Wednesday, July 18, 2018

I want it, and I want it now

Patience may be a virtue, but it is certainly not a skill of mine. I am just about at my five-month lungaversary. They are constantly telling me that everyone’s recovery is different. You can’t compare your recovery to someone else’s. Intellectually, I get that. Really, I do. Emotionally, however, I’m like a toddler. I want it, and I want it now. And why shouldn’t I?

This transplant has been hard work. I’m blessed that I got a lung at all. So many of my good friends did everything right, waited and waited, and the lung never came in time. While I’ve beaten the statistics consistently throughout my life, I am well aware of all the post-transplant statistics. I am well aware of all the complications that can happen. I’ve been given a chance. I’ve been given more time. I don’t want to spend it waiting. I’ve got a lot to do with this new lung.

Thankfully, (knocking on wood) the new lung is working pretty good right now. It isn’t up to full capacity by any stretch, but my spirometry is holding steady, and even trending upwards at a slow crawl. I’ll take that! At least it is moving in the right direction. I haven’t needed oxygen, and the times where I might be on the bubble needing oxygen are fewer and fewer.

My legs, however, remain a problem. I think they are improving, but it is hard to tell. One day I can walk a mile, and the next it’s a struggle to make it around the block or stand at the sink doing dishes for longer than 10 minutes. I don’t quite get why it can vary so much from day to day.

No one has to sell me on the importance of exercise. I’m sold on the concept. I was never a big fan before, admittedly, but my two years in pulmonary rehab convinced me it is the key, not only to a decent quality of life pre-transplant, but to recovery post-transplant. It seems, however, that my legs never got the memo.

I’m feeling frustrated. Yes, I know, everyone’s recovery is different, but at this point, I feel like I should be able to do more than I can in a more consistent way.

Sometimes I need a reminder about how far I’ve come, even if it isn’t far enough. This morning I was looking for a document in my e-mail from my transplant coordinator. As I searched through the e-mails, there was this record of back and forth about all the problems that have come up along the way. I have to remember I’ve only been out of germ jail for about a month. It wasn’t quite two months ago I was fighting falling white blood cell counts. Even if I can’t walk as well as I should, there has been progress.

Even so, let me be cranky about my lack of progress. Let me complain and moan and be frustrated. It isn’t that I like feeling this way, but be glad that I do. It’s the frustration and the high, maybe unreasonable, expectations that keep me pushing. Be glad I’m not happy to continue to cruise around in my wheelchair (as fun as it is for someone who has never been able to drive.)

Last night as I was lying in bed feeling so frustrated, I was doing leg lifts and talking to my legs. The language I was using to them isn’t family friendly. I was just trying to find a way, something I could do, to make those muscles work. I’m still waiting to hear back from rehab. I can’t wait to hear back from them to work on this problem though. So, I complain, and grumble, and feel frustrated and cranky – and so I move.

Monday, July 09, 2018

Nobody likes rejection


Me posing for a photo with Finley. This is my swollen steroid face. Thankfully, it is starting to go down.


Rejection – it’s a word I’m hard pressed to find a good context for – and in transplant land, it certainly isn’t a good thing, but perhaps it’s a constant companion. Once you get an organ that you weren’t born with, your body is intent on seeing this life-saving gift as a foreign invader it must destroy. It’s a battle that is constantly going on inside you, and it’s a battle you and your doctors constantly fight. The only good news is medicine has created a number of weapons to hold rejection at bay.



In June I had my first setback because of acute cellular rejection. They tell me it’s the good kind of rejection to have because it is treatable with an onslaught of steroids and medication adjustments. Oh goodie!



It was amazing how quickly it came on, and really brought home how important it is to do those vitals and spirometry every day. When I thought I might be in trouble, I had my diary of vitals to show the doctors in a numeric way something was up. It wasn’t just a feeling I had. I had evidence. Not that I couldn’t tell something was up mind you. I went from being able to walk a mile and a half without oxygen, even climb a hill, to hovering at an oxygen saturation of 90 with barely any movement at all. It got a little worse each day over a three-day period. The morning of my transplant clinic appointment I desaturated to 86 just putting my clothes on. I showed up at transplant clinic with an oxygen tank because I was worried about making it from the front door of the hospital to the clinic.



I’ve been fighting infections since the new lung hit my chest cavity. It came with some bacterial hitchhikers and we’ve been working to evict them ever since. So, our first thought was that the last remaining infection was somehow getting the upper hand. I was admitted to Fairfax Inova Hospital for what turned out to be a week stay.



Lots and lots of IV antibiotics were ordered and given for the first few days. A bronchoscopy was ordered to have a look around for any pockets of stubborn infection or other problems. Before the bronchoscopy, I seemed to be making a little progress with how far I could walk without oxygen. But, during this test they flushed a lot of liquid into my lungs so they could suck it out, put it in petri dishes, and wait to see what interesting junk would grow. I think that knocked me back a few days.



Happily, however, the infection side of things looked great – maybe the best it has looked since my transplant. Yippee!! The downside, however, was that meant the most probable cause of the trouble was rejection. The R word. The big R. I don’t care if they say this is the treatable kind of rejection, or that it’s the rejection we are fighting every day anyway…I just can’t get okay with the R- word.



Next came the high dose steroids and all their side effects. I probably didn’t notice the side effects as much right after my transplant because so much was happening with my body. This time, however, I experienced the crazy appetite, being unable to sleep, my body puffing up like a stuffed animal – just to name few. This time, after a few months of starting to feel normal again, I noticed.



It seems the steroids did the trick, so it’s worth it.



I am amazed by how much this recent setback really did kick my butt, to be quite frank. While in the hospital I was so worried about losing ground. I walked around the unit (with oxygen if I needed it). I paced my room. I looked for things about the right weight to try to keep my arms at least as strong as they were before I was admitted.



When I got home, however, even though my oxygen saturations were better, what I could physically do was not. My feet were numb from one of my rejection medications being increased. They are also constantly frozen. My hands shake worse because of the medication. My body was, and is, retaining water, even though lasix makes me pee about every five minutes. My legs looked like the legs of a piano. It was hard to feel real stable on them.



Mother Nature wasn’t helping either. The thing I needed to do most was get out and walk. So, I started getting up super early so I could get out and walk before the heat and the humidity kicked in for the day. Getting up early wasn’t as hard as it usually is (I’m not a morning person) because I wasn’t sleeping anyway. Still, this just doesn’t seem like enough to get back to where I was.



After a few weeks at home my legs started to do strange things. Of course they are weaker than they were, but this was different. One day they’d be relatively okay, and the next it was as if they were made of melting butter. It wasn’t that they were tired from working hard, or that I was getting that exercise burn. It was more like my legs just decided they didn’t want to play anymore.



While my spirometry was back to where it was pre-admission, it wasn’t moving out of the range I’d been stuck in for two months now. That is so long without any improvement, it was getting to be a cause of concern for everyone – not just me the patient with no patience.



This Friday, however, I had my first follow up appointment since being in the hospital. I laid this all out for my doctor thinking he’d be concerned and maybe want to move to doing the dreaded biopsies. To my surprise and great relief, he explained all of this was to be expected. The weird leg thing, he says, is a possible side effect after you’ve had a large pulse of high dose steroids. Apparently it can happen weeks after the doses. Thank God! He wasn’t concerned about the other things as he expects them to all improve. They are mostly a result of all the drugs I got in the hospital, and all the medication changes I had when I went home. Best of all, I’ve been referred for more pulmonary rehab. I’m thrilled. When it feels like 105 outside, it is truly hard to get enough meaningful exercise to truly build myself back up in my tiny apartment. I do try, but it isn’t hacking it. Right now, as my friend Mary Ann says, I’m like a hot house flower. In the good old days you just sweated through hot days. Now, walking in the heat makes me dehydrate rapidly. I get to feeling sick to my stomach and faint. Just little o’l delicate me you know…grin. Because of my suppressed immune system the docs vetoed going to a regular gym. So, hopefully my insurance will approve this and I can get enough sessions to at least get my legs more stable again so I feel a little safer doing this on my own.

Tuesday, July 03, 2018

Planning for Armageddon

Sometime in January I had a transplant clinic appointment. I can’t exactly remember the date now, but I remember the appointment very well. It was the beginning of what could have been the end.



I did the usual tests – spirometry, a six-minute walk etc. I was now not just on eight to 10 liters of oxygen. I needed 10 liters of oxygen pretty much all the time; even to walk the maybe 15 to 20 feet to my bathroom. To go for a slow walk required 15 liters.



The funny thing about increasing oxygen, especially when it happens over years as it did for me, is that you adjust to it. It just becomes your normal. You might get annoyed by it, but somehow it becomes this thing in your life that just is there. So, although I was clearly very sick at this stage, I didn’t feel sick. I felt tired a lot, but not sick. I didn’t feel pain (thankfully). I didn’t feel weak (even though I needed a lot of help with household activities so clearly I was). I just adjusted. I coped with the waiting for a new lung by trying very hard not to think too much about it. The best therapy was playing with Finley, my dog, or working on things for the HPS Network. It all gave life this sort of normalcy in the midst of something that was clearly not normal.



So, I was taken back when the doctor told me I should start thinking about coming into the hospital to wait for my transplant. I knew this often happens, but I had dreaded it. How would I continue to cope sitting in a hospital room I knew I might never leave? Although at this stage I was pretty much stuck at home because my massive oxygen needs made it hard to go many places and not worry about running out of air, I felt I was okay at home. Surely we weren’t there yet?



The doctor and transplant coordinator explained that there was an upside to being in the hospital – it would give my lung allocation score a huge jump. The chances would be better that I’d get another call. I felt like they were trying to make a bad situation sound better. Besides worrying about how I would cope with things in the hospital, I was worried about being able to walk around and exercise. I worked so hard at pulmonary rehab and I didn’t want to lose ground when, if I were at home, I knew I’d be able to exercise and move around. (When you are an inpatient, they don’t let you go to the normal pulmonary rehab classes at the gym. A therapist has to come and see you. So, by definition, the sessions are not as long nor do you have access to all the gym equipment.) I knew I could lose ground quickly and was worried that this would, in the end, not serve me well. I also worried about being in the hospital in the midst of flu season. I had put myself on a kind of voluntary germ lock down, only going to places I had to go and wearing a mask as much as I could. How did it make any sense to go to germ central – a hospital – any sooner than absolutely necessary?



I went home and thought it all over. I didn’t do anything for maybe a week. I just sort of let the idea soak in. Finally, I concluded, the decision was a matter of strategy. Everyone would like to think that the transplant process is one of complete fairness and protocols, but for me, it has been a matter of strategic planning for years. Planning had given me an edge. If I went into the hospital, my score would go up. I had not had another offer since Thanksgiving, and clearly things were getting worse. Perhaps the best strategy was to bite the bullet and go in, even if I felt I wasn’t really ready.



The next few weeks were some of the hardest of the wait. On the plus side, it gave me a chance to prepare to go into the hospital, but on the down side, it gave me a chance to prepare to walk through those mechanical swooshing doors knowing the odds were better I would never walk back out.



My sister-in-law helped me get an attorney to put my “affairs in order.” Not much to do now. I literally own pretty much nothing. After 10 years of being on disability, there is absolutely nothing left. Still, everyone needs things like medical powers of attorney etc. I wrote careful instructions for my brother, who would most likely be in charge of managing my affairs should I be too sick, or too dead, to do so. I wrote out instructions for taking care of Finley that were way more extensive than any of my financial or legal documents. I’m his mama, and I wanted to be sure whoever was caring for him (there were several ways that might go down) knew all of his little quirks, likes and dislikes, favorite toys etc.



I gathered up HPS work I needed to do and knitting I wanted to have with me.



There were days I looked around my living room and everything seemed so still and normal. The neighborhood noises, the way the light came in through the windows or the way Finley brought me toys when I stopped working – it was all just so crazy normal. Yet there was this count down occurring for that day I’d check myself into the hospital to wait. It was something like being in a crashing airplane plummeting toward the Earth, yet no one seemed to notice.



I had a lot of dark, but to my mind practical, thoughts. Sharing them wasn’t something I felt like I could do much of, however. I felt people would say things like, “Don’t be negative.” or “That isn’t going to happen” or “Have some faith.” I knew if I heard those things I might really lose it.



When my friend Elsie went through the same thing, I remember she had such a strong need to be practical, to be sure all the details were taken care of, but it was hard for the people around her. I’ve seen this a lot with various HPS friends. Not acknowledging what the sick person waiting for a transplant is going through isn’t really helpful. It might feel easier, but it isn’t helpful. We, as the patients, know there aren’t really always answers. Yet, there may be things we need to do or say so that we can relax and cope and play this mental game of chicken until that precious organ arrives.



A week before I was to be admitted, my mother came to help out. She wasn’t thrilled about my luggage situation. I was taking a LOT of stuff to the hospital. My friend Donna Appell had given me some excellent advice. She suggested thinking of being in the hospital as just a change in geography. When I was admitted, I should do what I could to make my hospital room my own. I should establish a routine for the day, just like I was doing at home to cope. So, that is what I did. I packed to turn my hospital room into my office and art studio. The thing I dreaded most was being stuck in there unable to do anything but think of my ever quickening demise. If it took packing three suitcases full of a bunch of stuff it turned out I’d never need to make it possible for me to walk into that hospital, then that is what it would take. Tough luck - HPS Washington DC office was moving to Inova Fairfax Hospital and that was the way it was going to be.



During that last week I had a couple of close calls that brought home my decision was the right one, even if it were a hard one. There were a few times my oxygen dipped so low when I was coughing, that I had to put a high flow cannula in my nose from an oxygen tank at 15 liters, and a mask on my face from the concentrator at 10 liters, just to get my oxygen saturation number to come back up again. It was scary and getting a little dangerous. Several times I wondered if I shouldn’t wait for the next clinic appointment to be admitted. Perhaps I should call the coordinator and go ahead and go?



The day finally arrived for our appointment and admission. The appointment wasn’t until the afternoon, so I’d left several last-minute things to do that morning. My coordinator called, however, and asked if it would be possible for us to come in that morning. I wanted to stomp my foot and say no – this day is hard enough for me already and I’m working with a plan here. Yet, I’m just not that kind of girl. I said we’d be there as soon as we could pull together these last-minute items. It was a blessing that she rushed us. I didn’t have too much of a chance to think about everything. I would have probably been ready by noon and spent the next two hours holding Finley and crying. Now, I didn’t have time. We rushed out the door. I remember looking back at Finley as I shut the front door to lock it. He was looking up at me the way he does every time I leave. Suitcases had come out, so I know he knew something more than the routine was up. But, he looked up at me with his beautiful eyes and all I could think of was how it might be the last time I would ever see him. You can’t explain to a dog what is happening. I was worried he’d think I just abandoned him if I never came home.



The taxi was waiting. The suitcases were being loaded. I couldn’t fall apart. I didn’t want to make it harder on everyone else. It was time to leave.

Friday, June 29, 2018

The blog is back!


I know, I know, it’s been a while. Totally not reliable. Totally not what I had envisioned. I have a good excuse. I’ve been busy getting a lung transplant! Yep, I was one of the very lucky to get a lung! I have many upcoming posts to talk about that.



After all of my desire to record this HPS journey, I’ve left out one of the most dramatic parts. As I got sicker, I just got more tired all the time. There are certain things one has to do in life – fix dinner, work on things that bring in income, go to medical appointments and pulmonary rehab. There simply was less energy to do anything that, while perhaps important and meaningful to me, were not absolutely necessary to my survival.



As you might imagine, recovering from a lung transplant is no small matter either. I am now four months out, have had one major setback, and am still in pain every day and currently struggling to walk further than a block. I had been up to a mile and a half before the most recent hospitalization.



But, while my body is a mess, my brain is back to working relatively normally, at least most of the time. So, I’m hoping to be more back to normal and post some about the transplant journey. And of course, thanks to that new lung, life goes on with lots of things to blog about.



I’m back!

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!