The Joys of having CF

The Joys of having CF

Tuesday, February 16, 2016

Options & Hope

Today I went back to my old clinic. The clinic I went to for 7+ years before i transferred to my current clinic. I did lots of research. I met with one of the top doctors. She was awesome. Very knowledgeable. She answered a lot of my questions, we talked about health plans, goals, and went over my medical history. 
Each person I had contact with today asked why i wanted to switch since I'm currently attending one of the top CF centers. When you hear a clinic say their following "Minnesota protocol" that's my clinic. 
This clinic is smaller. In their words they try to model the clinic I go to, and are even trying to recruit my old pediatric pulmonologist so they can get more research there. 
After lots of discussion, questions, and meeting a wonderful CF team I left with options. 
I did not want to make a final decision today. I wanted to weigh all my options. I left with a small amount of, "what do I do", and a greater amount of hope. 
I now have two great clinics I can choose from. Both are great. Don't get me wrong I do love my current Doctor, there just needs to be some change. 
So after all this where does this leave me. 
Right now I am going to keep my two doctors appointments in Minnesota next month. One day I have my annual studies, chest X-ray, dexa scan, and sinus CT. Then the next day I have PFT's and the doctor visit. This appointment will be at a new facility, so maybe things will be different. My biggest dilemma really, is wanting a new ENT doctor for when I need my sinus surgery.
I am going into the appointment with all my concerns, questions, and most importantly options. I think just knowing that there are other options now just releaves a little pressure. 
Switching clinics isn't easy, especially when you have a whole team you work with. It's not just a doctor you switch. You switch dietician's, respiratory team, social workers etc. it's like leaving family, and today while being at the other clinic hearing how highly they talk about my current clinic, I couldn't help but feel a small sense of pride. It made me really think how thankful I am to be able to go there. To be at the tip of research, to see some of the top doctors, be at the clinic the VEST was created. To have met the doctor who created the VEST, and to also be at one of the top medical schools. 
A small part of me had a little guilt for being at this other clinic, almost like being a trader, BUT it made me realize how blessed I am to have all of that at my finger tips. 
I'm now sure if all my ramblings made any sense, but I say all that to say, I don't have my final decision made, and I won't make it until after my appointments next month, but today I left with more hope, gratitude, and most of all options. 

~God Bless 

Monday, February 15, 2016

Glimpses of Hope

It's been two months since I've posted an update, mainly because I haven't had to much to update on. In January I went down to Florida to visit my grandparents, and enjoy some warm weather. It was nice to relax a little to start off 2016. 
Last week Friday, I had one of my dreams come true. I've had glasses since I was 3, and not a big fan, so I had LASIK eye surgery. I'm in love. The next day(Saturday) I had a follow up appointment, and I have 20/20 vision. The eye doctor even took a picture of my "perfect" eye. 

Now onto a health update. I can finally say I have a glimpse of hope again. Tomorrow I have my very first appointment meeting with a new doctor, at my old clinic. It's been a long time coming. The waiting game is long overdue. I'm ready to improve my health, and hopefully this appointment will be the start of a great journey. 
To say in the past few months I've lost hope...I wouldn't quite say that. Maybe more of feeling defeated. Not knowing which way to go. Having my hands tied of staying, or switching clinics, and doctors. Those with CF know you get attached to your medical team. They become family. You trust them and put your life in their hands. 
It's scary to move and switch. It's scary to think of starting over. But, you can't let that get in the way of your health. 
It's time to turn the page. Time to start a new chapter. In my case I'm going back. Back to the clinic where I went when I was diagnosed, back to the place that basically saved my life. If it wasn't for this clinic, I probably wouldn't be here today. Of course it'll be different...but I'm so excited. 
I'm excited for this new chapter. Though it may be a little scary, I feel God has pointed me in this direction, and I know he has his hands on my shoulders. 
I can finally say I have glimpses of hope again...

~God Bless