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#1
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new to forums, saa
hi everyone
my name is Summer. I am 25 years old and was diagnosed with SAA on May 17, 2013, recieved my transplant on june 7, 2013 and was discharged from the hospital on june 27, 2013. my numbers started continuously dropping when i was about 7 months pregnant with my daughter. while in labor with her, my platelets kept dropping. i delivered at 13000 platelets. i was scared to death1 they had bags of blood ready and had an iv placed in my neck just in case i started to bleed out. (which i didnt) you have to have over 80000 platelets to have an epidural so i had my daughter without any pain medications at all. totally not the plan, but i knew i could do it. well she was coming either way so after i had her, my platelets were 15 and my hemo was 7. they let me go because i was fine otherwise, just wanted me to see my hemotologist in 2 weeks. so i kept seeing this hemotologist who told me that i was just a mystery and he couldnt figure me out. he send me for blood transfusions and platelets numerous times and they didnt work at all. i finally got fed up and decided to go down to the ohio state university emergency room because i had heard there was a cancer hospital which meant lots of good hemotologists were going to be there as well. when i got there my platelets were at 6 and my hemo was a 5. i just thought, they will just give me a shot or something and send me on my way. boy was i wrong. i was admitted immediately and spend the next 6 weeks in the hospital. away from my 6 week old newborn baby girl. i was devestated. my mom brought her to see me every day she could. anyway, both my brothers were tested and one was a match. they told me it could take up to a month to get his results, and it only took three days. i was transplanted within 2 weeks of finding out he was a match. i did a week of chemo and atg. i also had one radiation treatment that made me sick as a dog! i am now almost 7 months out of transplant and feeling amazing. hemo is 13-14 and platelets are in the 130-160 range. have had some gvhd symptoms but nothing serious. i can enjoy being a wife and a mom as i am supposed to now. very thankful to be here!! p.s. i apologize for all the grammar mistakes. my phone wont let me capitalize or use good punctuation |
#2
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Thanks for posting your story, Summer.
The doctors were so fast to get you to transplant after your SAA was diagnosed that you must barely have had time to think. 2013 is certainly going to be a year you'll remember for its highs -- the birth of your daughter -- and lows -- a scary pregnancy and birth experience, the transplant, and having to be away from your baby. Three cheers for your brother. Transplant donors are my heroes. I hope you can keep GVHD at bay and get your platelets up a little more, but overall it sounds like you are doing quite well. How often do you have to go for CBCs and a checkup? |
#3
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it is wonderful to hear such good news. God was in your favor to give you the people you needed in your life. Continue with many many more years of health and happiness with your daughter and family.
__________________
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 |
#4
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thanks! and yes, 2014 can't come soon enough.
Neil, I get my cbcs every two weeks locally and see the doctor once a month. |
#5
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wow! your story is amazing, I'm so happy you are doing well, and your baby!
One of my post-transplant hospital visits overlapped with you! I was on the 3rd Floor June 26-29th for a bout of Pericarditis and Thyroiditis (caused by some unknown virus).
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Rea, 31; PNH/AA Nov. 2011; Horse ATG Feb. 2012; RI MUD BMT Jan 2013; Overall doing very well! |
#6
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Hi Summerdrake,
Thank you for sharing your story. It is so encouraging to hear - new life in the world with your baby, new life in your marrow from your brother. It is also great that you feel so much better. I know how amazing it feels to have a Hgb of 13 after suffering through an Hgb of 5-6. I try to remember every day how fortunate I am to have responded well to treatment. I hope the new year brings continued strength and improvement for you!
__________________
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. |
#7
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@Rea, sorry to hear you were back in there but it's kind of neat to know I wasnt alone then. I was on the 3rd floor as well. Do you go to the clinic still? Not sure if you had Dr. Penza but I love him! He and the whole transplant team have been so great at the James.
@KMac, yes. Each day is a blessing. I didn't even realize how bad I felt until I started feeling better if that makes sense. I thought I was just the typical new mom that was tired all the time. So glad you're doing great. It's scary to hear all the things that can go wrong. We are very fortunate! @KathyS, sorry I missed you! Yes, God has had his hand on me through the whole thing. I wasn't sure what my testimony would be throughout this trial but I am still here for a reason. Walking by faith can be hard, but so rewarding. Hope all is well with you! |
#8
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Thank you for sharing you story, I really enjoyed it and I am very happy to hear you and you family are doing well
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