The Joys of having CF

The Joys of having CF

Saturday, July 25, 2015

The Hardest Post By Far Part 2

When I left off with my previous blog post Part 1 I was beginning to talk about the start of a lot of changes, so let's continue, and I do apologize if when I left off I had people worried.
I went to the doctor, she said do you think it's time for a hospital stay, and I said probably, she said me to. She then told me how excited she was to see the new advances in the CF community for the medicine Orkambi. She said to me, "my goal is to keep you healthy enough so when a medicine comes out for your gene, you're healthy enough to have it". That made me so happy to hear. So I had an X-Ray done and there were multiple little spots in my lungs, that weren't there in May on my last X-Ray. Honestly, it looked a little worse than I had thought as well. So we went ahead and got a room, and by 1:00 p.m. I was down for my PICC line already. Before my PICC line they did blood work and my veins are pretty bad so they could hardly get a vein, so it was decided that since I was going to get a PICC to not even try a temporary IV. That is a good/bad thing. It's a good thing because it saves a poke, but its a bad thing because if there's an issue getting the PICC line in there's no other option. You're then stuck.
So down to interventional radiology I go to get a PICC line. Last time it surprisingly only took 30 minutes which is how long it's supposed to take. The few times before it took hours which is because I've had so many PICC lines that there's lots of scar tissue.
I get in the room, they strap me on that small table that feels like you're going to fall off, it's of course freezing so they cover me with warm blankets, then they warn me that the doctor is good but's always odd when they warn you first about a doctor. They try my right arm first. My worst arm, lots of numbing medicine which hurts, he tries and tries, and then he starts hitting my nerve which makes my hand start flying off the table. The pain literally shot through my whole hand. After multiple times of that happening I asked the nurse next to me if they could switch arms. There was some bleeding as well.
My right arm, the arm that they couldn't get an IV in, all those little holes are from numbing medicine. I believe we counted 11 needle marks in my right arm.
The doctor finally agreed to change arms. I am of course in tears at this point because it was just mentally exhausting. The nurse was amazing! He was wonderful. Then they switch arms and start trying on my left it takes many tries but FINALLY after 3+ hours they get it in. I had had enough. I asked if they could not put stitches in and just do the clamps and the assistant agreed.

I finally get put back in the wheel chair to go back to my room. They come get my mom out of the waiting room, and we go upstairs. I was so mentally exhausted, that I was on the verge of tears the whole way up to my room. When we got back to the room it was just my mom and I and she asked me how did it go with a very worried look on her fiace, and I just LOST it. Big time lost it. I felt like I had been through a bad rollercoaster ride. After all that I just wanted to see my dad, so my mom called and he said he was on his way. Somehow he made it in less than 40 minutes and we live almost 45 minutes away. I won't ask questions. At that moment I only wanted to be with him and my mom. I just wanted to feel "safe" if that makes sense. I was also left with semi-permanent nerve damage in my middle finger on my right hand from so many tries, and they said it should slowly come back in a few months. If not I have to go back in for that.
While laying on the table when trying to get the IV in, I could see the clock, and just watching time pass, there was lots of thinking time.
I'm usually a positive person, and try to always see good, but during the procedure I felt like I was no longer in control of my illness. I felt like it had officially started controlling me. Then they started talking to me about that one dreaded word...a Port. A port is the one thing I've never wanted to think about, because to me when it comes to that it means I'm not in control. To me that meant my illness is progressing. I know it sounds silly but those are the thoughts that went through my mind.
This hospital stay has made me look at my life WAY different. It's made me see reality a little more. It's made me realize that even though I'm a strong person, and always try to have a positive attitude, I'm not "super woman". I can't always be strong, It's ok. God knows how much I can handle, although sometimes I wonder why he thinks I can handle so much. I know that he's always watching over me and that everything will be ok.
While in the hospital I was asked/hinted many times if I was going to go back to Minnesota or if I was thinking of coming back to Wisconsin. That made me think...I finally have my own place, a good job...but I should be closer to my doctor, and I'm probably going to continue more care here in Wisconsin, and if my illness is starting to very slowly progress a little, maybe it's in my best interest to move back.
So after 7 days in the longest stay in a very long time, I went home to my parents house on home IV's. In the hospital I was on levaqin, zosyn, and vancomycin. When I came home I was only on Zosyn.

After much prayer, thought, and discussion with my parents & my boss, it was decided that I'd move back to Wisconsin. Where I work there's one not to far from my parents house so I'm going to be transferring there, and it's the same position I had in Minnesota, so I'm excited about that.
I told my parents moving back with them will be temporary till I can get settled in my new job and get a routine and find a place. 
I say all this to say, yes I am doing good. My health is good, my lungs feel good, I feel good about my decision, and I'm very excited to start this new journey. I'm also a little happy to be back in Wisconsin, it truly is home. 

IV free, below is how long the actual IV was. They said its one of the longest they've done. 

Did I think 2 months ago I'd be moving again? Absolutely not. Am I doing it for the right reason? Absolutely. My health is my number one priority. I will do anything to keep my health in check.
I've had lots of time to think since being off work. I'm going to do more myself to keep me healthier.
This hospital stay has kind of been like my aha moment. It taught me that I can't "plan" everything, and as much as I want and would like to, I can't control everything. That's just how life is. 
This hospital stay though has taught me a lot, and for that I'm very thankful, yes I had a hard time but it's made me stronger and I've learned and grown from it. It truly showed me that I can handle anything that comes my way and its showed me just how strong I really am. But at the end of the day I am doing very good in all aspects, and I truly know that God has bigger plans for me, and I know that he will not give me more than I can handle, and I just have to leave it all up to him. And from now on...that's exactly what I'm going to do because I know with him, everything will be ok.

~God Bless

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