This post is a bit late... Opps...
September 3, I had my first Cystic Fibrosis appointment at Duke University. It really opened my eyes to the true severity of my current health state. I guess I have been aware of what's been going on, I just chose to ignore it until recently. Dr. Gray is my new pulmonologist at Duke. She's great! I also met with the dietician, the CF nurse, the social worker, and several other people that are a part of the CF team. I spent over 5 hours doing tests, getting labs and xrays, and meeting with everyone. I have never had an experience that I felt so welcomed and informed and cared about when it comes to doctors appointments.
Dr. Gray let me know that she thought I needed to have antibiotics, but let the decision be mine. I requested oral antibiotics for a week and four treatments a day to see if I could get over the hump. She agreed.
September 6, I ended up in Duke's emergency room for the first time due to low O2, difficulty breathing, and chest pain. It was a few hours wait due to several traumas that were brought in; however, it was MUCH better than previous wait times (12+ hours) at UNC. I was admitted and in a room within an hour of being brought back into an ER room.
After getting cultures back, it was determined that the only antibiotic that my bugs were susceptible to was one that I am anaphylactically allergic to. Zosyn. I had to be desensitized from the Zosyn by being given small doses of it every half an hour for 13 doses until I reached the goal dose; however, if I were to react to the drug, I would have to begin the process over again. A 6 hour desensitization turned into a 19 hour long process. I tolerated the first dose fine, but several minutes into the second dose I had a reaction that required a shot of epi and a dose of benadryl. Let me say, epi HURTS! Several hours later I had a second reaction and had to start the desensitization process over one more time.
Throughout the month stay, I struggled horribly with severe itching with each dose of Zosyn as they would run it over 4 hours. They decided to run it over a half an hour and pre-med me with benadryl each time and I tolerated that well.
Since September, I have been admitted to Duke four more times for CF exacerbations, a fungal infection in my port-a-cath, and for massive hemoptysis that required two bronchial artery embolizations.
In November, I met an amazing man who has become a huge part of my life. Since we first met, he has been incredibly supportive and eager to learn everything there is to know about CF and is constantly asking what he can do to help with my medical needs. I have never met someone so amazing.
I am so happy to be just one week away from being officially divorced from Justin, so I can begin a new relationship with Jeff.
Today was my first CF clinic appointment since my last hospital stay. My lung function has really taken a hit over the last year. My FEV1 was 16% today which is down from 22% at my last appointment. My weight was also down and I am requiring much more oxygen. My doctor mentioned she was quite concerned about my heart rate as it was extremely high. I am being admitted tonight and will be desensitized from Zosyn and Vancomycin. Tomorrow I will have a Hickman line placed to administer my IV antibiotics for the three week course of therapy. My doctor is going to try to have me evaluated for a double lung transplant while I am inpatient this time around. Hopefully, I can get listed soon. I am more than ready to be able to breathe!
I will update more as I find out!
- I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3 I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...