Friday, July 31, 2015

Day +58

The last three days have been a whirlwind of emotions and nonstop tests at the hospital, and I am sitting on my couch tonight feeling an odd mixture of anger and yet huge amounts of peace that the week is finally over, conclusions have finally been made, and this weird, surreal experience of the past few days is finally behind us. The week started out like any other week, just getting through the days. Aurora came home Monday and it was wonderful to finally get the family all back together and start getting into a routine again. On Wednesday we went in for my typical clinic appointment, expecting nothing out of the ordinary, and then sat dumbfounded as nurses and other medical personnel started to freak out over the fact that my oxygen levels were sitting around 89 to 88. This is low, my oxygen is usually around 97 or 98 (as it is for most people), but my oxygen levels have been decreasing, and that is not unexpected with transplants in general as there is usually always an impact on the lungs due to radiation and chemotherapies, and my oxygen levels the week previous had only been around 92 or 93, so the drop was not substantial. What's more, in Utah, insurance will not even cover an oxygen machine for a patient unless their oxygen level is consistently below 87 as it is not considered necessary to give that patient more oxygen until that time.

So, we sat in our room as nurses came in and out hooking me up to different oxygen masks and bustling about trying to see if my oxygen levels would rise. They did not. At this point I understood that they were getting worried because my oxygen levels should be rising with the increased oxygen, so obviously something bad was happening with my lungs, but I still had no idea what I was in for. What I was in for ended up being an entire day at the hospital having all kinds of fun tests run and huge needles jabbed into arteries and other areas to try and figure out why my lungs were suddenly not working. At this point I should interject that there is a medication I was on, Dapsone, that I was also on during my previous transplant and had issues with, and the doctor's initial reaction was to test whether it was causing the problem. They did a gas/blood level test of some kind (the needle getting shoved into the artery--fun stuff) and got the results back immediately that my red blood cells are destroying themselves, which is definitely preventing oxygen from getting into my blood and could be the complete cause of why my oxygen levels are low. Dapsone causes this in many patients, and when one hears hoofbeats...well, I tend to think horses, myself. For whatever reason, my doctors were unwilling to accept Dapsone as the primary cause, and while I do respect the amount of attention I have been given the past few days and the amazing and utter concern and care put into me, I can't help feeling like the hospital just got a huge pay day(s), I have been put through a ringer that I will not be forgetting for quite some time, and I just want to hit someone, really, really hard.

The doctor seeing me on Wednesday came into my room with a coy little smile on his face and asked me, "Would you mind being our guest for a few days? I just feel like we can't send you home right now, without knowing the exact cause of the drop in oxygen levels, and quite frankly, it is a lot easier to get tests run when you are inpatient, rather than outpatient. When you are outpatient, they think that you are just not really sick, and it can take days or weeks to get tests run, whereas when you are inpatient we can just get things moving and they get things scheduled." I stared at him. I just stared. I had just walked into the hospital, felt completely fine, and he wanted to ADMIT ME? To make SCHEDULING easier? I HATE this place. Just the thought of being stuck in a room again, monitored every minute, I started to panic. Why did I move to live 20 minutes away from the freaking hospital if they have to admit me in order to schedule tests? That is in no way ok, and that is not a reason to admit someone to a hospital. And I am sure the thousands of dollars my insurance would pay to have me staying there would not hurt anyone's feelings. I blurted out, "Are you serious?" He smiled and nodded, like it was absolutely no big deal. Get admitted to the hospital for a few days, a week, he had no idea. Just do it. I tried not to cry. Colten asked if we could have a few minutes to discuss things, as he was surprised at me at the sudden need for admittance.

And my amazing husband came to my rescue once more. We talked, he calmed me down, he agreed that it was ridiculous that they wanted me to stay, that it was better for me mentally to go home and it was ludicrous to admit someone just to get tests run. And when the doctor came back in, he put his foot down and said that I was leaving, and they needed to figure out how to get the necessary tests run with me as an outpatient. The doctor got huffy, and said that he would need me to sign a paper saying I was refusing his medical counsel that I should be admitted, which made me feel a million times worse and like I was making a terrible decision, but then I reminded myself of his entire argument being nothing about my physical health but rather poor scheduling practices, and I stayed strong in my decision to go home. After today, I am so thankful for that decision.

The doctor actually told us he was "grasping at straws" and that he expected all the tests they ran to be negative, and amazingly enough we even managed to get many of those basically worthless tests ran on Wednesday (without being inpatient even...). When my oxygen levels rose slightly before leaving on Wednesday, the doctor decided I didn't even need to sign that slip saying I was going against his medical advice, and he joked to himself about how "things seem to work out." Then, even more amazingly, we got the rest of the tests ran on Thursday, but we ended up spending almost the entire day at the hospital with a 6-year-old, who was absolutely extraordinary, but is getting very sick of being at the hospital (and oh man, I don't blame her). Thursday brought with it the dreaded possibility of a fungal infection in my lungs. This was not something that was brought up at all on Wednesday, and something that is very scary in bone marrow transplants, particularly when the patient is already on high dose steroids that can make fungal infections worse. So, a lung specialist and an infectious disease doctor were brought on to my case, and more tests were run. I was sent home with oxygen, although I never technically hit 87 for long enough that it was warranted. We tried to sleep last night, praying that my lungs were clear of infection or that it could be halted. Maybe I should have been admitted after all. What was going on? Did anyone have a clue?

That led to today, when I was supposed to meet with all these different doctors and answers were supposed to finally be given. The lung specialist was underwhelming, to say the least, and he was the only doctor I ended up meeting with. The infectious disease doctor would not answer his phone, and the other doctor (the same one who wanted to admit me) ended up scheduling a new patient meeting, which takes hours, right during the same time he was supposed to meet with me. The lung specialist decided to do one more (absolutely worthless) ultrasound of a scar on my neck, just to "cover every base and make sure it wasn't vascular," go over a brief history of everything that has been done to my lungs over the past 12 years, and then tell me, "You have no fungal infection of any kind. There is no tumor activity. Your lungs are scarred exactly like they were two years ago from the cancer that was in the left lobe. We have no idea why your oxygen levels dropped, except that it was probably the Dapsone. Thanks for being a mystery, we are not going to do anything, the Dapsone should be out of your system in about 10 days."

Oh, and he wants to meet with me again on Tuesday, just since he got brought in on the case and needs to have a follow up appointment. One more pay day. So much time. Unnecessary pain. Worthless worry about fungal infections or worse for nothing. Hours that Colten could have been shadowing and preparing for school, literally almost an entire week of his time, all wasted on meaningless tests. I am so relieved it is over, it was just the Dapsone and the problem will be fixed in a few days, but I am so angry about how this whole situation was handled, and what the last few days have cost. I am choosing to be grateful that these doctors are excessive in care rather than negligent, but if something of this nature arises again, I hope it is dealt with a bit more effectively and efficiently. The emotional strain alone that could have been avoided, let alone the wasted time, makes me sick.

But, it is over, and I am well enough. The taper of my steroids continues, and I appear to be tolerating it just fine, which means it will keep going at a fairly steady pace, thank goodness. Some days I actually feel a little bit of strength coming back into my legs and arms and I just rejoice in the smallest feeling of power. It will come. I made dinner for the first time since this all started on Wednesday and it was empowering to do such a simple thing, and so fun to let my little girl help me. We made sloppy joes and she created the sauce all on her own. She didn't end up liking it, but it was actually quite good, ha, ha, ha. Tomorrow we head back to Idaho to finish cleaning up the trailer and to store a few last items. Hopefully we get it sold here in the next couple of weeks. I am just looking forward to some productive days, and some hospital-free days. And, hopefully, our apartment opens in the next week or so, and we can finally get all settled. All good things. Thank you Father for getting us through the past few days, for letting everything be alright, and for brighter days on the horizon. I hope everyone has a blessed night.

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