Living on the frontlines

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 hold...

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 ...

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...

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...

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

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

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 ...