This and That and Talk - My Transplant

@2011panc, Best wishes for you as you start the next regimen of treatment. I really hope that you can get some relief.
Wow! 4 hours of walking - is that possible for you, or is that the goal? I have to assume that is throughout the day and any movement counts.
My girlfriend has back pain and we are going shopping this week. She can walk for a while, then needs a shopping cart to lean on. She used to be such an active gal. We used to walk together, but now we shop for our craft and sewing notions, and do lunch:-)
The fun goes on anyway!
I enjoy hearing from you. Keep us updated.
Rosemary

@ rosemarya, Thank you for your well wishes. I had a very good day except for my unrelenting back pain.
I finally had an appointment with the closest Pain Clinic today and got some injections that I was very hopeful would lead to at lease a few months of resolution. It was an unsuccessful and painful experience. Now I have to wait for the next step. We still have some options, so hope remains. Right now I am hurting and despondent.
Tomorrow I restart physical rehabilitation at home using my last regimen -- at least as much as I can do. Since part of today's regimen was to walk for 4 hours, we did some shopping and I found a guide to Toga as well as an illustrated Yoga handbook. So we are praying for strength for carry us through and endurance to become as physically fit as possible in case back surgery becomes a reality.

Thanks rosemary I planned to have a quiet day and take a long walk as its going to be nice for a change here in eau claire wi. Above normal in the 40s again it's still hard to believe that I am 7 years post transplant and my kids get a kick out of me as us heart transplant patients don't call it anniversary we call it heart transplant birthday so I tell my kids every year my 2nd birthday is coming up in january and they tease me and say no but it always does have a great day rosemary and thanks again
Glinda

@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

@glinda, I want to wish you a Happy Transplant Anniversary. I hope that you have a nice day:-)
Rosemary

@contentandwell I was so surprised because I realized that how I feel is not how I always appear. That was a very nice encounter for me.

@2011panc, You deserve one of those shiny sparkly gold stars! And the Big Blue Ribbon, too. I know how much effort you put into taking good care of you.
What a wonderful compliment, being told how much "better and healthier" you look now!
Thank you for sharing this experience:-)
Prayers for you, too.
Rosemary

@2011panc That really must have made you feel good, congratulations. When I was in the throes of cirrhosis I tried my best to maintain my appearance because I did not want anyone to look at me and feel sorry for me. People frequently mentioned how good I looked, even the medical people when I went for appointments. My PCP said if he didn't know I was sick he would think I was perfectly healthy. That was my goal and it did make me feel good. The last six weeks or so things did go downhill and I gained so much fluid weight that I couldn't leave the house -- no shoes fit!, so then no one really saw that I no longer was looking good.
JK

We often do not really know how other people view us. Today I attended a baby shower and saw a woman I have not seen for probably 6 years. We were both visiting with everybody for a while before she caught me alone and asked who I was. She then admitted that she did not recognize me at first because I looked so much better and healthier. What a great feeling! I feel like I struggle everyday now and really work to keep my attitude up, but she saw a new and healthier person. I count that as a big Gold Star and Blue Ribbon Day! My calendar is marked! I pray for everyone of us to experience a similar event. it really made my day.

@rosemarya thanks for the information. As I look at your list I realize that many of these tests would be considered by the transplant department to fall outside of their realm. As I mentioned, they are loathe to step on the toes of other doctors a patient has, like the PCP. They will always monitor me for the possibility of malignancies but they leave it to the PCPs, endocronologists and whomever else to monitor other things not directly connected to transplant, like bone density, pap, colonoscopy. I do have a gastro at MGH who does my colonoscopies and endoscopies so they are in close communication. Different transplant centers just operate differently. Another thing that seems to be different at MGH is that prior to transplant you are a patient of a hepatologist. After transplant you no longer are involved with that doctor, the transplant team takes over.
JK