People ask or want to know when I will be better. That is a great question. I have not felt great for a good while now, 2-3 months maybe. I was in the hospital for 9 days and you would think I would come out better. Being released from the hospital doesn’t mean I’m fixed by any means it means hopefully we have things situated and are heading in the right direction to being better. I know some people don’t understand why I’m not better after being in the hospital and trust me I get it. It is very frustrating to not get noticeably/significantly better after IVs and/or an inpatient stay when that is the goal.
My husband is being diligent about keeping me away from germs and not overdoing things. The teenager had a basketball game yesterday so I went to that and we kept to ourselves. haha Our friends were having a Christmas party so we went by to say hi since these folks are such a great support to us. The husband insisted on me wearing a mask especially around the kids. We didn’t stay for long but I’m glad we were able to say hi.
Last night I tried a little cocktail of pain med for the lung pain, splash of Delsym (cough suppressant, it is not good to use it often but I needed a break) and Chloraseptic spray for the throat to attempt more sleep. I managed to stay asleep until 4:30am which is longer than the 2:30am the night before. My chest muscles are so sore from coughing so much. I am finally past trying to push past the wheeze/rattle in order to cough something loose. I have finally started coughing stuff up again. Today involved a lot of cat naps, breathing treatments and shooting up!
Now on to the next order of business… haha I know I have mentioned the scary word “transplant” a few more times lately than I have ever in the past. I just want to make sure that everyone knows that I am NOT close to a transplant at this very moment. Transplant is still a ways down the road. The sicker I get and the longer it takes me to “get better” the more it becomes my reality. Last time my lung functions were checked I was at 53% (10/22/15). I didn’t do any lung functions while in the hospital which is new to me. They have the point view of that it is obvious that I am having an lung exacerbation right now so they won’t be good or an accurate portrayal of how my lungs are doing. My old clinic would have me do lung functions day 1 or pre-admission to see where I’m sitting at and what work needs to be done. Then I would be retested once or twice while inpatient to see if there is improvement. I am still learning how this clinic does things and they are still learning how I do things.
In general, transplant talks usually start when someone is in the mid to upper 30 percents (consistently staying in the 30’s). My husband and I know that a lung transplant is in the future and we know that is the route we want to take. We are doing our best with my care to keep a lung transplant far far away.
The “lung fund” Shannonigans Fundraiser with the car window stickers is one way to prepare for our future. Yes our medical insurance will pay for the transplant but there will be extra expenses that come out of nowhere so we want to be prepared in any way possible. My husband will have to be my full-time caretaker and depending on where we are living compared to where I will be listed for transplant we may have to relocate. Any and all funds raised are being put in a savings account for the future. We have had 65 car stickers pre-ordered!! You all are awesome!! I will be ordering extras so I have them on hand to sell whenever asked for them. Of course I am thinking ahead to the next Cornhole Tournament and having them on hand for sale there as well!!
So to recap…I am NOT close to a transplant right now, we are just being proactive for the future. We aren’t out of options on treatment however I am a tricky case because I have a long list of medicine allergies compared to what the lab shows will work on my specific bugs. The drug sensitivities change with every sputum culture I give so things are always changing. On top of all of the CF lung stuff I have, I have asthma and very sensitive airways which doesn’t help in the treatment.
Thank you so much everyone for all of your love and support!!
Until next time…