Where We Stand

Since May I have had on my blog calendar (yes I have a blog calendar is anyone surprised??) to do a post on Dan’s health. It’s not that I don’t want to talk about it – we talk about it a lot. Its not that I am not willing to share – I have started a blog and both Danny and I have found this blog to be a place that has brought a lot of clarity around our thought process for both ourselves and our circle. The truth is that every time I go to write I know that it could change…. or worse I will catapult us into one direction or another. How is this any different then just answering “How is Danny”?  – it just seems so much more permanent (to read my post about answering that questions go here). And if I am being one hundred percent honest – it hurts more. I am constantly living between saying “this is what we know how to do” and “this is so new and different” .  If I answer you in person or when I post on quick social media I can put a spin on it. I will see you asking with your ,warm smile and kind eyes and I feed off of it. I am going to answer that “it will all work out” and “God will protect us” and when you smile back, I actually believe it. I know we both feel better and we can go on our way. I hope that I came off strong and determined… and you feel good for asking and keep us in your prayers… a win for us all. And then when it changes I can just say “o – its a bad day” or the “wind has changed” and everyone understands. If I write it…. all out…. its out there and I am going to invite you on our real journey.  The one that changes all the time… the one where I am not strong and I don’t always see the bright side. The one that I have been writing this one intro paragraph for an hour because I have to stop and catch my tears. But its time – and I am going to write and share… because you all give me strength and I think its a journey worth sharing.

 

Here is the medical side: Danny’s lungs are in the 20s -this means hanging around 20% functioning. Sometimes on the higher end, but sometimes on the lower side…. and recently much more on the lower side. This tells us they are failing. CF is taking over and the reality of these lungs staying with Danny is absolutely not an option. CF causes harm to other body systems – why he has blockages, the reason he has poor weight gain, the meds that keep him alive cause issues with kidneys, veins, and blood clots. But we are blessed that in the main (minus the two blockages in 2015) that most of Danny’s suffering body systems are the lungs and makes things a little less complicated, however that will also be what could kill him. The cure for Danny: a double lung transplant. To get a double lung transplant there are is a lot of criteria. His blood type, his size, his body’s ability to withstand the surgery. Then there are the factors of what determines if these lungs are truly finished – oxygen levels, pain level etc. I openly admit, I get them mixed up. I try really hard to keep it all straight but it is complicated. We are blessed with an amazing medical team and I remind myself they know what to do and I just need to listen and take cues from them.

 

So there is the problem and the solution. Now what? In a previous post, I talk about CF being the devil we know and the transplant being the devil we don’t know. These new lungs could be the solution…. heck Danny and I could have to figure out how to be normal – right now its real easy to dream of Dan getting back to his career, having our babies, buying a home – but if we actually have to go and do it, anyone of you can remind me that life is tough! But you know what? I would love those problems…. I pray someday I am complaining about my kids and messy house and you all can remind me of the days I longed for that … this day. But there is a bigger fear – greater than that one…. what if we don’t get that chance? What if Dan has these new lungs but they don’t take, we never leave the routine of illness? Then he needs new lungs… then we are living and asking these questions over and over again. Another surgery… other fears…. and what if none of it works. I have been reading Confessions of a CF Husband and you know what? I am going say it – I can’t accept God’s plan either way… .I don’ know how Nathan does it… I am Catholic, I love my God, my faith makes me feel safe and like it will be OK…. but I don’t give into that will. I can’t …. he is my world and the answer is just no.

 

Earlier this summer Dan’s team from Baltimore told us we could list. This is good news – we have passed the tests with flying colors. A big piece of those tests are the interviews, our support system, and finances. So many of you have been part of our donation efforts and I want to take a moment and thank you. We are still unnerved financially what this will mean…. but the truth is thanks to the amazing support by our community we have the funds and this will see us through…. thank you. Those words aren’t enough – in fact I wish you could have seen the social workers face to see how much we have raised to really understand the gift you gave us. To be told you can’t have or do something because of funds is news I can’t fathom and thanks to you all I don’t have to. We also have a support system that is unlike any other… we are so loved… and even though most of the time I say we are all good or just ask you guys to maybe drop off some gatorade, the truth is (and I was told by our social worker to buckle up, get over it and be ready to accept help and people doing my laundry…. talk about fears…) I am going to need to call in those favors ya’ll. And I am grateful I know the numbers to call…. thank you.

 

In some ways this news of “we could list” feels as good as “you got into college” acceptance letter – we did it, we have prepared everything we can, we have done all the tests, we have completed the many prep procedures…. we made it! But as soon as that relief washed away, guess what? The reality sets in….. we can list. Danny’s condition is officially bad enough that we need to prepare for this transplant. Its a monumental realization.  At the time we were told these words it was a way of indicating the seriousness of it… but also left the choice still up to Danny. He is not critical…. he still feels he can get something out of these lungs… and so we are OK to wait a little bit and just see.

 

That presents a new set of questions around what are we looking for to know if its time to list? The big ones: Danny needs oxygen (we are still not there), more frequent hospitalizations, energy level,  and pain level. These are in addition to the stats and % and vital numbers the docs are keeping an eye on. Well at the beginning of June that was all going ok….. sorta of. Dan did a round of IVs and didn’t really bounce back but was not horrible. Then we had a long weekend that landed Dan in the ER Monday for IV fluids but he still was sorta ok. And then the last few weeks – he is sleeping a lot when he doesn’t want to be and conversely not comfortable enough to sleep when he wants to …. we are both at the end of our rope mentally and emotionally wondering how each day will go. My ritual call at 11AM from the office to see how he is doing is turning more and more frustrating as its rarely a good day….. he is trying other methods: a special trainer, massages – things to open up the lungs and airways, but these leave him exhausted and in pain.  It sorta seems like the grains of sand in our hourglass are moving pretty darn quick.  And there is the most important piece of this puzzle – if we wait too long…. if Danny somehow misses this window and his weight and lung #s get too low, his strength dinishses too much – he will be too sick to list and we will have to work to get him back to healthy to even have a chance at new lungs. Its a tough tightrope to walk – and one we are venturing across daily.

 

All of this updates have been on my mind…. I have been meaning to write…. in my mind I have been thinking we will move towards listing come fall and the ball will start rolling. We hope to use the blog to share this journey, keep everyone updated, and provide something helpful to the CF community. This morning Danny woke me just as the sun rose to say he had to go to the hospital via the ER. He is too uncomfortable to be home…. we need him monitored.  This feels different… things are changing… life is shifting and it was time I start getting used to writing the updates here.

 

Today I am home to try and get things set here. Normal life stuff – laundry, house, dog, contract work…. but I am having hard time. My a-type just keeps thinking of our pre-listing checklists, the one we both have been keeping out loud and the one in my head. I am flustered and nervous that I won’t get that time to address those items. Including  a few fun things….. once we list we can’t leave the area in case we get that call. But last night we both were so frustrated of never knowing if the next day we can plan to do life or not. Which is it…. I try to turn to praying but my head and heart are cloudy.  I know tomorrow could be a good day…. I know he will probably be back home this week and things will still be real, but maybe not as scary…. I will get a chance to set us up for a smooth transition… but I should also know NONE of this is up to me.

 

I am going to go and try to take care of our house… prep for Baltimore and fight the urge to heat up my Chinese take out and watch a movie. But I might do that too.  And Danny  – he is settled in the ER awaiting a room and next plan. He wanted to do this part alone, knowing this is not an extreme emergency and it will good for me to be up there when I can help more.

 

As we face this next phase I remind you this story telling is from my perspective. We have talked of Danny writing and maybe writing together…but for now you have the wife perspective which is going to be a different one than the patient. Just like our story is going to be different from anyone else. Thank you for the respect and grace towards our sharing.

 

God bless us every one,
Jackie

2 thoughts on “Where We Stand

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s