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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Mon Jul 21, 2014, 12:54 AM
KristinR KristinR is offline
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Location: New York
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So scared

I was recently diagnosed with aplastic anemia. I also suffer from depression and anxiety. Finding out I had this disease has changed my whole world. I'm 26 years old, I've always been healthy. I am a mom to a two year old. I am getting married to my wonderful fiancé in august. And I cannot shake off the feeling that I'm going to die from this. I am so scared and depressed. All I want is to live a long happy life with my son and my soon to be husband and I feel like I'm being robbed of this. I'm in such a dark place, and this should be the happiest moments of my life. Is there any one out there that can offer me some consolation or positivity? I am in dire need of it.
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  #2  
Old Mon Jul 21, 2014, 02:20 AM
Hopeful Hopeful is offline
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Hi KristenR,

You are not alone in your feeling of panic with this diagnosis! I remember wondering how people could go on with their normal lives when I was facing so much more. It was quite surreal.

We are all here to support you! I'd encourage you to check out the videos at this website to learn more about the disease and treatment options. Knowledge is power!

https://live.blueskybroadcast.com/bs...T=944&CAT=1031

Be sure that you are being seen at a center with lots of experience in treating Aplastic Anemia. Do not delay in having your treatment, whether BMT or IST, as it has been shown that this leads to better outcomes.

It sounds like you are young and healthy (except for this disease) which is EXCELLENT from a prognosis standpoint. Best of all, you are surrounded by people that love you and need you -> great motivators to face this disease head on and make it part of your past! You will get through this...but it does take patience. Don't be afraid to ask for help along the way.

Wishing you well!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Tue Apr 14, 2015, 07:41 PM
dsandrock91 dsandrock91 is offline
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Feel the same

Quote:
Originally Posted by KristinR View Post
I was recently diagnosed with aplastic anemia. I also suffer from depression and anxiety. Finding out I had this disease has changed my whole world. I'm 26 years old, I've always been healthy. I am a mom to a two year old. I am getting married to my wonderful fiancé in august. And I cannot shake off the feeling that I'm going to die from this. I am so scared and depressed. All I want is to live a long happy life with my son and my soon to be husband and I feel like I'm being robbed of this. I'm in such a dark place, and this should be the happiest moments of my life. Is there any one out there that can offer me some consolation or positivity? I am in dire need of it.
I also was just recently diagnosed and feel the same way you do. I feel in a constant state of panic and worry about my numbers. I fear I will die and not be able to live a long life. I just want to let you know that you are not the only one feeling this way. I hope we can be there for each other and try and find the light at the end of the tunnel. I keep telling myself God is with me and testing me but still feel like I'm failing. Sorry if this isn't much help. Just know that you are not the only one feeling like this. Much love and warmth sent to you.
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Dalesa, 23 yrs old, diagnosed AA 2014, currently no treatment method being used.
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  #4  
Old Tue Apr 14, 2015, 11:01 PM
triumphe64 triumphe64 is offline
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One thing you can do is attend the patient family conference in Cleveland in a couple of weeks. You will meet people just like yourself.

http://www.aamds.org/support-and-community/conferences
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #5  
Old Wed Apr 15, 2015, 02:18 AM
Hopeful Hopeful is offline
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Hi dsandrock91,

Did you have a BMB to confirm your AA diagnosis? Did your doctor run a bunch of tests to rule out things like vitamin/mineral deficiencies, heavy metals, parvovirus, hepatitis, AIDs, etc?

AA is a disease of exclusion. There are many things that can mimic it and a diagnosis can not be made without a BMB.

In another post you mentioned that your platelets had gone from 14 (at diagnosis) to 27 now. This is not usually seen with AA without treatment or a transfusion! So, that may be a positive sign that this is something else.

triumphe64 gives some good advice about going to the conference. They are free and you can ask questions of doctors that are experts in the field.

Good luck!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Wed Apr 15, 2015, 08:56 AM
DanL DanL is offline
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KristinR,

Very sorry to hear about your diagnosis. I think that the suggestions you have already received are great ideas. Finding out that you may have a marrow failure disease is a tough transition, but one that you will prevail over. I tend to be a little on the verbose side, but I will try to keep it short here.

Obsessing about numbers is a very normal start for most of us as patients, but it is probably one of the more futile exercises that we go through as we have no control over where they are on any given day. Fluctuations happen in normal marrow.

My shrunken versions of advice: The disease is not your fault. What you are capable of doing on any given day represents the limitation of your physical well being and your mental/emotional well being, so it is important that you exercise control over what you can control and that you let go of what you cannot, without guilt. If you are fatigued, rest. Explain to the people around you the impact of your physical and/or emotional state, and take the steps needed to overcome them each day. This has been the hardest part for me and I am over 1 year past transplant. I have three children and what I have learned to do is to occasionally catch up on TV by marathon, to spend a lot of time on the couch cuddling up with them, and when I have it, make sure that I put out a good breakfast, lunch, or dinner.

My favorite phrase is to enjoy what there is to enjoy and to endure what there is to endure in life. AA and MDS give this a whole new perspective. I have been the 18 hour per day worker - some days I only put out 2 hours of work, but it is what I've got for the day and I give it all during that time.

You asked about positivity and encouragement - Focusing on one day at a time, making sure that you don't let your good moments of the day pass you by, giving yourself a list of things to do that have small and large accomplishments in them helps me tremendously. I always want to win. Sometimes winning is that I spent an hour on the couch with one or all of my daughters watching a show and hearing them laugh is that victory. I am not a fan of TV, but I love to see the kids laugh and interact. I also love to see them get it all together and make dinner or lunch. Other days - high energy days - I will get out and go shopping, have a nice date with my wife, go to the gym for an hour or more, work on the car, clean up part of the house......i go with the ebb and the flow, that way when I look back on the week - I won.

It is a different life but one that you can enjoy and live fully until your treatments are finished and you are cured of the disease.

The other positivity notes - find a doctor/team of doctors that you trust and respect and that respect and trust you as a patient. Having the right team makes all the difference. I received 3 different opinions and went with the team that made me feel like they had my success in mind. We have had a dozen bumps in the road, but in most cases, we knew of the possibilities, so the changes weren't quite as jarring as they could have been.

I failed again at keeping it short, but hope that this helps.
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #7  
Old Wed Apr 15, 2015, 07:12 PM
Faye R Faye R is offline
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Smile

I agree with Dan O so wise, one thing I do, do now, is explain to people on how I am feeling right at this moment in time, if I'm tired I say so, if I'm sad I say so etc, don't keep things to yourself, a little two year old can understand that mummy is not well, get the drawing pencils out and have a little lesson on how you feel right now, faces can do that, I meditate a lot on the good stuff, try to eat healthy, slip up every now and then but that's fine to. You WILL get through this, think of it as another hump in the road.
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  #8  
Old Wed Apr 15, 2015, 08:24 PM
dsandrock91 dsandrock91 is offline
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helpful info and support

triumphe64: thank you for suggesting the conference in Cleveland, however that one may be to soon for me to attend to since i don't drive and would have to find a ride there and I also need a month advance at work to schedule off. Thank you for the suggestion though and I may look into going to a conference in the future.

Hopeful: if BMB stands for bone marrow biopsy then yes i have had two to confirm the diagnosis. My platelets went form 19 to 27 after having two platelet transfusisions. It was hard for the doctor to come up with the diagnosis of aplastic anemia because my red blood cell and white blood cells are low but not so low that its a clear sign something is wrong. My lowest number is my platelets and after the doctor got my medical records she seen that my platelets have been low since about 2009, and I didn't find out about it until last year when I was in the hospital for a week. When I was in hospital and since I have had several test and labs done and all of them have come back clear or negative. They can't figure out why my platelets are so low.

DanL: thank you for your encouraging word they helped me some. When I feel overwhellmed and scared I tend to want to be in control of everything and normally only see the negatives in a situation. I am trying to change that and most of that my be coming form the anxiety and depression i also suffer with.

FayeR: it is hard for me to explain how i feel to others and mostly to myself because i struggle recognizing how i feel. have trouble expressing my emotions and feelings but am continuing to work on it.

thank all of you for reply and trying to encourage and help a young adult recently diagnosed and extremely scared.
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Dalesa, 23 yrs old, diagnosed AA 2014, currently no treatment method being used.
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