Just freaking out about relapse...

[Ryan Jay]

Ok,

True confessions time. Now that I have recovered and my doctor's visits have become spaced out to bi-monthly...I'm really going nuts about relapse.

Every time I feel tired..... Every time I get slightly short of breath after climbing up 9 flights of stairs, I think, "Whoa! My hemoglobin could be dropping like a rock." I know that logically I feel so much better now than I did last summer. But still...

I even have nightmares about being back in the clinic again and getting the bad news.

Man, this disease really messes with your head. It's like a type of PTSD.

Anyone have a suggestion about how I can clear my mind? Yoga? Listening to Enya?

It seems like the only thing that calms me down is a good set of labs at the doctor's office. But, I know that I will have to let go at some point.

[DanL]

ryan,

given what you have been through, it seems normal to havve some fear. after 9 flights of stairs after only a short time seems a bit anxious. i highky recommend some form of regular meditation, prayer, or counseling, or some combination of the three. if you are consumed by fear, you may be wearing yourself down unnecessarily. work on appreciating how well you feel each day rather than what you may have felt in the past. I dont think this is a fair comparison at this stage of recovery.

[Lisa V]

I think the PTSD analogy is apt, Ryan. Everybody seems to have their own method of coping (or not coping) with it. This is true for both patients and their loved ones. Ken seems to have a talent for compartmentalization and denial which I lack. His technique is to just put anything he doesn't want to think about out of his mind. That doesn't work for me, and I'm sensing that's not going to work for you either.

I'll tell you one thing that has helped me is actually going through a relapse. Once that happens, you realize that you can deal with it if it happens again. If anything, it was probably a blessing in disguise for us, because he's had a much better response the second time around, and we've all learned so much from the experience that we didn't know before. I hope we've learned enough to reduce the chances of it happening again, but if it does, at least we have the knowledge that another ATG will probably turn it around again.

[kellym]

I think you have to take each day as it comes, somedays I feel like it's the end of the world, then I wake up in the morning and feel really positive that's it's all going to be ok, and remember you have already responded to the atg which means if you do ever need it again it likely to work again.
As for enya..depends on your music taste lol
Hope your having a better day

[kgtuck]

So sorry that you are in this state of mind! This is a very trite statement,but worrying about tomorrow ruins your today! Live in this day today--feeling good and doing whatever you please! The fear, I believe, will never leave us, but we can place those thoughts in the back of our minds (locked up in a closet) and those happy thoughts kept up front in this moment, today!
Also, focusing on a passion, such as a hobby or activity! I'm a 60+ lady who loves sewing quilts, knitting baby things,and beaded caps for cancer patients is my passion. Or, one could learn a new hobby such as pottery, etc. There are lots of folk centers that teach a "hands on hobbies", to keep your mind on a physical activity. Also, walks in a scenic area, bird watching, etc., for me, I'm in the Great Smokies and have alot of fun taking pics and sending them on facebook! I hope this message will help a bit! It took me about 6 months after becoming stable (with treatments) to put those thoughts back in the closet and keep them there for now! Take care, and just know that
most of us have these same feelings! P.S. There are alot of good "sleep aids" out there that help get a good, long and deep night sleep!:

[Ryan Jay]

I am on vacation this week and I have had time to "think."

My job consumes me so much that when that stress is taken off of me, I get a little nutty.

Thank you for your feedback

[mscrzy1]

Honestly, that fear never completely goes away. It does discipate a little, though. I found that the best way to deal with those little freak outs is to have a quick test you can do for yourself to check your counts. Look for petichia around your ankles. Look at the creases in your hand to determine how quickly they turn red. Ask your hematologist for little things like that you cab look for to quickly assess your health and alleviate that initial fear. :-)

[Marlene]

You are not alone Ryan. You have good reason to feel that way so don't deny it and push it down. It will only come back. Like Angie, we would check John's fingernails and hand for a nice pink color. At one point, he could tell when his HGB was dropping based on his coloring.

You've already mentioned some things that you can try to manage the fear/grief experienced from this illness like yoga and meditation. You may want to look at this site that can help you manage stress better. Fear is a stressor. http://www.heartmath.org/ You don't have to buy the products. They have some books you may be able to get at the library and if you spend some time researching Heart Math, you find the simple methods they use to calm the stresses in your life.

Also, acupuncture is very helpful also. It is very good for restoring a greater sense of wellbeing.

Don't let you work be the only tool you use to distract you from your feelings.

[Ryan Jay]

What's eating at me is that I'm getting to the one year anniversary of all this stuff. Months of tests with no results and blood counts falling through the floorboards.

June 19th was a bad day...so was labor day last year.

You're right though...I just can't dwell on stuff.

[julestheo]

Ryan you had your ATG exactly the same time I had mine! what a coincidence and I understand where you are coming from totally. I feel very well and am returning to work I was lucky as I didn't need transfusions for very long after treatment really only a couple of months. I feel so blessed and thank God daily for where I am today and I focus on that and my family which I was doubtful that I would be here today with them, but then a little black cloud appears and I get frightened and remember the bad months I had prior to my diagnosis plus the treatment I didn't have the best experience of ATG it was tough lots of big problems during it, but when ever those thoughts arise I see it as a room and shut the door on it I have given enough of my time to that, that was then and this is now! I enjoy the fact I can go walking with my lovely little dog and enjoy my loving family and that's what lifes all about as they say, wishing you all the very best.
Julie

[Ryan Jay]

I never really told my story on here. I probably should have. I was originally diagnosed with typhoid, which I did have.

I was spending time down in Mexico with friends and family in April of 2010. I remember climbing up stairs and practically passing out. The doctors down here in Mexico saw how low my counts were and thought it had something to do with either Dengue or Typhoid. Anyway, they cleared me to fly back to Boston, but when I arrived I broke into full typhoid (I actually had two strains of it).

OMG! I was so sick. Doctors were wearing protective suits around me because my blood counts weren't making sense to them. Typhoid shouldn't cause your platelets to plunge to 27.

After clearing out the typhoid with a round of Cipro, my blood counts were still down to nothing and I needed transfusions.

Finally, a really awesome doctor walked into the room and told me straight out. "Look, I think this typhoid thing is just a red herring. I saw a patient about 20 years ago in a center in Detroit who had this rare disease called Aplastic Anemia. I'm not 100% sure, but I'm looking at you and all the signs are pointing to AA."

It took me about a week to process the news. And there were times when I just crumpled to the floor, no doubt a combination of the physical and emotional impact of everything.

I felt better in August, once we got the battle plan put together. ATG wiped me out until November, and then my counts really started to rally. Yay!

Anyway...that's my back story, which should have been posted much earlier.

[Lbrown]

Hi Ryan,

Personally I don't think the typhoid and the AA are separate entities. I also had ATG about the same time as you - July 2010 - but it didn't work for me. I know how scary these things are. My thing all started with some sort of strange infection 20 yrs ago. I was never diagnosed with anything but I was so ill in hospital with a fever of 106.2 every day for about 2 months and on all kinds of IV abx. Somehow I know this is related to my condition today. I too lived in fear of some sort of relapse - never dreamt it would be red cells and not white. But anyway, I had an 18 yr remission.

These diseases are terrifying and seemingly random and hit without warning. All I can say is try not to react with fear, that's all I'm trying to do.

Good luck!
Deb

[cheri]

I too have often wondered, that previous illness could predispose us to certain illnesses later in life. When I was an 8 month old baby, I had my first fight for my life. I can contracted, Erysipelas (aka St Anthony's Fire)
and ran such high fevers that blisters formed and my skin fell off in my father's hands. Burning up and too hot to wear a diaper! It was from a strep virus that I apparently contracted crawling on the floor..........nobody knew what it was, but it came on fast and hard! They treated it just it time, so I've been told....
I just Googled it and found something interesting:

What is it?
Erysipelas is an acute infection of the skin and underlying fat tissues – usually caused by the streptococcus bacteria.

Who is at most risk?
This highly unpleasant condition is most common in elderly people. It's also seen in the very young and in people with immune-deficiency (due to HIV or cancer of the components of the blood for example).

Immune-deficiency? Cancer of the components of the blood? Hmmm....
Which came first? I'll never know! But I survived, grew up and went on to have 2 children, so I always figured the two were unrelated. I think we all have some inherent physical weaknesses--I have virtually always felt tired and drained--low stamina, need lots of sleep--that's why a Hemoglobin Level of 7 or less, doesn't leave me feeling that different!
And I thought I had LYME (again) when I was first diagnosed with AML!

[mscrzy1]

Originally Posted by Ryan Jay

What's eating at me is that I'm getting to the one year anniversary of all this stuff. Months of tests with no results and blood counts falling through the floorboards.

June 19th was a bad day...so was labor day last year.

You're right though...I just can't dwell on stuff.

Yes, try hard to not dwell. Be constantly looking at the positives. Compare your counts now to what they were in the beginning of this whole mess and give yourself some perspective. If it helps, I will tell you that I did not see counts considered to be normal across the board for 3 years after my ATG. I saw drops here and there along the way, but as a whole they were rising. When I saw those drops I remember freaking about relapse as well, so I can relate to where you are coming from.

[paulaespada]

Ryan Jay



I understand what you say.
I feel the same about my husband - and even though he doesn't speak on it, he feels the same, specially when cyclosporine will be decreased.
For instance, today he was quite tired and the way he spoke, I felt he was worried.
But indeed no need to be so worried - you'll find your coping strategies and remember, AA is not that horrible as it was years ago. This confidence in science development helps me.

Wishing you all the best!

[Robi1Knobi]

I understand how you feel....totally (((HUGS))). Something new I am trying is I bought a daily student planner, and everyday I am going to write down 3 things that I am grateful for. I also avoid watching the (negative) news and try to watch comedians on Netflix as often as I can. Its easy to lose myself in my work because my husbands been laid off 2 years, but living my life and enjoying our daughter is much more important. Do things you enjoy as long as you feel good!! Best of luck Ryan, try not to dwell on sadness and bad things that have happened. You can get past this...Linda

[paulaespada]

Originally Posted by Lisa V

I think the PTSD analogy is apt, Ryan. Everybody seems to have their own method of coping (or not coping) with it. This is true for both patients and their loved ones. Ken seems to have a talent for compartmentalization and denial which I lack. His technique is to just put anything he doesn't want to think about out of his mind. That doesn't work for me, and I'm sensing that's not going to work for you either.

I'll tell you one thing that has helped me is actually going through a relapse. Once that happens, you realize that you can deal with it if it happens again. If anything, it was probably a blessing in disguise for us, because he's had a much better response the second time around, and we've all learned so much from the experience that we didn't know before. I hope we've learned enough to reduce the chances of it happening again, but if it does, at least we have the knowledge that another ATG will probably turn it around again.

Lisa this thread is so refreshing to me right now.
We're afraid my husband we'll need "more treatment". Will it be ATG (the 3rd) or BMT is what we wonder.
We feel so unsafe but reading your post I felt with more hope.
A 2nd, 3rd relapse... what will happen?
So many questions...

[Susan]

Well, I don't know many people who've at ATG/cyclo but nearly all the ones I know are going great, no relaspe for over 10 years. Several had a 2nd round.

[dmscott65]

I haven't posted in a long while, but have been truly blessed, like you Ryan! My hATG/Cyclosporine treatment for SAA has continued since Oct 2010 and have been on a steady course of strength, better blood counts, etc for the last year!

Since your case started about the same time as mine, I've followed you and kept you in my prayers. Don't be afraid or discouraged by any set back (real or imaginary). Life is a gift, so enjoy each moment. An accident could take any one of us at a moment's notice and we don't sit and worry about that happening each day! God must have a plan for you, or you wouldn't be here today. Listen to your doctor, eat well, excercise, rest and pray!!

[Ryan Jay]

I appreciate your kind words...

We're all feeding coal into the same fire.

However, as an atheist and a transhumanist, I rather view my experience as important step toward the technological singularity event predicted for the near future. Some say it will occur in or around 2045. Who can really say???

Under our philosophy, all the researchers whom we read about here would be considered "friends of the singularity," as they are working toward ending human suffering...albeit in the little cul-de-sac neighborhood that is bone marrow failure syndromes.

So, while some of you filter your experience through traditional belief systems. (And that's fine) I view it through the lens of transhumanism.

I hope my ideas add some diversity to the forum.

[Susan]

Hi Ryan,

Isn't it great how everyone is respectful and helpful to each other here. I'm following your experience too. Wishing you all the best.

Suz