I could use some advice!

[Krista]

Hi, my name is Krista and I'm so very happy to have found this site today! I live in Columbus, Oh and was diagnosed a year ago this month. I am 21 and in my junior year of college. I must begin with honesty: I am terrified. I was doing quite well and responded to all treatments that were given last fall (ATG with cyclosporine) and have been on cyclosporine ever since. I know this must be all so normal to all of you, something you've gained an understanding of, but I haven't quite gotten there yet. I have done a lot of crying this week because I found bruises on my leg for the first time since I was last treated, and demanded a blood test. My platelets dropped to 24 since a few weeks ago when they were 134. I don't have an appointment with my hematologist until friday, which leaves me sick with worry about his decision. He didn't even schedule a blood test, just an appointment, which makes me think he knows his decision and isn't concerned. I am very worried, because I can already tell I'm in trouble and in need of serious medical care. The nurses said he didn't seem too worried about the situation, and I think my mother is trying to take her cues from them. Oh, I am so tired of the uncertainty. I feel like I am just waiting for the day they have to admit me again. I feel very isolated, just now. I know I'm very lucky to have done so well so far, but don't want to miss out on any more school. I don't know if I should be making arrangements for a hospital stay or not. And I'm worried that if I don't go know I will have to soon. I'm so sorry for going on like this, but I'm frightened. I'd love to hear from anybody who understands what I'm going through. I could use some help. Thanks!!

[Wendy Beltrami]

Krista,

As long as you aren't having any "wet" bleeding symptoms (blood in urine or stool, oozing gums, bloody nose that won't stop) you should be fine until Friday. Bruising is certainly a sign of low platelets but 24 should hold you.

There are lots of reasons why your counts could have dropped. Are you feeling OK? Fever? Any sign of viral illness? If you were coming down with something, it could easily slam your counts. Are you able to tell whether your hemoglobin is low as well? Tired, pale, dizzy, headache, rapid pulse?

Of course, it could be a relapse and I completely understand your worry. However, depending on what your counts look like, the doc may just suggest that you increase your cyclosporine to see if that has an effect on your counts.

Remember if you had a good response the first time, it is quite probable that you will respond again if a second round of ATG is needed.

If it is just platelets that have dropped, can you think of anything in your diet/life/environment that has changed recently? Maybe nothing but I know those are the things I am always considering when my son's counts fluctuate.
No red wine, aspirin, ibuprofen, tonic water which all lower platelets.

Be sure to take care of yourself, plenty of rest and water drinking and a good diet. Stay away from alcohol. Do some light exercising... just in general take care of your body.

Hope this helps a little.

Wendy/mom to Grant
dx 12/4/98 AA

[Krista]

Thanks so much for your reply Wendy!

I started school at the end of August, and had to adjust to the constant stress- I think it might have something to do with it because it was last year in mid november that I was feeling sick that lead to my diagnosis. Also, I had a cold, no fever, and was put on antibiotics. That really worried me, because I had never been ill after my diagnosis and was afraid of what might happen. My doctor has the "wait and see" approach, and he takes everything in stride, which is good, but that doesn't stop my fears from taking over. I am hoping for a transfusion, at least to get things up and running so I can go back to school. No bleeding as yet, just terrible headaches, low energy, slight dizziness. I got a flu shot the same day my blood was drawn, so I don't think it was that, but it could be a contributer to my ill feeling now.

My mom keeps telling me to go back to class, but all I want to do is rest. I've tried to explain that, but she doesn't want me to miss out on classwork. Oh the stress! I haven't quite explained my health problems to my teachers yet...I'm trying to find the words this week to explain. Its going to be hard.

Krista

[Krista]

Well, today I went back to the doctor and my bloodwork came back pretty good, actually. He was very honest in saying that he had no idea how it had gotten so low and had improved so quickly. But, for some reason, I don't feel much better about it. I think I actually feel worse. I think its because all the doctors have been optimistic about me, but then everything I read saying its a lifelong chronic condition doesn't make me feel better at the end of the day. Being ill doesn't scare me, I'm not afraid of pain or the discomfort. I think its the half-sick stuff that gets to me, the everyday tiredness that is difficult for me to explain. I guess if my counts are up I somehow have no reason to be tired or stressed or overwhelmed. It isn't until my counts are low that I am really allowed to be tired, and that other students, my family, my boyfriend are truly sympathetic. I don't know, maybe I just complain too much, and maybe its a moot point. Being healthy just seems like something that will never happen again, that there will always be an exception, something like "well, I feel okay, but..." To a chronically-healthy person until a year ago, thats a difficult adjustment to make. I guess I'm hoping that, of all places, somebody here might understand the strangeness of it all, and how impossible the future can seem sometimes.

[marc]

Hi Krista,
I am glad your counts came back up and hopefully you are feeling better. Without question, this disease can be scary at times, but as hard as it may be at times, you have to stay positive. I know there is a lot of uncertainty at times and like you I had never been sick before, but there are new treatments being worked on all the time. Who knows what they might discover next year. So keep positive, a cure (besides a BMT) might be right around the corner and hopefully we all can put this stupid disease behind us.

I also understand when people don't get why you're so tired all the time. They tell me I look fine but they can't seem to understand the fatigue. It's tough to convince people it's real. Your mother obviously means well by wanting you to keep going to classes, but sometimes you just need to rest. I'm not an expert but I bet it would be a good thing to let your professors know what is going on in case you need a break. Just tell them the facts about AA and how you feel. I'm sure they will be understanding and make adjustments for you if you need to miss a class.

As for the platelets, I average a count betwen 12,000-20,000 and usually need to be transfused every two weeks. I wait until I drop below 10,000. So 24,000 seems like a good number. Obviously you need to keep track of how fast it is falling but I guess my point is, don't panic when it gets low unless you are seeing bleeding issues like Wendy mentioned. But also, don't wait if you feel there is something wrong. Get a CBC.

Lastly, you are your own best advocate. If you feel something is wrong and your doctor isn't listening, then you need to let him know he needs to act. Until they have had AA, no doctor in the world can know what the symptoms feel like. You know your body and when it is not right. If your doctor won't listen then it might be time to find a new doctor.

I wish you nothing but good health and good luck in school.

Marc

[Connie]

Krista, I glanced over all of this. Oh, I know how you feel. I had to go through treatment twice. And it has taken me a long time, but I am finally in full remission after 6 1/2 years. I also still get very tired and nap each day. So I know about that and the fatigue. I guess the best thing I can say to you is to take one day at a time. Take care of YOU as best you can. Get the rest you need, eat healthy and get what exercise you can. Stress is not good for this disease, so try to get things to be as stress free as you can. IF someone offers to help you with something, let them. Try to find the positive when you can. Because that and laughter can be so helpful. Hang in there honey, if we can do it, you can too! I am rooting for you.
Connie

[Krista]

Well, its been about a week and a half since my platelets first dropped, and I've done a lot of reading since then on these forums. I think the conclusion that I've come to is that I should consider how lucky I am to be doing so well right now, that I haven't had many complications and that the first round of ATG one year ago worked so well my counts started increasing the day I left the hospital. Having no knowledge of what is "normal," or how serious it really is, I've been having trouble coming to terms with things. But hearing about all the realities of your lives makes me worry some and think some, but mostly happy that, for right now at least, things are going well. I did finally get a letter written and out to my teachers, and they reacted much better than I expected. I can understand now why my doctor is so optimistic. It happened that, upon recieving a call from my family doctor that I needed to go to the ER immiediatly, I was going to a hospital with an experienced team who knew how to treat me. They didn't even consider a BMT, and my brother never got tested for being a match (they tried, but because of how far away he lives, and his belonging in the military, there was a lot of red tape). My mom is worried in her own distant way, I'm sure trying not to scare me with her worry. I think she is just as concerned for me as I am for her. Well, almost anyway. I still live on my own, about 4 hours away from home, and still do all the things I have to do to live my life. I schedule my own doctor's appointments, and I'm the one that calls to check if the thing I'm worried about really necesitates a blood test, though I usually get one anyway. I am a little scared about the things I could be exposing myself to right now in my apartment, and about my job prospects for the future. Is it really possible to support myself if I have to miss so much work for medical care? Anyway, I'm getting carried away with myself. You guys really do help a lot by writing these posts, and by contributing to the greater knowledge of the rest of us out there. I'd still be clueless, wondering the most obvious things about this strange and mysterious disease. I guess as long as I have more healthy days than sick and I can somehow afford healthcare, then I'll be fine. I'm gradually learning my limits and how to handle them, and getting back to the rest of my life. I'm so thankful I get to go back to school and spend my life as a person of the world, and not a patient of a hospital. Good luck to you guys, too!

[debraw56]

I have been so impressed by your strength. My son 25 and newly married was just diagnosed with AA-just completed a course of ATG and is still in the hospital with no response as yet. He isnt ready for the forum yet but I am-check his blog at: www.judahsolomont.com

[Krista]

not that I haven't read and appreciate the other responses, I have and I appreciate it, but I am too tired to write much now.

I am sorry about your son, I looked over his blog and was very touched. I had a very similair experience, minus the foreign aspect. I was given a routine blood test because I asked for it, and was later instructed, by phone call, after the doctor's office had closed, that I was to immiediatly proceed to the nearest ER for a blood transfusion. I took along my boyfriend and tried not to get upset.
For 3 days, they didn't know what was wrong with me. They told me in front of my mom, my boyfriend, and a close friend (I did not appreciate this at all, I thought this to be very private news) that it was either Leukemia, HIV, or aplastic anemia. We knew what the other ones were, so we prayed for aplastic anemia. Nothing could be as terrible as the others. And, in many ways, we were all right. Like your son, I laughed, I joked, I did crazy dances in my hospital gown. I took myself on a trip around the hospital to see the newborn babies. That is not allowed, I later found out, but the nurses didn't stop me- I guess they figured a kid in a mask was not somebody out to steal babies. But I digress. I was treated with ATG and my counts shot up the day I left the hospital. They kept going for months, and now I am just outside of normal. The physical pain may be hard to see some times, but the emotional pain goes on. Its been a year for me, and I am still dealing with my grief. I have watched loved ones die of cancer, and this is nothing like that. Death means that our suffering is over, and bravery is required, but it ends. I have found that the true courage is that which is never ending. It is just the beginning for him, for me, for many. The start of a new life, diffrent and lost from the place we planned for. Scared doesn't begin to explain it. But you have already done a great service to your son by being there, and reading these posts, and finding out what you can. I see that he was trying to figure out what made him sick- it doesn't matter how he got sick, just that he can be well again. It doesn't change anything to know why.

Tell your son hello for me, and good luck, and that he can reach me here anytime.

Krista

[Andrea Pecor]

Hi Krista, Connie and others,

I have been following your posts and just wanted to weigh in. I was diagnosed SAA in 1980, when I was 24 yrs old and just out of college, just embarking on the journey of my life. Everything came to a screeching halt - my future as I had planned it, my dreams, my independence. I moved home to live with my parents, which seemed to me a fate worse that SAA. We were told I had 6 months to a year to live. Don't forget that this was 1980. There was no internet. There was no National Marrow Donor Registry. There was no Aplastic Anemia & MDS Int'l Foundation. There was nothing in the way of resources or support to be had. But I chose to live my life as my heart and soul told me to. I refused to believe such a ludicrous prognosis as death. You can read the details of my story on my Personal Profiles page here on Marrowforums but, in brief, I have had AA for 27 years, had ATG 5 times (and all of its tasty side dishes like Hep C, transfusions, Prednisone, Danazol, Neupogen, hip replacement, PNH, blah blah blah) and here I still am, all these years later, living a life.
I don't mean to sound insensitive or smarty-pants - if anyone knows what it's like to be alone in the world with an incurable blood disease, I do. But I can tell you that making the concious decision to live your life, as opposed to negotiating it's threats, will bring you strength and empowerment. Enjoy every moment because it is a gift, be willing to face the challenges life presents you with because even a small victory is a victory, and believe in the integrity of your heart because it will feed your soul.

Wishing all of you all the best,
Andrea