Skip to main content

Post Hospital- A CF Bride

Planning and IVs:

If you haven't read my last blog entry, you will want to scroll down and read it. Otherwise, you may be a little confused. I was admitted Tues night into the hospital and thankfully discharged on Friday night. Whew. Doc knew I wanted to be home for the weekend, I had lots of plans. Saturday morning I headed back to my hometown to sign a contract and pay the wedding venue deposit. I went for lunch with mom and even got to hang out with my Dad for a while. I talked to my Caterer and set up another appointment to finalize everything. That night Andrew drove home for Grandma Loebach's birthday. She cracks me up. We got her a card and Andrew picked her out a bright pink nail polish called "Young and Cheeky." She kept saying she was 19 instead of 91 and even asked Andrew to paint her nails with it. Adorable. Andrew dropped me at Mom's so I could do night meds & IVs. He had to head back early because he was due at work at 7am the next morning.

 However, sunday I had signed up for a Big Bridal Expo at the local college. Mom and Sarah (a bridesmaid) came with me. My sister is my Maid of Honor, but she couldn't make it, I signed up too last minute. As a teacher she has mandatory weekend activities, like the school open house that day.

Obviously, we enjoyed eating all the cake samples, signed up for the freebies. I even got a couple amazing deals, including one for the mens' suits! Of course, I was on IVs while at the expo. I was hooked up during the bridal show, but hey what can ya do. Life goes on and I gotta keep moving with it. We went for lunch afterwards and overall it was a great day!

That being said, I was still super relieved to be back at my own apartment that night. It was the most I had done is weeks, since I started feeling sick. I'm taking it easy all this week. AND my follow up doctor appointment is Tuesday, so tomorrow I will know more. I'm really hoping my lung function jumps back up, considering I don't feel really better...I'm not sure. So we'll have to see...

Today was my needle change day. So I got to take it out after my morning med and was needle free until 1pm when the nurse came to re-access my port. What else did I do today besides IVs, meds, and eat?  Well, I made a master list of all the wedding guests and addresses for the save-the-dates and wedding invites! I have 3 weeks until the 6 month mark. I have almost everything planned. Overall, it has been a easy and amazing experience. Wedding planning has gone pretty smoothly, minus Bridal party and guest list. There are too many people I love.

Its been really tough. I have over 140 family members (grandparents, aunts, uncles, cousins). Even not inviting anyone under age 18, we still have 150 family members between the two of us. Our venue choice and ideal small wedding really calls for a guest list of 175 tops... We have a bridal party of 16... So I've had to cut plus 1s, except for spouses. Its been brutal as far as how to invite everyone. And to be honest we can't. So we had to be a little "CutThroat" and not invite many friends other than a few who live nearby and bridal party (of course). Worst thing ever and hardest decision ever.

Pretty much since my lung function is low and I'm not feeling the greatest, I can't do much walking around. But, wedding planning is conducive to sitting while on a laptop. So that works well. I can't wait to have my lung function back, to get to work, and feeling like my normal high energy self!

I'm keeping on top of all my therpies and Ivs. 4 IVs, 6 nebulizers, and 2-3 vests a day. The schedules is a little crazy sometimes, but it is worth it to be home. I really can't complain, I'm very lucky to be home and not in the hospital the whole time.

By the way if you haven't seen my newest photo album on my CF Facebook page, you may want to read the captions. It tells the story of my hospital stay, with some interesting and funny details. haha. I try to keep that page updated with CF stuff, so my personal wall can be about everything else, but it does blend or overlap sometimes. However, the best way to keep up with my current health, Research news, or even the Princeton Walk is to "like" the page, so it appears in your newsfeed. Otherwise, I blog here about almost everything :-) I'll be posting a short update on that wall tomorrow after my doc appointment.

So let's hope it gets better and better. And thank you to everyone for help with anything (medical, wedding, or CF Walk). I really appreciate it. Much love!


Comments

Popular posts from this blog

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...