Have A Little Faith in We

Hey friends! Thanks for your patience and space while we recovered from last weeks adventures. One of the biggest things 2017 has brought to my life is the importance of grace for time and healing. Going back down the hospital road has some physical, emotional, and mental consequences and I opted to let quiet surround us a little longer. I am thrilled to say it has been just what the doctor order… in addition to the other things!

Last Monday Danny had his one year bronchscope. This procedure is when the docs take a little camera and go into the lungs to look around. Over the course of Dan’s transplant he has had these quite a few times – starting with just a few days post surgery. For the most part this is old hat, but the reality is there is always a risk the lungs could be disrupted, the taking of a sample from the lung could cause an issue or the lung can even get punctured. Statistically something going wrong is about 1-2%, plus you are required to agree to these procedures prior to receiving organs…so we go with it. In the main Dan’s procedures have been uneventful. The one they did while he was awake at his hospital bedside within days of the surgery was difficult (it freaked Dan and his gag reflux out pretty good, so they offered that I could stay and hold his hand. This plan may have backfired because as he struggled, I cried….. it was a tough one) and then he had a second one in February where the lung was punctured. Unfortunately last week’s started much like this one in February.

When Dan’s lung was punctured the first time treatment was pretty easy. Just like a ballon they have to pump it full of air, so they give him a larger oxygen mask and just push the air through. After a few hours the deflation can be just about gone and the puncture pretty null and void (as a reference the punctures is typically smaller than a sesame seed). So when this happened again we were all confident pumping the oxygen back through would do the trick. Unlike that time, last week Danny did come out of the procedure coughing up a decent amount of blood. Thankfully it seemed to stop pretty early on, so we let the worry around that symptom go and focused on the oxygen pump up. As we reached the two hour mark of the pumping portion they took an x-ray to view the progress: little to no change. Normally this would lead to a hospitalization, but since this has happened to Danny before and the lung was not getting worse they opted to let us go home.

Overall we were frustrated by the additional hospital hours and the potential irritation to the lung, but not really that worried. Danny felt tight around his chest and an overall tiredness, but that is to be expected. We drove home chatting the whole way and stopping for dinner (both good signs since in the past it is not uncommon for Danny to nap the whole way home). But as we got home Dan was hit with a hard wave of exhaustion and slight temperature. He settled in on the couch and again we hoped rest would do the trick. I went upstairs to unpack from the day and that is when I heard it – the coughing fit. This used to be the soundtrack of our household. Coughing fits were a normal thing and it had become sort of amazing how much we were unfazed by them years before. But this time it stopped me in my tracks – we haven’t had a coughing fit in months. In fact we have a running joke about Danny’s lack of 6 pack because he doesn’t cough anymore. As I descended the steps with a bit of my own breath held to check on Dan I saw him holding this disposable coffee cup – ones that we use on occasion if we are going somewhere that we don’t want to take a plastic travel mug. He needed something with some depth and a lid …..to catch the blood he was coughing up. We let this go on for about 15 minutes and then Dan called Hopkins.

As expected they said we needed to come back right away. So we packed up quick and started to make arrangements for the dog. Danny headed upstairs to grab a sweatshirt and pack a few necessary things and that is when things got bad. He had the worst coughing fit and it produced a lot of blood. We grabbed the must have items, the dog and jumped in the car. There was no way we were making the hour and half to Hopkins so Danny called them to say we had to go to Fairfax ER that is closer (and my in laws could easily meet us there to get the dog – we did not have time to stop anywhere). Hopkins agreed and called ahead to Fairfax so the hospital knew we were coming and to be ready to address the predicted issues.

The ER is a challenging place. For patients it is usually long, painful and exhausting. For caregivers it is exhausting in a mental and physical way, troubling, and ridden with guilt (what you should have done, what you did wrong, and what detail you may not be able to answer that feels like the only possible remedy). And I am guessing even for the people that work there – you are running from one scenario to the other and having to make decisions on a dime with very limited knowledge. As Danny sat trying to get an EKG and coughing up blood in a now 12oz cup that was getting fuller…. the lady next to us was reading a long medical file of what could be wrong, asking for insight and then telling them how wrong they were. In hindsight this lady actually brought some comic relief to Danny and I (sorry – but true) with some of her antics. But I doubt her medical team felt the same.

So that is the scene of the ER and the other reality is they do the best they can, but very easily wrong info can be provided in these scenarios. That night we sat there from 10PM to 5AM and Danny was ultimately admitted based on his extreme case of pneumonia in both lungs. This seemed a little crazy – he had no other symptoms and Hopkins had seen his lungs hours before…. but we did see the x-ray and something was absolutely filling up the lungs. Bottom line was this – we were scared. On Sunday we had the best day – time with our pup, great dual workouts at the gym, and then a really nice dinner out to toast the 1 year mark. That dinner we talked about Dan’s upcoming career opportunities, the idea of moving, and some other future dreams. The future felt bright and this new life of having energy was awesome. To think it disappeared in a matter of days – our minds wanted to go to the worst place possible.

Luckily Danny has been seen by the transplant team at Fairfax – in fact he was considering double listing…. but that call came just too quick. Thankfully they were briefed in the middle of the night so we had docs up and seeing Danny first thing in the morning. Right away they debunked the pneumonia, so this left one main option: the lungs were filling up with blood because of the sample taken during the bronch. At one point they discussed going in with another bronch to look around – but we had to be prepared that if this made the hole worse, Danny would need to be on a ventilator for a few days to protect the lungs and heal. Again – our heads were spinning – just two days ago we were working out at the gym?!?!??! Now he would be asleep for a matter of days to heal? It felt crazy…… but that is the deal with this life, crazy is the name of the game and I am proud that we were both able to recognize that and move into action mode with thoughtful decisions and not panic (too much).

With some of the options so intense and the variety of diagnosis changing the first step everyone agreed to was a little wait and see what the body would do with a few hours of oxygen and rest. Following this breathier of sorts they took an X-ray to decide what to do. Thankfully this revealed the hole as very minimal – already healing – and confirmed that it was likely blood that Danny was coughing out and also (thankfully) absorbing back into the lungs. Final treatment plan: let him rest and try to get the junk out on his own. Sounds so simple huh? And that is still where we are today. Danny came home the next afternoon because his stats had leveled out, he was not on oxygen, and the coughing up of blood had become quite minimal. It is the flu season so the worst place for him to be is the hospital, plus it was a wait and see game which required Danny to rest and relax – home beats the hospital for that any day.

Since home Danny is doing just fine. Sadly he is no where near where he was just two weeks ago – gym, hockey, running around. But his chest is starting to loosen, his lung function is back up, and the coughing up has finished. Mostly his energy level is depleted – which is extremely frustrating and scary when you had gotten used to feeling so good…. but we are told (and feeling confident) it will be back.

Thank you all for your kind words, thoughts, prayers….. in so many ways it is a challenge to say this moment is hard. We know others who have it way worse, there is still no sign of rejection, and we have been given periods of great health. But honestly, it is hard. It is scary. We are excellent hospital patrons versed in how to live that life, but that doesn’t mean it won’t scare the crap out of us to have to go back. And if I am nervous, I can barely imagine what Danny feels. Plus there is a familiarity here – good days of activity that end in tough ones at the hospital – that makes us wonder if we are heading back to that life. Just because we know it well doesn’t mean we want to live it. For years I have struggled with saying this is all hard – because it is our life and shouldn’t we be used to it by now – but you don’t ever get used to, period. So the support is very much appreciated and I am grateful to be using the lessons we have learned though this year to continue on our journey. Until then I will be excitedly awaiting the return of my gym partner.

Thank you so much for reading and remember to make it a great day!
Jackie