@contentandwell - What is MAC/MAI?

@colleenyoung, @contentandwell, @rosemarya, @hopeful33250 - I feel a little guilty sharing this because I'm still pre -transplant but I had a very encouraging visit at the Mayo Clinic in Rochester yesterday. I only met with the study co-ordinator but she shared blood test results from last month. Dr. Torres did a more accurate test for my GFR and it improved! Last month my GFR was 22, in the local ER its was 19, and with the more accurate test it was 26! The higher the better. I see the transplant team when it hits 20 so I am motivated to get back to regular exercise and eating healthier (confession - I was at such a plateau I had started to give up and not try because at least I was staying stable with my weight). It's amazing what a few numbers will do to one's psyche. People typically lose 5ml a year so if that is the case I would be at a GFR of 21 in one year which gets me past my youngest daughter's graduation (my hope/prayer). But, because I'm in a study which is using Tolvaptan (a med doctors know works but are trying to get approved by the FDA) I have hope that I can get my youngest off to college before my life becomes consumed with the transplant process. I'm now feeling silly for being a part of this group but you are ALL teaching me so much. I feel like I will take more in now than when I'm the transplant patient. Already I feel like my health is creeping into my mother duties so I can only imagine what it will be like in a year or two.

@lcamino Thanks for sharing your news regarding your appointment yesterday. I'm so pleased that you felt encouraged. As you said, It is good for the psyche. Please keep sharing with us. We are so glad that you are sharing with this discussion group - we all learn from each other and you are contributing to our learning as well. Teresa

@lcamino, No guilt allowed!
We are all number watchers, too! And along with you we celebrate even the teeniest improvement. And we worry at the teeniest worsening numbers. We also know that numbers can fluctuate, and that is head spinning.
I am happy that you have experienced an improvement at Mayo last week! Yippee!! Is that when you treated yourself to the earrings and lobster roll?! .
Now, as far as the teaching thing - you are teaching us so much, too. Sharing goes both ways. And the conversation is fun, too!
Next week is my number watching week as I get my labs drawn.
Keep on with those baby steps. You will eventually get where you are headed.
Rosemary

@rosemarya - Thanks for your encouraging words! Yes, the day I had the lobster roll and bought the earrings was the day I got my improved lab results. I felt like I still had a chance at losing some more weight before I need the transplant and that was empowering.

@lcamino, Celebrations and determination are both essential for your journey !

Wednesday, I'll get my labs drawn. My husband and I have a tradition of celebrating with donuts from our local favorite bakery!!! Fortunately this celebration only happens every 3 months:-)
Rosemary

Good donuts!! And after getting results - good labs!!

@rosemarya - I like that you have a celebration routine. I suspect mine will be ice cream! Please keep sharing your successes at the lab - it's encouraging for all of us. Congrats!

@lcamino, I think my celebration routine comes from my past experience as a special education teacher. I learned early on the benefits of positive reinforcement. All celebrations do not need to involve food, though:-)
My own best part of any celebration is a prayer of thanksgiving for my restored health.
Rosemary

@rosemarya - you are right. I need to celebrate without food more - like a bike ride! I agree that prayer of thanksgiving should go with any routine.

@lcamino I like that idea, Lynn, a prayer of thanksgiving being part of the routine - sort of like spiritual exercise! Teresa