with MDS, ending my life
Tagged: same or similar MDS
May 2, 2021 at 11:29 am #54439
I will be 89 in June. I have MDS for 18 months.
I also have Diabetes,, Asthma and Copd.My platelets a very low, so I bleed easily. When I became ill with MDS I had a tumor , stage one removed from my colon, My esophagos had food impacted and had to be surgically removed. It was then the performed a bone marrow and found I have MDS. Also , strangely, all my fillings on my teeth fell off.
I have had 54 blood transfusions or more in the last year and a I get weaker but can still cook a meal , and care for my needs. a
I have joined hospice.
I was told I could end my life by not getting any more transfusions . When my Hemoglobin got to about 4.00 I could use morphine to help me breath. It would take about a month to pass to the next level.
I wish there was an easier way, like go in my sleep, but that will not happen.
Anyone out there with the same symptons. Please shareMay 2, 2021 at 1:03 pm #54440debbie sternParticipant
Medical aid in Dying is legal in 10 states for terminally ill people in the last 6 months of life. Check with “Compassion and Choices”, an organization that supports Medical Aid in Dying, to see if it is legal in your state. If so, and 2 doctors sign off, you can get a medication prescribed that will give you a peaceful death.
Best of luck in the rest of your journey.May 3, 2021 at 9:24 am #54441Pat LawsonParticipant
My husband passed away in in January. He had been receiving blood and platelet transfusions weekly up until he entered Hospice. Once he started having Hospice come to our home he stopped transfusions and he passed away in 2 weeks. There isn’t any way of knowing how long because everybody is different. My husband battled this disease for 2 years. Once treatments quit working and he didn’t have any other options he was transfusion dependent for 7 months. Right after Christmas he made up his mind that he didn’t want to live like that anymore. He was 66 years old. I miss him so much but I am relieved that he is free from this disease now. Please surround yourself with loved ones. Talk to them honestly about how you are feeling. Say things from your heart that may be left unsaid. God bless you and bring you peace in whatever decision you make.May 3, 2021 at 9:56 am #54442
Thank you so much for sharing about your husband. I understand, my platelets are low, but I only get blood.
I am also tired of it all. My low platelets prevent me from getting a port, and I’m running out of veins for transfusions.
I’m divorced so my two daughters take turns taking care of me.
Thank you again, this is the info I want to hear. I figure it will take me a month to move on, after I stop transfusions. Hospice is great.May 5, 2021 at 9:18 am #54451Kathy StermerParticipant
I am 63 and have been dealing with this disease for 4 yrs. Been transfusion dependent 2 years and have now transitioned to AML. Am now at a point where I know I’ll not win this battle and am going on hospice going forward. No treatments have worked and gotten to the point where blood products are now just a bandaid fix. Am peaceful with my decision and have love and support around me. Peaceful journey to you allMay 8, 2021 at 1:14 pm #54492
Kathy, thank you for your response. It meant a lot to me having you share your honesty.
The only treatment I receive is blood transfusions. After my last transfusion of two units my hmg went down
to 7.6 in 5 days. so in a week after ,(yesterday 5/7 I had 2 more units of blood )
As I’m 88, almost 89 in June, and getting weaker and feel okay with my dicision to stop transfusions a month or 2.
I hope you don’t mind my sharing this with you, but I feel that your response gives me more clarity and support.
I feel that we don’t really know what is on the other side. I also send love.
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