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.May 17, 2021 at 1:48 pm #54513
When does MDS become ADL?June 5, 2021 at 3:29 am #54583Kathy LynchParticipant
Dear Anita and all who are thinking about stopping treatment, We each have our own journey. The advice to share your needs and wants with your family and close friends is important. Saying all that we need to say….telling those we love how much they mean.
I helped my beloved step-father make his decisions before he got too ill from bone cancer. While is was hard for our family , it was a time of great love and peace for all of us.
I am 68 and in my 4th year of the MDS journey. While I am holding my own with Aranesp the day will come when I too decide that I am finished with the journey, if God doesn’t decide first. I can only hope I have as much grace as you all and my “dad” showed. Thank God for Hospice…they can make the decisions and journey so much easier…June 5, 2021 at 12:40 pm #54584
This is a very confusing disease. My platelets are down to 25. My hemoglobin went up to 8.3 It was low a week .
I want to end the transfusions as I’m 89 as of June 9th . I am not afraid of dying but I am afraid . Of what I don’t know.??????? Maybe laying in bed waiting for death.June 6, 2021 at 10:43 pm #54585Gerry DonnellyParticipant
I read your posting. I wish I could offer advice, but I cannot. But what I can say is your are obviously very alert and mentally competent, as much as I, I dare say. With such a active mind and insight into your own situation – try the best to make whatever you can do, dream, sleep, watch TV, keep that mind of yours agile.. It is pleasing to see you can post messages on this forum, so maybe spend time search Youtube, searching for videos of places you have been and so forth. Let time and nature take it’s course and make yourself comfortable and mind as active as you can… I sincerely wish you the best …….July 17, 2021 at 6:10 pm #54750Diana BraniganParticipant
I am 69 years old and recently diagnosed with low risk MDS , I also have essential tremor , since I was 15, and another rare auto immune disease , (lichen sclerosus) which can lead to other serious issues. I have already discussed this with my family and I will not take any steps to further my lifespan. If it’s my time then so be it. I put my trust and faith in God. I wish all of you the best. God blessJuly 18, 2021 at 11:32 pm #54753Kathy LynchParticipant
I’d like to offer to anyone who is wondering if or when to call Hospice… I would say call a couple of them near you. Meet and discuss what they offer. It is not just the end of life decisions, they are also for the journey, even when it is not expected for months. They can be very helpful with so many decisions.
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.