Posted on May 24, 2013
Posted on May 24, 2013I want to thank every one for your help towards my medical travel fund. I made it to Mayo. As I was sitting in Walmarts getting the oil changed and tires rotated an email came in. At the last minute, less than a week before my appointment, Mercy Medical airlift came through with air tickets. What a surprise !
I spent 2 hours of face to face time with the doctor. It was kind of funny watching him read over my records. A smile came across his face as he was reading about the policythemia. He told me that in his 40 plus years he has had one other patient with this. He started explaing about the HIF2A gene and receptors. Then he read my genetic testing and his smile slowly faded. I have already been tested for that and came back negitive.
We talked at length about some treatment options. The clinical trial that I was hoping for is no longer accepting pheo patients due to an unfavorable event. He also does not feel that my tumor burden is advanced enough to justify the risks associated with a clinical trial drug. The current standard being to use it as pallitive care.
Over all, I am disappointed in the trip. I was hoping for better answers and a better care plan. He did say that he would be willing to consult with my local doctors. We did come up with some tweaks to my medications that will hopefully help some with dealing with the tumors on a daily basis.
I have an upcoming major operation at the end of June. I will be loaded up on dibenzaline in increasing dosages until surgery. After surgery I will try the modified medication plan and see how that goes.
Again, Thank you to all of you. You support means the world to me. I may be down right now, but I am not done yet !
Lori & John
Posted on April 30, 2013
Posted on April 30, 2013Tremendous Thank Yous going out to every one. With out your help this doctors appointment would not be possible. I will be posting updates as we travel. Watch for pictures in the gallery. Love and Hugs and thank you to each of you !
Posted on April 24, 2013
Posted on April 24, 2013I want to thank everyone for the donations coming in to the medical travel fund. I am amazed at all of the love, support and well wishes. I am so grateful to all of you. I am stunned.
This started out on the advice from a social worker to have a bake sale. Um Ok, I don't bake. Another social worker advised me to put out coffee cans at the gas stations. I started this out as " Change for a Chance" printed up fliers, taped them to cans. I went to a gas station. No body goes in gas stations nor pays cash if they do go in. What I did get was few gum wrappers and some phone numbers and a pop top. Mayo Clinic social worker sent me forms and on them was to do an online fund raiser
Your help has lifted a tremendous weight and a great deal of worry off of our shoulders. Now I can worry about the appointments instead of the" how am I getting there? "
I am still feeling under the weather but am hopeful that with a better medicine regimen that will change. The good news is... It is still warm and sunny. Warm sunny days always make everything better.
Tires rotated, oil changed, new wiper blades. Check, check and check. Now to pack and not forget the entire trunk of medical records and to quit worrying.
Many thanks and much love to all
Lori and John