scared and wondering what's in the future

[Debbie S]

I am 8 months diagnosed with aplastic anemia and my platelets bounce around the 20's and I get blood transfusions once a month. Do I di this forever and how long is forever. I am wondering how long I'll live and just don't know. I'm lost in depression and lonliness. Is anyone out there in the same boat? What do I do? Debbie S

[kertkkey2007]

I feel for you and I'm so sorry that you don't have all of the answers right now but, I feel sure that with this site there will be someone that can give you more information. Kert has MDS and his WBC and PLT are the ones that bounce up and down so bad. He is on Dacogen and it's working great for him.3 years ago We felt like you do now but, the more you get educated on these diseases the better you will feel.....I'll keep in touch.

[Anne]

Dear Debbie,

Well, I have MDS TOO. And have just about the same questions you have. They are presently treating me with Vidaza. Have not had a transfusion since last May. I hope this info. can help you. I also get very depressed. But I noticed that when I exercise (eg. walk on my treadmil for at least 10 minutes twice a day) it helps my depression and makes me feel physically better.

Best regards, and best of luck for all of us.

[Ruth Cuadra]

Hi, Debbie.

Welcome to Marrowforums.

When I was diagnosed with aplastic anemia in 1996, I looked everywhere for information about what caused the disease, what the treatments where, what the side effects of the treatments might be, the life expectancy and so on. Older books and library materials painted a grim picture. But online I found more recent and encouraging information. If you have not already done so, you should order the basic information packet about aplastic anemia from the Aplastic Anemia & MDS International Foundation (toll-free at 1-800-747-2820 or at their website). Having the details helped me feel more in control and better partipicate in the decision-making with my doctors.

Recovery from aplastic anemia can be complete or partial and may last for years or only a few months. Patients are very individual in their responses to treatment. Are you receiving any treatment beyond transfusions?

It's also important to have a doctor who understands this disease and/or is affiliated with a large university/teaching hospital. Where are you being treated?

You'll find lots of people on this site who understand what you're going through. Please let us know what questions and concerns you have.

Regards,
Ruth Cuadra

[Debbie S]

Ruth, thank you for replying. I have had ATG and take cyclosporine daily. Genrally, I am doing ok. But my problem is life expectancy and resuming my old life. I'm just not the same person I used to be. I'm depressed and have no motivation. I used to be a full time Red Cross Volunteer and now things are so different when I go to the office. They don't have projects for me, I think because they can't depend on me because I never know when I'll be out sick or needing blood....I have a great doctor, he's an expert. He says I could live quiet a while but I don't take comfort in that. I can't get used to the idea of being sick. I just feel very confused. But I'm trying to hang in there. Debbie

[Jbsx19]

Debbie,
Hey,..Listen, the first thing you have to do is admit that your life has changed from what you were used to. People don't get this disease. How can they ?? When it's a one in 2 million and most people don't even know what your bone marrow does> They just don't get "it". And "you don't LOOK sick". people will look at you differently and I know that you don't want to be defined by your illness. This is a difficult illness to have, no doubt, that's why you talk to people and relate to people who DO understand. Try not to get angry at those who dont and I know how tired you get of explaining it to people. As far as "Life expectancy" Who knows"" Like I said..at one in 2 million, there really arent enough statistics to get a guarantee. but where in life do you?? So just be aware ...knowledge is POWER. 20,000 platelets isnt sooo bad. Just be careful...no aspirin,try not to get injured or cut,don't bend over real fast(brain bleeds can happen)see your gyn ,DON"T take medications that may effect hormones(The lastest studies suggest hormones may be relaled to AA),Red Bood cells...you'll know if they are low...shortness of breath,pain and throbbing in ears and head due to lack of oxygen in your organs...You'll have no symptons from the WBC ..just be aware of what yours is..You should be taking your temperature..anything around 100-101 you should take an antibiotic that you have been given for home( I had Levequin) and get to the ER. Your body naturally has bacteria and fungus that you can't fight off with now WB cells. Watch what you eat..fresh fruit and veggies,yogurt, andything that may have bacteria is a no no. Like I said Knowledge is POWER. You can take your power back over this disease. And lastly, go to NIH website at WWW.NIH.gov and read also click on the right side and see what clinical trials are being offered. Don't be afraid of clinical trials. You will NOT be a guinea pig...You will get the Standard care and then the clinical trial...not a "placebo" You pay for your initial visit to NIH (if admitted to a trial AAMDS will reimburse you up to $500 for your flight)After that NIH pays for your flights back and forth and part of your hotel>There are shuttles from most of their linked hotels right to the facility.Anyway,..I know this is scary, but you want to have people treating you that you trust and answer all your questions. I was at NIH for a month...ALONE...my husband stayed in Florida to care for my kids and home. I managed ,made a new family and discovered how strong a person I really am.Hope that I helped. Contact me anytime. My best,...Judi

[Debbie S]

Thank you, Judy. You're right my life has changed. I was so full of life before. I'm very tenatitive and careful now. I cried all day yesterday and it didn't serve any purpose. I'm still getting used to the idea I have this disease. I go to he hospital every Monday and Friday to get my blood tested and it takes hours. So I get pretty depressed but I'm going to have to toughen up because this isn't going away. Thanks for your support and I'll keep you updated. Debbie S

[Jbsx19]

Debbie,

Your Welcome,of course..sorry about all my spelling errors,..I'm at work and trying to rush. Anyway,..I'm just surprised that you are not seeing a Hemotologist who has a Cell-Dyn 1700 (CBC Machine) right in his office. My lab appts at mine take about 10 min. In and out unless I have to see him for a physical (check my spleen and lymph nodes etc...).I can help you sort out side effects and such. I certainly didn't mean to make it sound that I had an easy time of it. Plenty of side effects,sent me into early menopause, etc...

There is no cure for this, you can be put into remission from the drug therapy. Which is considered a fix not a cure. The only cure (so to speak) is a BMT. It's just semantics,..I can live with being "fixed" as well as being "cured" which is why I opted for ATG rather than the transplant.

I am currently in 3 protocols at NIH, the initial ATG treatment, a genetic research one (mine is not genetic ,only 20% of AA is) but they want to do further research on my genes and why I recovered so quickly and completely, and a third to see if after remission they can harvest enough stem cells to freeze (free forever at NIH) in case you come out of remission they can do a stem cell transplant with your own cells. Cool,huh?? I however did not produce enough of those type34 cells at one year out. They told me to wait awhile and try again. I'm debating...It's pretty involved and I have to commit to at least a week up in Bethesda to do it. 5 days of Neupogin shots to up the stem cell production and then in patient for the stem cell harvesting since I need a catheter in my groin. My arm veins were not liked by the infusion people.Not a fun time but well worth the effort ,I think to have your own stem cells frozen forever. We'll see.....
Hope you are considering all your options..... Take care,..Judi

[Wendy Beltrami]

Debbie-
Is there any chance you could attend the AAMDS Patient and Family Conference in Las Vegas that is coming up in a week or so? I can practically guarantee that you will come away with your spirits lifted and lots of new friends that UNDERSTAND what you're going through and have either "been there" or are going through it now and can share the journey with you. It makes a WORLD of difference to make these connections. This forum is just a small example of how much it helps to network, share information and give and receive support.

I'm so disappointed not to be attending myself this year, but since it is scheduled a little later than usual this summer, it just doesn't work with my job/kids schedule. It always gives me new hope and new information.

Wendy/mom to Grant
Age 15 1/2 dx AA 12-4-98

[Debbie S]

I am going to the conference in Las Vegas and I sure hope it helps me! I'm very nervous and concerned. My ferritin level is 1057 soooooo......Glad Grant got this Exjade Congrats to you.. Debbie S

[bwf]

Debbie - So sorry for your diagnosis. My Mom has lived with AA now for 12 years; acquired at age 58.

One thing to consider (and this is easy for me to say, as I'm not the one going thru it) . . . is perhaps being aggressive with the disease while you're younger. My Mom is in a position now where her options are limited, due to her age . . . and some further complications of the disease, as it's progressed. She now has MDS. Even though she is 70, it still seems so young to have to give up on life. I'm hopeful they can do something. I wished she had maybe attempted BMT when first diagnosed (again, easy for me to say). With AA or MDS, the deficient marrow is THE problem.

Keep up your spirits as best as possible. I mention the 12 years with the disease, because, I believe at first diagnosis, her prognosis was not as rosy. But . . . stranger things happen. I think the human spirit and "will to live" and enjoy life have a part to play in all of this. And she has lived a mostly normal life during the last 12 years - traveling and such.

She has been treated by a well-known hematoligist in Boston (currently a teaching hospital) and is a member of the Harvard Medical School. So, I think she's in good hands.

Best wishes . . . and keep the faith!!