Yea, Yea What About Those Lungs?

Beach Days August 2014
Its like being at a beach in the middle of the summer. The seaside is packed and the volume is at an all time high. The surf, the people, the birds, the whistling wind – it provides this backdrop of noise, but when you go under the water, once what was booming is lulled to just a murmer. You know its there but you feel hidden away – sorta removed. Under the water you are still a part of the scene, but with a protective shield that dulls your surroundings. Eventually you have to come up for air – even if you don’t want to – so you wait…. and wait…. and wait…. until you can not wait one more second and you break through the surface – “Ahhhhh” – gasping that big breath of air and bathing in the sense of relief for your lungs to fill with air again. Yet at that exact same moment the volume of your surroundings is turned back up and you are once again part of the world. I have emerged from under the surf.
Beach Days August 2014
Previously I shared that Danny’s health journey has reached a place that sharing is just not a good fit right now. The highs and lows have been too unpredictable to process both in real life and then to put into digestible words here. The days have brought Dan into the land of the living: seeing friends, going to work, enjoying hockey again….. but it has also brought days that are completely missed as he sleeps for 15 hours, nights that he doesn’t sleep at all, medication mixing for relief, and then medication mixing that proved toxic, ER days and nights, and then just like that an Easter weekend that you would think everything is back to normal. It is the weirdest and most confusing turn of events, so making heads or tails of it has added to the exhaustion.  And all of that is just the physical side of what is happening.
Beach Days August 2014
Flip the coin over and you have the other side: the emotional and mental side. This part I can only understand from my point of view, with the most glaring observation being this article was suddenly making a lot of sense. We did not do a good job of making a plan for direct help with Danny (as you can imagine this is hard to have someone intimately care for you and the preference has been his spouse – but 24-7 isn’t realistic) and I have felt crushed under the weight of wife, caregiver, bread-winner …. and to be honest devastated over the fact that the role that is first on that list didn’t really seem to exist. While working my way through those feelings – Danny is working his way through his own…. and on several occasions has suggested this whole thing wasn’t worth it. If he had to do it again, he wouldn’t . It is my belief that we both know, deep down, that is only because he has not had the benefit of really feeling well – but when your tired, ragged, and emotionally wrecked already, those words are really hard to not read into. Does he not want to be here anymore? What if we have to do this again? Did Dan feel forced into a future? So many questions, not enough energy to ask them and too much emotion to hear the answer. For a talker – that is crazy to not at least try to talk about it, but that is what this season resulted in: sitting in the silence.
Beach Days August 2014
My plan was to return to sharing this part of life when I had answers…. when I felt better…. when I knew that we were back on the path to our “real” lives. So I just put it all in a box, taped it up and threw it on a shelf. To fill my brain and spend down my nervous energy I started to just live life as much as I could. I have been on “the tour of friends” – seeing or catching up with folks I love and they helped me feel like I was actually living life again. Talking about what was really going on with my parents, siblings, and close circle produced a strength I had not expected, but really needed. You can’t be the positive one all the time and I am learning that its ok to be real. I did things I have always been meaning to do like yoga and activities that would make me feel like I was walking towards my life goals. Combining all these activities with the passing of time, some amazing counsel, and a Lenten Season that taught me a whole lot, I feel stronger and ready to write.
Beach Days August 2014
A couple of things to know as I pick up my laptop to type away about transplant life again. One this is not a blog about transplants and CF…. it is not a blog of how to’s…. and its not transplant for dummies. This is the story I am telling of our life – through my eyes. Danny is considering sharing his own experience and I hope he does. We were blessed with people who paved the way for us – and their counsel (even when we did not listen) was helpful (and on that topic – I wish we would have listened). It would be nice to pay it forward, but I am not really in a position to know what to say about the patient’s side. So for now, I ask that you keep in mind I can only talk about what I know, what I see, what I feel about transplant and our life. Some amazing stories of pain, faith, and triumph have helped me through my experience and I hope to provide that sort of belief in healing for others, so I write.
Beach Days August 2014
So what do I want to even write about for this segment of life? Well the journey up until now to start. For weeks I have been wanting to share the memories…. point out the blessings… and relive some of the miracles. In fact I believe reconnecting with the moments that I have felt like God’s hand is right in the middle of it all will improve our faith, hope and love going into the future. I will be traveling back a few months, but I am thrilled to make the journey and thank you all so much for following along with me.
Beach Days August 2014
Finally I want to report that Danny’s lungs remain in the high 90s and Danny is hopeful he will stop feeing like a belt is looped around the lungs, so he can breathe deep in the coming weeks. The healing process remains all over the place: on Wednesday Danny went for both a bronch scope and a new treatment (that is set for every other week as of now) of adding a transfusion of antibodies to his blood – and things got a little messy. His blood sugar was too high that it would be dangerous to put him under and they contemplated the ER. That bronch had to be rescheduled, but thankfully the transfusion was fine. Saturday Danny felt strong and actually laced up his skates to take advantage of open skate at our local rink. But on Sunday he had some terrible stomach issues that resulted in a day spent moaning on the couch. So things are a little bit of great and little of not so great – but the prognosis looks strong for the lungs and remembering that is vitally important. We have every reason to believe a healthy future is on the horizon… getting there is just a bit  of a winding road.
Beach Days August 2014
Thanks so much for reading and remember to make it a great day!
Jackie

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