MDS Myloid Displastic Syndrome

This is a discussion on MDS Myloid Displastic Syndrome within the Ask a Professional forum; Hi, this is my first post. My wife has had MDS for 8 years, and ...


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Old 11-06-2009, 01:44 PM
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Hi, this is my first post.

My wife has had MDS for 8 years, and developed full blown dementia as well as Parkinson's. whe has been blood transfusions for 8 years along with Procrit injections to help her whenever she drops below 8 or less. She has been admitted to Hospice 7 weeks ago and there will no blood transfusions or procrit shots ever administered again.

She is doing remarkedly well with oxygen levels of 98 and heart rate of 115 (normal) She sleeps 18-20 hours a day and has 24 hour care to turn her, feed her, diaper her, etc. her only medication is lasic, atavan, stool softners and tylenol. She eats 3 full meals of pureed juice yogurt fruit etc and snacks, all by syringe. Temp is 98-99.

My question is how will she end as her Hemoglobin level drops to unsustainable life levels? What symtoms will she exibit and will she have any pain?
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Old 11-06-2009, 04:42 PM
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The hospice personnel that are working with your wife will be able to help you understand and cope with the changes that will develop as your wife's condition becomes more advanced. The symptoms that she will experience will be related to the decreased oxygen carrying capacity of her blood. While her oxygen saturations look good at 98, her heart is having to work harder then normal. The red cells that are present have to make more frequent trips to the lungs to pick up oxygen and then carry it to the rest of the body. This all puts a strain on the heart, and over time can cause the heart to fail. The decreased oxygen levels will also have an effect on the lungs, causing shortness of breath. It can also induce or exacerbate underlying lung problems. This may lead to the development of pneumonia and respiratory failure.

The wonderful thing about Hospice care is that the nurses are very experienced in helping the patient to remain comfortable as these changes occur. Pain may not necessarily be a big issue for your wife, but if it is, this will be addresses. My heartfelt sympathy goes out to you and your family as you go through this process.
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dementia, displastic, mds, parkinson, procrit


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