[marylinda]

I’m a bit of a coward. Is there any reason to know if in remission or not? I mean as far as medical treatment goes? My hemotologist seemed to base treatment strictly on the blood court. Is there any preventative things to do to avoid it getting worse again? I am still extremely tired and out of breath very easily.

As far as I know the anemia was all that was treated and it seem to have corrected itself. I know that’s unusual as MDS affects the way blood is produced. My blood counts have been high enough where I havn’t needed Procrit or transfusions for about 10 months.

It would be nice to know for certain I’m in remission but remission doesn’t last forever so I’d probably have to keep getting blood tests.

The BMB I had were extremely painful and I will do about anything to avoid them. They thought it was partly because I have had 2 spinal fusions with bone removed from both hips. Anyways it was terrible. Both times were in the hospital.

I like to think pray has been helping and know I am very fortunate.

[marylinda]

Thank you all for you responses they are all appreciated and I did go to the search function and researched after reading Jack’s good advise, I just didn’t think of it. It’s sometime hard to just think straight.
Happy New Year All

[marylinda]

That’s good to hear. For 7 weeks my counts were very low and the oncologist was concerned as Procrit 60000 unit was doing nothing, well I had transfusion 12/22/05 and still felt terrible, went to pcp and was hospitalized for pneumnia and put on very high doses of intervenous antibodies and presnisone. Left the hospitl Xmas eve on bedrest and very strong antibiotics and presnisone and on 12/27/05 my hemo was 36 having gone up from 31 when I left the hospital. I feel pretty good but am still on all the extra meds etc. I went to pcp today and have to see a cardiologist for more test but I feel good, not well enough to go out much definitely on the mend.

[marylinda]

A very happy birthday and a great New Year. Better things ahead for you and thank you for sharing your good news. It is uplifting to hear some positive things. This site is wonderful.
God bless you,

Marylinda

[marylinda]

Really great to hear some good news. So happy that she got to enjoy her time at the art museum.
Happy New Year

[marylinda]

Warren just wishing you the very best, I don’t know much about this but I’m sure others will be able to give you some information that will be helpful. I am praying for your fast recovery and a great new year with health and happiness.
Marylinda

[marylinda]

Suzanne,
Thank you so much for sharing your great news, as other have said it does give us a lift. God bless you. happy New Year.

Marylinda

[marylinda]

Dear KarenKaye
I feel for you and am praying for you and your loved ones. I know the pain of losing both parents. My mother suffered terribly from lung cancer and while I wanted her to always be there for me, I was relieved for her when her suffering was over and on one hand I was devastated for my personal selfish loss. My Dad’s death was harder to take as I believe that the doctors simply gave up on him due to his age. He was 83 and became sick. It was a true mess of errors that sicken me to go through. Bottom line though my parents are I believe together basking in God’s love and watching over us.
I am glad that you are proud of your father and recognized the humility and humanity involved in his condition and the love he is getting. You are right to think of giving him a rspectful and good passing. It is so hard. You are strong.
I just got out of the hospital with collaspe lungs and double pneumonia and other complications. I am 54 and have 2 daughters and a 5 year old granddaughter. I try to talk to my daughter about my passing and funeral etc but it is too difficult for them right now. To complicate matter, my life insurance was tied to my work and I was told it would continue to be there but the company was sold and the new company cancelled all my insurances . I’ve been looking into Colonial Penn for funeral coverage. I don’t want my kids burdened. MDS makes everything so difficult but as we learn on this forum, none of us need to go through our pain alone. We have each other and families are wonderful. God be with you. When your Dad seems upset or rile, I’m sure you realize it is his situation and not you and like you, he is frustrated too.

[marylinda]

are you awake when it is put in and does it go in the caroitive artery/ Thank you for your response I really appreciate it

[marylinda]

Kathy, Prayers and well wishes are being sent your way. You have always been with your father in spirit and I believe he knows it. He is at peace now and while in a way you will probably always grieve his passing as I do my parents passings you in time will be able to find comfort in the good memories, cry over the sad but most of all carry his memories in you. It is hard and yes, this time of year where we should have all good times, it is particularly difficult but I firmly believe he will be beside you over the holidays in spirit and love and he wants you to be at peace as he is. God Bless you

[marylinda]

Martin, You are definitely not alone. Like you, none of my 7 siblings are a match for me and there is no match in the bone marrow registry.However, when the doctor told me there was no ,atch, she did preface it with, “All you brothers and sisters do have the same parents though,” and went on to tell how one patient found out her sister was only a half sister and from what she said it cause a lot of problems. Of course, she kept the identity cionfidential etc. I guess lot of people just assume that with 7 siblings there should have been a match.
You sound like you have a well needed positive attitude and outlook on life and enjoy all you can. Good luck. Thinking of the children is both joyful and sad, I know. We all want the best a good loving carefree life for our children and grandchildren but it’s not always possible.

[marylinda]

Dear Karenkay,
My prayers and thought are with you and your family. I personally know the pain and frustration of not only losing my parents but losing a parent and suffering from uncaring medical doctors. I will not go into details but I do know the agony you are feeling. I am assuming that the report on excess blasts was a results of a blood test and not BMB so there is reason to believe things will soom start looking brighter for you and your father. I know it doesn’t seem like much but you are a loving caring daughter and I am sure that has made your father’s illness a bit less burdensome that it would be if he went through everything alone. He is fortunate to have you and I am sure the reverse is true. God bless you and your family.

[marylinda]

I think you know that a call to the doctor is necessary, if he won’t do it than you could. Even to pacify yourself, a call is necessary. Sounds like an infection to me. This is not a fun disease and I am sure that even if your husband does not have a scheduled appt, the doctor would want you to call. I read you previous posts and he was pretty sick with infections before so if I were in your shoes, I would call the doctor. If the doctor says nothing to be concerned about you would have just spent a few minutes of your time for a worryfree day, If he needs to be seen, the earlier the better. Good luck

[marylinda]

Thank you so much for your input. I have checked the medicare site and for my state, New Hampshire. It said I do not qualify for medigap so I called and they are sending me info on supplemental insurance. I think the whole rx plan makes things much worse for many people as free rx become unavailable and rx benefits are not part of supplemental plans. I’m sure they’ll get things worked out maybe next year 2007. I am hoping to be able to pick up something extra but NH doesn’t seem to have much available. Again thank you so much.

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