My CF nurse called today to check in and see if I needed another week of IV antibiotics. I told her I’m as good as think I’ll get and that another week of IVs won’t do anything. My doctor wanted me to do home spirometry (lung functions) and to send it in so he can see it. My FEV1 was 32%! So I’m back up to my baseline between 30-35%. My last days dose of IVs will be my 10pm dose tomorrow night. I can then deaccess my port and be free!
I’m not as tight or wheezy as even I went into the hospital. I was up at 4am wheezing so I did a breathing treatment and stayed up until my 6am dose of IVs. I’m also not as short of breath so I’ll take it. I’ve been able to do more around the house, like cleaning. I do still have to take breaks like I usually do but I’m about to push through.
I’ve had some people ask about lung transplant and where that stands with having my lung function having been down to 21%. I’m still not ready for transplant yet. To be reevaluated for transplant, my lung functions would have to be 29% or under (steadily) along with other things like being resistant to IV antibiotics meaning they are having no effect on my lungs. IV antibiotics already are not as effective as they used to be when I was younger. I don’t bounce back like I used to. There are still different antibiotic combos they they can try for me with the hope they will help. We aren’t out of options quite yet.
Like I said before, you learn to adapt to lower lung function as it slowly goes down. The reason I noticed such a difference in my breathing when I went to the hospital was because it had dropped like 12% rather quickly. Yes, new lungs seem like a solution but there’s more to it than just getting new lungs. It’s a lot of hard work getting listed and enduring transplant. I will cross that bridge when the time comes. I’m still not mentally ready for transplant. It is so scary! It’s a journey for sure. Yes, I would get ready real quick if I declined quickly and had to be listed sooner than I would like. There are a lot of moving parts that have to be figured out when I do list for transplant. We will figure it all out in due time though. I know I have a lot of support with my family and friends. I will make it!
I have a telehealth appointment with my CF doctor on Friday the 20th for a check up after finishing IVs. I will do lung functions again and send them in the day before my appointment for his reference. I’ll update after that appointment.
Oh, and I got word that I was approved for Dupixent, the asthma medicine. I have an appointment with the allergy doc/nurse on the 18th to do my first injection in the office so they can teach me how to do it. The initial dose is 2 injections and then it’s 1 injection every 2 weeks. It’s in a pen injection like an epi pen is. I’m really hoping this helps my asthma and I won’t get as short of breath. We shall see.
I turned 40 on Saturday the 1st!!! Go me for hitting a milestone in life with CF. When I was born the life expectancy was 12. It is now 37.5, I believe. So to say it’s a milestone that I made it to 40 is maybe an understatement. I am just so excited to be a 40 year old who happens to have CF and is still kicking butt and taking names! Continue reading →
I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense. Continue reading →
I guess I should update you all since my stay in “lock up” (aka the hospital). My creatinine (kidney level) is finally back down in normal range. It was .91 when I last had my blood drawn at CF clinic last Thursday. Yay for that. Even more yay, I can start to take ibuprofen, in moderation, for my aches and pains since Tylenol does nothing for me. Continue reading →
What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind. Friends and family have been on my heart and mind for a while. The sicker that I get the more I think about them and what they may be feeling. Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge my CF or even remember. It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading →
(Kind of a ramble…sorry) It is day 11 of IV antibiotics. I felt horrible over Thanksgiving and the weekend. My husband was sick last Monday and Tuesday as well. We were no fun last week, that’s for sure. We had Thanksgiving lunch in our PJs and watched Netflix and football. My husband is back to his healthy self, thank goodness. When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday. We didn’t need to subject my sister, nieces and nephew to all the germs in our house. We sure missed having them here for the few days. The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon. That broke my heart. Of course, I am now thinking of when we can get a visit arranged ASAP. She said she wants to come here for her birthday. I agreed that was a great idea! Spring break in Tennessee!! Whoo hoo!!! Continue reading →
When you have a chronic illness waiting is part of life. Waiting to get better, waiting/holding steady or waiting to die. Yep, I said it. It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die. Maybe you could call it “living to die.” Whatever it may be, it is life. Continue reading →
I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha Continue reading →
Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading →