It feels funny to write that title. I can hardly believe that it has been years since I have been on my blog. This used to be a refuge for me, and I took comfort in the ability to write about my illness, infertility, and life in general. Then, my daughter was born, my sister passed away, and life became hard, busy, and sometimes quite depressing.
Over the last few years, I've struggled with such varying feelings. I have felt the very lows of depression and anxiety where I have been unable to leave the house, and I have felt the immense highs that occur as you watch your beautiful child accomplish something new or give you the biggest hug as she tells you she loves you more than anything. In truth, even with all of the high moments my daughter has given me, the last few years have been downright hard.
My sister lost her battle with cancer at the end of December in 2014. It has now been three years since I last held her hand, hugged her, or heard her contagious laughter as it filled a room. The first two years, I felt like a zombie moving through the motions as I learned how to somehow cope with her absence in my life. Over the last few months, I've finally just now begun to really feel like my "old self" again. I still have my days when I feel the sadness of loss overwhelm me, but they are few and farther between than they have been, and while a part of me feels angry that I'm allowing myself to feel happiness, I also know that my sister wouldn't want me to live my life sad. So I've been pushing forward, and the one thing that has kept me grounded is my beautiful little girl.
My daughter, Sydney, is now almost 5. She'll turn 5 next month, and she is beyond excited to celebrate her birthday with a My Little Pony theme. She is so intelligent, one of the kindest kids I've ever met, and so very sweet to others. She's also quite smart, and has a great sense of humor. I know I'm biased, but she's pretty darn amazing. She's currently in her second year of preschool, and her teachers have said that they will be so sad to see her go to kindergarten next year. She's ready though. She knows all her letters, and she is even reading and writing some words. I'm amazed by how much she has learned. She is the light of my life, and I'm so blessed to have her.
Two years ago now, we were actually pregnant with a second baby. We were both so excited and we couldn't wait to have a sibling for our little girl, but sadly I had a miscarriage just shy of twelve weeks. It was another blow that led me into a worsened state of depression and anxiety as I learned how to accept the loss of our baby and move on again. We had everything set up to try and carry another child yet again, but sadly, in November of last year I wound up hospitalized, and it changed the game for us.
Last year, Sydney brought home every germ imaginable as she triumphed through her first year of preschool. Everything she brought home, I managed to catch, and before I knew it, I was really struggling. My CF team and I made the decision together that it was time to call in reinforcements and I received my first hospitalization in 12 years and my first round of IV antibiotics in 8 years. It was hard for me to mentally accept, but I knew I was doing what was best for my health.
During my hospitalization, I wound up doing 3 different IV meds. At first it was Merepenum, Tobi, and Vanco. I then ended up culturing C. Diff. while in hospital, and the IV meds were changed from Merepenum to Zosyn. It did help my lung function and my energy as these drugs kicked in and took care of the high levels of pseudo and MRSA I was carrying, and before too long I was sent home on a PICC with a home health care nurse coming out to help me.
The very first night I was home, the home health care nurse came and set up a schedule for me to do my drugs. She then gave me IV Tobi, even though I had already had my one dose for the day, 10 hours prior. Shortly after, I started feeling very odd and different. I called my team and they suggested I might be dehydrated so I chugged gatorade and rested, only to feel worse a little later. They then suggested I head into the hospital again to be checked out. As blood tests came back, we found out I was in kidney failure. I had been given two doses of Tobi in one day, when I should have been given one, and it was too much for my body. I was then readmitted to the hospital to sit and wait until my kidney levels bounced back. The doctors were shocked, as it took nearly a week before we saw them start to drop.
I made it out of the hospital just before Thanksgiving, but the doctors told me that it was no longer wise for me to carry another child. With the CF, the diabetes, and now damaged kidneys (they did bounce back, but pregnancy is hard on the kidneys and mine have taken a big hit now), it was simply too risky. Obviously, I have a beautiful daughter, and I can't risk not being here for her to try and have another child. This also was a huge hit to my mental health as I struggled with the depression of never carrying another child again.
The last year, thankfully, has been a much better year. While we did manage to pass around EVERY sickness again this year, including Influenza A (it was TERRIBLE), I managed to stay healthy and out of the hospital. I haven't even had a course of oral antibiotics this year (knock on wood). I would say that the biggest reason for this has to be my improvement when I started the new CF drug, Orkambi. Once we knew that I couldn't carry a child anymore, we immediately started me on Orkambi as we had held off only due to pregnancy. It was a game changer for me. I handled illnesses so much better, and I saw a 6% increase in PFTs. My last FEV1 was 82%. Unfortunately, I did have a lot of side effects from Orkambi. Higher blood pressure, higher blood sugars, increased depression and anxiety, horrific GI issues where I'd be in the bathroom 8-10 times a day, and issues with ovarian cysts (I have to have surgery this coming summer to get rid of them). It was worth ALL of those issues to be able to breathe better and handle illnesses better, but it was a host of rough side effects.
A week ago, I made the transition from Orkambi to Symdeko. I'm now 8 days in, and while the first week was quite rough, I'm doing better now. At first, I experienced a lot of shortness of breath and a horrible headache that lasted around the clock for days, but now I'm feeling really pretty good. I have more energy than I did on Orkambi, and for the first time in a year, I'm only going to the bathroom 1-2 times a day! I'm hoping the positives of this drug keep up. We'll see what happens as it continues, and I'm curious to see how it impacts my lung function, but I'm hopeful.
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