Happy November. Can you even believe it? Its dark when its 5PM, the world is talking all things holidays, and the Bessettes are staring a big one year anniversary right in the face: November is here. This month will forever be special for our little family and I am so incredibly grateful for the opportunity to reflect and honor this time in our life. Over the next few weeks on the blog I will be focusing on finishing our transplant story. I have written the beginning here, here, and off course I shared at lot of how it felt in the middle, but I intend to capture the whole story on the blog this month as we look back and celebrate the journey.
But the truth is this would be a whole heck of a different story if Danny wasn’t so healthy. That is the most important blessing in our world today and makes all the other parts of our life possible. So to start off this month we have a health update from our Hopkins visit two weeks back.
Let’s just dive right into the big deal stuff, shall we? Danny’s lungs are doing incredible. He is consistently over 100% function, and has been hovering mostly around 108% these last few months. Pre-transplant we were forewarned that getting 100% function back in transplant lungs was rare and it will be important to celebrate wherever Danny’s highs land: 50%, 60%, 80%…. no one mentioned a thing about 100% or over. In fact this visit we spent some extra time talking about how parts of Danny’s lungs that are likely not even really “awake” yet (some of the internal tissues etc). If all continues to go well and Danny stays committed to his health, the lungs are only going to improve. Compared to lung function in the 20% area this new reality is life changing.
Medications will be a part of Danny’s life forever. Often CF patients are actually really good transplant patients because medicines have been a regular part of their day already. There are unfortunately more that come with transplant and their potency can’t be denied. But again in this area Danny has been pretty blessed – finally. This was not without months of tremors, the inability to focus, difficulty sleeping, and a variety of bizarre physical side affects – but as of now the levels have all been stabilized and minus a small virus that required some recent high dosages leading to fatigue, he is moving in the right direction.
Well it was a major surgery and to assume all will go perfectly would be pretty darn stupid. So welcome to our danger zone – diabetes. Due to complications with CF and years of harsh medication, such as steroids, pre- surgery Danny had concern for his blood sugars. In our community this is called CF related diabetes. After surgery between the steroids dose, some of the anti-rejection medications, and the overall state of Danny’s body he came out with two new lungs and a new diagnosis: Danny is a diabetic. This is not easy news and sometimes I think we do take it lightly because honestly, there was a whole list of things wrong with Danny – like not able to breathe – so this one got pushed down the worry list. But it is an incredibly serious diagnosis and we find ourselves in the midst of a crash course on learning how to manage it.
After a whole life of being told to a eat high fat diet to help with weight concerns (which for the record, I don’t believe was great advice), now Danny is being told to eat a clean, limited sugar diet and it is hard. We are struggling with diet choices (especially on the go), how to administer the insulin, and the results when we get it wrong. If not managed properly Danny can go from on top of the world to a ball on the couch. And that is just energy level – we have barely started to address their concerns for his eyesight and kidney function. This is a big one and we are having to make lifestyle changes to adjust. It is hard – but knowing the difference of life as healthy person compared to that of a sick person, we have a lot of motivation to get us both in a healthier place ….stay tuned.
Here is the deal – we have been told from a physical standpoint and from a mental standpoint , even though Danny is feeling good and it important to get back out and live life, we have to take it slow. Danny’s physical body is still in hibernation mode. For 30 years body systems had to borrow from one another, work on overtime when others failed, and when they were at the brink of complete failure the whole lot of them went through a crazy dramatic medical event. Several medical professionals have used the same example when considering how to view it: a really bad flu. When a person has a really bad flu their whole body needs time to adjust back. Sure your knee cap wasn’t sick – but it wasn’t in use while you were laying around trying to heal. So chances are when you return to life after a flu, everything is sore, all body systems are tired, and energy is hard to come by. You have to take it slow. And mentally it is is the same thing. You were so focused on illness, jumping right back into life can be overwhelming. Can you imagine your email inbox after being sick for three weeks? How about getting back to the real world after being sick for years. It is hard and we all have to be patient. Just cause Danny seems to be ready to jump back into life – maybe even wants to – every activity needs to be purposeful.
So there we have it. There is a lot of good, a little bit of hard, and a reminder that it has only been a year and patience is critical! The new place we find ourselves in provides a chance to make so many changes it is completely unexpected. Again – sounds crazy, right? Did I not read all my other posts hoping and praying it would get better? Wondering if we would survive it all? The truth is no one could have ever prepared us for where we find ourselves. And that is how this particular appointment ended: we took a moment with our main Doctor to share how we had no idea any of this was possible. He agreed we have not seen this Danny in quite sometime and these benefits of surgery are never guaranteed – but if they are found, it is the best possible outcome.
This past weekend Danny played pick-up hockey. He walked in the door that night literally on cloud 9, with dimples so deep, and eyes just beaming with energy and light. I asked how it was and he laughed about how he kept holding back, trying to conserve his energy all night. For years he had gotten so used to playing maybe a shift or 2 (2-4 minutes) and having to sit out for 20. It was the first time he realized his auto-pilot was to spend energy this way, very carefully. But this evening, he never ended up getting winded, he never ran out of energy. When all was said and done he summed it up pretty perfectly: “I can’t tell you how amazing it is to play hockey, for a decent amount of time, and not feel like you got run over by a truck …. for days”. Yea, we have made it to November……
Thank you so much for reading and remember to make it a great day!