A Few Big Days

Thursday is a BIG day.

Tomorrow, my sister and I both have doctors appointments. My sister is heading to see a surgical oncologist to talk about whether or not chemo has shrunk the tumors enough to attempt surgery.  I am so excited and thankful to God to be able to share with you all that my sister’s largest tumors have shrunk by about 20% following 4 chemo treatments!! We are stunned and excited, and we can’t wait to hear what the surgical oncologist says this Thursday. Hopefully, it will be the time to do surgery and get it all out of her body. Then, we can continue with chemo and get her cancer in remission! That’s the goal, and I will be sure to update on our progress!

A picture of me and my sister (maid of honor at  my wedding).

Tomorrow, I also see my CF team. Normally, I don’t consider this a huge appointment.  It’s normal; it’s routine; it’s typical. From the last appointment to now however, my body has gone through a tremendous amount of unusual stress. While I didn’t get physically ill from the stress, I am anxious to see how it impacted my lung function. I’m hoping that my lung function is still in the 80s, but I’m concerned that it won’t be. We’ll just have to see. I also am curious/anxious because (in my own opinion) my lung function determines whether or not we go forward with infertility treatments or not this coming month. If it’s down a decent amount, I will be holding off on the treatments, but if it’s stable or up then we are good to go!

After I get home Thursday afternoon, I begin my prep for my colonscopy as well. I’m not looking forward to the prep, but it’s necessary and I’ll be happy to have the scope out of the way by Friday evening. I’ll blog about it and make sure to take pictures as well.  So, as I go into the day I’m hoping for good news all the way around! I’ll keep you updated 🙂


CF Clinic: February 2012

Yesterday was a long but good day.  I had the earliest appointment I’ve ever had at U of C yesterday.  I ended up having to leave my house by 6 AM to make it to an 8:30 liver ultrasound. Overall, the morning commute wasn’t nearly as bad as we expected. We made it up there by 7:45 and I even got in a little early for my ultrasound! This was great because in order to have my liver ultrasound, I was required to fast for 8 hours, which in turn made me quite crabby.

After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast – I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around.  Following breakfast, we headed up to my CF clinic.  My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM.  I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment.  Here’s an overview of what was said/done:

Lung Function: My FEV1 was surprisingly unchanged since the previous appointment.  Ok, technically it was down 1% but that’s just a normal fluctuation.  Last time it was at 2.74 L which equates to 87%.  This time it was 2.72 L which equates to 86%. I’m definitely thrilled about this result.  Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down.  I will gladly take that number, however!  My FVC was down a bit.  It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time.  I’m not considerably concerned about this change.  A surprising one was my lower airways, my FEF 25-75% number.  Last time it was at 13% but this time it was up to 39%!!  Overall, great numbers.  Also, my docs listened and couldn’t hear a single crackle in my chest.  Very happy about my lung function this time around.

Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall.  I’m putting, and keeping, weight on which in turn makes me healthier.

Changes to my Current Routine: Due to increased heartburn, I’m going to be started on Prilosec.  This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me!  I’m also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma.  Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I’m excited to see how it works! In addition to this, I’m going off of 7% hyper-sal for good, and I’m going to start mixing my own 3%.  If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal.  My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.

Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days.  The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.  Since CF liver disease, or a fatty liver can develop in CF patients, it was important to get the ultrasound done.

Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder – EVERYDAY exercise, that’s my goal!

Clinic Day

Happy Thursday everyone!

I sincerely hope that everyone had a wonderful Thursday and has a very blessed Friday.

Now, to talk about my day up at the clinic.  Today has been one of those days where the rain takes turns between coming down in buckets and lightly misting over everything.  During our time driving up to Chicago and back, it was thankfully mostly misting with only one incidence of bucket-pouring rain.  In addition, the traffic was horrendous. We live about an hour southwest of Chicago, but we spent two hours in the car this morning. Neither rain nor traffic make me very happy when driving, so I was stressed on the way up.  Thankfully, we made it there safely and my doctor was still able to see me.

I went in and immediately was weighed in at 115.6 (two months ago on their scale, I was 113.1, so I was very proud of this weight).  Next, my PFTs were done by someone other than my normal respiratory therapist. That’s always a bite, because Patty makes me blow harder and coaches me more than the other girl did this morning. Regardless, my PFTs were 83% which is 2% up from where they were and right around my baseline. This made me really happy, but I still want to get them higher.

Then my nurse practitioner, Penny, came in (I did tell her you said hi, Colleen! She says “hi” back! 🙂 ) to see me.  I love Penny. She is amazing at her job and I am so grateful that she is at my CF center.  Two nights ago, I had a scary situation where my heart was totally arrhythmic. It was beating around 160 and in a totally funk rhythm.  When I shared this information with Penny,  she told me not to worry about the heart situation unless it happens again, but I think we are both leaning along the lines that it was related to the Levaquin.  If it happens again, I’m to go right to the emergency room and let them capture it on an EKG.  At least we have a plan, which makes me much happier about the situation, which had totally terrified me two nights before.

We did make two changes right now for my treatment plan.  The first change is that I will be doing hypertonic saline twice a day, instead of once. I have had better luck coughing up sputum with the hypersal, so hopefully this will help improve my lung function.  The second change we made was regarding my insulin. I shared with Penny how frustrated I was with CFRD and she went on to explain how different CFRD and how each individual case is different as well.  So, when I explained my 3 hour highs after dinner (even with insulin), we decided to try taking my insulin after dinner rather than before dinner. This should hopefully cover the 3 hour spike that I’ve been having.

Overall, my CF appointment went amazingly well, and I’m so blessed that my lung function is back up to 83%.  I also managed to get a flu shot today, see my ENT, and got my yearly lab work done (6 vials of blood, yay)! My ENT said that my sinuses show that I had a sinus infection, but they look like they are doing better. That’s definitely a good thing!  I’m so blessed, and so grateful for my positive appointments today.

A really hectic week

4 days without a post is way too long.  Unfortunately, I just haven’t had much time to write.

This past weekend and this whole week have been extremely busy and stressful.  I’m in need of a break.

I don’t really have time to get into details at this point, but I wanted to just let everyone know I have a clinic visit tomorrow. I’ll be seeing my CF doctor and my ENT.  I’m hoping for my PFTs to be up, but with being sick so much, I’m really doubting they will be.  I have been increasing my treatments though, so there’s still a possibility.  As long as I keep them in the 80s, I’ll be happy.

I hope everyone has a great rest of their week.