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Ahhhh Lori so good to hear from you.
Yes, I am a ball of nerves. Yesterday we went to sign consents & go to an after-you’re-discharged’ class.
It was overwhelming! Sensory overload! I like my Dr but I wish he would say things like your Dr said to you. I feel like my dr’s approach is more ‘dry’; he focuses on the side effects, GVHD, etc. Maybe a little too much. I asked him yesterday ‘how about some success stories? That’s what I want to hear’! Oh yes- he had those, too.
And then I get a visit summary on MyChart today & it’s got all this stuff in about tools used to evaluate mortality, what my ‘score’ is & so on. Well I could’ve gone all day without seeing that.
But, to not go forward with the transplant would not be wise for reasons you, I & others have already discussed.
Found out my donor is from Poland, a 24 year old male. ☺️. I can send him a thank you note through my team if I want after I receive the cells.
Yes, I am scared silly & just want to get on with it. Sure am I have y’all to talk to!

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Replies to "Ahhhh Lori so good to hear from you. Yes, I am a ball of nerves. Yesterday..."

Hi Diane, ha, your doctor is a peach isn’t he? I’m sorry he’s not the warm, fuzzy type. I had one of those, too, for my local oncologist. My goal was to get him to laugh…but then I realized his focus was on my health and his concern in making the right decisions to get me into remission…which was serious business. Now that I only return to see him twice a year for active surveillance, instead of acute chemo care, my appointments are much different. There’s laughter, recollections, and discussions about cancer treatment advancements.
So I guess ultimately we’re not going to be BFFs with our doctors but we do have to feel that they have our backs and willing to make the right decisions for our care. (But warm and fuzzy would help!)

BMT, because it is literally life altering, of course it comes with risks. But out of all the people that I’ve helped mentor over the past 6 years, both locally and in Connect, I can only think of a couple of people who ultimately had outcomes less than hoped for. And there were extenuating circumstances with those patients such as serious co-morbidities or blatantly disregarding post transplant guidelines or refusing to take meds. (The last two patients were local to my hometown) Carelessness cost them. There are so many variables that can impact our stories.
You’re healthy, in remission and in a good position to take on this challenge.

Things which can impact a patients smooth recovery are; being compliant with meds and guidelines, keeping a positive attitude, reporting any health changes-large or small to your care team, getting up and walking daily-even if you don’t want to go more than 10 feet, and trying to be mindful about eating protein rich foods and also drinking the suggested amount of water daily, 8-12 cups daily.

I’m so happy you’ve gotten a donor and everything is on track. This is truly the gift of life! My donor was a 20 year old male from the US. I wrote to him several times over the years but have heard nothing from him. I’m a little disappointed that he chooses not to respond. Of course, he owes me nothing but I owe him everything!
I’d love to say thank you in person or to let him know the impact his gift has made for me and my family! I literally would not be here today without him! So yes, write to your donor and I hope you get a response. You won’t be able to meet or know who he is for 2 years. After that, you can both choose to initiate contact. I know of so many patients that have gotten to meet their donors and it’s so emotional!!

For now, think of your new little minions winging their way across the Atlantic Ocean, via courier! They’ll be unleashed into your blood stream and will stroll along the walls in your veins until they find the little specialized pores that magically allow them into bones. They’ll engraft in the marrow, set up housekeep and then those stem cells will do their jobs of developing into red cells, white cells…need those neutrophils! And of course, platelets…and then, you’re back in business. I thought of my new cells as exactly that…minions. Ever watch the movie? Haha.

I love you found out your donor is from Poland. With Be a Match, that only share age!!