Long, but good, day.
Hello friends!
Yesterday was a long day, indeed. We got to UPMC around 11:30 for bloodwork and X-rays. I then had a Pulmonary Function test at 1:15. It was amazing for me to do that test without a struggle. My last PFT results were at 24% predicted, yesterday I was up to 68% predicted and according to Dr. Pilewski, my scores will continue to go up over the next several months, hooray!
At my appointment with Dr. Pilewski I was able to meet my post-transplant coordinator, Leslie, who seems wonderful. The two of them answered all of my questions and put my mind at ease about a lot of things. Though my feet are still quite swollen, I am down to 121.5 lbs today, so the rest of my body is shedding the excess fluid, including my lungs which looked better this week than last. I also finally get to stop the IV antibiotics, that frees up 7 hours of my day, thank goodness!
The only major concern is my Magnesium level which is extremely low. We considered going to the ER to have it administered by IV, but decided to increase my oral dose over the weekend and see what the blood tests show on Monday. The lowered Magnesium is probably what is causing me to feel lousy and super tired all of the time.
The other things we are planning to do include: An appointment with an ENT to assess any vocal chord damage that may have happened during surgery; an appointment with Endocrinology to discuss an insulin pump; and an appointment with Gastroenterology to see if I can get a button for my feeding tube (I currently have a long tube that comes out of my belly and I HATE it!).
I have also enrolled in several research studies to try to help others in the future. I had to meet with two different researchers yesterday and one of them told me about a new study looking at the life extension of patients who use an inhaled anti-rejection medication called Cyclosporine. I am seriously considering signing up for this study even though it may require several visits to UPMC in the future.
That is all I can think to report right now. I am looking forward to a quiet day of rest! Nancy
Yesterday was a long day, indeed. We got to UPMC around 11:30 for bloodwork and X-rays. I then had a Pulmonary Function test at 1:15. It was amazing for me to do that test without a struggle. My last PFT results were at 24% predicted, yesterday I was up to 68% predicted and according to Dr. Pilewski, my scores will continue to go up over the next several months, hooray!
At my appointment with Dr. Pilewski I was able to meet my post-transplant coordinator, Leslie, who seems wonderful. The two of them answered all of my questions and put my mind at ease about a lot of things. Though my feet are still quite swollen, I am down to 121.5 lbs today, so the rest of my body is shedding the excess fluid, including my lungs which looked better this week than last. I also finally get to stop the IV antibiotics, that frees up 7 hours of my day, thank goodness!
The only major concern is my Magnesium level which is extremely low. We considered going to the ER to have it administered by IV, but decided to increase my oral dose over the weekend and see what the blood tests show on Monday. The lowered Magnesium is probably what is causing me to feel lousy and super tired all of the time.
The other things we are planning to do include: An appointment with an ENT to assess any vocal chord damage that may have happened during surgery; an appointment with Endocrinology to discuss an insulin pump; and an appointment with Gastroenterology to see if I can get a button for my feeding tube (I currently have a long tube that comes out of my belly and I HATE it!).
I have also enrolled in several research studies to try to help others in the future. I had to meet with two different researchers yesterday and one of them told me about a new study looking at the life extension of patients who use an inhaled anti-rejection medication called Cyclosporine. I am seriously considering signing up for this study even though it may require several visits to UPMC in the future.
That is all I can think to report right now. I am looking forward to a quiet day of rest! Nancy
Comments
Great news about your doctor visit. It sounds like you are moving in the right direction. That is wonderful. Keep plugging away and making small strides and before you know it, you will be well on your way back home to Olean to start your "new" life with your family.
I am not at all surprised to hear that you might help with some studies and research. You have definitely have found your calling in helping others Nancy. This world is a much better place with you in it. I just count my blessings every day and you are on the top of my list. Thank you for being you and continuing to inspire so many!
I love you Nancy and I hope you have a very restful day and weekend!
With love and admiration,
Debbie
Much luv from me, Harley-dog and the Goob!!!
You will have so much more time to rest wtihout those IVs (or maybe play on Facebook a little):) Have a super day! You are always in my thoughts and prayers!!
Lots of love and hugs,
Amy
I was so happy to hear what great progress you are obviously making. And that was great news that you can stop your IV's! What will you DO with yourself all day?!
Looking forward to hearing about some higher magnesium levels next week!
Love, Claire