Tuesday, January 10, 2017

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me.

So this last weekend I took my vest machine, wabi sterilizer system, and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL

 


On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least).

I knew I was feeling a bit better than before, but wasn't sure what to expect. My CF Care team is really on top of things & the new director (doctor KH) is very proactive. He decided since my health went down so much we would do a full work up: Full PFT (in the box), CT, Xray, blood, Urine, Sputum, and check for everything. He then set up a time to meet me (with the CF team all together) in a conference room to go over my total health. He showed me all the numbers, scans, and results on the big screen & then explained everything to me. This was helpful for me to get an overall picture (and very helpful to Andrew, who is still new at understanding all the numbers).

So...Are you ready... My liver is more normal-ish, my cell count is normal-ish, no weird sputum cultures, just two strains of psuedo. Weight is up to 106.5 & my lung function.... is up from 38% to 50%

FIFTY, hot diggity dog! I went up 12% and while that isn't quite my baseline of 55-58, it is a big jump in the right track.

What does this mean for me (& Andrew)? Well, doc wants me to keep doing everything I am doing, plus make sure to add 20 mins of cardio type exercise post therapies to really get my lungs going!

I think I'm going to buy a membership to the local gym (it's not a big fancy gym with a track), but I want to use the gym more for lifting weights, then do workouts & treadmill at home! I have done a lot of my work from home, so I can focus on eating & meds more!  I will just keep at it. My next appointment is Feb 28th!

Also, make sure to check out the lastest Blog post I wrote for the National Cystic Fibrosis Foundation Website, it is about Advocating for yourself.


20 comments:

  1. So happy for you. What a relief to get some improved numbers. I've always wanted to ask you this but alays forget...how tall are you?

    ReplyDelete
    Replies
    1. I know I was very happy I'm on the right track. I think my body is FINALLY adjusting to Orkambi. I'm 5'1" -5'2"

      Delete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Have you ever looked in a CF Lifestyle grant? It has really helped me!

    ReplyDelete
    Replies
    1. Oops, didn't mean to delete your first comment. I am so relieved! Thanks! I didn't because they pay for like gym memberships & stuff right? I figured it had to be a bigger gym. We live in a tiny town of 4,000. But I will look into it. It is a great program, I have heard lots of great things! Thanks Wendy!

      Delete
  4. That's great news! Keep up the good work.

    ReplyDelete
  5. That's wonderful to hear!!! And how cool that you were able to see and discuss your whole body health :) I'm so glad things are heading in the right direction. Keep it up!!

    ReplyDelete
    Replies
    1. It was awesome to see everything on the big screen at once and discuss how it does & will affect me. The whole care team was SO helpful! I'm just excited to keeping going & climb even higher! Loved the Gender Reveal of the twins you did :-)

      Delete
  6. This is awesome!! And I loved your post on the CF Foundation site!! :)

    ReplyDelete
    Replies
    1. I was very excited about my progress so far! Thank goodness! And thanks! I really love blogging. :-) Good to know people are reading them too, lol!

      Delete
  7. You can set up your own gym for half the price doing weights and a walker might cost more initially but then works out cheaper. Re kids ; ask your Dr about the mirena I.u.d a plus (no periods over time) . Or tying your tubes ? Think of the costs emotionally/financially of a kid, as someone who's father left as a teen, and seeing my mother raise 3 girls on 3 jobs, it ain't pretty. Think long term like if you weren't around and the stress on your partner. A little selfish ?!

    ReplyDelete
    Replies
    1. Your "advice" regarding staring a family is not at all helpful and incredibly rude. Choosing to have children is a very personal decision and one I'm sure she and her husband have researched and thought through. Some of us choose not to live in fear of the unknown and instead live with hope and optimism. There are no guarantees in life - a perfectly healthy couple could encounter tragedy, but you would never tell them not to have children because something MIGHT happen. In the previous post, Cheriz stated that she wanted a family - it wasn't a question of whether she should or shouldn't. So please keep the negative comments to yourself.

      Delete
    2. Thank you "C" for you kind words and the reply. It meant a lot to me!

      Delete
    3. No problem. :) That comment hit close to home as my husband (CFer) and I have two children. No matter what happens, I will never ever regret having my boys. Each round of IVF was so worth it and they are my everything. You will be a wonderful mom!!

      Delete
  8. You can set up your own gym for half the price doing weights and a walker might cost more initially but then works out cheaper. Re kids ; ask your Dr about the mirena I.u.d a plus (no periods over time) . Or tying your tubes ? Think of the costs emotionally/financially of a kid, as someone who's father left as a teen, and seeing my mother raise 3 girls on 3 jobs, it ain't pretty. Think long term like if you weren't around and the stress on your partner. A little selfish ?!

    ReplyDelete
    Replies
    1. Sonia,
      I don't need a cheaper gym solution, I'm fine with paying for our local gym. It's reasonably priced (rural living). Also, the ladies there can motivate me & I can motivate them!

      As far as children, I do not plan to have them biologically. Although there is nothing wrong with people who have CF who do. Andrew & I came this decision along time ago. I'm stable & healthy. There is no reason I can't live a full life, if I keep on top of my health. We want children more than anything and see no reason why can't have kids.

      We never know what life will bring or when someone will pass on, whether it be CF patient or healthy person. Like "C" said I live my life in hope, just like everyone else.

      I'm sorry for your situation and that mother struggled. But she sounds like a strong women to raise you & your siblings on her own.

      I do not believe it is selfish to bring a child or children into my home & give them a loving, stable environment. I believe it is LOVE!

      Best wishes
      Cheriz

      Delete
  9. Love your motivation! Continue pushing through these challenges, Cheriz!
    I was,relieved to see the response post by "C". I share her thoughts and also support you and your decisions.

    ReplyDelete