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

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...