Wednesday, February 19, 2014

Jail Break Time...

I wish I was writing this post from my apartment or school or anywhere else really, but I'm still (wait for it...) in the hospital! =\

I needed to be here last night, so I'm not really complaining but just ready to go home. After writing the post yesterday morning, I had an up and down day. At the time I was going about 3-3 1/2 hours in between breathing treatments. They are scheduled every 4 hours but I can get them as needed every 2. I guess it was good that I was going longer than 2 hours but still couldn't quite get past that 3-3 1/2 hour mark without having major issues.

I finally saw the doctors about 2 or 2:30 yesterday afternoon. Since being admitted my experiences with my nurses have been fantastic. They have all been very helpful and caring without constantly hovering. But I still hadn't seen a doctor, so I was a bit nervous (if you want to know why, read my post from yesterday...see VISIT #3). Thankfully I had good experiences with both doctors!

I saw the pulmonologist first who was great! He listened to what was going on and wanted to hear what I had to say about how I was feeling and what was going on. He agreed that it sounded like this could have been triggered by a MCAS reaction on Friday/Saturday that caused my asthma symptoms. He also said that my asthma in general is likely to be atypical, meaning that I don't present with normal symptoms. Why am I not surprised?? The best part of talking with him was finding out that there was another medication I could try in my nebulizer. Maybe 7-8 years ago I was on an inhaler for my asthma that was cromolyn sodium (yep, same thing I'm not taking for my GP). It was the best medication I had ever been on and controlled my asthma symptoms so well. I had to stop taking it because it was taken off the market because one of the ingredients was apparently damaging the ozone layer...who cares about all the patients who require that medicine to breathe, right?!?! Anyway, the doctor I saw yesterday said that cromolyn sodium is back on the market for nebulizers as a generic! So he went ahead and prescribed that for me to start later yesterday evening. He originally said he would allow me to make the call when I felt ready to go home, and that if I felt comfortable leaving with prescriptions to manage things at home that would be fine. Before he left, though, he decided to have me do my peak flows to see how my breathing was doing. And those 3 breaths are why I'm still in the hospital today...LAME!! That's exactly how I performed on my peak flows...I was not even 40% of my predicted normal values. The doctor said that research and experience has shown that if they send someone home with peak flows less than 60% of the patients predicted values, there is typically a relapse within 48 hours. So my fate was sealed and I settled in for another night in the hospital...

Like I said earlier, I had been going about 3-3 1/2 hours between treatments, and in between I was doing okay. Still coughing, still kinda sore, but definitely improved from when I was admitted. My mom had been with me the whole time and decided to run over to the YMCA to workout for a bit and to get a shower. She left around 3 or so and I figured I would be fine because I had been doing better and we had just finished talking with the doctor who had been so good. Unfortunately, about 3:30 I started struggling A LOT. It was right about 3 1/2 hours since my last treatment... I wasn't able to get my nurse because I couldn't talk so when she walked by she couldn't hear me. There was also a lot going on around the floor so pushing my call button didn't do anything either. Finally, about 5pm I was able to get my next treatment which was now 5 hours after my previous one. I was seriously not doing well...BUT it was good because I started the cromolyn sodium that the doctor had prescribed.

I saw the second doctor later that night about 8pm. He was good also! After my experiences the day before I thought it was too much to hope for having just one good doctor, but both of my doctors have been great. I saw his PA earlier in the day but she didn't really seem to give us much info. She was very nice, but I didn't feel like she really had an idea of what was going on...this doctor was good, though. He listened liked the other doctor and asked me some questions. He actually said I sounded pretty bad to him with all my coughing, but since he hadn't heard what I was like when I was admitted, would let me and my mom make the call when I felt comfortable leaving. He did say the pulmonologist would have the final say based on my peak flows and breathing, though. One of the biggest things I appreciated about both these doctors was that they treated me like an individual and not just a number. They were willing to listen to me and realized that I am not a typical patient with asthma and wanted to work with me to get me better. They didn't give me a checklist of what we would do to fix things before hearing from me what was going on. I have a lot of issues, I know that, and both these doctors were willing to see that and work with me to treat ME and not the stereotypical asthma flare. Yay for positive doctor experiences! It gives me hope that I will be able to find doctors that are willing to help me where I am instead of trying to shove me into a neat little box that I don't fit into.

Anyway, I would say that I definitely started to see a pretty big improvement after starting the cromolyn sodium, especially after the 2nd dose around 8:30pm. I was able to go 4 hours between the last cromolyn treatment at 8:30 and my next one! The over night treatments were only albuterol so by this morning I was struggling a bit again and back to about 3-3 1/2 hours before needing the next treatment. I got more cromolyn sodium this morning and I'm feeling pretty good right now. So here's to hoping I get to go home today! We will see what my peak flows look like later probably, but for now I'm definitely coughing less and feeling more comfortable breathing than I have since I was admitted.

Just like at seder every year we end with "Next year in Jerusalem," I'm going to end this with "Next blog post from my apartment!"

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