Friday, August 12, 2011

CF DR update



So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.

3 comments:

Jamie said...

I know exactly how you feel. I remember being where you are now. It's tough, but I found most of the time I found the strength to be happy. . .and I gave myself the time I needed to cry. I cried a lot, but I am sure I smiled a million times more than I ever cried :) best wishes to you on your transplant journey! I hope you get new lungs soon!!
~Jamie

niki36 said...

Thinking of you always cyster. I may not know what being on the list is like, but I certainly know what it is like to have your health be uncertain. I had pneumonia last winter and truly didn't think I was going to leave the hospital. I was on oxygen and needed help just walking to the bathroom. I know what I went thru is obviously nothing in comparison, but I think the advice Jamie posted is great. You are a positive strong person, but you should allow yourself time to cry and deal with REAL emotions. I hate nothing more than when Rob just tells me "everything is going to be okay." No one knows that for sure and sometimes you just need to talk about the what-ifs and have some one listen. The important thing is that after you get it out, you go back to your positive outlook & keep fighting. You are such an inspiration and I can already picture you on the other side of transplant breathing easy!!

LE said...

Hang in there! It happens so quickly when it is time you will not have time to worry...I will be praying for you girl that everything will work out! Just think how nice it will be to be able to breathe easy again...wheew! XOXO
ps: I'm back on FB but I didn't know your last name...if you get bored look me up so we can keep in touch!