Have A Little Faith in We

 

 

Today’s progress report can be summed up in the line Danny said as we drove to Baltimore, “I hate to complain so much when my lungs are doing so well, but I just feel awful.” The lungs continue to look really good and we hope that Friday’s bronchoscope will show just that – but something is leaving Danny with no energy, extreme tremors, and a consistent feeling of either constipation, nausea, or general blahs (ya know sorta dizzy, weak). And today I loved our team even more because they were just honest:  “we don’t know what it is, but we will figure it out.” There is a possibility it is anti-rejection medication levels, or a lack of pain management, or potentially blood sugars. Any of these could cause a myriad of side effects and chances are each of them are causing a few different contributing factors, so mix them together and you get: blah! As our primary doc listened to Danny’s lungs and said “ I know it must be annoying to hear this, but the truth is all of the feelings you are having now will go away – in 6 months you are gonna feel great because the lungs are doing awesome” we were reminded just gotta keep going and this too shall pass.

 

So with Danny’s overall report today and what the blood work is saying chances are very likely the med levels are out of whack. It is very challenging because each CF patient is different and they all need different things. The only way to truly know what each particular person needs is trial/error and time. So starting with early morning blood draws that are VERY complicated at our local hospital tomorrow, followed by some additional blood work at Hopkins while we are hanging in Baltimore tomorrow and Friday for the bronchoscope, they will begin to make adjustments. There is reason to believe the right mix will be found quick and Danny will feel better in the next few days….. but it is also very possible that he won’t and we may even need to start doing some tweaking while Dan is in patient. All remains to be seen, but I think it is encouraging to imagine that this exact time next week we could have some real solutions on our hands.

 

During our Wednesday appointment our only specialist was our dietician. Her report was really good in terms of Danny gaining weight (something noted during our appointment two weeks ago that needed to happen)  and some helpful adjustments he had made on his food choices (not perfect…..but I was eating a bag of party mix during this segment of our appointment so ya know…. we all try….), but that we needed to keep working on it. The only frustration was the reality that we are still trying to understand the insulin and blood sugars game. It is so much harder than you would ever think and we are absolutely STILL on the learning curve. Thankfully she was patient and we received a new set of instructions to try.

This week we will have the bronchoscope on Friday which will provide insight to what the lungs actually look like, allow the docs to take samples, and help us know where Danny falls on his healing spectrum. The last one of these procedures on December 29 did end up requiring an increase of steroids, with a hospitalization to facilitate it – but the response to those meds was great, so even if we find a little bit of abnormality there is a lot of hope it will be fairly easily remedied.

 

This is something that is still not really on the table for Danny – and you know what for many at this stage it has already started to happen so we are very blessed. But we are constantly reminded that it can happen at any time, but luckily it often starts at a manageable phase. Friday’s procedure will reveal the most details surrounding this topic.

 

We were told that both the Hopkins team is human and that Danny and I are human. This means there is no way any of us will be able to be 100% perfect during this whole process. For an OCD, a-type that beats herself up on the regular for not doing more, or thinking if I could just get a little more organized maybe Danny would feel better, this was a big moment for me. Even when our coordinator said, “you are doing it all right – in fact I would call us a little more with your complaints, that can only help us work with you more!” I must have still looked a little frazzled because she followed it up with “we won’t think you are being ungrateful or wished we had not given you lungs” and at the point I just laughed. They are right – we are doing the best we can…. with caregiving I am doing the best I can…. and even though there were some scary moments in today’s report (like blood sugar coma discussion) that reminded me we are talking life and death here….. no one has died. So continuing to do the best we can is all that is required and maybe not be so afraid to ask for a little more help. This was a good transplant AND life lesson!

Danny and I are married…. we are each other’s partners… we are each other’s friends…. there are things that we know about one another that no one else on this planet will ever know – and yet I still don’t always understand how he feels in this moment. I don’t know if he is nervous or scared at every juncture…. I don’t know if he is tired or over it…. I don’t really know what he envisions when they are giving him best and worst case scenarios. And truth be told, we are often too tired or just not able to digest it all enough to then talk about. This is hard – and it rocks your core. This transplant has changed so much in our lives and we are sometimes just too overwhelmed to figure it all out, instead we just have to survive it. This appointment helped me to really say to both Danny and myself – this is hard and we are doing the best we can! Maybe thinking we aren’t doing so well because we are still just dealing and not getting back to normal is wrong. Each week we seem to look ahead to guess at how back to normal we can get…. and you know what? I am not sure its gonna happen for awhile – and for some things I don’t think they will ever be like they were. Today we both marveled out how odd the outside world appears sometimes – a household that has two jobs to manage, kiddos to manage, a life that they can lead without a lot of help, going on vacations just as a couple, having savings, – we sorta likened it to seeing a unicorn. And yet, I think we have been given a scenario that demands you stop, assess your life, determine what matters the most and just focus there. That isn’t something everyone gets a chance to experience – and for us it has been life changing in so many seen and unforeseen ways! So even if we are a bit at a loss sometimes (there is no handbook here), that is OK because maybe the path being built is more than we can comprehend at this time and just deciding to get up and do this together again tomorrow is our most important win.

Jackie