This 30-something's journey with Cystic Fibrosis, Lynch Syndrome, CFRD and the Lung Transplant process
Wednesday, January 29, 2014
In the Process of Processing
I met with the pancreatic surgeon yesterday and my CF doctor today. There is a lot of information to talk about. But I need some time to process it all. Once I do I will post an update.
Labels:
appointments,
cancer,
CF,
doctors,
infections,
Lynch Syndrome,
Pancreas,
surgery,
transplant
Sunday, January 19, 2014
Tobi Podhaler
I started the pod haler on Friday. So far it hasn't been awful to use. I only have a 7 day trial so I won't get the full 28 day dosing, but we are doing it to see how my lungs react to it. I have a horrible reaction to inhaled antibiotics. Severe bronchi spasms. Hate them. So far nothing serious like that but its only been 3 doses. The first night, Friday night, I had quite a few suffocation dreams and P said I was moaning a lot in my sleep. So last night I upped my O2 from 1.5L to 2.5L and it seems to have worked.
Saturday morning I also woke up with a sore throat. But that could be from the inhaled meds. Or so I thought. Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm. Looks like a cold. Fabulous.
I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me. Or didn't. I also have an appointment with a pancreatic surgeon on the 28th. My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas. She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst. So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed. So why wait? I need this bad boy removed asap. That is something I will discuss with the surgeon on the 28th.
So until the 28th my lovely blog readers...
Saturday morning I also woke up with a sore throat. But that could be from the inhaled meds. Or so I thought. Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm. Looks like a cold. Fabulous.
I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me. Or didn't. I also have an appointment with a pancreatic surgeon on the 28th. My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas. She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst. So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed. So why wait? I need this bad boy removed asap. That is something I will discuss with the surgeon on the 28th.
So until the 28th my lovely blog readers...
Labels:
appointments,
cancer,
Lynch Syndrome,
O2,
Pancreas,
PodHaler,
surgery,
Tobi,
transplant
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