Husband just dx with MDS RAEB-2 high risk.

[wifey]

This is all new to us. Its been an awful year so far. January he had emergency open heart surgery to replace the aortic valve. Recovered well from that but now is 100% dependent on a pacemaker due to total heart block. April had his gallbladder removed. His low cbc was found during pre-op for heart surgery. We had follow up with Hema/Onc. His HGB and platelets have been falling consistently since. 2 weeks ago he had BMB and we just got the results. This past week his levels dropped to HBG 6.9, platelets 32. He had his first transfusion since heart surgery. He is starting Vadaza this coming week and he’s been referred to transplant team for consult. This man has always been very healthy. His is 66 yrs old and has never ever been a patient until Jan this year. He is in denial but doing what docs tell him. I’ve been doing a lot of research but I know I can’t go by statistics because everyone is different. My husband is the type of man that suffers in silence. So if he complains I know its bad. Its really hard for me because I tell family the truth and he tells them he is fine he just needs his pacemaker adjusted. Ugh! I’m trying so hard not to be frustrated by this. Any suggestions would be very much appreciated.

[William Pearson]

Hello,

I truly understand as my wife would also. I was diagnosed with MDS in 2002. I have had numerous treatments since then. Presently I’m being transfused every 2 week.

[celebrations]

Hi wifey, I feel very sorry about your frustration and there are certainly many different answers to this. I am a MDS-patient myself, but I know that it is a great burden to cope with all the challenges as a caregiver. The co-morbidities your husband has are weird and obviously your husband suffers from pain and unease. This is hard for him and so hard for you to see that. BUT you mentioned Vidaza, and it ist very much possible that this MDS-drug will make the situation much better. Because if it helps, it will help a lot and it will help him for a while.
So my first wish for you is that Vidaza will kick in.
Still you have the option of a SZT, which may lead to a cure.
Try to make only one step at a time. There is hope.
Warm regards, Bergit

[wifey]

Thank you for your responses. My husband had his first week of Vidaza 3 weeks ago and was supposed to start another week today. We have a new Oncologist (Fellow) that is not very good at communication. We received an odd phone call from the Oncology nurse this morning saying the doctor wants to stop the Vidaza. The nurse could only guess that its because of his low CBC but they are higher than the last round. He is getting transfused close to weekly. I put in a call to the doctor to talk to him directly because it make no sense to stop the Vidaza. We have an appointment on Wednesday the 17th with the transplant team. It may have something to do with that but still I think this doctor needs to communicate better. This is not the first communication problem we’ve had with this new doctor. We had wonderful communication with the last doctor. I think we are going to ask for a different doctor. But even bigger hope is that the transplant process will start and he will be in their care from now on. His care is at a fantastic hospital. He is at Scripps La Jolla, Calif. The transplant team is headed by Dr. Mason and he’s been there for many many years with much success. I’ve talked to a few of his patients and they adore him. Lets hope he becomes our new doctor. Again thank you for your responses and I hope it will be soon that I can be of help to others here. I’m still a newbie learning.

[Andre]

Hi Adam,

[devangi]

Yes?

[wifey]

We met with transplant team and the doctor says he is a good candidate. But because our insurance won’t pay for BMT at Scripps hospital we are referred to UCSD. It is a great hospital with a fantastic program. Everyone has been great in helping us understand all the overwhelming information. The BMT process takes time so in the meantime he will stay on Vidaza and receive transfusions. Lets keep our fingers crossed for a good donor match soon.

[celebrations]

"…..but I know I can’t go by statistics because everyone is different."

One of the key sentence of your first post !!!

Seems that the pre-transplant process is going to start very soon. Hope they’ll find a match very soon.

Warm regards, B.

[wifey]

We have a donor! A 10 out of 10 match. My husband is scheduled to go into hospital Oct 17th and transplant on Oct 25th. He had another BMB today and I’m worried its turned to AML already. Since his diagnosis in June he as been dependent on transfusions about every 10 days. We have a lot to do. Its overwhelming but we’ll get through it.

[herman sund]

Hi
I see your post is 4 years old but if you still use the site can you tell me if your husband had platelets transfused after heart surgery that stopped the internal bleed out? I have MDS stage 1 need valve replaced but my counts are under 50K. I am afraid of getting the valve surgery and dying on the table. I have 2 more years maybe without surgery. I am 65
TX
H Sund

[wifey]

Hello Hermund Sund. I haven’t been on this site in a very long time. I just received your post via email. We did not know my husband had MDS at the time of his valve replacement so we were not worried but looking back I noticed he did have platelet infusions. Not knowing any better at the time I thought it was normal for such a big surgery. After he was diagnosed I realized what it was for. My husband did not have a bleeding issue during valve replacement because they gave him the platelets. I always suggest talking to doctors first but I would also say they were very good and had everything under control. My husband recovered well from the valve replacement. Unfortunately he did not do well with the transplant and passed away March 31st 2016 due to complications and relapse with AML. I wish you well Herman. If you have anymore questions please feel free to ask.

[Author]

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