late stage symptons

[lkrumel]

My father, 79, was diagnosed with MDS 3 years ago. I’m not sure of exact type/stage except all of his counts were low/abnormal. He was on procrit for approx 3 months with no sucess so had been getting platelet and blood transfusions approx. every 3 weeks. March, 2004 he got a bacterial infection in his leg and had to have it amputated below the knee. Was hospitalized for 6 weeks and was on strong antibiotics and received transfusions while there. Was doing fairly well and required no platelet transfusions, only blood transfusions every 2-3 weeks. In January, 2005 got pnemonia, had congestive heart failure, liver enzymes were elevated. Was hospitalized 1 month. He is currently in skilled nursing care but has not really bounced back. Weighs only 70 pounds (normal weight was 110 – he’s very small!)Has no appetite, gets transfusions weekly, but sees no increase in energy after receiving them. I’m thinking he is in the later stages of the disease but wondered what other symptoms people have experienced in their later stages.

[Donna]

Hi lkrumel,
Everyones experience is very different. My mom was doing quite well until probably May/June of last year. It started with extreme leg cramping, bruising. From there her breathing was becoming more and more labored it was very hard for her to take a good deep breath. She was beginning to lose weight because she had no appetite but was always very thirsty. Over the couple of months it became increasingly difficult for her to move around, every ounce of energy to move from one chair to another. She began swelling, as all of her organs were beginning to shut down on her. For Mom, as hard as she fought, it eventually won. She put herself into the hospital the night before she passed away. I’m so sorry to post these details, but I also wanted to know what to expect. but, like I said, everyone is very different. I should also point out that mom wanted no treatment other than her regular transfusions. In my Mom’s situation, I feel she truly made the right choice, because her last year she was able to do the things she wanted to do — she didn’t begin to get very ill until 2 months before she left us.

Take Care,
Donna

[Neil]

Your father has had a very rough time recently,
A leg amputation.
Congestive Heart Failure.
Pneumonia.
Liver problems.
3 years of MDS. Classification?
79 years old.
If his Hemoglobin has been low, it is probable he is not getting enough oxygen and protein to his body. Patients usually do not succumb to MDS. It is the complications the disease creates in other parts of the body. Heart, liver etc.
life in a nursing home can be tough unless he is getting a lot of attention.
Have you thought of hospice? It can make conditions much better for many people.

[April]

My mom-in-law was in a nursing home and she did not do well there either. She didn’t eat because she hated the food. We would have to take food to her that way we knew she would eat. Mom ended up with AML because of the MDS that she had. She also opted for no treatment just like Donna’s mom. She had a good couple of months but she was put in the hospital in December with an infection, pnemonia, etc. She ended up having a heart attack while she was there because of all the meds she was on. She finally decided not to receive anymore blood or platelet transfusions. Her last transfusion was on January 25th or 26th and she was doing ok up until about 2 weeks ago. She is now swelling and unable to get out of bed or hardly talk. She is not taking in any fluids or eating. She just wants to lay there…It’s so sad to see..

But like everyone has said, each person is totally different..but this is what we are going thru right now…I hope it helps some…

My prayers are with you and your dad!!!

[Nancee Noble]

I have been diagnosed with MDS 18 months ago. My HMI 10.4 my Platlets 18. I have started having a lot of pain in my legs when at rest. Is this another step towards the “end”

[Author]

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