The Plan….. for Now

View of Baltimore from Hopkins November 2018
Hi guys! Happy Sunday. Popping on to give a little status update and since it is late and the outline format helped me be clear during the last post – I am going for it again.

 

Reminder of the ultimate goal:
If you looked at our post from in the hospital you can read about the background of how we got to this bump in the road. As it evolves, I want to be clear on the main goal: get Danny’s lung function back up to 100%. Now depending on what they continue to find and the treatment, it could change the percentage goal, but no one has taken 100% off the table and that would be the best result – so I am sticking with it. We need his lungs to get back to their fullest capacity and to stop dropping for good.

 

So what do we need to do?
Well that is a great question….. we don’t really know. The two options for why the lungs are dropping are either rejection or an infection/virus/bug. So far we have ruled out major infections from all of the obvious areas and as of this morning they have ruled out rejection. That leaves us with the best guess: some sort of hidden virus/bug. It is not showing up as bacterial or fungus…… so it is likely a bug that is just hiding out somewhere. Now Danny did test positive for Rhinovirus…. and for all of our non-medical folks: that is the common cold. This could be the cause but that aggressive of damage(quickly decreased lung function) seems unlikely. Tomorrow our regular team returns (the last we saw them was Friday after the bronch) and we may have more answers.
The best guess for treatment, with no clear indicator of the problem, is to have Danny return to the same IV treatments he had the summer after transplant that helps to blast his body with all sorts of anti-bodies and basically confuse the body system with tons of new flooded “stuff” (from other donors) that will sorta ward off everything. This would be weekly visits to be treated, but he would then be able to come home afterward and minus a little nap here or there, he feels pretty good.

 

So why does Dan feel so gross suddenly?
Overall Danny has felt pretty good during this episode and the hospital stay, but yesterday and today he hit a terrible wall. It is likely his body coming off all the steroids (that sends his blood sugars and nerves crazy) and for anyone who has done hospitals stays – just being in there is exhausting. With all of the blood draws, and testing you don’t get to sleep very well and often leave there pretty worn out. Good news is he really isn’t feeling badly from what is going on and as long as we don’t have to mix the meds up for a little while he will feel better soon. Plus there is no new medicine being added right now so they let him go home to get some real rest…. WAHOO!

 

And I say this with all the love in the world….. steroids makes you CRAZY. Moods, skin crawl, frustration, – a good friend of ours (who does not have CF) calls them the “Ugly” drugs….. because that is what they do – make you act sorta ugly. Luckily Danny and I are pros with this one. He came home, took a long hot shower, rest time alone from the world in the basement, we had dinner together but turned on a comedy, and he has retired to quiet time alone tonight while I work. We knew it would be hard for him to come home with the steroids left overs in his body and we were prepared. And just a note for you transplant folks – yes he is always on a bit of steroids and will be returning to that “baseline” amount, but that does not seem to effect him as much…. so that is why the additional amount is causing so much change.

 

Wait …. why is he home then?
Bottom line is Dan’s increased steroids ended on Thursday and his body has just been regulating back to his “normal”. The assumed plan when he went in on Wednesday was by Saturday or Sunday we would have a bug or infection or rejection to treat and that demands you be in the hospital so you can be monitored 24-7….. but his tests showed non of these. For now we won’t be doing a treatment, at least for a day or two, and his body is regulated according to #s/levels (just not how he feels), so home is really best.

 

Next Steps
We wait. There is a chance he will go back up for treatment (but we are again assuming it will be outpatient since we can’t call in the big guns….. cause an unknown virus doesn’t have any big guns), but luckily outpatient. To be continued….

 

So are we supposed to be happy?
What we are both telling ourselves is YES. Anytime you can go home is a reason to be happy. However the fear of something lurking, waiting to rear its ugly head is unnerving. Without an answer…. means there is no plan… means we only have a vague goal…. and we are feeling confused. Danny is one of the best patients I know, because he knows how to do CF life. Transplant is all new – he doesn’t know how far to push things, what meds could help, what he will feel like based on the choices he makes….. so it is hard for someone and their family who is a professional patient to be so lost. We just keep going back to the blessing this is….. we don’t know how to handle this because Danny is healthier with new lungs. That is our miracle and the rest will just have to be accepted as it comes.

 

Thank you
Last night was really hard for Danny and I. Even though my videos explained our plan to not give up on our goals, and we truly mean that, we also know it is not unlikely that we will need to forge a new path on quite a few of them. And it does mean that we may not get everything we want…. no matter the path we take. But transplant has given us the hope that dreams are possible and the courage to say them aloud. For years we said things we “wanted” but it was always “we will see” or “if it works out” or “if it is meant to be” – because then if they didn’t work out we wouldn’t feel so bad. But the truth is you still feel bad whether you said it aloud or not. And saying it aloud makes us committed to working hard towards them. Plus these new lungs have given us the ability to have some of these things. So we are being brave and saying that we want FULL LIFE aloud…. and if we don’t get it – then we will know we lost our chances fighting for them. And it is our belief that we will end up better people by working hard for these dreams, but learning to accept the plan God designed for us. In the meantime though, the support, prayers, messages, encouragements, gifts, thoughts and love have reminded us that you all think it is possible too – and we are grateful for the support. Thank you.

 

This week we will say goodbye officially to fall (yes, ya’ll we are STILL hanging on to our pumpkins until December 1), but the holiday season is here and it is truly beautiful….. so we plan to cherish that in all of its glory. We hope you do too…. thanks for making our unique Thanksgiving holiday still very bright.

 

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

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