters of lung disease constantly kicking them in the teeth, its not fair. Why do they get this cross to bear? Why my kids? They're so innocent, they deserve so much more! They don't deserve to have something so out of control completely dictate their lives. My four year old constantly wanting to know when I'll get better and be able to breathe again with out oxygen. Yet, my two year old doesn't even know what its like to have a mom who isn't sick.
Then, why me? What have I done to deserve this? I've never wanted a lot out of life. All I expected was to have a career that I enjoyed doing, most days, have kids, a good marriage and happy family. I have never done anything destructive to my body and have always taken care of it. But somehow I got this EXTREMELY rare disease. Never could I have imagined that a doctor would come into a hospital room and tell me how long he thought I had to live. That I'd be looking at an organ transplant. Even scarier, lung transplant ON AVERAGE last 10 years. So what? I get to make it maybe to 45 years old? Life is still happening at that age! Since then we've found more hope in hearing from other recipients that they're on year 15 and going strong. So there is hope that medicine will advance as well as drug therapies for rejection or better ways to transplant will be discovered.
My dad, with his arm around me, started talking to me and comforting me. Reminding me that, while everything they just said is scary, we needed to know so we could make the right decision. They tell you those things so that you take the risks seriously. He talked more about the positives and that we're going to get through this. We always do. I've beaten a lot odds so far, my body has proven to be resilient. God has proven he's bigger than the averages and the statistics each time we've faced them. Patients with PVOD don't usually have a great prognosis. I went 2 and a half years with no treatment and somehow survived that. When I was in septic shock, they said even a healthy person would have a 50/50 chance to survive the infection I contracted. With a compromised immune system, they thought I wasn't going to make it. Not only did I come through, but I beat it in DAYS and was out of the hospital in about a week.
After I settled down, I headed to the bathroom to splash some water on my face and compose myself. Looking in the mirror, I thought to myself, "Ok Madison. Time to pull yourself together and suit back up. This is the new reality and you can't change it. Time to accept it and move forward. You can't afford to sulk or slip into an emotional funk. The kids need you." I then thought about how in the past I thought I would have been angry with God. But I evaluated my feelings and thoughts and my only thought was "I need to dig in deep because I'm in for a rough ride and I need him now even more. I'm going to need to lean on him."
My mom, dad, and I went to the rooftop with some snacks. We continued our discussion. My parents pointed out the positives, where we can have hope, and reassured me no matter what we are all going to get through this. They started helping me reset my perspective, which they're so good at. We began looking to the future and dreaming of what I will be able to do with my new lungs.
They finally discharged me the next day and I was feeling more hopeful. Still scared out of my mind but I had accepted my new reality. As usual my kiddos gave me the best welcome home. They make everything so worth it. I'm looking forward to running around with them and having the energy to be the mom I used to be!