Clinic Day & X-Ray’s

Well it was clinic day! Woke up nice and early, enjoyed a delicious cup of tea and a bowl of Fruity Pebbles before I headed out the door! Ha ha. I had a good feeling about today! My port still isn’t working, so they have been drawing my blood peripherally. I’m pretty sure I got the “new girl” nothing against her, I have tiny veins and they like to hide. She tried once and missed, she asked if she could try again, I politely said “no, sorry.” She asked a more experience phlebotomist and she worked her magic. Added a heat pack to the top of my arm, the veins popped out, she was able to hit one on the first try! Thank goodness! I don’t mean to sound like a downer, being a human pin cushion isn’t my favorite thing in the world. After the vampire finally stole my blood, I was off to x-ray for another chest X-ray. Although I will say I was a little nervous to do the x-ray only because I was worried about my sternum shifting more since I slept on my sides the other night. After I checked in I was instructed to put on a gown, so I did. I know I’ve said this before, but it takes longer to put the gown on than it does to take the pictures. I wasn’t even done putting the gown on before they called my name. Yikes! Guess I need to learn to be a little quicker! After x-rays it was PFT time! I was determined to “rock it” today!!! Yes that’s right, I was going to give it all I had! Well, I do that every time, but I thought by all the walking and going to rehab I’ve been doing, I thought for sure my numbers were going up. I checked in, took a seat and waited for my name to be called. Within a few minutes an RT called my name. I had to get weighed first, which all I have to say is YIKES! Then we proceeded to the lab. I took a seat in the PFT box, anyone who has ever had a PFT done you knows what I’m talking about. Ha ha. I got all situated and it was time to do the first test, followed by a second and third test. I thought “alright, those HAVE to be better!!” Well come to my surprise they were exactly the same as last week. FEV1 was 77% and my FVC was 80%. At first I was a little disappointed; I thought to myself “what the heck?? Are you kidding me? What am I doing wrong?” After thinking about it and talking to a good friend Jennifer Wood, she reminded me of how well we are doing, and at least my numbers at staying the same and not dropping! Also I still could be doing PFT’s pre transplant. Now that was ROUGH! After I thought about it, my attitude completely changed. I was giving a second chance at life, able to walk, climb hills, do so many things I haven’t done in years, and here I am getting disappointed in myself!!!?? That’s not right at all!!! I’m glad “Jwood” put me in my place, and made me realize I am still doing AMAZING!! Thank you JWood!!! After PFT’s it was time to see Dr. Sid. I’m pretty sure it was the shortest visit we have had with him yet. He came in and said “let’s go over your chest x-ray and then your medication list.” I said “okay!” Chest x-ray came back just fine, no movement in my sternum, air pocket is still getting smaller, and he is seeing a lot more black on the x-ray’s. Which means the swelling in my lungs is resolving and it’s creating more airway space! That’s awesome to hear! The bad news is I still have eight more weeks of “extreme sternum precautions!” YIKES!! Well, the positive side is we are half way! Eight more weeks of sleeping on my back and not raising my arms out or above my head, I can do this!! I think, ha ha!!! Double checked my med list, as of right now no changes to any medications. Then he asked if I had any questions and I replied with “yes.” Ever since transplant, my teeth have been very sensitive to hot and cold items, my question was “is that normal?” He said “usually not, if he had to take a guess it is a side effect from one of the medications, since I do not have any dental issues. He told me to try different toothpaste, so we will see how it goes! We also discussed the new clinic plan, for now I will only have to go to the hospital once a week to have my blood levels checked and that’s all. The next time we will report to clinic is April 20th. If anything changes in the meantime, drop in home spirometry, spike in temperature, feeling crummy, anything at all I have to call right away. Hopefully that will be a phone call I will NOT have to make. But in the meantime I have to keep going to rehab 2-3 times a week, and keep up with the walking! I was pleased with our check up! Couldn’t have gone any better!

Before we left the hospital I finally obtained a cd with my pre and post lung transplant x-rays. Which I will post below. The first two pictures (frontal view and side view) were taken on February 3, 2015 the day before surgery. The next two pictures (frontal view and side view) were taken today April 1, 2015. No, this isn’t an April fool’s joke; these are my crappy breathers, and my brand new second chance at life breathers!! Although it isn’t the same as actual photos on my lungs, but they will give you an idea of just how sick I really was. In both frontal views obviously you have your heart on the left hand-side (right side in the photo), just below that you can see my peg tube. On the upper right hand side of the photo’s (left side of my actual body) you can see my mediport, you can trace the small line just right above my heart. On the side views you can actually see the needle sticking out of my chest. Kind of cool!! When you’re looking at the pre-transplant x-ray you can see TONS and TONS of white “bubbles” and shadowing. The “bubble” or “perfect looking circles” are pockets of infections. All the shadowing you see if scare tissue, none or very little usage left in that portion of my lung. The side view is looking straight into my lungs from the side, and you can see lots of infections and scare tissue as well. In the post-transplant x-rays you obviously can see my peg tub, mediport, and my heart again. But you can see a lot more black areas, which indicates room for air movement! The long round “tubes” you see are the different bronchi’s and bronchioles, which in simple terms are “branches” for air movement. Pretty cool! At first for me it is super scary to look at. I knew I was sick, but didn’t realize it was that bad and how little room for air I had left. I was blown away, to the point my eyes filled up with tears. I am so grateful for this second chance at life, and this puts it into perspective just how lucky I am! I that helps you understand the x-ray’s a little better. They are hard to explain, I had to have my doctor explain them to me, before I could explain it to you guys. Hope it helps!

Well I hope you all enjoyed the x-rays, if anyone has any questions, doesn’t matter what kind of question please feel free to ask! I love to answer all types of questions. I have to be at UW tomorrow morning at 6:15. It is finally time to say goodbye to my mediport and peg tube! To be completely honest I will NOT miss my peg tube one bite! It has served its purpose, done a great job but it’s time to go!!! As far as my mediport, I’m going to have a hard time letting it go. It’s almost like a piece of me will be missing. I’ve had it for nine years; it’s been my life line. It’s been a life saver, one poke and I’m done. This time I will ask to have pictures taken, so you the readers can see!! Being a science geek I love seeing this kind of stuff! So keep your fingers crossed I can obtain a couple this time!

The alarm is going to go off extremely early so I better wrap this up, plus I’ve taken up enough of your time. Hope everyone had a great Wednesday! Remember please feel free to ask any questions you may have! Goodnight!

Until next time………..

~Jen~
“Just Breathe”

Pre Transplant Feb. 3, 2015

Pre Transplant Feb. 3, 2015

Post Transplant April 1, 2015

Post Transplant April 1, 2015
On the left hand side of this x-ray isn’t part of my mediport, it is part of my sternum wire. Sorry about the mistake.