A Big Decision:
Having Cystic Fibrosis shouldn't control every aspect of your life. But it does play a big part in some decisions. There are many decisions when it came to us moving. Moving with CF can be a big headache, some states don't even have a CF center. Did you know that? Crazy huh. Read about our decision to move here!
Our moving was great for Andrew's Career. It was a big promotion with a salary increase, plus he decided a while back he wanted to make a career with the company he was working for (instead of using his history degree). He loves his job and does really well in Restaurant/Grocery Store Management. So when he brought it up, I was all for it, but we had to consider the medical aspect.
1.health benefits at the company.
2. local hospitals/ doctors ( can they deal with my CF)
3. CF Center/ Doctor
4. Pharmacies to switch meds over
Luckily, his company does have good health benefits and I currently get my medications from a nationwide pharmacy and our new town has 4 of them! The local area has a CF center/ doctors/ hospitals that are familiar with CF protocol. For example: that we need to be in isolation when hospitalized, or that our doses of antibiotics may seem WAY too much, but that is the REAL amount we take in the dose.
So I have options nearby. I don't want to switch doctors though or clinics, so that makes for a long commute to CF clinics for me. But it will be nice to have a hospital and doctors nearby if I have an emergency or can't travel to mine. I found Doc B in 2011 and I'm staying with him!
Did you know that? I actively sought out Doc. B.
I had Doc. C all growing up and I LOVED HIM! I still love him and look up to him. Doc C. kept me as a CF patient until I was around 23 years old. At that point we couldn't keep pretending I was a child anymore and I had to switch from the Pediatric CF Doctor to the Adult CF Doc at my CF Clinic. Read about the man who saved my life, who was my first CF doc (Doc. C) ever here!
This is sooo tough for someone with CF. I had never even met this new Adult CF Doc and we started off on the wrong foot. Doctor SD assumed I was lying about my hive/type spots (arthritis) and thought I was trying to play hooky from school. Well, my mom told him off and Doc. C backed me up. And I went into his office to show him the spots. He soon realized I was a good student, loved school, and had CF arthritis at a young age. We got along fairly well after that... But he never pushed me to try harder or was proactive with my health like Doc C was... The new Doc SD was very content with how our health was and he would always just say " Good job, keep up the good work."
I kept dropping in numbers, very slowly, but eventually I dropped into the 30s for lung function. He mentioned lung transplants and I just thought to myself that this couldn't be it. That I had to be able to get my health back up, but I wasn't sure how.
So I started actively searching other CF centers, someone mentioned to me about their CF doc having a private practice for CF. So I googled the doc and called his office. Doc B (my current doc) invited me to come meet him and ask questions. I was open about why I wanted a new doctor and that I wanted to be pushed to do better. Doc B was amazing and right from the moment I started talking to him I knew I wanted him to be my doctor.
Here is why I don't want to switch Docs even if means driving an extra 5-6 hours on a clinic day:
Doc B constantly thinks of new suggestions and ideas for me to try (with weight gain & lung function). He doesn't always put me on antibiotics right away, we try doing something different or adding a nebulizer first. He understands about my allergies to the Keflex, Levaquin, and Bactrim families, so my antibiotic range is very limited. He found me a surgeon who not only understands CF, but told me he'd keep Doc. B on his cell if need be during surgery. Doc B is a leading Doctor and office for the research studies. I've gotten to be involved in 3 (almost 4) studies in 2 years! Most importantly he treats me like an adult with a brain and opinion, he lets me discuss my options with him AND since switching to Doc B my lung function went up 30%
Doc B even attended our wedding!
So why risk switching clinics? Down the road I could change my mind, who knows, but I'm doing so well with Doc. B I doubt it. I know lots of CF patients have had to switch doctors in the past, but lots travel farther and farther for a good doctor! I'm sure there are plenty of good CF doctors out there, but Doc B is the perfect doctor for me!
It's a tough decision, since I know most of the staff at the clinic where we live now and LOVE THEM! So it's hard to live here and not switch, but I know I need Doc. B!
Moving with Cystic Fibrosis is tough!
I'm excited for my next clinic appointment in the middle of October! I hope my weight and lungs keep climbing!
Having Cystic Fibrosis shouldn't control every aspect of your life. But it does play a big part in some decisions. There are many decisions when it came to us moving. Moving with CF can be a big headache, some states don't even have a CF center. Did you know that? Crazy huh. Read about our decision to move here!
Our moving was great for Andrew's Career. It was a big promotion with a salary increase, plus he decided a while back he wanted to make a career with the company he was working for (instead of using his history degree). He loves his job and does really well in Restaurant/Grocery Store Management. So when he brought it up, I was all for it, but we had to consider the medical aspect.
1.health benefits at the company.
2. local hospitals/ doctors ( can they deal with my CF)
3. CF Center/ Doctor
4. Pharmacies to switch meds over
Luckily, his company does have good health benefits and I currently get my medications from a nationwide pharmacy and our new town has 4 of them! The local area has a CF center/ doctors/ hospitals that are familiar with CF protocol. For example: that we need to be in isolation when hospitalized, or that our doses of antibiotics may seem WAY too much, but that is the REAL amount we take in the dose.
So I have options nearby. I don't want to switch doctors though or clinics, so that makes for a long commute to CF clinics for me. But it will be nice to have a hospital and doctors nearby if I have an emergency or can't travel to mine. I found Doc B in 2011 and I'm staying with him!
Did you know that? I actively sought out Doc. B.
I had Doc. C all growing up and I LOVED HIM! I still love him and look up to him. Doc C. kept me as a CF patient until I was around 23 years old. At that point we couldn't keep pretending I was a child anymore and I had to switch from the Pediatric CF Doctor to the Adult CF Doc at my CF Clinic. Read about the man who saved my life, who was my first CF doc (Doc. C) ever here!
This is sooo tough for someone with CF. I had never even met this new Adult CF Doc and we started off on the wrong foot. Doctor SD assumed I was lying about my hive/type spots (arthritis) and thought I was trying to play hooky from school. Well, my mom told him off and Doc. C backed me up. And I went into his office to show him the spots. He soon realized I was a good student, loved school, and had CF arthritis at a young age. We got along fairly well after that... But he never pushed me to try harder or was proactive with my health like Doc C was... The new Doc SD was very content with how our health was and he would always just say " Good job, keep up the good work."I kept dropping in numbers, very slowly, but eventually I dropped into the 30s for lung function. He mentioned lung transplants and I just thought to myself that this couldn't be it. That I had to be able to get my health back up, but I wasn't sure how.
So I started actively searching other CF centers, someone mentioned to me about their CF doc having a private practice for CF. So I googled the doc and called his office. Doc B (my current doc) invited me to come meet him and ask questions. I was open about why I wanted a new doctor and that I wanted to be pushed to do better. Doc B was amazing and right from the moment I started talking to him I knew I wanted him to be my doctor.
Here is why I don't want to switch Docs even if means driving an extra 5-6 hours on a clinic day:
Doc B even attended our wedding!
So why risk switching clinics? Down the road I could change my mind, who knows, but I'm doing so well with Doc. B I doubt it. I know lots of CF patients have had to switch doctors in the past, but lots travel farther and farther for a good doctor! I'm sure there are plenty of good CF doctors out there, but Doc B is the perfect doctor for me!
It's a tough decision, since I know most of the staff at the clinic where we live now and LOVE THEM! So it's hard to live here and not switch, but I know I need Doc. B!
Moving with Cystic Fibrosis is tough!
I'm excited for my next clinic appointment in the middle of October! I hope my weight and lungs keep climbing!
Hi Cheriz , I just happened upon your page today and have been reading some of it. I don't usually do that because my son has CF and I know I shouldn't do this but denial has gotten me thru alot. He will be 27 in 5 months and is in good health thank God. Thank you for sharing your story. I read some answers to ?s I have or that I know we will need in the future. Dr.B has been his doctor since he was about 8 I think. Awesome awesome doctor , I hope he never retires. I will keep you in my prayers as you continue your fight. God Bless
ReplyDeleteThank you so much and thanks for reading along! Hope it helped some! Glad your son is doing really well and YES, I agree Doc B can NEVER retire!
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