Today was originally a regular follow up but became an IV check up. All looks good. My weight is down a little from all the antibiotics wreaking havoc on my gut. My FEV1 was down a smidge to 34%/.98L but still around my baseline. I also had a dexa scan (bone density). I have a dexa every 2 years to check my bone health. In 2016 my scan showed osteopenia which is a step before osteoporosis. It just means that my bones are a little weak. With CF I don’t absorb nutrients normally because of my bad pancreas therefore I have to take vitamin and calcium supplements. Continue reading
Tag Archives: feelings
Depression really sucks
I am officially off the Effexor and it has not been easy. I am experiencing what are called “brain zaps.” It is really like your brain goes “bzzz zzzz zzz.” It is very annoying and makes me want to scream. My body is sore. The commercials that say “depression hurts” are the truth. It doesn’t help right now that I am on Levaquin that causes joint and muscle pain. It’s a double whammy. Continue reading
Life update
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
Update and depression talk
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
Life update
I had a CF clinic check up yesterday and all is good. My lung functions are up 3% to 36% from 33%. They said I sounded good and looked good. My BMI is great at 24, yes I have some extra weight to help fight off infection. When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection. Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess. If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading
Joy
Where has my joy gone? Where is the happy-go-lucky Shannon that we are all used to? Losing my mom seems to have taken my joy away on top of my CF progressing. I had a good cry fest over our trip to KC over Spring Break. Maybe it was because I couldn’t see my mom while there as usual. Maybe it’s because I’m just a wimp and got home sick within days of being in KC. I like the comfort of home where all of my medical stuff is so I have the things I need. Packing with all the medical stuff is a pain in rear. The anxiety of “did I remember everything.” I forgot one of my inhaled meds this trip, ugh. We were gone 10 days. I defiantly could tell a difference not having it but I made it through. Continue reading
Friends and Family
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
CF clinic check up
I spent the day at the hospital with 2 different appointments. First up was my CF clinic check up from my 21 day course of IVs. My main complaint today was the continued pain in my right side. My appointment was at 9:30am and I was finished at 12pm. A lot of people complain about waiting at doctors offices. I, on the other hand, am used to it. It is par for the course when you have CF (or any other chronic illness). I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn. My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor. I am now a professional “waiter” by this stage in my life. Continue reading
21 days down…
IV antibiotic update: Last Thursday (the 1st) I had my regular labs drawn. I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2. That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys. We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9! It is better to stop it before it gets to bad. I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range. I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen. Continue reading
Progression…may as well be a curse word
(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
CF Happens 