2 year Anniversary approaching
January 27, 2005 at 12:55 am #3645TaraMember
Thought I would see who’s out there with the same condition as me…I’m 25 and February 18 will be my two year mark of discovering MDS. I am doing better than I was two years ago with no bone marrow transplant yet (can’t find a match) and no chemical drugs in my system for a year and a half now!!! I work out 5-6 days a week…which my doctors initially said that I shouldn’t…and most importantly…LIVING!!! Hope to meet new friends…January 27, 2005 at 1:27 am #3646sarahMember
Hi Tara, great news that you are doing so well. What is your classification? Are all your counts in normal range? Hope you continue to do well.
SarahJanuary 27, 2005 at 3:35 am #3647Kathy GMember
Congratulations – it’s wonderful that you are living life – that’s the most important thing of all!! I truly believe that exercise and staying active is the best thing you can do – I think it is a tremendous help to my Dad that he is active and goes and does lots of things that require some amount of physical activity like gardening and the likes. It makes him happy and beats sitting around waiting to feel worse. He has good days and not so good but he’s haning tough.
Keep up the positive attitude – it helps more than you know!
KathyJanuary 27, 2005 at 4:00 am #3648doreenMember
Hello Tara… I was diagnosed in april of 2004. I feel pretty good except for worrying and trying to make a decision. What are your blood counts and what have the doctors told you? Do they encourage a BMT. I am on the list for a donor but nothing yet that I have decided on. I currently have low platelets which allows some bruising but other than that feel fine. I too, try and work out about 4 times a week. I force myself to because if the time comes for a bmt, I want to be in top shape… Good luck to you.. I am glad to hear you are feeling great. Keep in shape and keep a positive attitude.January 27, 2005 at 2:07 pm #3649TerriMember
Good News, It is so nice to hearJanuary 27, 2005 at 2:45 pm #3650MarshaMember
That is a wonderful positive attitude you have there. Keep up the good work. I am +68 days post transplant and am walking everyday and riding a stationary bike if I don’t feel like going to the mall or walking outside. Best of luck to youJanuary 27, 2005 at 3:19 pm #3651AprilMember
Tara ~ Congrats to you! I’m very happy to hear that you are doing great and taking control of your life. I will be praying for you and that you can continue down the path that you are on right now! Stay strong!January 27, 2005 at 4:09 pm #3652alexandra7Participant
Hi Tara !!
I’m only 20 and am aroud your situation . Good for you that you are fighting MDS . That is what I’m trying to do . AlexaJanuary 27, 2005 at 6:20 pm #3653JimbobMember
Tara, some types of mds can lay dormant for years and allow a high quality of life. I also believe that proper nutrition, activity and attitude a among the key factors. Keep it up. JimJanuary 27, 2005 at 6:54 pm #3654CarrieMember
I’m so glad to hear another success story!
CarrieJanuary 28, 2005 at 3:00 am #3655SuzanneMember
Tara, Keep up the good work. sounds like you are doing all the right things and that you are one of the lucky ones who are stable at an exceptable level. Hope it continues indefinitely.February 2, 2005 at 6:27 am #3656LisaAMember
Hi Tara – I’m new to this forum, just registered looking to meet other MDS patients as well. I’m 27 and have had MDS for the past 4 1/2 years. This August will be my 5 year anniversary. I’m treatment free as well, go in for blood work every 6 weeks with annual bm tests. I haven’t met anyone with MDS, or read about anyone who has been treatment free. I try to keep my stress levels down and exercise to stay in as good of shape as I can for the future. It’s nice to know there are other people out there who are young and healthy right now.February 2, 2005 at 1:49 pm #3657JoannieMember
I am so glad you are doing well, but am so sorry you have MDS. It seems to me that more and more young people are getting it. In the beginning I thought this was rare and it was mostly an older persons disease. Does anyone have any recent stats on who MDS is affecting. Maybe they will work harder and allocate more funds for finding a cure if it is affecting more young people. This might be cynical for me to say but I have felt that maybe the money hasn’t been allocated to the study of a cure/treatment for MDS as much as it perhaps could be because it only affected older people. It has angered me thinking this, but it seemed to be the impression I was getting. JOanFebruary 2, 2005 at 4:13 pm #3658sarahMember
Yes Joan you are right. The Centers of Excellence we have been to all say the research is limited because it mostly affected older people with other health issues as well. Maybe soon they will realize the research needs to be done to find a cure.February 2, 2005 at 5:31 pm #3659Tara R.Member
I had to create a new Member Name…lost password for old screen name!
Thank you so much for everyone’s support and responses to my 2-year Anniversary topic! It’s so nice to know that there are people out there who understand.
To answer some questions…my WBC is usually about 1.7-2.0, RBC 1.9-2.2, PLT 14-24. I recieve two units of RBC per transfusion which boosts me up to about 10 and that’s as high as I usually get. Lately, however with the addition of disciplined excercise, I had a hemoglobin of 11!!! A new high mark for me since all of this began!
Doreen~I just wanted to tell you that my doctors have encouraged a BMT. I cannot find a suitable donor. I am holding bone marrow drives in my area with the American Red Cross and National Marrow Donor Program. We have gotten a lot of people registered…over 1,100 new registered donors!!! Keep the faith..we’ll find us a match!
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