looking for support!

[paulallen]

My wife was diagnosed last Sept. with SAA and she didn't have a sibling match so it was off to do the ATG and Cyclosporine. She has responded, HGB is at 11 (up from 4), HCT at 33 (up from 16) PLT avg about 88 (up from 17). As you all know it is quite the roller coaster ride. It looks though that those numbers are her new "normal".

She received so much blood and platelets while she was going through everything, she was going weekly for both blood and platelets. I really think if she hadn't gone to the Dr. when she did, I would have lost her. One thing I have learned is that she is a fighter. Her first CBC is when the HGB was at 4 and I had to call her at work to go to the hospital! Little did we know what we were in for. Dr's couldn't believe she was actually functioning.

She received treatment at Vanderbilt and that place is amazing!! She takes 500mg of Cyclosporine a day 250mg AM, 250mg PM and tolerates it great. Her Dr. said that once she reaches 100 PLT they will start trying to taper the Cyclosporine and see how she responds.

My question is when do you learn to let go of the fear of a relapse and learn to live your life again? That's where I am, she handles her illness much better than I do and that is a REAL testament to her. But it's like I live from CBC to CBC, I handle all of the insurance stuff, I handle her meds. I do it because I figure she has enough to deal with. This is the only way I know to explain it, she has the illness but I manage it for her. Without the BMT, there is no real cure so I feel like it will ALWAYS linger and I need to learn how to cope with that. Any ideas, LOL!? Any fluctuation in her CBC drives me nuts, the Dr. assures me that numbers fluctuate all the time and I should look at the bigger picture and trends, I know that makes sense but it is so hard to do.

I had to start taking some anxiety pills this week to hopefully help. Anyway, if you have any thoughts or suggestions I am more than happy to listen. I am in my early 30's and this is one of those things that you never expect to happen to you, so cliche but so true! Feel free to email me at tigerpaul1977@gmail.com , thanks for listening, I think this post in itself was theraputic!

[Lisa V]

Originally Posted by paulallen

My question is when do you learn to let go of the fear of a relapse and learn to live your life again?

Paul, all I can tell you is it takes time. The longer your wife goes without incident, the easier it will be to get on with your life. You never totally forget, though. And really, you shouldn't, because relapse is a reality. It's not inevitable, but it happens enough that you should be prepared for that possibility. If it happens, it's not the end of the world. It just means you'll have to go through the whole process over again.

I was a basket case after my husband's first ATG. It sounds like your wife's counts have increased quite a bit more than my husband's in the same amount of time, so that is a good sign! In fact his platelets never did get above the mid 20s by the time he relapsed and had to have a second round of ATG a year and a half later. I have to say that by that time I pretty much knew the drill, so I wasn't in shock anymore, but that still didn't keep me from waking up every night about 3:00 AM scared to death and unable to get back to sleep. Fortunately by that time I had found other people online who were going through the same sort of thing, so that helped a lot being able to swap stories. Fortunately also, he has responded better to the second round than the first (and we learned that in his case it was probably a bad idea to attempt to taper the cyclo), but his counts have still been very slow to rise. Once his plts reached 50k (the "safe" zone), I was able to relax a little, and when they hit 100k, we celebrated! That took a few years, so don't give up hope.

Ken and I also have a similar sort of arrangement where I am the one who does most of the research and keeps track of his labs and history, etc. I found that also to be very helpful in giving me some direction and a sense of involvement and even, dare I say it,a little bit of control? I know that I have been able to influence some of his treatment decisions by sharing with his doctor some of what I have learned. He copes better by putting it out of his mind as much as possible, but I'm not the type that can do that, so I try to just get in there and look it face to face and see what it is we're dealing with. You just have to figure out what works best for you.

Now he's been stable for several years, and although AA is still a fact of life for us, it no longer dominates it. It's really just a function of time. I always know he may someday relapse again, which is one reason I like to stay connected to other people through the forums.

BTW, I don't think I've ever heard of anyone whose Hgb got down as low as 4! How was she still able to walk around? You can have low plts or low WBC without knowing it, but I would think you could barely lift yourself out of bed without passing out if your Hgb was that low! And yes, counts do fluctuate, so you have to look at the big picture over time. As long as the general trend is in the right direction, a little drop from one week to the next is not an indicator of impending doom. Again, it just takes time and experience to see that. My one caution to you is when they get ready to taper the cyclosporine, make sure they do it very slowly. Our doctor didn't think it mattered much, but we found out otherwise.

Take care,

[Gloria J]

Hi Paul,

It sounds as though your wife has responded quite well to the ATG, and fairly soon after treatment. To give you a different experience, my hemoglobin was 2.9 when my SAA was first discovered, and, two years post-ATG, my hemoglobin is in the low 12s, and platelets in the low 50s.

I would suggest taking a deep breath, and try to relax. Your wife's counts may bounce up and down a bit; but they are quite good now, and that is what you need to focus on. The fear of a relapse is always there, lurking in the shadows. But if that's all you focus on, you, and she, will never appreciate all the good, even great CBC numbers you're seeing.

Remember that saying - Don't borrow trouble? Relax and celebrate the good results. She IS living her life again, it's just on a different path. Maybe it's filled with lots of daily meds, and frequent CBCs, but it doesn't have to be filled with anxiety. So, cherish the good, and focus on the positive results.

Be strong, be well, and keep us posted,

Gloria

[CDChilds]

My question is when do you learn to let go of the fear of a relapse and learn to live your life again?

Hi Paul,

Eventually you will learn to relax and try to live with her illness. But every now and then the feeling of despair rears it's ugly head again. And you will take a deep breath and move forward because you have to.

Her counts after ATG sound great! My son Gage was dx with AA at the age of 3years. His brother and sister were not a BMT match. He has had two rounds of ATG, one horse and one rabbit. He is now almost 13 years old.

I think your wife's count are really good right now considering the time frame since she had her treatment. Sometimes it can take up to a year for you to see the total benifits from the ATG treatment.

My son's counts: HGB 7.2; WBC 2.3; PLT 26: ANC 480. These are his normal counts and have been now for the past two years. These counts are without any transfusions. I wish they were higher so that he can do more activities like low impact sports. But, we have learned to live with his "normal"

I wish the best for you and your wife.

CDChilds

[KimO]

My daughter was diagnosed 10/07 and had ATG 12/07. Even though her counts have been in the normal range for nearly two years -- and she's been off cyclosporine since 04/09 -- there is still a knot in the pit of my stomach every time I click on the link to open newly posted CBC results. I can encourage you though that it gets easier over time to not dwell on it every day -- just on the days of those pesky CBCs. Thankfully those get further apart as time goes on as well. Our protocol says two months apart the second year after treatment. Unfortunately her counts have been fluctuating more than normal this spring -- hopefully just stress from college -- so the hematologist has had draws more often to keep on top of things. Another thing that I found helpful to deal with the stress was to follow the sites of as many folks as I could find that were having BMTs for AA. I find it better to just face the facts head on and now that I've seen a number of children and adults have successful outcomes after BMT it doesn't seem quite as terrifying as it once did. Shauna is also more willing to discuss her illness now and has agreed to go to the AA and MDS seminar in Seattle this weekend with me. Hopefully what we learn there will be even more encouraging.