MDS and Altzeihmers Disease

Please post here your experiences of MDS as a patient, carer, family or friend

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JeanetteP
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MDS and Altzeihmers Disease

Post by JeanetteP » 22 Apr 2013 08:21

My 84 year old Dad has had MDS for about a year and half now. Although I only found out what his condition was called about 2 weeks ago. He also has Alzheimers. Both were diagnosed at about the same time.

Since his diagnosis he has been having monthly transfusions of 2 units. However, at Easter this changed firstly to a 3 weekly transfusion and then another transfusion the next week! I rang his Consultant who told me that his platelet count was 30 and his Hb was between 7.2 - 9. They had tried to put him on 3 weekly transfusions but it didn't work, hence the extra transfusion straight after the 3 weekly one. He told me that we need to be considering what is the best course of action now for my Dad. I believe he thinks stopping the transfusions and putting Dad into a hospice is best for him given his Alzheimer’s and the fact that even with regular transfusions he is very anaemic and has a low platelet count that could cause him to have a serious stroke or massive internal bleed. He also said there is a possibility that Dad has bowel cancer or is bleeding internally.

At the moment Dad had a transfusion on Friday, 2 weeks after his weekly one. I am meeting his Consultant on Wednesday to discuss the situation.

I was wondering if anyone here had any similar experiences and what people's views are on what to do for the best?

Thanks

Jeanette
janetstanford
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Re: MDS and Altzeihmers Disease

Post by janetstanford » 22 Apr 2013 18:16

Hello Jeanette
Welcome to the site I am sorry to hear about your dad very concerning and a stressful time I would suggest you ring Sophie she can guide and help you and will answer a lot of questions you must have this is the best option :)
Being transfusion dependent i have to say your dads HB was very low and this must be a worry if mine had got this low i would have been barely able to walk up the stairs so i can understand the need for 2 transfusions ...
Other than that i can not comment i believe you are doing the right thing by contacting and discussing the situation with his Doctor this will help you find answers to the issue /choice
As i say i believe the way forward is contact Sophie but keep us updated
Good luck Janet
JeanetteP
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Re: MDS and Altzeihmers Disease

Post by JeanetteP » 22 Apr 2013 21:25

Hi Janet,

Thank you for replying. The thing that I am worrying about the most is stopping Dad's treatment too soon :cry:

I never imagined in my wildest dreams I would have to decide whether letting my Dad die would be a decision I would have to make :(

I will phone Sophie.

Thanks

Jeanette
chris
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Re: MDS and Altzeihmers Disease

Post by chris » 23 Apr 2013 14:10

Dear Jeanette

You have some very difficult issues to face and having other illnesses as well as MDS can make treatment decisions very complex. Having blood transfusions may become frightening as can any medical procedures with somebody who has Alzheimers and it can feel unkind to impose procedures on somebody in this situation - even if that technically is withdrawal of treatment.

I hope that you can have a balanced discussion with your father's consultant which might help you with the difficult decisions you will have to make. It might be worth talking to a Macmillan counsellor too?

People can have very strong feelings about supported dying but, in the end, everybody does what they feel is the best for their loved ones and should not feel guilty whatever their decision is. I hope you can get support from others in your family and friends at such a difficult time.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
JeanetteP
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Re: MDS and Altzeihmers Disease

Post by JeanetteP » 23 Apr 2013 19:49

Hi Chris,

The transfusions don't bother Dad - apart fro the fact the he pulls the canula out! He never remebers even going to hospital.

Thanks for suggesting the Macillan counsellor - I ight well need it after tomorrow.

Thans again

Jeanete
JeanetteP
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Re: MDS and Altzeihmers Disease

Post by JeanetteP » 24 Apr 2013 18:06

Hi All,

I am not sure I should share this with you all here, but you did ask to be kept informed.

I am just back from seeing my Dad's Consultant - or at least one of them from the team. Dad's Platelets have dropped from 30 to 18 in 2 weeks. His Hb is 9.3 despite just being transfused with 2 unitsand his neutophils are 0.8. They feel that his bone marrow as stopped working and that he is at high risk of a massive bleed or infection. They feel that even with continuing with his transfusions he won't survive to the end of the year. What shocked my Brother and I was that when they stop his transfusions they expect him to die within 2 weeks.

We agreed that he should have a transfusion a week on Friday unless his GP feels it isn't helping him. Then the transfusions will stop, the palliative care team will place him either in a nursing home or hospice and he will be made comfortable and kept pain free until he dies.

On a positive note, since we learnt of what Dad's condition actually is and found out more about it, my Nephew has decided to do a bike ride to raise money to help the research. So some good will hopefully come out of this.

I am still geting my head round how quick it will be. I don't have anymore questions just concerns that this is the right thing to do for him. Its a very strange place to be right now.

Please don't feel sorry fr me, to be honest, since Dad has had Altzeimers he really died a while back in reality, so I don't feel sad, just concerned.

Thanks

Jeanette
janetstanford
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Re: MDS and Altzeihmers Disease

Post by janetstanford » 24 Apr 2013 19:08

Dear Jeanette
I am so sorry to hear your news i am pleased you felt able to post and tell us of your situation you can only do what you believe to be right for your dad with the information you have from his doctor and what you see day to day and how he is in himself
i can not imagine how hard this is for both you and your brother at this sad and stressful time
I am please you felt able to trust us enough to post and hope in some small way it helped you
If you need us we are here to help in any small way we can
Janet
Sarah Reakes
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Re: MDS and Altzeihmers Disease

Post by Sarah Reakes » 24 Apr 2013 20:03

Dear Jeanette,

I have been reading your postings and can only echo what Chris and Janet have posted in reply up to now.

I am truly sorry that you and your brother are having to face this, but I guess that's what families have to do to support each other at times like this, and it's good that you do have each other. As long as your Dad is made comfortable and as pain free as possible that's all anyone can wish for him.

My thoughts are with you all, and as Janet said, thank you for sharing this with us.

Take Care now.

Sarah
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
JeanetteP
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Re: MDS and Altzeihmers Disease

Post by JeanetteP » 03 Jul 2013 10:10

Hi All,

I just wanted to let you all know that Dad passed away peacefully on 20th June 2013. He kept gong for 6 weeks after his last transfusion which suprised everyone.

Thanks for all your messages of support and good luck to all of you with your conditions and treatments.

Jeanettex
chris
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Re: MDS and Altzeihmers Disease

Post by chris » 04 Jul 2013 22:52

Dear Jeanette

Sorry to hear this sad news and my condolences to you and your family. It must have been a horrible blow that he had MDS on top of the Alzheimer's and it must have been quite upsetting for him to go through the procedures and transfusions.

My best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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