JOY IN THE PAIN, MORE MOUNTAINS TO CLIMB
Days up to today. 10ish thru 12ish -
Hey friends. It has been a few days since I blogged for my every day challenge. And I apologize for that. I hope you didn’t miss me too much. I sure missed you. Whoever you are. Are you out there? I’m sure you’re delightful.
So last blog I mentioned the “series of unfortunate events”. I don’t love referring to it that way, so negatively. But the truth is, it was some really hard and gruesome stuff. With my heart attack, they were able to open the blocked artery with a stent. They saw another artery with significant blockage so they decided once I was recovered from the first one, they’d do the second. So they did. The procedures went well. Sadly, every time they would do another cath, another blockage would show up. It wasn’t blockage like the first. Not like cholesterol and whatnot. It's hard to say, but a combo of the blood thinners and stents and the procedures themselves, my heart did not like one bit.
I had episodes of passing out and got to the point where the cath showed a blockage in my widow-maker artery. Or widower-maker, rather. At that point, my heart was not rejecting and was super strong. Thankfully, the heart attack had not damaged my heart at all. She was strong and kept ticking! So our choices were to get another heart transplant, or have bypass surgery. Well, I sure as heck didn’t want to lose this beautiful heart. I wanted to hang on to her as long as possible. So, we opted for bypass. And it was a success! Until it wasn’t.
It's hard to say exactly when the bypass failed, but I started passing out in my sleep again. Very strange sensation. And the cath showed the worst. All that hard work and recovery from my second open heart surgery for nothing. So not even two months after I had bypass, I was being worked up for a second heart transplant. And since I was trying to have another heart attack, the option to wait for my heart at home was not happening. It was not safe to be home. So I would stay in the cardiac ICU until that heart became available.
From the window down the hall, I could see the forest a couple miles away where our home is. It was so close, but so impossibly far away. Just over the rainbow. We joked about that since the hospital is on Rainbow Boulevard and literally stood between me and my home. My family. My plants and pups and piggies. All I hold dear. All that brought me healing and life.
I got to see my kids and husband and family quite a bit, but it wasn’t the same. I was quite tethered to monitors and such. I did make my “dorm” quite homey. I had a lot of great days waiting, and a couple where I just cried all day long. And it was ok. I ached to hold my children. I knew I would have to climb another mountain or two before I was able to do that again.
While I was away, I had healing on other fronts. I was lifted by many visitors, though not as many as I would’ve liked. I got tired very easily. And I was gifted so many beautiful things. So many healing, helpful, beautiful, loving, lovely gestures. We didn’t know how long I would be waiting, so we did what we could in our new, temporary normal. We used Panera gift cards to eat together in my room on my extended tray. It was fun and funny. We snuggled on my bed and watched The Office just like we would at home. On May 16th, with the help of my awesome fam and nurses, I was able to throw a surprise 13th birthday party for Bella! It was such a blast.
And after the party, everyone left. And I snuggled up in my bed with my eye mask and soft blankets from my dear Cori, with the smell of essential oils relaxing me, my pillow from home with the smell of my husband and son on it. And I cried myself to sleep. I didn’t do that often, but plenty. It was truly the hardest part of the wait. I didn’t particularly look forward to the surgery and the recovery, but the thought of that wasn’t nearly as painful as having to say goodnight to my family as they walked out the door. Or via facetime.
I have had friends wait days, and others several months, in the hospital, for their hearts. How long would it be for me? The thought that I didn’t deserve this THIRD chance at life kept me awake at night. My cardiologist who I have had since I was 18, who I lovingly call Papa Bear, was so helpful. He changed the language up a bit for me. He said instead of “survivor’s guilt”, how about “survivor’s responsibility”? He said that I should continue to live as beautifully and fully as I always have, even before my first heart transplant. That sure put a salve on a deep wound and helped me lift my chin a bit.
The cardiologists and transplant coordinator that I had known since I was 18, were no longer going to be my docs. There is an awesome transplant team that came to KU over the past couple years, and I would be in their care from now on. And as much as I loved the former, I was already a huge fan of the latter. Dr. Sauer was my first cardiologist who is younger than me, even though its just a year or so. He is amazing. He is kind and pretty dang smart. He started this heart transplant and VAD program from scratch. There was an amazing cardiology group already, but the heart transplant program wasn’t there. He brought an awesome surgeon (who did my bypass), and a team of other docs. Dr. Haglund was there when I woke from my heart attack. He said I was a butt-kicker. I like that.
So with this team in my corner, and my new coordinator Sarah (& sometimes Joey), I was ready for that call. The word that they found the perfect heart for me. The news that I would be one step closer to home. To alive. To healing.
As I’m sure you can gather, sometimes life is tough. All is well, but I still struggle physically some days/weeks. I apologize for being unable to write every day. Moving forward I will write a couple times a week as I am able. Thank you for reading and sticking with the story. You are loved!