February 2020 was the last time I was on IVs. I would like to think it is Trikafta making the difference. I usually do IVs every 3-5 months so that’s a plus of Trikafta. It makes me attempt to take the bad (weight gain) with the good. Oh I did my lung functions with my home spirometer. My best fev1 was 35%. So basically holding steady which is good. They had dropped a little over the last few weeks but managed to be back to my baseline today of course. Haha
With that said I have been fighting something for a few weeks. I’ve had an increased cough, coughing more stuff up (which is less since Trikafta), more short of breath, been using my oxygen at night to help, wheezy and fatigue. I made the call for IVs. I have a telemed appointment on Thursday with my CF clinic. So I called to see if they wanted to see me or would prescribe IVs without. Thanks to Covid I was about to get things going without being seen but still have me appointment on Thursday to check in. My port is accessed, labs are drawn and a chest X-ray is done. Busy day at the hospital. Now I wait for the home health to deliver my IV supplies. I will be on Zosyn every 6 hours for 2 weeks. Here’s to no sleep!
Mentally I’ve been in a funk. We are coming up on the anniversary of my moms passing, Jan 19. It’s always a tough time reliving it. We are coming up on 5 years. So my depression has been creeping up. I’m trying my best. Yes I’m still seeing a counselor and taking my antidepressants but that’s not a cure all. There are still bad days. I take what I get.
Until next time…
Today I had a check up since I’m not feeling better after 6 days of IV antibiotics. My lung function was down again to .88L/31% FEV1. I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days. I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go. We decided that if I am not better over the weekend I am to call my nurse to be admitted. They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it. There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1. Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter. So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better. However I kinda feel like I am prolonging the inevitable of an admission. Might need the heavy hitters to knock this one out. I’ll update next week.
Until next time…
When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%. Continue reading
I went to see my CF doctor today on national doctor day…haha. I was there for a sick visit not to wish him a happy day. I have been coughing more, especially at night which sucks. I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend. Continue reading
“I will focus on what I CAN do and not what I cannot do.” – Shannon
I had an epiphany sometime this week and the above statement came to mind. My counselor asked me what brought it on and I said I have no idea! The negative thoughts aren’t/weren’t getting me anywhere so I figured I needed to try something new. So with that said, I’m trying to have a better outlook. Enough from the pitty party host. I need to change my way of thinking. 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
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. 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
/shannonigansToday I had my third set of intercostal blocks in my back for the rib pain. As you know, I have a broken rib that is taking forever to heal due to the fact that I can’t take a break from breathing, coughing or sneezing to give it time to heal. The pain is better than when it first began back in February, 5 and a half months ago so for that I’m glad but there is still a little bit to go to be pain free. Yes, I hope to be pain free. Yes, I’m asking for a lot. Yes, I’m stubborn. hahaha. I have a follow up appointment with the pain clinic August 10th to talk about this set injections hoping to be done with the pain clinic. Continue reading