It has been a few weeks since my second dry run. I wanted to blog about it sooner while the experience was still fresh, but well, it’s been a little rough since then.
My family had gone to Baltimore for Thanksgiving. I elected not to go with them for a number of reasons. First, I get very anxious whenever I feel like I’m very far from the transplant center, even if I am within the allowed range. Traffic in Washington can be horrible. A traffic accident here or there can take what might have easily been an hour trip and turn it into several. Too much is riding on these new lungs to risk it. I also get anxious when I’m very far from home because my oxygen needs can be so unpredictable. If I cough a lot, I could burn through three or four tanks in an afternoon. If I don’t, one might be plenty. I’m always anxious about literally having enough air. The other reason was I get so tired easily these days, and I don’t like being around a lot of people. Talking for very long at this point makes me cough, and makes me tired. I don’t like being around a lot of people because the average person doesn’t truly understand infection risk, and what getting sick could mean for me. The more people you are around, the more exposure to germs. Mind you, I can’t never leave my apartment or live in a bubble, but at the same time, I make it a point to avoid large gatherings. (This is especially true during the winter months. For the past five years, I’ve caught something between October and March. It has taken me much longer than usual to get over, and every time, I’ve lost lung function that never came back when I was well.)
My friend Eden decided to stay behind and we had a quiet little Thanksgiving planned. Normally, I don’t like to cook. But, Thanksgiving is different. I look forward to the process and the food, and best of all, the leftovers! Some of my best family memories are about Thanksgiving. The smells and the planning bring up some of those great memories.
So, Eden and I planned our little menu and worked on cooking our little meal. I was about to put the potatoes in the oven when the phone rang. I looked at it, and it said “call restricted.”
I assumed it was a telemarketer, and assumed if it was anything important, they would leave a message. Next Eden’s phone rang. It was Ryan saying the transplant center had called me, and when I didn’t pick up, they called him. He called Eden, and as soon as they got off the phone the transplant center was calling back. This time I picked up! (Geesh, telemarketers are ruining the world!)
Just like last time, that dropping stomach feeling hit. We have to go! The person on call told me not to eat or drink anything and to get to the hospital as soon as possible. As it turned out, I could have eaten something, and even if it had taken a few hours, I would have been there in PLENTY of time. I guess you just never know what the situation will be with the donor lungs, so you plan for the extremes.
I don’t really have a go bag that everyone talks about. I sort of don’t get the point. They are going to make me wear a hospital gown at the first, and after that, someone could bring me whatever it is that I really need. My list has more to do with things I need to keep my sanity while waiting. For example, my phone and charger! I learned this time that even taking my toothbrush (which I did take) was pointless because they want you to use a brand new sterile toothbrush. Finley, on the other hand, has a go bag. I packed up my CPAP (in the past the hospital doesn’t always have the right size mask or a humidifier, and those make such a difference to my quality of sleep!) I checked Fin’s go bag and put a few things in it that had to be last-minute additions because we use them. Eden worked on packing up the already-cooked food and putting it in the fridge. We had to sacrifice the turkey to new lungs. It wasn’t finished cooking, and I didn’t want to risk a food borne illness trying to rescue it. We made sure everything was turned off about eight times because I was so worried that we’d forget something with all of our anxiety.
Eden drove me to the hospital. She did an amazing job as I know that was a stressful drive!!!! We joked it felt like rushing to the hospital with someone in labor getting ready to have a baby. She was being extra careful so as not to get pulled over etc….and I joked that if it happened, we’d talk the police into giving us a sirens escort to the hospital! Ha ha ha (this was all said in jest – Eden wasn’t in any danger of being pulled over!)
The on-call coordinator had called me back to tell me what room I’d be in, and where to go. We went to the nurse’s station and announced we had arrived! They took us to a room where we waited for some time (it might have just felt like that.) Getting admitted took no time at all. All of my information and medications were already in the system, so it was just a matter of confirming everything. More waiting.
Sara dropped Ryan off and soon he found us. We all sat on my bed because there were no chairs in the room really. I was starving and already feeling a bit dehydrated. I hadn’t eaten much all day in anticipation of the Thanksgiving masterpiece meal. I’d been busy, so hadn’t really kept up with my fluids very well either.
One of the doctors arrived, did a physical, and told us the surgery, assuming everything still looked good with the donor lungs, wouldn’t probably happen until the morning. I was free to eat and drink until after 9:00 pm. It was around 7:30 pm. Awesome! Eden hadn’t eaten either, so she and Ryan set off for the hospital cafeteria where one of the nurses assured us there was a nice turkey spread for the holiday. But, it was too late. The food was put away. They came back with a cold hamburger, some chicken nuggets and some chips. I had the nuggets. Eden had the hamburger. We shared the chips.
I didn’t care!
New lungs (as it turned out it was only one lung) – who cares about what you eat! We brought the cranberry orange bread I’d made. I saved a loaf for Ryan to snack on through the process, and gave the other loaf to the nurses. Sara and her sister Jane had sent us pie and cheesecake, which we all enjoyed very much. With the anticipation of a new lung, it was the best Thanksgiving meal I’d ever had.
Eden left to go home, and Ryan stayed to spend the night with me. I felt a little silly asking him to stay. I’m not a little kid after all. But, I’d regretted not asking him to stay the first night when I was hospitalized the last time. I was in major respiratory distress then, and the anxiety through the night was hellish. Ryan gladly stayed. I can never say thank you enough times! I think it made a huge difference, even though we didn’t really talk much.
They finally brought Ryan a recliner for the night. I use that term very loosely. It might have been better described as a chair that popped open into a folding long table – hard and cold and very squeaky! Poor Ryan!
Meanwhile orders had been put in, and for about two hours my room was a hub of activity. Blood was drawn. IV’s were put in. I think the Thanksgiving staff wasn’t really used to pre-transplant prep. There seemed to be some confusion about how many tubes of blood were needed, and where they should go. Finally, a tech arrived on the scene. The RNs seemed to defer to her. “She knows what needs to be done,” the nurse assured me, and boy did she! She was so efficient! I wish I could remember her name so I could find out how to let her bosses know what a great job she did!
She organized the blood draw confusion. She explained to me that I had to take a special kind of pre-surgery shower with this special soap. She gave me very exact instructions about how to wash everything (I was glad I got to wash my hair! Thought of you Rebecca!) Then she had a special sterile toothbrush and toothpaste.
When I came out, I must say, I felt very, very clean. The soap was hash and maybe not the best for my dry skin, but I did feel super clean! It was one of the best showers I’ve ever had. I was trying to keep calm, but I must have been holding the tension in my muscles. The hot water beating down on me never felt so good and so calming!
When I came out she had completely stripped the bedding and replaced it with all new. (It was fresh when we arrived – don’t worry!) The room was clean, but she had re-cleaned it. Ryan could no longer sit on the bed because the wanted even the sheets to be absolutely germ free.
After she left, we settled in for the night, and the long, long wait. We were told they would probably come for me about 3:00 am to take me to pre-surgery. I think we both accepted that sleeping wasn’t really going to happen. The anxiety, coupled with the expected early wake-up call, and well, what was the point.
We watched The Big Bang Theory and Young Sheldon (two of my favorite shows). We watched some news. As we both grew sleepier, I turned the TV off. Ryan was feeling nostalgic about our childhood. He started bring up things saying….do you remember…??? It was interesting to hear the things that were coming to his mind on this trip down memory lane. They weren’t at all the things I was thinking of, and some of them I’d completely forgotten about! Finally, I turned on some podcast. I know Ryan can’t sleep with the noise, but I get very anxious if my mind doesn’t have something to keep it occupied. I changed podcasts a lot. I had a hard time finding something that felt interesting or engaging, yet quiet wasn’t working either.
Occasionally I’d look over at Ryan and he looked sound asleep. I’d whisper as quietly as I could, “Ryan, are you awake?” and he’d always answer in a full voice, yes. Poor guy! I think his just being there really helped. Sometimes it isn’t about what you say or do – it is just being present in case.
Ryan claims I fell asleep a few times because I was snoring. He said if he moved just a little bit I’d jolt awake. He’s probably right. That chair seriously needed a little WD40. I kept watching the clock knowing they’d be coming for me. I didn’t know how long they’d let Ryan stay with me. The time came and went. They revised it to 6:30 am. About 5:00 am the efficient tech arrived again. She had me take another antiseptic shower, and changed my sheets again!
Finally they arrived. It was time! I moved to the gurney and away we went. Ryan was allowed to come with me. They backed the gurney into a little bay area and the activity ramped up. The surgeon came and we went through the consent again (second time.) The anesthesiologist arrived. I liked him. He explained everything they’d be doing in the operating room before they put me to sleep. I was grateful to know what to expect, and what they were doing, and why. My kind of guy!
More lines were put in and suddenly I felt panicked. It just lasted a minute as I realized, this was going to happen, and soon! I started to feel like I couldn’t breathe, but I knew it was just anxiety. I talked myself down. I was on all sorts of monitors. I could breathe. If I couldn’t, they’d know!
Everyone on the surgical team looked as though they were beaming. They seemed as excited for the new lung as I was.
Sara arrived and joined us. She and Ryan took turns sitting in the only chair. It was a long time to be standing. They kept telling us it would be any time now, yet that didn’t seem to match up with what we were overhearing…or did it? We were hanging onto every little snippet of information trying to figure out what was going to happen next.
About 10:30 am the surgeon reappeared and she didn’t look happy. I knew from her face it was a no go.
She explained that when they went to get the donor lung, it was adhered to the abdominal wall. When they tried to free it, it started bleeding a lot. They didn’t feel it would be safe to transplant, especially to someone with a bleeding issue.
Everyone looked so disappointed. They all seemed so concerned about how I would take it. Honestly, I took it pretty well. My first question was whether I could have a drink of water since this wasn’t going to happen. I was so thirsty!!!
If I had been at the stage that I was in the hospital already because I was so sick, I might have been more emotional. But, I’ve watched so many of my HPS friends go through this process that I know these “dry runs” are common. It is just part of the process. I certainly didn’t want them to give me a doubtful lung, so what else was there to do?
After a while we were taken back up to my room. Getting discharged took a while. I needed to have the IVs and lines removed etc.
Finally, around 1:00 pm, we were sent home. My friend Mary had Finley as she and her husband will be his foster parents while I’m in the hospital. I let her know we were home, and stayed awake until she brought him home.
I had told her to take her time. Whenever it was convenient for her to bring him back would be just fine. Honestly, I was really, really happy to have him back. All I wanted to do was cuddle with my boy and go to bed.
Through all of this I was thinking of the donor’s family, and that they were losing their loved one right at Thanksgiving. As we were going through the process, I tried not to think of it too much. I was just trying to get through it so I was compartmentalizing a bit. The next day, after I’d had a night of sleep, I had a good cry. I’m sure everyone would have thought it was because the transplant didn’t happen. But, I was okay with that. I just felt so badly for the other family. I don’t think I’ll ever get over how strange this duality is between being so hopeful about a second chance at life while another family is in the midst of death