Friday, April 8, 2011

The rest of the Pulmonary Fibrosis story

Well, long-ish story short, we lost Dad Thursday March 31 at about 8:25am. That seems to be all that matters in this journey, but I would like to pick up approximately where I previously left off for anyone who may be interested.

Dad's cardiac catheterization came back clean. He had a 35% blockage, which, for a 63 year-old, isn't too bad. If he'd had a 70% blockage, they would have either had to do a by-pass or an angioplasty at that point, which would have put him on blood thinners for 6-8 weeks, and then a revisit of the qualification process. Luckily that didn't happen. So, that went well. The final hurdle at that point was the consultation with the thoracic surgeon. The surgeon came by and visited on Friday and we were assured that everyone would be writing up their reports as quickly as they could. The transplant team normally meets on Monday mornings, but they were approaching my dad's case a little differently and were applying for expedited listing with the state and all that good stuff. I got a call at 9:17 Saturday night (funny how you remember some of these things) telling me that my dad had been listed on the lung transplant list and that his 'number' was 92.33. The coordinator said that this was a high number, but we were hopeful that this meant that his wait would be shorter. So, he was on The List, which was where he wanted to be. Now, we waited.

I had noticed over the course of the past week of his hospitalization that it seemed that his disease was still progressing, since the treatment that they were having to use was becoming more and more intense, but we were hopeful and his mood was great. We decided, and he told us, that we needed to go back to our lives while he and my mom waited. We left my mom in Cleveland on Tuesday and headed back to NH, and Max and Jackie went back to OK. That was a really difficult ride for all of us because we knew what we were driving away from.

I went to work on Wednesday, but kept my phone close by. When I came back from lunch, there were two messages on my phone, a text message, and an email from Matt simply telling me to call him. My stomach dropped. I knew that if it were good news, the message would have been different. With my fourth block class waiting patiently, I called him. The news was tough to take, that Dad had had a rough night and probably wasn't going to make it. I quickly explained to my class that I had to leave, they understood, the teacher next door watched them, and I bolted. Once I got home, I repacked a suitcase and bought a plane ticket back to Cleveland for that night. My flight left at 6:30 and got to Cleveland at 11:00pm. For the second time in a little over a week, I was flying to Cleveland.

I was able to talk to my mom, my cousin, and Max a little bit while things were being coordinated and found out that Dad had been struggling the previous night and they called my mom down to the Clinic at about 6:00 Wednesday morning. They'd had to put Dad on a BPAP, which is a pressurized breathing mask thing. He hated it, so in order for him to be able to relax into the machine, they'd had to sedate him a bit. He was still able to wake up and respond a little bit at that point. Because of the progression of his disease and the weakening of the rest of his systems, though, the transplant team could only give him until midnight before they'd have to take him off of the eligibility list. Max and I were on our way, and landed in Cleveland shortly after 11pm. My uncle picked us up and took us straight to the Clinic. We saw Dad and he woke up a bit and squeezed our hands. He knew that we were back. He knew that we love him. He knew that we're proud of him. It was so hard to see him that way.

The Clinic has a hotel that is literally a block away, and another uncle had gotten us a room there for the night. My mom was exhausted. The MICU doctor was trying to get us to take the mask off and let him go at that point, and none of us felt like we could make that decision at 1am. So, my mom and I went and crashed for a bit while Max stayed with Dad. My dad's family (his sisters, their husbands, and their kids) have been absolutely incredible throughout this whole crisis, and I have no idea whatsoever how we would fared without their constant support, love, and assistance. Two of my dad's sisters stayed with him for most of the night, my uncle and cousin were in and out, and he was never alone.

My aunt called us back to his room at about 6:30 Thursday morning because Dad's heart rate was getting pretty high. We knew that his systems would just shut down as they were on overdrive compensating for his lung disease, and it seemed like this was beginning to happen. We were able to decide at that point that we needed to let him go. He needed to rest peacefully. He had been through enough, and there was nothing more that could be done for him. He had signed a DNR and we had explicit instructions from him to fight as hard as possible until there was no hope, and when that hope was gone, we were to let him go. Once he was taken off of the transplant list, there was no hope for him, and we needed to let him be at peace. He had also told my mom that he wanted to give the BPAP 24 hours, and that was at 8:00 on Wednesday morning. His nurse made sure that he was comfortable and sleeping deeply. We cried. We prayed. We cried some more. We prayed some more. And finally, his respiratory therapist took the BPAP off. Within 5 minutes, he was gone. Without any question, ever, that was the worst thing that I have ever seen in my entire life.

Everything since then has seemed like a blur. We slept a little. We cried some more. We made some plans. We cried some more. We laughed a little, then cried some more. You get the idea? We had a memorial service for him in Cleveland for his family and some friends in that part of the country this past Monday. Matt's folks came out from Chicago, as did his roommate from college. It was great to see them, although it was such a sad situation. Max, my cousin, and I all spoke on his behalf.

We all drove home to NH on Tuesday and started putting things back together out here on Wednesday. We've got another memorial service for him tomorrow (Saturday) at our church here at home for his friends and clients in the area. His boss wrote a beautiful tribute that was sent out to all of his clients, for whom he was still actively working. I have a feeling that tomorrow is going to be rough. But, we'll make it.

There is so much more to this process, and we're all so sad. I'll try not to be Debbie Downer, but this is so unpleasant. I know that he was a Believer, so I feel certain that he's found the best campsite by the greatest fishing hole, but we miss him down here.

Again, please leave a question if you want or need to. If there is any way that I can help someone else who may be facing this situation, I would truly love to do that. It's been a rough road, but it helps to know that someone else has walked it before you.


  1. Krones-
    I can't even begin to imagine what this has been like for you. It is certainly a really s!tty situation. I've been thinking of you a lot and I hope that tomorrow isn't too tough. Hopefully we can catch up about happier things in the next few months.

  2. WOW! There are no words. I lost my Grandma to Lung Cancer in 2008. It was very sudden, and hard to wrap my mind around. I can't imagine going through this with a parent. You have proved yourself strong. God bless you and your family at this time.