I spent the day at the hospital with 2 different appointments. First up was my CF clinic check up from my 21 day course of IVs. My main complaint today was the continued pain in my right side. My appointment was at 9:30am and I was finished at 12pm. A lot of people complain about waiting at doctors offices. I, on the other hand, am used to it. It is par for the course when you have CF (or any other chronic illness). I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn. My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor. I am now a professional “waiter” by this stage in my life.
My lung function was pretty much the same as before, so staying stable for the time being. (FEV1 1.07L/35%) My weight is good and stable as well. Now, about this pain in my side. We are going to do a MRI of my thoracic spine to see if there are any bulging discs or pinched nerves, etc. I’m NOT looking forward to the whole laying down part of the MRI. Do you know me? I cough…all the time and laying down is the worst! I just hope that I don’t knock myself out on the MRI machine if I have a coughing fit. I don’t cough daintily, it is with force! We also talked about pulmonary rehab. BOOOOOO! I always tell them that it seems counter productive knowing I can’t walk with out getting short of breath and you are now going to sign me up to walk on a stupid treadmill knowing I can’t breathe!? I know it is much more than that and I need to do it but I am not thrilled about doing it multiple times a week. I am entitled to my hissy fit, dang it. The Amy Whinehouse song is in my head….’They tried to make me go to rehab but I said, ‘No, no, no.’ I will suck it up when it comes time to start rehab though. I know it is the best thing to do. I have to do it as part of my transplant prep anyway.
I told my doctor and nurse that it is just hard to know that I will be sicker than I am at this very moment at some point in the future, most likely closer than I want. It is a mind trip to know that you are sick and will get sicker and there is nothing you can do. Thank you very much progression. Then you add in the whole, “you have to get sicker to get a transplant” thing and it makes you want to scream. It’s a no win situation. I never thought I would see lung functions in the 30’s this soon in my life but here I am. I know I will never get back to the 50’s unless I have a transplant and in that case the sky the limit. I used to think “how in the world do people function with lung functions in the 30’s?” Well let me tell you how they function….not well. haha I am now that spokes person. I do the best I can with what I have. I do as much as I can and then have to rest/nap/take a break. It is frustrating to say the least. Last night I was trying to talk to my husband after walking into the room and doing something and I couldn’t catch my breath for the life of me. He said, “I’ll wait until you can actually talk.” It’s a good thing he understands. It could work for his benefit, as in I can’t yell at him because I don’t have enough air. haha I don’t yell so it’s a good thing.
My second appointment was for my yearly gynecological visit. Nothing special there. Everything looks good.
Until next time…