Hopkins Happenings

Hopkins November 2018
Hi friends – hopping on here to give a little update of what is happening in our world…. if you follow us on social media then you know our Thanksgiving plans of celebrating the holiday with the Bessette side of the family and then heading Friday first thing to Pittsburg for a hockey tournament with some of our closest friends, have fallen through and instead Danny was admitted to Hopkins. There are a bunch of different thoughts and updates and questions rolling around in my head – guess I am a little out of practice with medical updates (what a blessing!!), that I am not really sure where to start or what to include….. insert shoulder shrug emoji. So I am going to break it into bite size pieces ….

 

First: What the heck happened on Wednesday?
Wednesday we came up for a touch base after our last visit that was indicating potential rejection. We were confident it was going to be rocky, as the heavy duty steroids had not worked and Dan’s home spirometry system had shown decline. This visit we also assumed would be about creating a plan of action. What happened was a bit more of a shock. So Hopkins lung function system is always our standard (see the last post on why) and that was the first stop on our pre-holiday Hopkins tour. Numbers were down to officially 80% function. For over a year Danny had been at 100% or above and a little drop was to be expected. So when he started to hang around in the 90% range no one was too worried. But when we saw 90%-100% range this summer and then the fall brought numbers that were starting to slip into the 80% there was concern. When they dropped into the mid-80s over a matter of weeks, there was real concern and when they hit 80% on Wednesday the alarms started to really sound: something is wrong.

 

Yes, 80% still seems pretty good, as Ganmommy always said “B or Better” for school seemed it could apply. But the reality is for the drop to be falling on a regular basis and then so quickly (a solid 5% in 4 weeks range) this translates to: something is aggressively attacking the lungs and the damage being done is aggressive.  Danny and I had been under the impression that we had been responding aggressively with double and trippling the steroids at home. But we learned that it can be increased even more, it’s just that other body systems will be sent into a tailspin and you have to be monitored 24-7 when the happens. Translation – he had to be admitted that day. With CF you can sometimes wait a little bit beacuse the lungs are just messed up…. but with new lungs and a drop like that in just a few weeks: every day counts… and we couldn’t even wait to go home and pack our bags.

 

So what is “it” that is causing all the problems?
That is exactly what we are trying to find out. The first visit indicated rejection because there was no signs of infections or virus through a bronch or blood tests.  So the treatment was heavy duty steroids to fight rejection and then a little side of antibiotics (and by little I mean two different kinds at the same time) just incase there is some sort of bug they can’t detect. None of these things worked and in fact the lungs got worse. Today Danny is in another broch to see if the status of the lungs have changed (signs of infection like mucus etc) and to take actual samples from the lungs to test for bugs. There is a chance the infection is hiding in the walls of the lungs and really hard to detect. Our Doc said they could even take a sample, but if its not in the exact infectious area they won’t catch it. All this to say – these little bugs and infections and viruses can hide really good and we have to try and find them.

 

The samples being taken today will be a rush job and we hope to have answers tomorrow afternoon. Also when taking samples from the lung there is always a risk the sample (which is smaller than the tip of a needle) can cause a tiny hole in the lung and actually lead to partial deflation. The chances of this happening are SUPER rare….. but as luck would happen it has actually occurred with Danny … twice. So they only take samples when it is absolutely necessary – and today that is where we stand: it is necessary.

 

What does the treatment plan look like?
Good question! Danny has been in the hospital receiving HEAVY DUTY steroids since Wednesday night. This means we are coming to the end of the road of being able to have him take more steroids and the body will need a rest. Also, the body has to recover from all this treatment – for instance Dan’s blood sugars are sky rocketing and falling like crazy because of steroids (the same thing today and he has not even been allowed to eat or drink!). So we have to give some time for them to get him back to stable. Secondly we have to give some time to figure out if there is a hidden bug….. and if so what antibiotics are needed to treat it – and if that needs to be in house or he can do them at home. And finally they have to monitor his lungs to assure the samples did not cause any issues.

 

All in all we won’t really be able to have a new plan until the samples come back, but if it is the R word – we will likely be heading home since they have thrown too much at him and there will be a rest period. As we also understand there will be a long term plan of action ….but they don’t even want to touch on it with us until we know that is the case.

 

So what is the goal? What are we even hoping for?
Great question…. in fact our number one question. As of right now the primary focus is: get Danny’s lungs back up. Now the lofty goal would be to the full 100% and we have been told once we know what it is – there is reason to believe that can happen. But the goal can also be to help him just stabilize at 80%. This would be a loss, but people learn to live full lives on reduced function and with rejection. The hard thing is that loss of 20% means your always a little diminished so if a cold should pop up or a virus in the future – any decrease could quickly drop you in the 60% or worse range… and then we are looking at serious problems.

 

How does Danny feel?
Pretty good. Before this drop was even discovered Danny felt GREAT! The fact that he has lived life on 30% and even a little lower… being at 80% feels fantastic for him. What has made him feel so nasty are all the drugs we have been throwing at him since October. The steroids, the antibiotics….. they make him feel like crap. So the good news is even though it was not being fixed, the periods of the cycle that were on a rest from the meds he was living his life just fine: work, hockey, gym, playing with Quinlan. It’s just to treat this thing the med cycle had to always be on and he would feel the yucky side eventually.  But, now that he is sitting at 80%, for the first time Danny is actually starting to feel tight. This has not happened to him for months and a little disheartening.

 

The good news, Danny is still getting tastes of feeling good….. feeling “normal” and this has provided the BIG motivation to keep fighting for feeling good. His mental and emotional state is amazing. He is not going anywhere negative or worried – just sticking to the facts and motivated to find ways to help himself. He has come up with med suggestions, found additional dietary benefits, and is chugging the water. It has been freaking inspiring to watch him just push and push himself to be better.

 

And some of the harder questions……..

 

What about the future plans?
Danny put it best – we are putting a lot on hold, but let’s not lose the ground we have gained. So the career plans for Dan, our plans for growing our family, a vacation we planned for December,  and discussion of a move are all on pause. It has been painful and hard, and a few things have even had to be cancelled. This has weighed heavily on both of our mental states. But we are finding comfort in continuing to work towards those goals in little ways right now. For example if we wanted Danny to be able to go full time or for us to leave the area or for us to have kiddos we both have to be in peak physical shape. We can’t be loaded down in failure to find time for working out or eating clean and meal prep. These things will allow us to be physically able to actually achieve those other dreams. And for any of you who have tried this sort of life revamp – it is HARD WORK. SO focusing 150% there is still walking us toward our BIG goals, but certainly enough of a challenge to help pass this period of waiting for the green flag.

 

Would Danny need another transplant?
This questions pops up and it would be a lie to say it has not crossed our minds. The answer at any given time (not just right now) is that Danny would need another transplant – period. Organ donation is tricky and subsequent transplants has always been a part of this – even before this transplant. It is just the way this life works. Right now, our Docs won’t even talk about it cause that is not where we need to focus.

 

How is Quinlan?
Well you guys – Quinlan is currently living his best life with my in-laws. Yes, when I returned home Wednesday without Danny he had an awful night. Nervous wreck, running around anxious, chewing his own paws, there may be a hole in our guest mattress pad that he “helped along”….. he is miserable without his Dad. But when he got to my in-laws it turned into vacation time and he is able to relax cause he assumes we are just away. Plus he enjoyed turkey on Thanksgiving and it has made all his dreams come true.

 

How come you look so normal on social media (besides the fact that my sister is an amazing hairdresser)?

 

This has been a big part of our thought process: actively keep stable in the storm. I am living in Baltimore, but not out of the hospital. Thanks to COTA, we are able to have a hotel for me to return to at night for a shower, a bed, and to get ready for the day each morning. Of course I am 6 minutes away if anything comes up in the middle of the night and I am always allowed to sleep at the hospital if  I need to (and actually Hopkins is EXCELLENT with this…. much better than other places), but both Danny and I have found that if I am able to get good sleep, take a shower, get ready and feel like myself each morning I am stronger for us both. I am able to get back to work next week without back pain and exhaustion from not really sleeping. We have to try and keep the ground we have gained and not burning my candle down has been a big part of this.
COTA’s Miracle Maker Event
I am thinking about a whole blog post on this. Because this is a solution that has taken us YEARS……..YEARS (and tears and anger and fights and worry and anxiety) to get through….. but it has really helped. And I am going to say the thing I thought you are never supposed to say: I have to take care of myself if I want to be any good for Danny. For me that means down time, good sleep, and for right or wrong shower and getting ready (mascara and straight hair and I can conquer anything).

 

Alright friends…. that is what I have got! Hopefully this makes some sense (I feel like I have lost my sea legs with medical posts) and helps bring clarity to the gray we are currently sitting in. Thank you all for your incredible support. I like to share our life to connect with others, to educate about this illness, and to impart what spiritual, mental, and growth gifts this life has given me. What is amazing is I am met with incredible support, I wonder what I would do without this outlet and all of you??? So thank you – you have become a part of my heart!

 

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

2 thoughts on “Hopkins Happenings

  1. Prayer constantly is what we can offer! Love my kids and hate to see the struggle but know that Dan is tough and always seems to be able to pull off the miracle!

    Love Dad

    Like

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