Tuesday turned out to be an exciting day! I collected three hospital bracelets (my jewelry) in one day, and none were allergy bracelets etc. They were for three different admissions! Woohoo!
Bracelet number one
The morning started off like my Tuesday mornings usually start off. I’m up at 4:30 am to get through all of my medications, take Finley out, and have plenty of time for coughing and sitting down to catch my breath to be ready for the cab at 7:15 am. Rehab wasn’t going as well as it had on Friday, but you have good days and bad days. I was on one of the bikes, and it was almost time to go. One of the respiratory therapists came over and said the transplant clinic had been trying to call me and they needed me upstairs right then. Of course my phone was in my purse because I was working out. At first it didn’t hit me why they were looking for me. I thought they might want another sputum sample and I have my paratransit ride to go home after rehab. It is hard to just “run up to clinic” when you never know how long the wait will be, and you’ve got a ride waiting. I felt mildly annoyed.
The therapist said, no, not after rehab – they want you right now. It dawned on me what she was trying to say. Suddenly I felt tingly all over. You wait and wait for the call, and then when it finally comes it is a feeling of shock and being overwhelmed. My mind was racing. This could be it!
One of the therapists came up and waited with me until my sister-in-law Sara could arrive. I hadn’t reached Ryan, but she had and he was on his way. It was faster for him to come by metro than for her to fight downtown Washington traffic during rush hour to pick him up.
After the rush upstairs, we waited, and waited (this would be the theme of the day – waiting!) I think 30 minutes is five hours in the transplant time warp when you are waiting to find out what happens next.
Hospital bracelet two
My transplant coordinator came out and explained that they thought they had lungs (I actually never knew if it was one or two – I actually forgot to ask!) They needed to take a blood sample and have it sent away. She actually apologized that they’d probably have to repoke me later for more blood. I assured her she could poke me as many times as they needed – no big deal!
I had to wait while all the people that were there for morning clinic got their blood drawn, and then they took mine. I went back to the waiting room, and we waited some more. It felt like hours. Ryan and Sara were there, and I think we all felt like we should be distracting ourselves with conversation, but I was coming down from the initial shock, feeling a bit out of breath, and really didn’t have much to say. Happily one of my friends from rehab who got a transplant last January happened to be there for a follow up visit. We got to chat a while and that couldn’t have been more perfect. Sometimes it isn’t the talking that helps. It’s just being present to talk if needed – to know that someone is there if you start to freak out.
My coordinator came by again and said they were admitting me and we were just waiting for the room to be cleaned. Okie Dokie! We waited some more, and some more.
My coordinator came out again and said they’d like to move us to a conference room. Great – we’re going to get the skinny on these lungs! We waited, and we waited.
The doctor arrived and explained the lungs were not going to work out. When they received the CT scan of the donor lungs, they had what are called infiltrates in them. These could be nothing, or they could be a problem. The lungs were too far away to send someone to inspect them in person, decide whether to accept them, and get back in time. Sadly, we learned the donor was a young person.
Sara and I had been talking about how odd it feels to know something horrible is happening to another family, and yet you can’t help but be grinning ear to ear. I felt very guilty about how happy I felt when I knew they must be in the midst of so much grief. I spent the waiting time thinking about how after this hard part, things would start to get better instead of worse. I started thinking about my list of things I want to do post transplant. That’s how I spent much of the waiting time – daydreaming about effortless breathing.
I told the doctor that I had intended to e-mail my coordinator when I got home from rehab. During the past week I felt much more out of breath and needed even more oxygen. So, just for grins, she decided to order a spirometry test.
To do this, it meant a clinic appointment. Since we weren’t on the schedule, yep, more waiting. When they did the spirometry, my FVC had fallen from 45 on Oct. 19th at my last clinic visit, to 30. That is a huge drop. In the last year, that number has fallen five points. So, this was three times that, in about three weeks. Not good! I also had a slight fever of 99.7. I totally didn’t feel feverish.
So, to be sure there wasn’t anything else going on to explain the drop besides disease progression, they wanted to do a CT scan. I was on board with that! Something was definitely wrong.
Ryan, Sara and I went up to the CT scanning place to see if the wait was going to be long or short. We were hungry, and since I wasn’t having surgery that day, I now had permission to eat. The CT receptionist said they could do my scan right away, but my insurance had not approved it yet. It had only been 15 minutes since we were in clinic, so we went to lunch thinking giving it a little time would give the system a chance to catch up with us.
Think again.
Back from lunch we were told Aetna said it would be two days before they could get the CT authorized. Are you kidding me? This is not a clinic appointment. This is something emergent. So, back down to transplant clinic we went and asked to see the coordinator again. More waiting.
She came out and said that the regular finance person was out, but that there was a note in my file and that this should be approved. She was going to call Aetna herself.
More waiting.
An hour later she came out again and I think was feeling as frustrated as we were. Aetna was telling her that only one person could sign off on this, and that person wasn’t picking up her phone or answering messages. For all we knew, she was out for the day. So, we had to leave the transplant clinic and report to the Emergency Department.
They offered me a wheel chair, and while I usually turn it down, I was getting very tired and the ER was on the other side of the hospital campus. I gladly accepted.
Hospital bracelet three
Thank God for wheel chairs. We had to wait in line to get signed in. I was really starting to feel tired now. The guy in front of us was in handcuffs and with police. While not being physically difficult, he seemed to be having problems with the paperwork. I started to feel impatient. I looked around the room, and I didn’t see people. I saw germs. If I’m doing worse, the last thing I need is to catch something else in the ER. Get me out of the holding area to someplace a little more sheltered from the coughing and sneezing and such.
When we got to the desk finally, they knew who I was and I got whisked right in. Yeah! Now, however, I’m in the care of the ER and not the transplant clinic. There are protocols that get followed when you show up in respiratory distress, even if that is your normal state of being generally. The CT scan now became an EKG, a chest X-ray and a CT with contrast to look for pulmonary embolism, or blood clots in the lungs. Okay. I can roll with this. I was parked on a gurney in a sort-of room, a choice spot over the many, many people on gurneys in the hallway, parked one after the other like a parking lot.
More waiting. Actually, a lot more waiting.
The ER staff, after a while, started apologizing for how long it was taking. I was only annoyed that because my insurance company couldn’t respond to multiple phone calls in a timely manner, the bill for this day was climbing. Not my bill, but still, just an example of why health care is so expensive. We can’t deal with the obvious. I told the ER staff it was okay. Some family was having a much worse day than me, and in the midst of it, they were willing to give me their loved one’s lungs. I couldn’t really be frustrated because I had to wait. It is relative. This wasn’t nearly as big a deal as that.
They came to put the IV in for the CTA, and had a hard time getting it. I’m not sure, but I could have been getting a bit dehydrated. I’m taking meds to thin out all the mucus I now cough up constantly and it wasn’t the kind of day where I was drinking much. Blood started to run out on the gurney and drip on the floor, but they got it in. Whew!
More waiting.
An hour later a guy showed up to do the chest x-ray. Easy peasy.
Later the nurse reappeared to tell me I had to prove I wasn’t pregnant for the scan. I had asked to go to the restroom earlier, but was told I’d have to use a bed pan, which I hate, and the bed pan never arrived. I actually was well stocked for a sample. I asked if that meant I got to go to the restroom. She said I could use a bedside potty, but didn’t know where one was. I assured her I could use the regular one if she’d let me. She decided it was okay, and quickly the oxygen was plugged into my own tank. I didn’t argue, even though I was trying to save my own oxygen to get home again. I was afraid someone else would show up and veto the maneuver. For someone who couldn’t breathe, I scooted across the ER, holding this little gown barely closed in the back with one hand, and pulling the oxygen with the other. Mission accomplished! Sigh of relief. Given the choice of mooning the ER, or having to use a bed pan, modesty lost out.
Finally, they arrived to get me for the CTA (CT with contrast to look for clots). I got whisked past a line of people on gurneys in the CT area hallway. No telling how long they were all going to have to wait.
I was seeing light at the end of the tunnel. Quick scan, and we’re on our way soon. Nope, think again. Now it has been hours since the IV, which wasn’t doing well from the beginning, was put in and it doesn’t want to work. They fiddle with it, and I felt the warmth of the contrast, but the radiologist wasn’t happy with the pictures.
They needed a new IV. I wonder how many hours that is going to take (to myself.) Another guy showed up on the scene to fiddle with my IV again. He worked with it for about five minutes, and presto! The IV whisperer was successful! Scan number two (trying not to think about what the additional radiation and contrast could do to me for attempt number two) and success!
Back to my little ER bay, past the crowd.
The nurse had steroids to put in my IV. Yippee! Within an hour I was breathing better. The trip to the ER might have been worth it just for the steroids.
Discharge was in sight!
I was given a script for antibiotics and steroids and wheeled out the door to the onsite pharmacy. Ryan now was in charge of the wheel chair and pushed me up to the counter. The pharmacist looked at the script (no long line – yippee) and says he can fill that right away. Silly me. I thought right away meant he’d be right back. Ryan didn’t move the chair. Other people came and went from the next window, but we stayed put because he said he’d, “be right back.”
You’d think I would have enough hospital experience by now to know no one comes right back, and just a few minutes is code for a few hours. It is just the way things work. I was so ready to be home that I just sort of didn’t think about that.
Finally I asked Ryan to park me to the side, close enough to stare at the pharmacist, but far enough away to not be in the way of others. Nearly an hour later, we had the drugs. My friend Eden was outside to pick us up. We were on our way home! It was around 9:00 pm.
Everyone that has messaged me in the past few days has been so worried about my disappointment. I think I might have been emotional and disappointed if I was in the hospital and the window of opportunity was getting shorter. I’ve been on the list a year now, so actually, just getting a call was a huge boost to my morale. I’ve known so many people who have been through lung transplants that I know this sort of thing usually happens several times. It is just part of it.
I think in a way this was meant to be. It turns out I had a bit of pneumonia in my lungs and didn’t even realize it. It would have probably become much worse or caused additional problems if I’d just been sent home. We learned later in the day that besides the infiltrates, the lungs were not the right size anyway. I think it was meant to be. I didn’t lose the lungs really, and we got to head off a problem that would have become much worse. God is looking out for me!
Thanks everyone for all the many prayers.
The therapist said, no, not after rehab – they want you right now. It dawned on me what she was trying to say. Suddenly I felt tingly all over. You wait and wait for the call, and then when it finally comes it is a feeling of shock and being overwhelmed. My mind was racing. This could be it!
One of the therapists came up and waited with me until my sister-in-law Sara could arrive. I hadn’t reached Ryan, but she had and he was on his way. It was faster for him to come by metro than for her to fight downtown Washington traffic during rush hour to pick him up.
After the rush upstairs, we waited, and waited (this would be the theme of the day – waiting!) I think 30 minutes is five hours in the transplant time warp when you are waiting to find out what happens next.
Hospital bracelet two
My transplant coordinator came out and explained that they thought they had lungs (I actually never knew if it was one or two – I actually forgot to ask!) They needed to take a blood sample and have it sent away. She actually apologized that they’d probably have to repoke me later for more blood. I assured her she could poke me as many times as they needed – no big deal!
I had to wait while all the people that were there for morning clinic got their blood drawn, and then they took mine. I went back to the waiting room, and we waited some more. It felt like hours. Ryan and Sara were there, and I think we all felt like we should be distracting ourselves with conversation, but I was coming down from the initial shock, feeling a bit out of breath, and really didn’t have much to say. Happily one of my friends from rehab who got a transplant last January happened to be there for a follow up visit. We got to chat a while and that couldn’t have been more perfect. Sometimes it isn’t the talking that helps. It’s just being present to talk if needed – to know that someone is there if you start to freak out.
My coordinator came by again and said they were admitting me and we were just waiting for the room to be cleaned. Okie Dokie! We waited some more, and some more.
My coordinator came out again and said they’d like to move us to a conference room. Great – we’re going to get the skinny on these lungs! We waited, and we waited.
The doctor arrived and explained the lungs were not going to work out. When they received the CT scan of the donor lungs, they had what are called infiltrates in them. These could be nothing, or they could be a problem. The lungs were too far away to send someone to inspect them in person, decide whether to accept them, and get back in time. Sadly, we learned the donor was a young person.
Sara and I had been talking about how odd it feels to know something horrible is happening to another family, and yet you can’t help but be grinning ear to ear. I felt very guilty about how happy I felt when I knew they must be in the midst of so much grief. I spent the waiting time thinking about how after this hard part, things would start to get better instead of worse. I started thinking about my list of things I want to do post transplant. That’s how I spent much of the waiting time – daydreaming about effortless breathing.
I told the doctor that I had intended to e-mail my coordinator when I got home from rehab. During the past week I felt much more out of breath and needed even more oxygen. So, just for grins, she decided to order a spirometry test.
To do this, it meant a clinic appointment. Since we weren’t on the schedule, yep, more waiting. When they did the spirometry, my FVC had fallen from 45 on Oct. 19th at my last clinic visit, to 30. That is a huge drop. In the last year, that number has fallen five points. So, this was three times that, in about three weeks. Not good! I also had a slight fever of 99.7. I totally didn’t feel feverish.
So, to be sure there wasn’t anything else going on to explain the drop besides disease progression, they wanted to do a CT scan. I was on board with that! Something was definitely wrong.
Ryan, Sara and I went up to the CT scanning place to see if the wait was going to be long or short. We were hungry, and since I wasn’t having surgery that day, I now had permission to eat. The CT receptionist said they could do my scan right away, but my insurance had not approved it yet. It had only been 15 minutes since we were in clinic, so we went to lunch thinking giving it a little time would give the system a chance to catch up with us.
Think again.
Back from lunch we were told Aetna said it would be two days before they could get the CT authorized. Are you kidding me? This is not a clinic appointment. This is something emergent. So, back down to transplant clinic we went and asked to see the coordinator again. More waiting.
She came out and said that the regular finance person was out, but that there was a note in my file and that this should be approved. She was going to call Aetna herself.
More waiting.
An hour later she came out again and I think was feeling as frustrated as we were. Aetna was telling her that only one person could sign off on this, and that person wasn’t picking up her phone or answering messages. For all we knew, she was out for the day. So, we had to leave the transplant clinic and report to the Emergency Department.
They offered me a wheel chair, and while I usually turn it down, I was getting very tired and the ER was on the other side of the hospital campus. I gladly accepted.
Hospital bracelet three
Thank God for wheel chairs. We had to wait in line to get signed in. I was really starting to feel tired now. The guy in front of us was in handcuffs and with police. While not being physically difficult, he seemed to be having problems with the paperwork. I started to feel impatient. I looked around the room, and I didn’t see people. I saw germs. If I’m doing worse, the last thing I need is to catch something else in the ER. Get me out of the holding area to someplace a little more sheltered from the coughing and sneezing and such.
When we got to the desk finally, they knew who I was and I got whisked right in. Yeah! Now, however, I’m in the care of the ER and not the transplant clinic. There are protocols that get followed when you show up in respiratory distress, even if that is your normal state of being generally. The CT scan now became an EKG, a chest X-ray and a CT with contrast to look for pulmonary embolism, or blood clots in the lungs. Okay. I can roll with this. I was parked on a gurney in a sort-of room, a choice spot over the many, many people on gurneys in the hallway, parked one after the other like a parking lot.
More waiting. Actually, a lot more waiting.
The ER staff, after a while, started apologizing for how long it was taking. I was only annoyed that because my insurance company couldn’t respond to multiple phone calls in a timely manner, the bill for this day was climbing. Not my bill, but still, just an example of why health care is so expensive. We can’t deal with the obvious. I told the ER staff it was okay. Some family was having a much worse day than me, and in the midst of it, they were willing to give me their loved one’s lungs. I couldn’t really be frustrated because I had to wait. It is relative. This wasn’t nearly as big a deal as that.
They came to put the IV in for the CTA, and had a hard time getting it. I’m not sure, but I could have been getting a bit dehydrated. I’m taking meds to thin out all the mucus I now cough up constantly and it wasn’t the kind of day where I was drinking much. Blood started to run out on the gurney and drip on the floor, but they got it in. Whew!
More waiting.
An hour later a guy showed up to do the chest x-ray. Easy peasy.
Later the nurse reappeared to tell me I had to prove I wasn’t pregnant for the scan. I had asked to go to the restroom earlier, but was told I’d have to use a bed pan, which I hate, and the bed pan never arrived. I actually was well stocked for a sample. I asked if that meant I got to go to the restroom. She said I could use a bedside potty, but didn’t know where one was. I assured her I could use the regular one if she’d let me. She decided it was okay, and quickly the oxygen was plugged into my own tank. I didn’t argue, even though I was trying to save my own oxygen to get home again. I was afraid someone else would show up and veto the maneuver. For someone who couldn’t breathe, I scooted across the ER, holding this little gown barely closed in the back with one hand, and pulling the oxygen with the other. Mission accomplished! Sigh of relief. Given the choice of mooning the ER, or having to use a bed pan, modesty lost out.
Finally, they arrived to get me for the CTA (CT with contrast to look for clots). I got whisked past a line of people on gurneys in the CT area hallway. No telling how long they were all going to have to wait.
I was seeing light at the end of the tunnel. Quick scan, and we’re on our way soon. Nope, think again. Now it has been hours since the IV, which wasn’t doing well from the beginning, was put in and it doesn’t want to work. They fiddle with it, and I felt the warmth of the contrast, but the radiologist wasn’t happy with the pictures.
They needed a new IV. I wonder how many hours that is going to take (to myself.) Another guy showed up on the scene to fiddle with my IV again. He worked with it for about five minutes, and presto! The IV whisperer was successful! Scan number two (trying not to think about what the additional radiation and contrast could do to me for attempt number two) and success!
Back to my little ER bay, past the crowd.
The nurse had steroids to put in my IV. Yippee! Within an hour I was breathing better. The trip to the ER might have been worth it just for the steroids.
Discharge was in sight!
I was given a script for antibiotics and steroids and wheeled out the door to the onsite pharmacy. Ryan now was in charge of the wheel chair and pushed me up to the counter. The pharmacist looked at the script (no long line – yippee) and says he can fill that right away. Silly me. I thought right away meant he’d be right back. Ryan didn’t move the chair. Other people came and went from the next window, but we stayed put because he said he’d, “be right back.”
You’d think I would have enough hospital experience by now to know no one comes right back, and just a few minutes is code for a few hours. It is just the way things work. I was so ready to be home that I just sort of didn’t think about that.
Finally I asked Ryan to park me to the side, close enough to stare at the pharmacist, but far enough away to not be in the way of others. Nearly an hour later, we had the drugs. My friend Eden was outside to pick us up. We were on our way home! It was around 9:00 pm.
Everyone that has messaged me in the past few days has been so worried about my disappointment. I think I might have been emotional and disappointed if I was in the hospital and the window of opportunity was getting shorter. I’ve been on the list a year now, so actually, just getting a call was a huge boost to my morale. I’ve known so many people who have been through lung transplants that I know this sort of thing usually happens several times. It is just part of it.
I think in a way this was meant to be. It turns out I had a bit of pneumonia in my lungs and didn’t even realize it. It would have probably become much worse or caused additional problems if I’d just been sent home. We learned later in the day that besides the infiltrates, the lungs were not the right size anyway. I think it was meant to be. I didn’t lose the lungs really, and we got to head off a problem that would have become much worse. God is looking out for me!
Thanks everyone for all the many prayers.
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