My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha
I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.
Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.
Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.
I just had a telehealth appointment with my CF doctor to follow up after my hospital stay. My lung functions on my home spirometer were 32% again which is the same as they were at the end of my 14 day course of IVs and steroids. I told him how thankful I was for him being reachable/available while he was sitting on the beach in St. Lucia while I was in the hospital. It made a world of difference because he was able to tell the pulmonary doctor that was on service in the hospital what I needed and he confirmed that I am in fact a compliant patient and would do everything I was supposed to at home. I told him I owe him a gift. Haha. We decided that this admission was more so my asthma acting up and then a CF exacerbation and the parainfluenza as a side note. Hence the reason I needed high doses of steroids to open my lungs up.
All is going well since finishing the 14 day course of IV antibiotics and the prednisone taper. I was needing breathing treatments every 4-5 hours when I got home from the hospital. I’m now able to go longer between treatments. I’m averaging 3 treatments a day unless I need an extra one. I’m basically back to my baseline with my lung functions between 30-35% and treatment need decreased and not as short of breath when doing nothing.
Wednesday I received my loading dose of Dupixent, the asthma medicine. We are hoping the Dupixent is going to reduce the inflammation in my airways and decrease my wheezing and shortness of breath. My allergy doc called my CF doctor to make sure he was on board with giving me Dupixent due to me having CF. He told her that he was on board and he had quite a few CF patients on it. I’m thankful that I have doctors that are willing to communicate about my care. I will now give myself the Dupixent injection every 2 weeks. It could take a few doses to see improvement. Here’s to hoping it works!
I’m going home!!! I just signed my walking papers aka discharge paperwork. I’m doing a dose of cefapime right now since it was due. It only takes 30 minutes. At home it is just an IV push which means I push it over 20 minutes (it comes in a big syringe). The hubs is heading here to pick me up. He’ll swing through and I’ll go down, get in and be on my way!
I didn’t know if I would be able to go home today because one of the doctors I saw said they usually want another set of lung functions after 7 days. I had them last on Sunday morning so I kinda bargained with him to do them Friday morning. He contacted my CF doctor (who’s on vacation) and my CF doctor said he was fine with me going home early! Well isn’t he the best! I might just have to get him a gift to say thanks. I am able to use my home spirometer if they want updated numbers. I have an appointment for labs on Tuesday morning. I usually get labs once a week when I’m on IVs unless I’m on colistin or other antibiotics that are hard on my kidneys. If I’m on any of those antibiotics then I get labs twice a week.
They are delivering my IVs to my house so I don’t have to wait at the hospital for them. I’m set to be done with home IVs on Saturday the 7th which will be a total of 14 days of IVs. We can always reevaluate then if I feel like I need another week. I’m hoping I’m good to go on Saturday though. I’ve been known to need 3 weeks of IVs, so I’m hoping not this time. I am also doing oral prednisone tapering from 40mg for 3 days to 20mg for 3 days then done.
I’m not going home on oxygen thankfully. My oxygen sats haven’t been dropping as low when I don’t have it on while going to the bathroom or getting cleaned up. I will be taking it easy when I get home because recovering from the parainfluenza, slight pneumonia (really only means an infection was able to be seen on the CT) and a CF exacerbation will take some time. I don’t have anything planned for the next week except for labs on Tuesday so all is good. I’ll update if/when there is anything to update.
The steroid debacle of not getting what I wanted/needed has finally come to an end. I just received a 80mg dose of solumedrol (IV steroid). I received 2 doses of 40mg solumedrol before this. The attending pulmonary doctor that saw me this morning agreed to do the 80mg. Also I looked in my patient portal for my hospital and saw that I don’t have influenza A, I actually have a parainfluenza. It’s still the flu either way. I was also able to see the reports for my chest X-ray and chest CT. My X-ray showed no changes. My CT speed showed a spot of pneumonia. That only means I have an active infection so don’t freak out. It also mentioned bronchiectasis which is narrowing of the airways which I’ve had for awhile. It didn’t mention any progression.
I’m still feeling the same, no better. I’m hoping the solumedrol will kick in and help in the next day or so. It usually takes a few days to start working. Then it takes maybe 3 days or so of being on the solumedrol to be able to go to a lower dose. I’ve been continuing the IV cefapime antibiotic every 8 hours.
Today was pretty uneventful really. I did manage a nap with only 2 interruptions. I did get more sleep last night as well such was nice. I’m in the hospital so that means no sleep. It’s hard because you are supposed to be able to rest to get better but they are always in and out all day and night. I do ask that they don’t do vitals overnight so I can possibly get some sleep. But things start bright and early around 5:30am or so with drawing labs. I’m still hoping I can be out of here by Friday so I don’t have to spend New Year’s in the hospital. That would be no fun at all. I will be going home on IV antibiotics like usual so it will be at least 2 full weeks of cefapime. I will also be on a prednisone taper. I think that’s all for the update tonight. Thank you for all of your love, prayers and support. I appreciate it very much.
2017 was a rough year. It had its ups and downs. In January I had transplant clinic which was good. I’m holding steady according to them. I see them, at Barnes Jewish in St. Louis, once a year to check me out. January also brought the 1st anniversary of my moms passing which was hard. I still miss her every day. The hole her death put in my heart will never be filled. I was on IVs in February, April, May, July, August which lead to being in the hospital because of my creatinine (kidney level) being elevated again. I had my gallbladder removed in September and did a week of IVs after surgery as a precaution. More IVs in November and then this whole virus/bronchitis/CF exacerbation or whatever it is in December that put me in the hospital for a few days. Man that’s a lot of IVs! Continue reading →
I haven’t been feeling great for at least a week if not more. I kept holding off calling/emailing my CF team because I was hoping it would “pass,” yeah I’m just a little stubborn. I sent the “white flag” email on Sunday. Some would like to call it the “Sunday surrender.” haha. Continue reading →
Hello all! I have had many inquiries for Shannonigan gear, with a lot of them being about zipper hoodies. Lo and behold the sale is open and has zipper hoodies!!! The sale is open until November 26th!! Don’t wait until the last day, get them while it is fresh on your mind. Here is the link for the sale! Share it with your friends and family as well.
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 saw my surgeon for my follow-up from gallbladder surgery and everything is good. All healed up! Not having the pain from having a bad gallbladder is great! I’ve known it needed to come out for a while now, I just needed it to finally act up. I told the surgeon the only thing left to take out is my appendix and these crappy lungs…hahaha. Continue reading →
I forgot to update about my pain clinic follow up. Simple appointment really. Scheduled another injection for July 26th and follow up August 10th. It was most likely that the floating nerve didn’t get hit during he block. So we shall try again. Hopefully this one works and I may not need another one. Fingers crossed prayers said!!!!
SHANNONIGANS GEAR UPDATE: Lools like all gear has been delivered! Thank so much to everyone who purchased Shannonigan Strong gear.
CORNHOLE TOURNAMENT UPDATE: As of now we have collected close to $1,000 worth of items to be raffled off with more to come. I am so blessed with the friends and family I have who have worked hard at getting donations for the tournament.
I want to put out a challenge to all business owners who follow my blog and Go Fund Me to donate to the Lung Fund! Let see how much we can raise in a week from large donations from bigger businesses. Who will take my challenge??
I am spending some time with my sister, nieces and nephew this week at the lake which is nice. Sister time!!!!!