Thursday, January 18, 2018

Hundred People Search Update

We've added six new HPSers to the registry. This puts us at 55 to go on the Hundred People Search. 

Wednesday, January 03, 2018

Hundred People Search update

We've added five new HPSers to the patient registry. This puts us at 61 to go on the Hundred People Search (HPS). 

Thursday, December 21, 2017

The Dry Run Thanksgiving

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

Thursday, December 14, 2017

Hundred People Search

We've added two new HPSers to the HPS patient registry. This puts us at 66 to go on this year's Hundred People Search (H.P.S.) 

Wednesday, December 13, 2017

Hundred People Search Update

We have a new HPSer added to the registry. This puts us at 68 to go on the Hundred People Search H.P.S. 

Thursday, December 07, 2017

Hundred People Search update

More updating to do here on the Hundred People Search! I had another transplant call (no lungs though) and then got sick, so I'm catching up again. We've added eight new HPSers to the registry, thus we are at 69 to go on this year's Hundred People Search, or H.P.S. Keep up the outreach! It is helping! 

Monday, November 20, 2017

Hundred People Search update

I'm still catching up on Hundred People Search updates. I have five new members added, and that puts us at 73 to go on this year's Hundred People Search. Way to outreach! Keep up the great work. 

Thursday, November 16, 2017

A three hospital bracelet day

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.

Monday, November 13, 2017

Hundred People Search update

We've added four more people to the HPS Network registry. That puts us at 78 to go on this year's Hundred People Search (HPS). 

Tuesday, November 07, 2017

Hundred People Search update

So, I've got some Hundred People Search backlog to get through. We've added four new people to the HPS registry. This puts us at 82 to go for the Hundred People Search (H.P.S.) Some of you have been doing so great with the outreach! Some of that outreach is happening in Puerto Rico, despite no power and poor communications. You all are amazing! Keep up the great work!