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AA Aplastic anemia

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  #1  
Old Wed Mar 13, 2013, 09:20 AM
LoveRapheal1 LoveRapheal1 is offline
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Join Date: Dec 2012
Location: New York
Posts: 54
Decided to opt transplant

Hello Everyone

I've decided that there will be no drama or complaints and to have faith that God will get me through this. I'm in my sixth month of treatment. My platelet counts are low but I haven't needed transfusions since January 25th. My white cells are falling and I needed two packages of blood March 1st. My doctor (who is a skilled professional in his field) said that he thinks I should halt the transplant since I have shown some hope. I have read these forums and survivor stories and I think I might be brave enough to take a chance. I am 38 years old and I have been diagnosed with severe aplastic anemia. They do not know the cause. I have been blessed by a doctor who has found 4 unrelated 10/10 matched donors. They explained all the risks and possible graft host rejection and death. My appointment is in April and I will follow up with everyone about my experience. I have decided to go shopping and purchase some things to occupy me while I'm there. I think some spiritual material, wigs and writing journals may help. I am also going to purchase some beautiful wigs since my appearance is important to me. I've decided to eat well and do some light exercise every day until I am ready. I thank everyone on this site (including squirrelypoo) who has shared their experience, strength and hope. I do believe that I will push through this. Oh yes and attitude is important. If I can overcome other things than all things are possible with Christ.
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  #2  
Old Fri Mar 15, 2013, 06:56 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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All the very best to you! I hope your transplant goes well, and will look forward to hearing about your progress. Philippians 4:6 for your encouragement.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #3  
Old Fri Mar 15, 2013, 10:27 PM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
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Wishing you all the best with your transplant. I know it wasn't
an easy decision to come to but you have such a positive spirit & energy about it which will really help you a lot. Your plans to eat well and exercise regularly until then are very smart. I also tried to gain a few extra pounds as a buffer since I knew there would be some weight loss and my body weight was normal before I made this decision. I also made some favorite fairly bland but healthy foods and froze them in advance in individual servings, such as chicken soup with matzoh balls, and sweet potato & coconut milk soup. Still not eating many veggies yet so other than carrots so if you decide to make things in advance you'll want to really limit the veggies to those that are really easy to digest
(NO peppers, onions, broccoli...).

Feel free to ask me any questions. If your clinic has physical therapists and or nutritionists, who work with transplant patients, these can be great people to meet with both before & after transplant.

Just curious what your platelet, white cell and neutrophil counts have been & how frequently you have been needing the red cell transfusions. Also if you've been healthy with no cold/flu issues or need for antibiotics since your counts started dropping.

I'm now 6-1/2 weeks out from my mini+ donor transplant. Hard to believe its already been 6 weeks already!!

Also, thought it could be helpful for you to know we received the nicest note from my 20 year old male donor, which was truly a surprise since I had been told no communication for 1 year. Apparently there can be anonymous communication sent, but it has to go thru his donor center and my clinic. They then edit and black out any identifying information before sending it on.

Best of luck!
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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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  #4  
Old Thu Mar 21, 2013, 12:54 AM
LoveRapheal1 LoveRapheal1 is offline
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Join Date: Dec 2012
Location: New York
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I wonder why you're not allowed to communicate? Either way it is interesting to know who it is that may be saving your life. I guess it's nice to know. I wonder did your doner mention his or her age or gender? I guess it may put some people at ease by giving them a sense of familiarity.
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  #5  
Old Thu Mar 21, 2013, 01:02 AM
LoveRapheal1 LoveRapheal1 is offline
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Location: New York
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dfantle

I think it's nice that your doner sent you a letter. It might give some people a sense of peace knowing who the doner is. I wonder is he or she from the same country or a different country? Of you don't mind me asking is your doner male or female ? I don't know if the diner has to match age or gender. Either way good luck
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  #6  
Old Thu Mar 21, 2013, 02:59 AM
dfantle dfantle is offline
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Hi, age match, from what I understand is not used as a factor. Gender match may be considered but its not a major factor, depending on the other factors, from what I understand.

Regarding privacy, Once my donor committed, my clinic was able to share only his sex, age, and country. These are international donor rules until 1 year following transplant for the US and apparently 2 years for some other countries, as long as both the donor and recipient consent. Apparently it protects both sides as some recipients or donors may not want to know. I definitely do so was thrilled my donor reached out to me but the communications can not be direct yet. All he knew about me before my transplant was my age and sex and perhaps country. I was then allowed in my return letter to mention my illness, & let him know how well I'm doing, and a bit about my family. It's not an option for me to share more info at this point or it would have been blacked out in my return letter by my clinic. There were a few word blacked out in his letter to me.

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

Last edited by dfantle : Thu Mar 21, 2013 at 04:37 PM.
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  #7  
Old Thu Mar 21, 2013, 01:29 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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Donor-recipient communication during the first year

Guidelines from the National Marrow Donor Program for U.S. donors:
Information a donor can and can't send a recipient

Information a recipient can and can't send a donor
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  #8  
Old Thu Mar 21, 2013, 04:48 PM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
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Thank you Neil. Interesting to know this is donor center dependent.

When my clinic sent me guidelines, I was really surprised that I could send a gift, such as CD's, flowers or non perishable food. Would love to send my donor something, but without knowing his likes/dislikes decided to wait. With a 20 year old male, its difficult to even know what to send.
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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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