CLINIC DAY!!!!!!

I was out like a light until my alarm went off at 6:00 am this morning. Scared me half to death! Ha! Took me a minute to figure out where I was. Once I realized I was in Seattle and I had to be in clinic by 8:00 i sprung out of bed and headed for the shower! I also had to pack up my stuff so I was really on the move. I wore my Just Breathe Team Jen t-shirt, along with my Just Breathe converse kicks! We were out the door by 7:30, had to check out first and then get our car. We were on the road headed for the hospital at about 7:45. We arrived at University of Washing right at 8 o’clock.

First stop was X-ray! Get the easiest thing done first! Like i’ve said before it takes longer to change to change into the gown than it does to take the actually X-rays. A young man called my name and I followed him back to the X-ray room. They first have you face the X-ray board, roll your shoulders forward, grab the bars behind the board, take in a deep breathe let it out, take another deep breathe in and hold it. You wait just a few seconds and then you can breathe, and then the picture is done! Next you turn with your left side to the board, there is a bar hanging above your head. You have to grab the bars so your arms and shoulders are out of the picture. The doctors want a side view of your lungs. Again you take in another deep breathe let it out, take in another deep breath and hold it. You only hold your breath for a few seconds, and then you can breathe. Finally you are done. I was escorted back to the changing room, put my clothes back on and away we went!

Next up PFT’s! I wasn’t nervous at all, I was feeling great. I kept telling myself “Just Bring It!” Just like The Rock used to say “Just Bring It!” These new breathers have been feeling nothing but AMAZING! I can do this and that’s just what I did. I am beyond happy to say I today I had my HIGHEST PFT’s since transplant!!!!!!!!!!!!!!!! My FEV1 was 74% and my FVC was 80%! I could not believe it! Did the computer act up? I kept asking the RT tech is that really true? How could that be? “No way! Are you sure?” I kept asking over and over. I’m sure the RT tech thought I was a nut case or something! I told him I was beyond excited and it’s been close 17 or 18 years ago since my pft’s were this high! I was so excited I could have cried tears of joy! Once I finally composed myself it was on to get my blood drawn.

The phlebotomist I had was super sweet. We chatted up a storm. She really liked my converse so of course I had to tell her the story. She liked them even more, once she knew the story. Before we left the hotel I had put several “Just Breathe” bracelets in my purse. After she finished drawing my blood I left a bracelet on her table, and she absolutely, loved it! She put it on immediately! I was tickled!

Our final stop was clinic to see Dr. Kapnadek! Not going to lie I was excited to see him, and I was excited for him to see how well I am doing! He walked in the door, said hello and asked how things were going. I replied with “amazing” followed by a big smile on my face! We talked about the concert Saturday. I told him I was excited to see Jason Aldean but I was more excited to be able to sing at the top of my lungs to every song! Plus I wasn’t in severe need for therapy afterwards! It was truly a blessing! It was time to get down to business. We went through my med list, just to make sure everything was current and up to date. Next up were my lab results. So far everything was coming back normal! Kidneys, liver, white blood cell count was looking great. I am still negative for the CMV virus. The only level we are waiting on is my tacrolimus level. But so far so good! Next on the agenda we talked about my X-ray. He pulled up todays X-ray and then my X-ray from 2/3/15 the day before transplant. I was shocked! Just the comparison blew me out of the water! He was talking about my pre transplant X-ray and all the scaring, I made me realize just how sick I really was. But today’s X-ray showed more black space, which means more room for air! No sign of the air pocket from months before. Awesome! He listened to my new breathers and said they sounded nice and clear! Before our visit was over I asked about my blood sugars. Dr. K looked at my log book, noticing my numbers are really stabling out. I told him Dr. Chakraborty had lowered my sliding scale. I was getting way too much insulin before meals. I would bottom out within a few minutes after I ate. He said that was fine. He said the plan is over the next three months to slowly get off insulin! That totally made my day! Not having to do insulin for the rest of my life, was music to my ears! If they discontinue my insulin right now, my numbers could spike way high. Since my body has gotten used to using insulin, you have to ween off of it. It takes a little time to do that. Plus I am still on 10 mg of prednisone for another 5 months, and then I will drop down to 5 mg a daily and I will be on that for the rest of my life. The prednisone just helps with any inflammation in your lungs. My last question was when do I need to come back? I will be back in Seattle the first part of August for the drag races, so I was hoping to time it around then. But Dr. K totally surprised me! He said since I am doing so well, I am just “roaring” I do not have to come back until three months. He said he didn’t see any reason to push my appointments to every three months. Perfect! Could this day get any better? NOPE! Before we said our good-byes I gave Dr. K a handful of just breathe bracelets. He was beyond appreciative! He said he was going to wear one and then hand the rest to the transplant team! I said I would be honored! We said our goodbyes and were on our home!

As we were driving home, I was reflecting back on today’s clinic visit and pre transplant visits. Before transplant I was constantly at the doctors. If I wasn’t being seen in Seattle or OHSU, I was seeing Dr. Chakraborty weekly down here. I remember being so angry just wanting to give up. I would work my rear end off just to stay alive. I would do anything and everything I had to do to stay alive, but yet I was watching my health just deteriorate drastically right in front of me. I would always get mad at myself, thinking I was doing something wrong, or I wasn’t doing enough therapy. I never accepted the fact that this was the nature of my disease. The older I get the worse I got. I had no one to blame but myself, or so I thought. I never really let anyone know how angry I was. But I would push through it, do what I needed to do to “get by”. Now I go to doctors appointments and I get to see all my hard work payoff. Doing what I need to do, and then some my health has done nothing but execrate in a positive direction. I never knew how awesome it felt to see your hard work payoff, and today finally made me realize that. With this thought running through my head, my eyes started filling up with tears. Good thing I had my sunglasses on! Ha! but no in all honesty I never realized this feeling. Your hard work DOES payoff and trying to describe that feeling is hard at times. Never knowing what that feels like, to now I do and I will never forget that!

Okay i’m getting sentimental, I better start wrapping this blog up. Life is simply amazing. Going from not being able to walk 10 feet, to waking up everyday putting my shoes on and going until the sun goes down, is just an incredible feeling! I’m going to keep on keeping on! Look out world here I come!

Hope everyone had a fabulous Monday, I know for a fact I do!

Until next time…….

~Jen~
“Just Breathe”