No more transfusions, how long, what happens?

[Kathyete]

My mom has MDS and she has been taken off of transfusions. That was 8 weeks ago, 2 weeks ago she had a hemoglobin of 5.8. I don't know how she does it but she can still get up and walk a little. She is in a nursing home and takes her wheel chair down the hall. Yesterday her oxygen was at 94. I know what the finale out come will be but can anyone tell me what to expect between now and then?
Mom got sick and almost died she really has not been herself. She does not realize that she is sick. She thinks that because she can walk that there is nothing wrong with her. All she wants to do is come home and we just can't have her here, the reasons are just to great to list.

[Zoe's Life]

Kathyete,

I am sorry you are having to go through this. I am wondering though, why have they taken your mom off transfusions? Is there something else going on?

I recall a similar post on another board. If I recall the answer was that the patient simply started sleeping more and more. That is all I can recall.

I hope you are taking care of yourself. It sounds like you really need it.

Zoe

[Ruth Cuadra]

Kathyete,

Zoe is right that MDS patients often just get sleepier as their hemoglobin counts decline, but if they also have low white counts, then the possibility of serious infections can be significant. This may be particularly true for your mother since she is in a nursing home. If the doctor says she is really at the end of life, you might ask if there is hospice care that could help her and help you.

Hope this helps.
Ruth Cuadra

[Margie]

Kathyete,
I would like to support what Ruth said. Please at least contact hospice care. I believe this is something that is covered by medicare and would be so much help. I have seen hospice in action several times, and it is a great support to the patient and family alike.


age 69 myelodysplasia, transfusion dependent

[JAC]

Margie - I am new to this so I hope I'm doing right. I have MDS since 1/06, was on Revlimid 10mg. lost gallbladder and reduced to 5 mg. in 2007. TX free for 10 mo. Problem with counts and needed TX again so off Rev. I note you are TX depend. I am getting TX every 3wk. Have you tried anything else? I am almost 2 yrs. older than you. Have you or anyone who reads this heard of a Dr. in Germany who is having success with Rev. 3 mo. on 1 off?

[Margie]

I have only had Aranesp. It caused no side effects that I could tell, but after taking it a year or so, it just did not raise my red count. The hemotologist had to take me off of it because medicare won't pay if it doesn't work after a certain length of time. I have not tried any other medications; the doctor has mentioned some. My counts are just gradually doing down. However! There are a lot of people on this site that have gotten positive results with certain medictions. Just keep working your way around the site and you will find them. I am just now getting the hang of it; that is why I did not pick up on you post sooner.

myelodysplasia 5 1/2 years refractory anemia transfusion dependent
HGB below 7 today when transfused. WBC count back up to 2. Platelets 31