Hey ya’ll – its Thursday! Wahoo! Weekend is getting so close we can taste it!! Tonight’s post has been on my list for a few weeks and for some reason I have just been avoiding it. We don’t really have any specific news or changes to report, but still there is something that I always feel is a little difficult to share about how Danny is doing.
Recently as I was following along a young CF family’s blog they brought up the difficulty of answering “how is he doing”? This little family has been addressing CF for a year….. I have been working through it as a partner for 11…… and yet their words were like a new realization that I had never even thought of…. you can’t really answer that question. The moment you do the wind will change directions and suddenly “better” or “good” goes right out the window. I knew the feeling they spoke of o so well… it was the realization of what it really means and trying to just accept it that was new to me.
This is hard – period. Writing these posts, answering “how is Danny” – its hard. And I am not sure it would ever make sense to anyone unless they experience it, so I bring the truth up about this for two reasons: First I feel like I have to say it. In case this post sucks or doesn’t make sense or your are one of the poor souls who happen to ask me that question and get a jumbled answer…. I am just saying its hard. Two – writing about it here helps. Blogging has given me a chance to tell the story just as I want to tell it. When someone asks me off the cuff, I do my best to answer – but I am also programmed to “set the scene”. Who is asking? What will they think? Will the post last week at hockey confuse them because today we are planning a tune-up? Is it someone how counts on me – work, family, friends? Is it someone who will be affected if Dan is really sick? I set the scene, see their mood, and then determine what kind of answer I want to address further. “He is good” – that will make us all walk away from this interaction feeling better. “He is sick” that will require additional info, but maybe explain the bags under my eyes. Then I weigh it – pros and cons, good and bad, and after all that I answer. But blogging – I can write it… I can pour my heart out… and then I can delete it. I can edit it, I can explain it, I can reference old posts… and best of all – what I say is the answer. It is a one sided conversation and sometimes that is just easier.
The truth is though – no matter how hard it is to answer that question or frustrating it can be to tackle these posts – the opposite seems to be a very lonely place. If no one asked…. if no one cared….we wouldn’t have the community around us that provides prayers, love, and support. If I kept all of this inside, I would miss the chance to potentially help others or help people understand why I love to celebrate the heck out of the mundane. If I did not have blogs as a part of my life then peace, inspiration and happiness would be missing and I would not have the gift of sharing, connecting, learning and growing that blogging has provided. And funniest of all? We have actually used this blog to go back and check our memories on when a hospital say happened or how long an IV line stayed active. So all in all – it is hard, but that’s life and the bad parts have not even come close to weighing more than the good. So I write.
Right now Danny is in the middle of his tune-up. The IV has been in for two weeks and after a visit to Baltimore this week it will be another week. To administer the medication he has a hickman (people DO NOT GOOGLE THIS….. I did to check my spelling, yuck), a semi-permeant IV to take the necessary medications directly to his bloodstream. These medications are usually the same ones that he normally administrators as an inhalant treatment. But taking them by IV makes them stronger and much more potent to any sort of infection that is settling into the lungs. We call this course of IVs a “tune-up”.
In the past Danny would have a tune-up using a picc-line. A more permanent IV than the kind you may get to have fluids…. but it does not require any surgical procedure to insert it. The hickman does require a small procedure and Danny currently has stitches. Over the last 2 years Danny has had to move to a hickman because his veins have become too weak from so many years of using the picc-line and they would continue to make the vein “blow”. One of the signs that tune-ups are getting more complicated than they used to be.
While taking these IV meds, Danny keeps using his inhalant treatments and sometimes will even increase them. These treatments coupled with a little extra resting and we hope a tune-up will provide enough airway clearance to give him a few months of clear-er breathing. Breathing of course is a major function that we all need to survive, but the other aspect of the challenges with sick lungs is the amount of energy that is required to breath when your lungs health is so diminshed. Previous years Danny would go in for tune-ups for sounding “junky” or having his lungs feel heavy (a favorite expression is that they feel like heavy, wet sponges) and as a result diminished numbers. Numbers are the way we reference the different measurements that are used to assess lung function. These days though Danny’s numbers don’t change that much – the lungs capabilities are pretty permanently reduced, due to long term damage. So we also have to focus on energy level. If he is so exacerbated, if could be a result of needing too much energy to just breath! Another sign that tune-ups aren’t quite the solution they used to be.
We are feeling pretty hopeful that this tune-up seems to be doing some good. Danny is a little less tired all the time and to the untrained ear – his wife – he seems to be a little less junky. But the truth of the matter is these tune-ups just aren’t helping him bounce back quite the same way. The ability to reverse the damage is just about gone, and the fight to stay at the level Danny is and still feel strong is becoming less likely. For the past 5 years transplant has been a part of our vocabulary – and in some seasons of life we have gotten close – but we have never really taken that step, although that all could be on the way to changing.
A lot of people ask what about transplant as a viable solution. For several years we have been fundraising for the future transplant, and with the incredible support of our circle – we have been blessed to make our goal. So now it seems like it would be time to proceed. Once Danny has new lungs CF will never be in his lungs again…. he will be able to breathe better… have more energy….. its a whole new lease on life. But there are some other parts that are hard. Hoping the right match is found, a complicated surgery, and rejection. Recently I was sent a video about a transplant story (that I can’t get to load right now – it is the story of Katy Starck-Monte). It has a really inspiring message and is the sort of thing that gives me a lot of hope…. but also depicts everything that is scary. Rejection… requiring a second transplant….other failed body systems requiring a kidney transplant…. hospital life indefinitely…. right now we face the devil we know (CF, IVs, tune-ups) – transplant is the devil we don’t know.
So what’s next? Here is where the silver lining comes in…. here is where you learn the real stuff about what matters in life – faith, hope and love. We don’t know what tomorrow holds – we can’t. I have tried to plan, I have kept notebooks with logged details, #s and timelines – that at the end of the day don’t really get me any closer to an answer. So faith is where we have to live – because that is all we have got. Hope….. because that is what keeps you smiling, keeps you joyful! I have to hope that this will turn out …because hope lets me dream – and a lifetime more of memories, experiences and being us is the best dream – and it could come true. And finally love. True love is unselfish, unwavering, be there without a doubt commitment. We love each other…. we have already made the choice, we are in this together and so now we just gotta act on it.
In terms of medical -Danny has one more week to go on IVs and is being directed to finish all the testing that must be completed to be able to be considered for listing on the double lung transplant. Listing for a lung transplant has a variety of different elements that determine when you list…. where you fall on the list…. that is its own post…. for now the only steps are the two in front of us: finish IVs and complete the tests. We will go forward from there.
Thank you so much for all those who are on this journey with us – our family, our friends, and our readers. Having you there makes this path a little brighter….. and while you all walk with us, I ask for a few more prayers this go round. The rollar coaster feels a little faster this time and prayers are the perfect safety net to help us move forward. God bless ya’ll and a Happy Saint Patricks day!
Thank you for reading and remember to make it a great day!