Anyone dealing MDS and how are you doing?

My brother brought me two cases of bottles. I will try those at room temp. At first room temp unsettled me, so my caregivers suggested cold. They drink cold. This water is a work in progress. One of my caregivers nagged about water. Funny how they want to help. One drinks black tea all day, the other thinks she drinks a lot of water. I would say sometimes we think we do. I so agree on humor. Thank you for the message,

It's great that you are getting educated ahead of time - it helps you ask more pertinent questions. It can't hurt to get a 2nd opinion as well. My hematologist recommended that I do, and I was glad to have another set of eyes and another source of information. Is LEVINE a Center of Excellence? If not, I would recommend finding one near you and getting a 2nd opinion. God bless you in your journey!

rrivory: Thank you for your comments. LEVINE is a center of excellence. I am going there for consultation and a second opinion.

Experiencing fatigue that makes living alone a bit of a challenge

donnamae,
This thread has been quiet. I was diagnosed a year ago Oct with MDS, and based on my BRCA2 mutation and breast cancer, my MDS had a 5q deletion and another genetic mutation. I never had symptoms with my MDS. Just my blood numbers. I had a bone marrow transplant last April.

How did that go and how are you feeling now?

My Wife has had the transplant done and is doing well all things considered. She's about 3 weeks post transplant. She is having problems finding foods that don't upset her digestive track.

Good morning, @scottcanser and welcome to Connect. Oh gosh, you and your wife have my empathy with the food situation after a BMT. My husband had the same challenges with trying to get me to eat! Food was not my friend either…I was nauseated, didn’t have a sense of taste and the months of chemo before transplant did away with my taste buds.

What I found that helped was not sitting down to a full plate at mealtime. My husband, bless his patience level, made foods ahead of time for me to graze on daily. He had containers or baggies of PJB bites, pieces of plain broiled chicken breast, pieces of Swanson canned Chicken breast, bites of string cheese, scrambled or fried egg (not hard boiled…harder to digest), crackers, bites of banana, apple, applesauce, canned peaches. Sometimes pudding would work or a smoothie. Lactaid ice cream was a winner!! But even then, sometimes I could only eat something once and then it turned me off again. So it’s hit and miss on food
But do stay away from things with tomato sauces or anything spicy-hot, greasy, peppery.

There are a growing number of us in the BMT transplant group who share our stories and experiences. Would love to have you and your wife join in with us. You might find some good information to help you along with way with these discussions.

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~Snapshots of Hope: Life on the other side of Transplant:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Is your wife still in a clinic setting or is she an outpatient?

Hope they can get your headaches under control and treatments work for you.

@donnamae90 Fatigue is a problem with MDS. I too live alone. I have accepted that I do not have the stamina or strength that I once had, but I still have a good quality of life. We make changes. This year, I gave up motorcycling after 22 years of riding. I felt that I should not ride when I was tired. Fatigue is still present but not as bad since I am now stabilized on Revlimid. Have you started treatment? Where is your Hemoglobin at?