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  #1  
Old Sat Feb 1, 2014, 08:40 PM
PrettyFunky PrettyFunky is offline
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So many questions! Terrified.

I had been seeing a hematologist for a year now after having low platelets/anemia. He wasn't knowledgable and thought it was a transient ITP. I never felt sick other than fatigue and occasional bruising, so I didn't pursue anything and my platelets went from critical levels to non-critical after awhile.

That was until a week ago. I had been experiencing petechiae on my legs the week prior. Then I got a nosebleed that wouldn't stop. Knowing my history I went to the ER, as no doctors were open. Platelets were 4,000, HCT 25, low RBCs, low retics, WBC low but not outside the normal range. ANC less than absolute lymphocytes though.

Bone marrow biopsy/aspirate performed with low cellularity. It looks like my RBC/megakaryocyte lineage is what is failing. I don't understand everything that was said as I was very sick (still am) and I wasn't at a hospital that had specialists used to this type of stuff but they didn't want to release me or transfer me until my platelets were above 10,000 and bleeding stopped. Vitamin levels checked, alternatives eliminated. No dysplasia. Retic/plt/RBCs in CBC all below range and hypocellularity in the bone marrow plus eliminating all alternatives led to the diagnosis but I still am in a state of shock or denial.

I'm scheduled now to see specialists in AA now this week with possible outpatient platelet transfusions this week.

I'm really scared. I'm 29, alone, have good friends but they can't always be there to support me. I was just dumped by my boyfriend a week prior to this so that was added stress. I need to keep my job and work financially. There's just no way I can't, but I work in a micro lab of all places!!! I feel sick and don't know how I can take care of myself through all this.

I'm happy I will be seeing an AA specialist and understand there are treatment options. I do have one sister if a BM transplant is needed and IF we are a match but we are practically estranged!

I just have so much going through my head. I feel like my life is over. My career is over. I'll never be able to have kids. I could die. I don't know. I'm so confused and feel so weak after all this. How will I make it through? I was in a car accident a few months ago and everything was low then too. HCT/PLT so low they thought I might have damaged my spleen though scans were not conclusive and no follow up since I felt fine after rest. Now I'm scared I would die in another wreck. I'm scared to go out.

I just got home and am afraid to even be here. I'm alone now after my mom dropped me off and helped get me settled a bit. Do I need someone to take care of me through this? I don't have anyone who could really do that. I don't have the money to not work but I'm afraid of my job since it is a micro lab filled with bacteria.

I just feel so lost.

Last edited by PrettyFunky : Sat Feb 1, 2014 at 09:46 PM. Reason: Clarification that sister might not be a match for bone marrow transplant
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  #2  
Old Sat Feb 1, 2014, 09:36 PM
Whizbang Whizbang is offline
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PF,

1st thing you need to do is notify your Human Resources Department that you are sick, and 'may' need to go on Disability, and make sure you do it from your Personal email, and save a soft copy and hard copy (print it out)...

You really don't want to be fired due to your illness, and once they are notified in writing, I don't think they can fire you...

Next you obviously have your mother to help you out, and you WILL need her to help you... Especially if you decide to go for transplant...

Luckily you are in Seattle, and are near one of the best transplant centers in the USA...

I just went through transplant on Halloween, really tough, but doable...

Best of luck to you and God Bless...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)

Last edited by Whizbang : Sat Feb 1, 2014 at 09:51 PM. Reason: edit
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  #3  
Old Sat Feb 1, 2014, 11:02 PM
Chandra4intx Chandra4intx is offline
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I fully agree with the previous reply! You will definitely need you mother's help through this. You may also need some Xanax to get you through the initial shock, anxiety, and mourning over your health. It helped me through the beginning stages! I couldn't eat, sleep or think straight enough to even make a decision when I was first diagnosed(we knew something was wrong at the end of October 2013, so not that long ago). One of the most important things for you right now is to stay healthy and not get an infection.

Do you have short term disability through your job? There is also something called FMLA (family medical leave act) that will protect your job for up to 3 months if you have to be out due to an illness. Contact your HR department to get more information. I am currently on short term disability as well. I am an occupational therapist and work with sick children, whom I obviously can't be around with low ANC. Definitely DO NOT quit your job. FMLA is there for your protection. If you have short term disability, you will get paid a portion of your income during your disability.

I know this is a VERY scary time. The Seattle Cancer Center is supposed to be one of the best for Aplastic Anemia. Good luck to you. I am glad you found this site to bounce questions around. It has given me some hope and I pray it does for you too!
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Chandra, 40 y/o wife and mother of 2 girls; DX SAA Dec 2013; H-ATG Jan 2014; Prior to ATG:HGB 8.3, HCT 24.3, Platelets 10, WBC 1.9, RBC 2.67, ANC 100; April 30, 2014 matched sibling donor BMT; currently off meds and counts are normal!
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  #4  
Old Sat Feb 1, 2014, 11:59 PM
Neil Cuadra Neil Cuadra is offline
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PrettyFunky,

I can understand how hard this is for you, especially since you don't feel like you have enough of a support team. Consider us part of that team. If you haven't been close to some of your family members, a crisis like this may bring them closer again. You don't really need a medical caregiver at the moment (the role that a family member usually takes to get you through medical treatments), but you need people to talk to. That's something that relatives, old friends, or even new friends can do for you.

I know that a million worries are going through your head, but please know that many of us were just as scared when we were diagnosed, that we found strength we didn't know we had, and that we got through it. You clearly want to help yourself or you wouldn't be here asking questions, and I'll bet you have a lot of strength too. When my wife was diagnosed with AA and life-threatening low counts we were both very frightened, but it's now 16 years later and she's healthy, working full time, and busy with hobbies and family.

At the ER and in the hospital you had to rely on a medical team that could recognize your symptoms and deal with the emergency, but the AA specialist is where you'll get the real facts about your health situation and your choices from here on. You were living with anemia for a year (and possibly longer since it may not have been recognized at first) and it's good to hear that it will finally get the attention it needs. It's also good that you have no dysplasia.

Other than the low counts, have you been generally healthy? That would be another factor in your favor. So is being under 30.

The best news is that you are in Seattle, where some of the best aplastic anemia care in the country is found. Chandra4intx is right about that!

Even with those factors in your favor, you're still dealing with a scary disease and I hope your hematologist will be confident about a treatment that can help you. Don't worry about the possible need for transfusions. "Filling the tank" will keep you safe so your next steps can be worked out. With your counts being monitored, transfusions given when necessary, and WBC within range, I don't think you have to worry about disaster just from venturing outside.

It's too soon to know how this will affect your job. Whizbang is correct about the possibility of going on disability. It's smart to take a list of questions to your doctors appointments, and I suggest that one of them be whether your job poses a health risk to you. The first goal is to deal with the AA, as many patients have done, and the next goal will be to get back to your career and your other plans, despite the interruption.

Keeping your fertility is part of getting your life back. Make sure the doctors know that's one of your concerns. Women with AA can still have the choice to have children, although doctors may treat it as a riskier pregnancy. If you were to need a transplant, you'd work with a fertility specialist ahead of time. You'll find discussions about that in these forums.

Good luck with the AA specialist. Please let us know what you learn.
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  #5  
Old Sun Feb 2, 2014, 12:03 AM
summerdrake summerdrake is offline
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Totally agree with both replies. You need someone. For moral and physical support. If no one is available all the time ask your loved ones to take shifts or turns. You need help and hopefully they will understand. My heart goes out to you, and you are in my prayers!
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Summer, 32; diagnosed with SAA May 2013; BMT June 7, 2013; off meds, no signs of GVHD; doing great, praise the Lord!
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  #6  
Old Mon Feb 3, 2014, 12:17 PM
PrettyFunky PrettyFunky is offline
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Feel like giving up.

I honestly just feel like giving up. Before this happened my boyfriend dumped me, like I said, and it wasn't a normal breakup. A week prior he was professing his undying devotion and love and that he would always be by myside. Yesterday I talked to him on the phone and he had nothing but disdain for me. The only thing it compares to is if you look up and read about a Narcissist Discard in a relationship, where it just ends with no warning and you are basically as good as dead to them and they go on living their life like you never existed. So I was dealing and am dealing with the emotional damage from that, a broken heart, confusion, and a guy who seems to hate me that a month ago was going to marry me and never leave my side and always be there for me.

My mom is an alcoholic going through treatment and has an abusive boyfriend that doesn't like her spending time away from him so she is not available to me. She helped me get home from the hospital and quickly had to leave because he was yelling at her on the phone. This is a guy I've had to call the police on for threatening me.

My ex-roommate/former really good friend is young, immature, and has crossed some bad boundaries in my life so I don't have the energy to have her in my life right now.

This couldn't have emerged at a worse time in my life. My ex-husband owns the house I am staying at (I signed over my part of it to him) and says I can stay there as long as I pay the bills but he's of zero support which is fine because that relationship is over and he's moved on. I'm alone in this house and have no one.

I finally have a car but it's a stick and I'm so afraid of getting in an accident just trying to get to the treatments I need. Tomorrow I go in for a re-up of my platelets and Friday I'm supposed to meet the specialist.

Last night I spent the entire night crying after being called stupid, dumb, berated from my ex-boyfriend. I finally just deactivated my facebook account because he's living his life like nothing, like I never existed.

I talked to my sister and she says she's too sick (she has celiac) and has too much going on with her family to even consider being a bone marrow donor if it came to that, and she lives 800 miles away anyway.

I don't even feel like I want treatment at this point. I'm at the lowest point in my life. I'm terrified and literally have no one.

I don't even know what to do at this point in my life. I can't believe this is happening to me. I'm in so much denial that my body is actually shutting down.
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  #7  
Old Mon Feb 3, 2014, 01:12 PM
sbk007 sbk007 is offline
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When it rains it pours.

You know that expression. Sometimes life is like that. Its not just you. It can rain on anyone's parade. It does every day.
Bring this up with your Docs as its interfering with your health in general. Its good to vent, and I did read the whole post. All I can say is that there are no real answers to any of the why's?. So, you have to look forward and concentrate on you and restoring your health. Once you meet with a specialist and get a treatment plan you'll be closer to accepting. Meantime hang in there and do your best to take care of you. What happened in the past is depressing, what happens in the future makes you anxious so concentrate on now and you. BTW - that's a Robin Roberts quote but I don't know where she got it from.
All the best to you.
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  #8  
Old Mon Feb 3, 2014, 04:21 PM
Karenish Karenish is offline
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You are going through the worst time of your life, this I understand, but let me share something with you. YOU can beat this, sometimes the greatest things come at our darkest hour! I hit my 50th birthday, had moved from an area that all my friends lived, just got through a horrible nasty divorce, changed job, my one and only daughter was living away and I truly thought that for some reason I was being punished (haven't been the goodest girl in the world). I was stressed to the eyeballs and I am convinced it was the stress that caused my AA - I went through a few days of blackness - I contemplated taking my own life and went downhill, I had never even heard of AA let alone know there were support networks for me out there. Then due to the concern of the nurses on the ward my consultant walked into my isolated room and sat down and the conversation followed.
Doc "whats wrong Karen, nurses are concerned that you are depressed"
me "I am, I am dying"
Doc "I have news for you Karen, we are all dying, from the minute we are born we start to die"
Me "but i will die before anyone else because I have AA"
Doc"really? how do you know that someone you know doesn't have a brain tumour, your neighbour, does she drive?"
me "yes, but what has that got to do with it"
Doc "Drivers have a high risk of being killed by a road traffic accident, but does it stop them getting into the car to drive?"
me......now it was sinking in.
"you have a treatable disease Karen , its not terminal - we will fight this battle with you, all of us, but we cannot fight it without you our general, without your commitment to beat this we have no hope of winning"
From that moment on, I decided that I owed them that much, that I owed the planet that much, I was a good person, who just had a bad thing happen to her, but it wasn't terminal, it wasn't degenerative, it was just a nasty diagnosis.
I then decided that day that I would fight, I fight on a daily basis. I did not respond to treatment for 10 months but I never gave up the belief that I would beat this bastard (excuse my verb) - 3 years on my counts are near normal, I received Rabbit (no bone marrow match for me) and I live my life to the full, I now have an adorable man in my life, my daughter is doing well in university, I have a house and a dog and a job I was born to do (helping veterans with post traumatic stress disorder).
Let yourself have some dark days, but set yourself a goal to fight this, you will meet someone who loves you, you will live your life to the best of your ability, and you will again laugh! Hang on in there, there are loads of us out there who will hold your hand through this, open up a new facebook account and join the aplastic anemia groups, we are a great bunch. You will need us new friends who know what you are going through. Together we can join your army, but we need you to lead us! chin up kiddo, start making goals xxxx Karen in the UK
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  #9  
Old Mon Feb 3, 2014, 04:35 PM
KMac KMac is offline
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PrettyFunky,

The hand that life has dealt you at this point in time is far, far from normal. It is simply brutal. I believe I have been somewhere similar, but I want so much to convey to you that there is hope beyond all this. My SAA diagnosis, almost two years to the day before yours, also came at what seemed to be the worst absolute time in my life in relation to my work and personal problems. I too felt terrified and alone. I too wondered at first whether it was worth it to even be treated, everything seemed so hopeless from all directions.

I can tell you today that I am very glad I went through with treatment. The doctors are getting better and better at it, and our chances are very good and looking better all the time! At diagnosis, I was not even able to think, talk, or walk straight. I couldn't sleep at night. This disease is brutal on both your mind and body. In retrospect, so much of my psychological stress was brought on by the physical effects of the disease, and the disease CAN be treated!

It sounds like you have had low counts for so long, you have forgotten what it feels like to have a proper amount of blood in your body. I know that was the case with me. But I tell you, it is AMAZING to feel life and blood slowly seep back into your body, to see bruises start healing and cuts stop bleeding as your platelets begin to rise on their own. I will never look at life the same way after receiving the gift of restored health and being brought back from near death. Please, go for the treatment AND in all likelihood the hospital where you are treated will have a team of psychologists to help you through the awful personal issues you are dealing with (and probably at no additional charge).

If you would like someone to talk to, please feel free to call me at 303-642-7943 or email kevin_mcnamar@yahoo.com. I am in Denver, but we have an aplastic anemia support group here that meets non-periodically, and you would be more than welcome to call in.

Also, as others have said, there in Seattle you are in just about the best place in the US, perhaps the world, for aplastic anemia treatment. The patients in our support group are treated at a hospital in Denver (CBCI/Presbyterian St. Luke's) and most of our hematologists here have spent extensive time working there at Fred Hutchinson. I understand they still conference with the Fred Hutchinson doctors regularly for treatment decisions. So in a way, you'll be treated by the same extended team of doctors as the folks in our group.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #10  
Old Mon Feb 3, 2014, 05:34 PM
NLJabbari NLJabbari is offline
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Hey girl! Pull yourself together...you CAN do this! Others around you might have let you down and may not be reliable or available, but there's nothing you can do about that! You have no control of how they may or may not be able to help you ...
You do however have control of how you will handle this situation to help yourself! Just look at the list of people on this forum who have had to take this disease by the reigns and give it their best shot! ONE DAY AT A TIME... Take a a deep breath and tell yourself that you can do this, because you really can!!! Don't let fear overtake you... Like many, through this journey you will find out how Strong you really are. This strength will not only help you to get to a better place medically, you might also learn a few things about yourself and others along the way.

Wishing you the best...
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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Old Mon Feb 3, 2014, 10:45 PM
Kathy S Kathy S is offline
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I commend all of you for the advise and support for Pretty Funky. You can see the caring hearts of the people in this group. I am 67 years old and have learned early in life it is not fair. But if you want to judge your life in how fair it is, you will never find the answer. I truly do believe everything does happen for a reason. There is no place for blame, it just doesn't work like that. It does no good to look for a reason to blame negative things on what you are going through. I know it does not feel like anything good will come from this, but if you will only keep faith and know there is a reason. The worse thing you can do is to give up. You are better than that and you will find the strength through this.
What is going on in your life may be a plan for your life to change and to realize there are so many good people willing to help you, let go of those that are just dragging you down.
God Bless you, and just know you don't have to know someone to care for them. We are all connected through love.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #12  
Old Tue Feb 4, 2014, 01:39 AM
dfantle dfantle is offline
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Pretty Funky, I realize this is a scary time, but even in the short term, this is manageable with transfusions while other treatment options are considered. You are in shock, a lot is going on right now but this site is a great resource & support group.

I also am in the Seattle area and there are wonderful hematologists here who can help you. If your insurance allows you to go to Seattle Cancer Care Alliance (SCCA), call them ASAP & make an appt. They are part of the UW medical Center & Fred Hutch system and have specialists who know how to treat this, can confirm your diagnosis, discuss treatment options... They also have an amazing support system with a resource center, social workers... Their # is: 855-557-0550.

Please don't give up hope. As others have said this can be very treatable. For example, I just celebrated the 1 year anniversary of my transplant & my bone marrow is now normal. Hang in there.


Best,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #13  
Old Tue Feb 11, 2014, 08:03 PM
PrettyFunky PrettyFunky is offline
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Thank you all for the outpouring of support and information. I've also joined the Facebook group and have found an immense amount of support there as well and wonderful positive stories of healing!

I took my mom to my appointment with the aplastic anemia specialist. She gave the absolutely best response to the doctor. "People don't die from anemia! They just need to take iron and eat right!" Uuhhhh... She has no understanding what aplastic anemia is, even after he tried to explain it to her. She has no clue what bond marrow is, T-Cells, or anything like that. Then she got scared and hostile and started crying. So all in all a typical mother-daughter interaction for us.

I've been getting platelets transfused. The nurses and staff have been so wonderful. They're my mini counselors for the diagnosis and the other issues in my life, especially since I'm going in alone.

My RBCs are falling again and my ANC falling. I wanted another RBC transfusion since I felt really good not being anemic but the specialist said it is better to get less transfusions if bone marrow transplant is the treatment we go for.

If I get matched for a bone marrow (my sister still won't consider seeing if she matches), I have to decide transplant versus ATG/ciclo therapy. On Facebook I asked which option everyone would go for given my situation and everyone split. But the benefit of transplant is I wouldn't have to worry about ATG failing years later and me needing a transplant? I don't know. It's less invasive though and I have such a lack of emotional support I don't know how I could handle a transplant right now.
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Old Tue Feb 11, 2014, 08:25 PM
Kathy S Kathy S is offline
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Pretty Funky,
So happy to see you with a more positive attitude. We have all been where you are at (even as a caregiver we are scared for our loved ones) and it is a roller coaster ride. Stay strong, you will have support from many people. All of this happens for a reason to which sometimes we have to go many years for the answers.
God Bless.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Wed Feb 19, 2014, 08:39 PM
PrettyFunky PrettyFunky is offline
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Thank you! I've been getting refueled with RBCs and platelets and have found the staff to be a wonderful support system! I'm moving forward in treatment which is beyond scary. I have spent so much time researching the best approach, what I can handle physically and emotionally at this point in my life, and have four potential MUD. No extensive confirmation testing has been done. My insurance doesn't cover it and I am trying to find what my options are for securing funds.

Right now I'm still indecisive about going ATG route or wait to see if I have any definite matches, or both? Maybe ATG wouldn't work for me or would fail at some point? It's all very scary to think about.

One of my best friend's mom died this week and so she is out of state. Another loss in life and tragedy. I would have gone with her if I wasn't so afraid and dependent on transfusions at this point.

Emotionally I'm in turmoil due to so many horrible events, but I'm trying to focus on my health. My team of staff has become my mini-counselors but no one can possible understand the wreckage a person with a personality disorder can leave behind in your life until you've experienced it. Not a great time for that to happen. I need a strong heart right now.
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Old Wed Feb 19, 2014, 11:45 PM
demphenom demphenom is offline
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Quote:
Originally Posted by PrettyFunky View Post
Thank you! I've been getting refueled with RBCs and platelets and have found the staff to be a wonderful support system! I'm moving forward in treatment which is beyond scary. I have spent so much time researching the best approach, what I can handle physically and emotionally at this point in my life, and have four potential MUD. No extensive confirmation testing has been done. My insurance doesn't cover it and I am trying to find what my options are for securing funds.

Right now I'm still indecisive about going ATG route or wait to see if I have any definite matches, or both? Maybe ATG wouldn't work for me or would fail at some point? It's all very scary to think about.

One of my best friend's mom died this week and so she is out of state. Another loss in life and tragedy. I would have gone with her if I wasn't so afraid and dependent on transfusions at this point.

Emotionally I'm in turmoil due to so many horrible events, but I'm trying to focus on my health. My team of staff has become my mini-counselors but no one can possible understand the wreckage a person with a personality disorder can leave behind in your life until you've experienced it. Not a great time for that to happen. I need a strong heart right now.
have your doctor fully explain both the success rate of ATG and BMT as well as the potential risk and complications. It is a tough decision but it helps to have as much information so you make the decision that is best for you and that are happy with.

My advice is this. You can go through ATG, if it does not work you can go through another ATG, if that doesnt work there is ongoing research for promacta being used for AA that is another option in the future if all else fails BMT will still be there. This equation does not work the other way around if you go BMT you cannot then go and do the other options. BMT does offer the best hope for normal counts but it comes with greater risks and GVHD.
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Old Thu Feb 20, 2014, 12:48 AM
Neil Cuadra Neil Cuadra is offline
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PrettyFunky,

Don't be shy about asking the treatment center for financial advice or financial assistance, and check out any patient financial aid and advocacy organizations that might be able to help you or steer you to other resources.
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  #18  
Old Thu Feb 20, 2014, 08:48 PM
PrettyFunky PrettyFunky is offline
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I'm in the process of financial assistance. Just have to get taxes sorted out. I have some complications related to a car issue unfortunately.

I'm scheduling ATG. Will be in the hospital four to five days. Right now this is the easiest option for me. BMT will be the backup obviously. Hoping for success.

I have a fever today and spent the day in bed. Monitoring that and might have to go in if it gets over 100. Unfortunately last transfusion I had my ANC was only 0.8 :/ Not as bad as some I've seen but it's definitely falling. My poor neutrophils. I wonder if they'll increase because of the fever.
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Old Fri Feb 21, 2014, 12:12 PM
sbk007 sbk007 is offline
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Some insurances will not pay for the HLA testing on potential donors.
The initial screening is free but the actual drilling down to see how good the match is might not be and its around 3-4k per potential donor.. The way it works at Weil-Cornell is if your monthly income is less than your monthly expenses including car payments, mortgage, food, etc. then you apply for a grant. The funds for the grant comes from donations people make to the hospital,. i.e. charity.
Hope things go your way with the ATG and you don't need to go that route.
All the best!!
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  #20  
Old Sat Feb 22, 2014, 03:06 PM
PrettyFunky PrettyFunky is offline
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Location: Seattle
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My insurance is one that won't do the extensive testing. I have had a fever and might end up going to the hospital but I've found some support in life with an ex boyfriend who is a doctor (don't worry, he's not acting in the role of my medical advisor or anything, just being a genuine friend), and that's been a wonderful reconnection of friendship that has lifted my spirits. Reminds me there are honest people out there with integrity and actual heart and the capacity for forgiveness. So I have a few friends who are rallying around me and I know I won't be alone going through this process now! I feel much stronger. I forgot that my ex is a definite Dr. McDreamy. Best looking guy I ever had the fortune of dating, although we are much better friends and nothing else (this is NOT the same ex I wrote about before).

I may have to go in and get this fever checked out. I just didn't want to get admitted. Hate spending the time in the hospital but maybe I'll actually have a little company this time

Thank you all for the resources as well. I don't know what I will qualify for. I have a pretty good job, but some complicated finances. Luckily I got rid of my mortgage (maybe that'll hurt though when they deduct living expenses?). I'll have to figure it out.

I'm known for having wacky reactions just to being transfused so I'm worried ATG will be harsh on me. I've been on corticosteroids in the past and HATED them but I will be complaint in ALL my treatment. I want my poor bone marrow to recover!

Last edited by PrettyFunky : Sat Feb 22, 2014 at 03:18 PM. Reason: Many grammar edits because my brain is muddled with fever
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  #21  
Old Sat Feb 22, 2014, 10:14 PM
Kathy S Kathy S is offline
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Join Date: Nov 2013
Location: Leesburg, Fl
Posts: 72
Wink

Pretty Funky,
I am happy to hear that the true friends have rallied around you. Just when you think you are alone and everything is at its darkest you see a light and it will guide you.

Blessings to you and keep us informed as to your outcomes. Keep the faith and it will get you through.
Sincerely, Kathy
__________________
Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #22  
Old Tue Feb 25, 2014, 01:04 PM
PrettyFunky PrettyFunky is offline
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Join Date: Feb 2014
Location: Seattle
Posts: 15
I've decided against treatment. I'm going on a road trip and home 800 miles away. Too much heartbreak, too many mistakes, too much in life that has killed my soul.
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  #23  
Old Tue Feb 25, 2014, 03:21 PM
Karenish Karenish is offline
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Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
At the end of the day this is your decision, but I would urge you against it. I thought I had it tough, AA hit me when I thought I could not take any more, but 3 years on, my life has turned around, I am stronger, more resilient, and have more goals and plans that are what I want (and not what anyone else wants) to keep me ticking on until my old age.
None of us know when our time is up, but sometimes getting something like this is a wake up call to put things right.
You may be feeling low as you have an infection right now, but use your friend, think towards the future and imagine your new life.
Take good care of yourself, you can do this, and you are not alone -
best wishes for a quick recovery - Karen
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  #24  
Old Tue Feb 25, 2014, 04:05 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi PrettyFunky,

Once diagnosed with AA, you need to get treatment ASAP. Otherwise, you risk the possibility of further progression and evolution of the disease. You are young and I think that you mentioned that your Absolute Lymphocyte Count was decent. Both are very good markers for a positive response to ATG. You don't need the support network for ATG that you would for a BMT (although it doesn't hurt). The doctors and nurses will take care of you in the hospital. They should test your skin before they administer the ATG to look for a severe reaction. They won't administer it at all if you have a very adverse reaction to the skin test. You can also have them administer it at a slower rate.

After ATG, you will hopefully be on your way to recovery. It is a different feeling. Even if you do replase years later, you will be in a different space in life and won't be as blindsided as when you were first diagnosed.

You can always do the road trip after ATG. The road trip can wait. Treatment can't.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #25  
Old Fri Feb 28, 2014, 12:54 PM
PrettyFunky PrettyFunky is offline
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Join Date: Feb 2014
Location: Seattle
Posts: 15
Thank you both for the responses. I ended up in a very dark place and went to the coast to get away. I can't say I didn't want to just die as dramatic as that sounds. I feel like AA couldn't have come at the worst time and just wanted to give up on my life. I read here how so many people have it much worse than I do and realize this fight isn't easy no matter what point you are in life.

I'm going home and will resume my treatment. I skipped getting transfusions and just left and went to the coast, on top of probably having a mild infection, so I'm feeling really bad and realize I put myself in danger.

Emotionally I may be getting slandered by my ex, but I'm not sure. I've received very odd emails from one of his friends and it's taken it's toll on me. It's been worse than a divorce and happened so soon before my diagnosis it was like a double whammy in life for me, and the ex has shown himself to be a totally different person than I could ever imagine. The only comparable things I can find are articles I read on narcissist and sociopaths "discard" of a relationship, and the relationship fit that pattern, so I've been left with so many questions, so much confusion, and a lot of despair.

I have to keep going though. I became so depressed going to my transfusions alone, my appointments alone, after promises from the ex he would always be there for me, then it turns out he honestly wouldn't care if I lived or died right now. My mom entered rehab again. It just all became so much to bear that I went away to escape.

I have the support of my other ex, Nick (I swear I make it sound like I have exes everywhere but I only have three: my ex husband who I have nothing to do with now, my doctor ex who is a stand up, incredible friend, and my liar ex). He's proved to be a great friend and always was a completely honest, genuine guy and I know he will go above and beyond to help me. I'm actually probably going to be moving in to his guest room, as I lost my living arrangements and I would feel better having the emotional support and kindness of his friendship, plus I think it will help for my treatment.

I ended up getting a cleared head over here on the coast and will proceed with life.

Thank you for offering support and stories and letting me ramble. It's nice to be heard and to know I have a place like this. I'm also interested in the treatments I read here, such as Promacta. My platelets are my worst line that's affected so hopefully there will be good news regarding that drug getting fast tracked approval.
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