Skip to main content

Finalizations

Getting Some Answers:

My wedding planning is over and the wedding is coming up soon. We get married in 2 months! Also, the CF Walk I'm in charge of is on June 27th, so two weeks and that is done (if you want to donate to it, here is my page: http://fightcf.cff.org/goto/CherizKunkel ). The Clinical Trial I'm on has two more weeks as well and its done! Life has been so busy lately, that even though I love everything that has been going on... I can't wait until life is a little simpler. But I guess life isn't really ever simple.

The clinical trial is going pretty well. I miss being on hypertonic saline, but it's only a four week trial. The actual breathing treatment/ trial med doesn't take that long to do. So that is nice. However, the trial med has a
more rigorous cleaning/sterilization process after each use. That takes time to do and makes traveling a bit harder.

That didn't stop me from going to visit my sister for a few days. She moved to a new place on Saturday, so I helped her pack & move. It was pretty tiring, especially on moving day. But, I loved spending time with her and I'm glad I got to see her new place, it is really nice.

I'm getting a little better at finding food I can eat, not hating it any less though. haha of course. But I am catching on quicker at restaurants to what I can order. I'm hoping though Doc will have some better solutions. He said we are going to discuss it Wednesday at my clinic appointment. That's right, I have a clinical trial meeting & my clinic appointment too in 3 days. Hope my lungs and weight are slightly up or at least the same. It's annoying when they keep going down.

With my inability to eat high calorie foods and gain weight, I'm wondering if I made a mistake getting my G-tube taken out last fall. It was leaking, raw, sore, and kept getting worse. But, now I wonder if I should have just dealt with it, since my weight loss is a bigger problem then a leaking tube. Weight being down is correlated to overall health and directly affects it. If my weight goes down, typically that means I don't get nutrients I need. While I take vitamin supplements (8,000 units A daily, 50,000 units of D on Sundays, and Vitamin E daily), I know my iron and calcium have to be low from not eating meat & dairy. So I have a lot to discuss with Doc Wednesday. I may even suggest I put a tube down my nose for a while. I really want to get my weight back to 108 before our wedding and that is impossible without extra calories during the night.

I guess it could be worse. I've been trying hard the last few weeks to maintain my weight & my family has been super helpful. So I've been hoovering around 100 even (slightly before up to 100.4). But, I've been a lot worse before. I was 80 lbs and 38% lung function in college. So I gotta just keep at it. I don't want to end up there again. Focusing on that will help.

One thing that is helping (I hope) or will anyway (down the road) is the fact that I'm tying to "work out" more. Now, I don't mean the usual jogging or weight lifting, but I go swimming sometimes, or out for a walk. Nothing big, but again I do what my body will allow me too. If you read my last couple posts below you will know more about my lil rehab plan I have put together.

Not sure how fast it will help, but my goal is to be 108 & healthy by my wedding. I want to dance without needing drinks or an inhaler in between every song. Especially since we are picking out some of our favorite songs for the reception.

I guess a lot of my questions will be answered on Wednesday. I'll keep everyone updated. Thanks!

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...