<<-- Is it me or does this "lung" look super perverted??!! hahaha (we're making the best of our time in waiting rooms)
This past Friday I had a full day of appointments that was scheduled by my transplant team at Columbia medical center in order to check and update all of my levels and keep me up to date on my listing status etc. Johnny was taking me for the day so we packed up a lunchbox and headed to our fun filled day of sitting in waiting room after waiting room. Since my CF center is also at Columbia and I have been having problems with my intestines and digestion issues for the past week (DIOS), I also squeezed in an appointment with my CF dietitian before all the blood work and exams.
Once we arrived we did the usual shuffle for a carrier for the hospital oxygen tank... however I didn't mind that much this time because I had my big strong husband to carry it! Although I don't think he enjoyed it because two days later I received my own cart at the door (amazon) compliments of Johnny.
My first appointment was with the Dietitian which went well because despite my lung function decline and intestinal issues, I still house food like a champ so I have been able to remain at a good BMI. However, we decided that since I have been having such uncomfortable stomach pains, bloating and constipation, it would help to try a different pancreatic enzyme. I have been on the same pancreatic enzymes for 31 years, but I have tried avoiding certain foods and I was still feeling the same uncomfortable issues so I think it was just time for a change. The new enzyme has added Bicarbonate buffer as well so it is supposed to help with digestion by surrounding area of the enzyme and increasing the PH from the stomach to the intestines... FUN DIETITIAN FACT- in healthy individuals with functioning pancreas, this all happens in the body when you eat as hydrochloric acid and bicarbonate adjust PH to correct levels to maximize breakdown and absorption of nutrients with the help of pancreatic enzymes.
Since I was already at the CF clinic and I had some time before my next appointment I decided to get my PFT (pulmonary function test) upstairs in hopes that maybe I would wait less downstairs in the more crowded waiting room. I have been off IVS for a little over 3 months and I have started coughing more at night so I had a feeling my numbers were going to be down. And they were. My FEV1 went from a 25 in July to a 22 now. It doesn't seem like a big jump but the lower my results get, the more I feel every bit and it is just scary to think about how low they will get before I get a call. I am doing everything I can to keep my body and mind strong so I wont focus on that number right now. Next I had to perform a 6 minute walk test which is basically just testing how far I can walk without stopping to rest in 6 minutes... and despite having lung decline, I've still been able to keep my muscles strong enough by exercising as much as I can. I was able to almost match my distance from 3 months ago. Yay! :) The next thing I had to get was my ABG (arterial blood gas) drawn. I normally don't mind being a pin cushion but the ABG is from an artery so they give you a lidocaine shot which in my opinion is just more annoying than pain... haha.. maybe I have a high pain tolerance but I just hate feeling pins and needles in my hand for the next few hours. Anyway, the results are used to determine how well your lungs are able to move oxygen into the blood and remove carbon dioxide from the blood. And as I already know...my lungs have had some trouble with oxygen for some time now, however now my CO2 levels are also rising. It Kinda feels like my lungs just went on a vacation and forget they had to come back and actually work to pay the rent and survive like the rest of my organs. After the ABG I had to go upstairs to a different waiting room to get more blood drawn and give a ton of sputum samples (basically just spitting up tons of mucus in tiny cups- super attractive).
After a long morning Johnny got to eat our lunch in the waiting room and do some more waiting for my last appointment of the day with my transplant Dr. The one positive thing that came from the waiting room was that we were able to meet and discuss illnesses with a friendly couple from Utah. They came all the way to NYC to meet a doctor that specializes in a rare surgery she requires. As she was telling me her story I was in awe of how strong this woman was to have an illness then go through Cancer and come out the other end.. and yet to the naked eye this woman looked completely healthy. It was a reminder that you really cant make assumptions based on looks... and I'm sure many people didn't realize I was "sick" (that is until I got stuck with an oxygen leash and started a blog)
During my final the appointment we discussed what has been going on for the last 3 months and went over my results. We are all confident that I am doing everything I can to stay as active as I can and strong as I can but the decline in numbers is still alarming and unfortunately my center has at least 5-6 people that are above me who need double lungs on the list right now and some are living in the hospital. In a way, I am very grateful that I am well enough to live at home and still get out of the house for short periods but the wait is still concerning. WINTER IS COMING!! Haha (game of thrones nerd) and Winter is never a good health season for me and my numbers usually decline so my focus right now is to just hold on and pray that those less fortunate than me will get their call soon and my day will come when its supposed to. But since my doctor wants to be on the proactive side of this, and we do as well, we decided to give the OK to send my paperwork over to UPENN as an option to double list. She doesn't think they will have any reason to deny me so now we just wait for the call from UPENN to see if they will add me to their transplant list as well. This will give me more of a chance to get transplanted sooner because it will broaden the search for a pair of donor lungs. As I fell asleep at night I kept trying to quiet my mind with the cheesy but appropriate quote "All good comes to those that wait".