So I got to spend the weekend in Tacoma, LOVE my aunt and cousins, got the stay with them, always miss them a lot. Went to my friend Austin's graduation party (they are all growing up so fast *tear*) and then had yet another check-up with my transplant doctor. Before going to the doctor my mom, aunt and I went on a walk that I had done some time before my transplant, where I had barely made it back to her car because I could barely breathe. The walk is a loop around 3 miles or so with a very large hill at the end, the rest isn't that flat either. We even have a photo of us in the dark because it took me so long it was dark out! (and we weren't even done yet)
Well I made it this time with ease and also ran up the big hills for fun (and to see if I could) anyway the new lungs conquered that walk! So the next morning I go to my checkup, my mom and I had our bikes because I was hoping to get to ride in Seattle. My Blood work (besides a sort of high white count), X-ray and CT Scan looked good. My lung function test was a bit down, 57%, but I guess not enough for them to worry, and definitely not enough to keep me down. Sounds like I won't have another checkup for 2 months which is a NEW RECORD!!! There is a test they want to do coming up where they will put a tube down my nose, throat and to my stomach to watch my acid pH to make sure my stomach acid is not hurting the new lungs, that will go for 24 hours but I will be able to do it as an outpatient.
Finally we got out of that hospital and on to our destination, Red Hook Brewery, where we would eat after our ride, because the brewery is placed right along the Burke Gilman Trail as I wrote about once before. Best trail ever, minus the busy crowdedness, but you get over it, and I'm pretty sure that it goes for like 1,000 miles . I knew my last ride was 20 miles so I knew I just wanted to do more. Besides the fact that I hadn't eaten barely ANYTHING, mostly because of my fasting for blood levels and waiting for Red Hook food, I did fairly well. We rode and rode, all the way to the grocery store that I had walked to so many time while in Children's Hospital for clean-outs.
Turns out all in all we went over 30 miles, which is my new record. So not only new record for a check-up scheduled, a new record for my bike distance. Most of all I was excited by the fact I was able to wear my all new bike jersey to show some support for the American Transplant Foundation and Team Transplant and of course because the back says "Celebrate Life" AND I was given the gift of new lungs, THE ONLY REASON I CAN RIDE MY BIKE RIGHT NOW, AND THE ONLY REASON I AM ALIVE.
So I'm off the the hospital for the post rejection check-up. That means I have blood work, x-rays, lung function test, appointment, and last but not least a bronchoscopy with biopsies. Its gonna be a loooong day.
Wish me luck! Everyone please cross their fingers and pray for NO REJECTION!!
Rejection is NOT cool.
Had another check-up. Besides my PFT's (lung function test) being 62%, which is very close to what they were last time, I was just hoping to get them a bit higher, everything looked good! All my levels were stable. They are going to start me on Lipitor soon, as studies showed it increased lung transplant survival, but are waiting for my liver function to do something I cant remember.
They then scheduled a bronchoscopy just to be safe, mostly because of my low lung function and the injury that happened during surgery. I have not had one in over a month so I'm not complaining!! They also started me on 3x a week Zithromax before the bronch as an all around if something is wrong and they dont see it, it might help a little bit medication.
The other thing I found out at my appointment today is that I am okay to swim in the lake! So summer here I come!! (On the other hand they told me that hot tubs probably weren't the best idea)
Last but not least. IT IS MY 6 MONTH ANNIVERSARY WITH THESE NEW LUNGS!!!
Saw the doctor again. Everything looks good, such a blessing. My lung function test was up again, not quite the leap it was last time, but it was up to 78%!!
I never once imagined having lung capacity like this even with the transplant. I am really shocked at how well I have been feeling. My incisions from both surgeries are healing nicely. The feeding tube should get to cone out in two or three weeks. And I learned that I may not need another bronchoscopy for a whie if all goes well!
All in all I am doing excellent. I've been exercising regularly and just livin it up!
Hope everyone had an awesome thanksgiving holiday and don't forget it's time to decorate the christmas tree!! Ill be sure to post pictures of mine once we get it.
Yesterday, I was blessed with one of the BEST doctors appointments in all of Nina-history. First off I get my blood drawn, then to my pulmonary function test, which was 15% higher than just 9 days ago, making my new lung function record 75%! Yeah... 75%, the highest its ever been in as long as I can remember. So I was pretty stoked to say the least. Next off to my x-ray from there, and then, doctor!
The other good things that came out of this doctor's visit, I learned the partial collapse or injury that had previously been at the bottom of my lobe is now gone. I have a higher red blood cell count so there's more oxygen transport. My oxygen level chills right at 100%, never seen that number before, and like I was telling my dad, the number wanted to go higher the machine just wouldn't let it! Another thing is I will no longer have to check my blood sugar, which is just more than awesome, no finger poking 4 times a day, YAY. Lastly I am off of the sternum precautions which also means, I CAN DRIVE AGAIN!!! And lastly the second part, more prednisone tapering to start next week. All in all... WOO HOO!!
In other news, I saw the doctor for the tummy surgery and my tummy tube has been REMOVED!!! I am almost like a completely normal human being now. The only weird things left is my port-a-cath (which I will be keeping), and my feeding tube, which my doctor said I would be able to remove in a month or so. Then I will be FREE and TUBELESS!!! At the moment I am actually using my feeding tube to cheat and gain back a bit of my weight before it gets removed. But not much and definitely not for long.
That's it for now, and yes it was a totally awesome day! Thanks for reading, and thanks for the support!
I had my first check-up today with the transplant doctor. All in all it was pretty uneventful. I got my blood drawn, did my lung function test, got a chest x-ray, and met the new transplant nurses.
My lung function was 60%, I was a bit disappointed because I was hoping for 65 or 70 at least, beings it was 58 almost a month ago. Then I remembered it was 53 after my stomach surgery... so I blame that for the setback.
The x-ray keeps looking better and better so that is awesome news! I see the doctor again next week so I will be working hard for that. I also started tapering the prednisone, that will be nice.
Sorry I have no more exciting news. Next week!