Friday, April 25, 2014


You know you've been in the hospital a lot when you are being wheeled onto the floor and the nursing staff, aides and everyone you see remembers you! Every Nurse I had yesterday after being admitted again Wednesday evening remembered me from not only last month when I was here for a week, but all the way back to December when I was here for 8 days! That's something. Not sure what - but something.

I think it's a good sign that they take their jobs seriously and actually care about their patients. Either that or I just made one heck of an impression. Which again, I'm not entirely sure is a good thing but I'll choose good.

My need for a lung transplant is ever present and as I've Blogged recently, I've been waiting to hear back from the second hospital about whether they will take my case. I wrote that the doctor was on the fence but didn't say no but wouldn't say yes. He wanted to take my case to the entire transplant team and discuss it. So I waited. It took longer than expected and SLOWLY the weeks ticked by while I waited to hear what they would say.

So finally last Friday - late - the call came. The biggest obstacle to having a transplant is getting my dose of Prednisone reduced. I am on a very high dose to keep me stable (60mg) and no transplant patient will be considered (so my transplant doctor tells me) for transplant surgery until they can step your dose down to 10mg for a significant period of time prior to surgery. We've tried 3 times and every time we try, my condition worsens and I land in the hospital. But the call from the transplant hospital said they had an idea and wanted to admit me to attempt to step me down in a medically controlled hospital situation. So I agreed. But there were delays again and by then I was having more trouble breathing and landed back in my hospital on Wednesday evening. Which is where I am now.

The good news is yesterday the transplant hospital spoke with my doctor and said they will still do the testing and transfer there to do it. We were optimistic yesterday morning that I would get transferred yesterday. But then I was told they don't have a bed for me. So here I am waiting - still.

Sleeping with all these meds has been very hard to come by and Wednesday night I didn't fall asleep until 4AM. Last night I actually fell asleep at 10PM and slept until 3:30AM but my IC bladder had other ideas, woke me up and then I could not fall back asleep. Then shortly thereafter, at 4:30AM I was visited by the nurse with meds and the aide to take vitals and blood. So now I am wide awake still and it's after pushing close to 6AM. Guess I'm not falling back asleep tonight.

But here's the part I love! So there's even an IC component to my post today from my hospital stay. I had this lovely young nurse all afternoon and at one point we were talking about all my health issues and she knew what IC is - which is, as we know - rare. I asked her how she knew about it. She said her mother who is also a nurse has IC and sees my same doctor, who she had seen visiting me today (YES, my IC doctor found out I am in the hospital and came to visit me!). So I turned into IC Advocate mode and gave her info on the ICA website, ICA Facebook page and the name and email of my LOCAL Support Group Leader and suggested she contact her to see about joining our Local Support Group. She took all the information down and seemed truly grateful and that she would pass it along to her Mom. I hope she does. I then called my Group Leader and told her about it! It felt good to be doing some IC Advocacy again and try to help someone and not think of my lungs for a change. 
I may be down, but I guess I'm not "out" yet. Still fighting for IC patients whenever I can!
In the meantime, I wait for transport to the transplant hospital surrounded by all these familiar faces working so hard to take care of me. I am grateful for their kindness and the fact they remember me. It makes having to be in the hospital just a tiny bit more palatable. 
But I really must stop coming here. I know my way around and it seems, a lot of staff, better than a patient should. But if it's one thing all these hospitals stays CAN and should teach you, it's how to be your own best advocate, be proactive, ask questions and don't be afraid to feel silly doing so. 
So, here's to getting transferred today sometime. Let's get this show on the road and see how many new "friends" I can make at another hospital!

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