Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: studentmidwife on July 17, 2011, 04:34:45 PM
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Hello,
I am a student midwife in the UK currently doing a project on thalassaemia and have become very interested on what experiences people have had. If anyone would like to share there story with me i would be most appreciative! I would especially like to know how you felt you were treated by health professionals (not only midwives, but the docs, haematologists, counsellors etc).
Thank you for you time :smileblue
Catherine x
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Hi,
I am pregnant with my 3rd child. I have thal minor and every time I get pregnant I feel awful!! My worst symptom is shortness of breath which starts around week 6 and continues throughout my pregnancy. The hardest part is the first trimester, I have no energy, SOB upon any exertion, nasal stuffiness, and occasional heart palpitations. I also get very light headed when standing. Pregnancy is very hard on me and my Hgb usually is about 8 the entire time. My doctors never really address it and just give me iron, which I know not to take. I always wanted 3 children, and it took me 4 years to come up with the courage to do it one more time!!! I had hoped that somehow I would feel different this time, but I don't. All of my symptoms have appeared in full force. I am currently 9 weeks and I feel like I have the flu everyday! Another new symptom this pregnancy is I am always cold, I am attributing that to anemia. I go for my first blood test next week.
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Hi Terri,
Are you currently taking any supplements?
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Hi Catherine,
I am Thal Minor and have a 4 month old. I had difficulties with my pregnancy as well. I actually found out I was pregnant when I passed out at work. When I went in the doctor told me I would have a miscarriage due to low fetal heartbeat and blood in my uterus. I didn't bring up Thal until my follow-up appointment. My doctor did not know much about Thal and did not address my concerns. I started having problems with headaches, numbness in my hands and dizziness/shortness of breath at the beginning of the 2nd trimester. I was referred to a hematologist after I kept bugging my doctor about my concerns and had one big melt down in front of her when I almost passed out at work again. The Hematologist was actually really great, she was very knowlegeable about Thal. She did iron panels and checked my hemoglobin every 2 weeks. Before that it had only been checked once when I first went in and then again for the start of the 2nd trimester. I ended up getting iron infusions every 2 weeks for the rest of the pregnancy because I had difficulty taking iron supplements (they made me vomit, upset stomach, etc) Once I was able to address my concerns with the Hematologist thing went better with my OB. My hemoglobin remained low 8-9 range for the rest of the pregnancy. After delivery I went in for a follow up appointment and my hemoglobin was still a low 9 (Pre-pregnancy I was in the 11 range). I think the next pregnancy will be easier because I know what to expect. But it can be very scary and frustrating when it seems like no one wants to listen.