I now understand why my mom slept all the time near the end of her life. No I’m not saying I’m at the end, don’t worry. She would have a good day and be able to hang and do a bunch of things then the next day she would sleep pretty much all day. She may have even needed 2 days of recovery depending on what she had going on. I’m sure I have written about this before but the reason I am writing about it now is because we had a double date last night for dinner and the Dan + Shay concert. Before that I was able to go to a very good friends promotion ceremony which was about 2 hours long with the ceremony and the party after. My busy day started at about 12pm with getting ready and we got home around 11pm. I was so very tired when we got home that I wanted to just go to bed but that’s not possible, I have to do a breathing treatment first. Continue reading
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
The first bit of news is that my dad is here to visit for a week…yay!!! He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them. Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha
Today was a good clinic day. First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick. I have been having good days and bad days as per my normal so I was curious how my appointment would go today. Continue reading
WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. 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
This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.
If you would like to donate we would greatly appreciated it.
Thank you to you all for all of your love and support!!
Until next time….