I was told at my previous appointment with the transplant team that once my last exam was finished my case would be presented before a committee of doctors and team members on a board and they would generate something called an allocation score, which determines where a person is placed on the transplant list. The higher the score, the quicker you receive new organs. As much as I would love a high score, it also means the patient is usually a lot sicker. I have had three previous meetings for the past year in a half with the transplant team and at each appointment my doctor explained that although my numbers were declining and lungs were getting worse, they were not low enough to be put on the list yet...unfortunately with cystic fibrosis she explained that many patients get “under scored” meaning we end up with better scores than older patients with other diseases or disorders so we end up waiting longer for organs. It is not a perfect system and many patients with CF can experience an acute decline and end up dying before receiving new organs. However in efforts to avoid being underscored, my doctor thought it was best to wait until my numbers were low enough that they could predict a high enough allocation score to avoid longer wait times on the list. At my last appointment we decided that since my recent need for oxygen 24/7 combined with my drop in FEV 1% and continued frequent infection rate, it was the right time to finish my tests and get me listed for a new pair of lungs.
Today I was scheduled for the last test that will be evaluated in my case for new lungs. (I will write about previous tests in a different blog entry but for now) I was scheduled for 6 a.m. and I am currently on IV antibiotics so I’m infusing around the clock and was able to get about 3 hrs of sleep after infusing my last IV before my alarm went off at 4 a.m. to get up…. My parents were both bringing me to this appointment today so they arrived bright and early to help pack my Dads car with multiple bags of IV meds, pills,oxygen concentrator and batteries, tubing and chargers for all the devices. My parents live across the street from me and we live about 2 hrs from my center in Manhattan. The best part about going that early in the morning is we hit NO traffic so we made it in great time AND I wasn't tempted to eat since I was so tired.
Once we arrived, we switched from my concentrator to the hospitals oxygen tanks and rolled into the waiting room at the heart center. It’s at this point that I realized that I forgot my mask and of course couldn’t find any around the hospital on the way in. Because I have such CF and such a high infection rate, it’s important to try and stay away from people who are sick and hospitals are usually a breeding ground for germs and sick people… I usually ALWAYS wear my mask in the hospital to avoid catching anything. It’s ok though… the woman checking me in found me a surgical mask from one of the operating rooms ;) After check in they brought me right in to pre-op to get in the glamorous hospital gown, meet the nurses and go over my list of medications for the zillionth time and I give them a urine sample (making sure I’m not pregnant-duh) Finally it’s time for an IV line, the nurse says she is going to put in a line so she can give fluids and sedation. I tell her my port (which is already accessed) can be used for fluids/sedation if they would like instead of putting in another IV access because I am not aneasy stick (my veins are terribly tricky and I have scarring from having multiple PICC lines since I was 15yrs old… at least 20 lines). The nurse checked with the doctor and they said the heart Cath will be performed through the same IV access so they needed a Brachial line placed. So the nurse attempted the first time without success. She was able to get blood but not able to advance the line through. I advised her to try further down on my arm because she was attempted on the same spots that I’ve had multiple lines before… I just had a feeling those weren’t going to work. She sterilized the site then began feeling around with her gloves off… (I’m ok with this as long as you clean again after and return to using gloves… she did not and was about to stick me again) so I asked if she “needed me to grab her gloves” in the nicest way possible. Even though she was defensive, she put gloves back on before getting my IV line in. Unfortunately I can’t tell you how many times I’ve had to remind nurses about sterility and proper sterile procedure especially while working with sick and compromised patients. Needless to say, second attempt was a success and we had a good line in!
Once in the operating room I was told that they are not giving me sedation because it decreases respiratory rate and they try not to give it to patients with compromised lung function if they don't have to. This is Ok with me because it means I’ll be able to leave the hospital sooner!! However once they get halfway up my bracial to my armpit area they are unable to push the line any further and keep getting resistance… after a few tries, some contrast and maneuvering they are able to pass through into my heart but then hit some more resistance further down. The doctor at one point says she may have to come out and start again by going through my groin area because my veins are too narrow and she’s unable to advance. I think she could sense my disappointment because she had one last trick in her sleeve and she tried a different type of line that had a stronger tip which was able to advance all the way in. I was in such relief as I watched it slide through on the screen. :) The whole procedure was done in 45 min and as she read my numbers she sounded surprised. I asked if everything was ok, expecting bad news, but to my surprise she said that everything was very good actually and “your heart is almost as good as normal.”
Best Cinco De mayo gift ever… strong heart!!