How do I know when the,

[Anita Finer]

transfusions are not working and I’m near the end.
I am 89 have had MDS for about 16 months. My hgb drops every 10 days.
I have shortness of breath , but I’m also asthmatic. I am beginning to feel less interested in food, but still a healthy appetite.
Legs swell, white corpasules, reD ,Platelets are way down. I sleep lot, and am always fatigued. It is harder to find a match for my o positive blood
Am I near the end?
I’M ASKING SO PLEASE BE STRAIT WITH ME, I WANT TO KNOW,IS IT THE END AND WHEN DO I STOP TRANSFUSIONS. YOUR OPINION PLEASE
THANK YOU
ANITA

• This topic was modified 2 years, 9 months ago by Anita Finer.

[Amy Clark]

Anita,
My friend, it seems that your question would best be asked of someone who knows you and sees you regularly. All of us here are not in that position and I doubt many of us want to speculate on what the “right” answer is for you. That being said… Yes, what you describe can happen at the end of this life with MDS, but it can also happen during treatment. If transfusions are your only treatment, then I believe that you (with input from a doctor or a son or a daughter) can decide when the transfusions are giving too little benefit. For some persons with MDS it is when the transfusions only last a few days, for others it is when the transfusions don’t give any benefit at all. I will pray you can make a decision in peace about them. I will pray you are also able be close to God no matter what happens. Sending hugs and prayers.

[Ilona Rozsa]

Dears. My husband’s MDS progressed to AML in the beginning of July. He was first hospitalized for fever for for days. In four days he received 4 units of blood. Came home for 4 days. His oxygen dropped to low 80. Back to the hospital. While there, we decided on hospice care. He came home on Friday, was given the last two units of blood. Passed away on Sunday morning. Heart is braking. He was a young 77.

[Amy Clark]

Ilona, I am so sorry to hear that your husband passed away a few days ago and that your heart is breaking with grief. I am praying for you and hope that in time the good memories with him will be more powerful than the sadness without him. Sending God’s peace and consolations to you. I am glad you could be with your husband when he needed you. God bless you, Amy

[Ilona Rozsa]

Dear Amy, thank you for your kind words. May God bless you with joy.

[Pat Lawson]

Llona, I lost my husband in January. I feel your pain. When he stopped his transfusions he only lasted 13 days. If you would like to talk please email me at lawsonpy@gmail.com

[Kathy Lynch]

Thank you all for sharing. It is SO important! I was diagnosed 3 1/2 years ago in a routine blood test at the age of 65. NO symptoms. I was told I had LOW grade (silly me I thought that meant it was not bad) and told I had roughly 5 years. I’ve been on ARANESP for a year. My numbers have been holding… but I now have daily headaches, not a big appetite (but NOT losing weight 🙁 lol!!!) and I am really tired 24/7. Blood work next week…
One of the most frustrating issues is the ending. I want to be as prepared as possible, to make it as easy as possible for my family. I 100% believe in Hospice…but I think most of us want a heads up on the last leg of our journey.
Big Thanks and Hugs!

[Lisa Grande]

Hi- My MIL was diagnosed with MDS in March timeframe. She was doing transfusions for blood and platelets every 2 weeks. Then it changed to every week and now we are every 2-3 days. She had a transfusion last Friday night (6 days ago) but when she got home, she started dry heaving. We determined they did not give her Benadryl prior to the transfusion but not sure if that was the cause. Then on Sunday (2 days later) she started running a fever and went back to the hospital. They told us that she does have a UTI but they did give her more blood. Last night (Wednesday) we heard that it may have progressed to AML and that the infection she has may be in her blood. She is still in the hospital getting antibiotics. Still has a fever. When we spoke of hospice a while back she was not ready to stop transfusions and if you go into hospice they won’t do anymore. Now we are where we are at. I don’t know what to expect. Can she beat this infection while she is in current state of likely AML? If she does beat the infection I read there is no treatment for the secondary AML. I guess the question is, if she beats the infection and comes back home but with the AML, will transfusions still work and allow her some days of comfort? Or with AML, will transfusions no longer work (albeit they only worked for a several days before needing another)? How long can someone live with secondary AML with no treatment? Thank you all for your help. This page has been very helpful to me and how I counsel my husband who is devastated that he is losing his Mom. And I will add, the strength of her caregivers during all this has been amazing but it is SO HARD. This is a horrible disease.

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