Current State of Things

Hospital Date Day
Danny and John Hopkins August 2016
Currently Danny is in patient at Johns Hopkins. The first thing to know is that Danny is at the hospital, but not for any of the major things. His lungs, temperature, blood pressure, and other body systems (often with transplant other issues come up like kidneys or as you may recall tummy) are all doing very well and remain stable. The issues lie with the other stuff. Danny’s tremors, blood sugars, muscle strength, and ability to sleep are wreaking havoc on his body. As a result the ability to have a clear mind and hopeful outlook is a huge challenge. The first thing to do in this scenario is to be grateful. The most important things are going well, even the puncture in the lung from last week is healing nicely! But after we take that breath, the next focus is how do we fix what is causing trouble.

 

We don’t know the root cause of the issues besides the simple fact: Dan is full of very powerful meds. Beyond that there is speculation and best guesses….there has been trial and error…. even some temporary solutions….. but overall it is a game of wait and see. A game that once Monday at 1:30AM hit Danny just couldn’t play along. The ideal situation would be to have Danny be at home while they adjust the meds. He can have his own routine, be with his family, access to a variety of food, and likely more comfortable.  But at this point Dan felt like sitting at home was just not an option so he asked to be admitted.

 

Each of these news meds are very powerful and interact in all different ways. Then add in the process that once the body gets used to one set of medications, it seems to require a change up. He is stable, but then they see some some aspiration in the lungs so we have to increase the steroids. We start to lessen the anti-rejection and steroids, but Dan’s lungs get punctured, so we have to up the steroids, while still trying to keep the rejection meds at a low, but effective does. It is a balancing act that is extremely challenging due to the fact that not one patient is the same! They start them all off on the high doses and just try to slowly reduce based on how that specific body responds. Considerations include dose size, medications history, how that body absorbs the medication, and what the patient can tolerate – this is an art.  What this all really translates to: trial and error are the only options – thus crazy side effects.

 

Over the last few days and through the coming weekend they will continue to adjust and try to reduce the side effects as Danny remains at the hospital. As an example, one of the most powerful medications – likely causing the tremors – has been out of Danny’s system for almost a week now, but when it disseminates it lives in the fat cells. This means days to weeks to flush it completely out, but with it being an anti-rejection it has to be replaced with something else, even as it still flushes out. Thus a variety of meds going in and variety going out. As of today, Danny has improved and even had a better time sleeping. But according to him, we aren’t quite there and just today one of the meds that had to be removed was required to return.  Time will tell.

 

Right now the mental side of this experience I think is best described as two hamsters. Danny is the hamster on the wheel – going, going, going….fast but the destination isn’t changing. I am the other cheering hamster that is watching and trying to encourage him, but doesn’t really know what to say since the wheel just stays in one place. All the while the rest of the world is buzzing by our glass case going about their regular life. We can’t yet join – but we can watch…. we have a better view than years past, but it is still limited, and what the future hold is completely unknown. This is a hard existence.

 

Of course there are much harder ones and when I get really down I do my best to remember the stable things in my life – a home, a job, warmth, protection, food – that I just take for granted. While I am busy worrying about next medical steps, my basic needs are more than met. It is important to keep that reality in focus, because when my mind wanders it can get pretty lost in the darkness.

 

When this journey comes to an end – or at least a closer resemblance of returning to our life – we still hope to be husband and wife. Right now we are so busy being in the world of medical, caregiving, insurance, hospital, housekeeper, chef – we both don’t even remember what it was like to have a weekend where we go do something fun. You are constantly waiting for the next thing. I was so proud of myself the other day for remembering that if I am home laundry needs to be running… trash cans need to be emptied… and food needs to be cleaned out – because I just have no idea when the ER or hospital will call. In some ways, I feel empowered to be better prepared – and in the same breath I am afraid that we will never just return to husband and wife. For seven years I have held the title wife. I can’t begin to guess that I know very much – in fact (especially right now ) I really feel like I am just a survivor, not overly successful, but still standing. What I have come to realize is that marriage is a journey, not a destination. When you get married you say these words, you expect it  – but I could never have guessed what it really meant and truthfully I am not sure anyone could ever describe it to me.
Hopkins Hospital February 2017
Hopkins Hospital
February 2017
On this journey you are met with challenge after challenge and you are facing them together – yet still as two individuals. You have your own baggage, your own approach, your own opinions – and if anyone is like us, they aren’t always the same. Here is where the magic lies. Those who are going to see this marriage thing through find a way to conquer the bumps in the road together. Choosing to listen and hear each other, weighing both approaches, and compromising to find the best fit your family is the ideal formula, but life is hard, fast and real- so often couples won’t handle EVERY situation that way. However if you can see the faults even as growth, you will experience positive results. In this season of life we are in constant challenging moments. Mix it with exhaustion, depression, anxiety, fears, pressure, stress and we have created a hot bed for destruction. If you don’t handle every challenge perfectly, OK – you will do better next time…. if next time is less than 24 hours away and involves some serious medical situation it is similar to trying to swim when the waves just keep coming. It is scary and hard to not imagine the damage of the learning curve here is not permanent.

 

Right now we are in the heavy thick of the moment. We were blessed with such a kick ass start to this transplant experience, the slow down and then the real struggle has hit hard.  But, as always, there is a silver lining – God. Never in my life have spent so much time praying…. reading stories of faith…. and remembering that when I am really struggling, to pick my head up and look around, there is a lot of pain in this world.  It is a broken place that we call earth – so clinging to my faith, following the voice of my God, and leaning on the strength of my family and friends I can learn to cope, survive and move on from it, appreciating life for what it is and knowing perfection is not of this world.  Although, hope, joy admits grief , true love – these are the things that when guided by faith you will find and it can change your life. Right now the weak parts are shining through strongest – but  we aren’t at the end yet and if we keep walking, while improving, we might not just survive but thrive as a result of this time.

 

Thank you all so much for your prayers, encouragements, and belief in both Danny and I to conquer this moment. Sharing our story is therapeutic for me, but it has also been a tremendous blessing to get these moments of pump up by your kind words and actions. The future feels very foggy, but thanks to our history and this community our foundation is strong and that is very powerful.

 

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

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