Sickle Cell(issues with finding a good doc near me<nc...sc>)diagnosed as an adult not long ago, after relocation... (gallbladder, pain)

[Mizznene]

I live near charlotte nc (relocated)but I am from dc (when im there I do go to HOWARD UNIVERSITY SICKLE CELL CTR....the best so far!) But willing to travel. When I left dc permanently is when I got extremely ill (it was said climate change triggered it), before then I never ever was sick. So now I am seeking a great doctor that "SPECIALIZE" in sickle cell that will see more than children, and that will listen,help,and be concerned about their patient. I am newly diagnosed and as an adult, this was terrible for me because by the time I was diagnosed, my prognosis was not good. I have lots of the underlined "other diseases and issues" that the disease cause. I was a nurse and paramedic of more than 14yrs and now I am totally disabled and niw on medicare. So Pleaseee!!!! I really need a great doc. Please help if anyone know some great or better than great docs, please message me or respond. Oh yeah and Duke is not an option...they cared for me since I got diag and they are ok but not too understanding when it comes to explanations this patient needs. TY in advance for even taking the time to read this thread. All questions for me, can and will be answered upon request. Be Blessed. Andbut

[chuck_steak]

Best to get a Oncologist/Hematologist doctor. Do you know what type of Sickle Cell you have? If you weren't on PCN as a child for the first five years of life you could have more problems. Since you just got diagnosed as an adult I'm assuming this didn't happen. Some forms of Sickle Cell aren't as bad as others. Do you know if it's the disease or trait? I'm assuming it's not the trait since you said the news wasn't good.

Here is a link I found for a doctor in your area. Good luck~


http://www.carolinashematologyoncology.org

[suzy_q2010]

Originally Posted by Mizznene

I live near charlotte nc (relocated)but I am from dc (when im there I do go to HOWARD UNIVERSITY SICKLE CELL CTR....the best so far!) But willing to travel. When I left dc permanently is when I got extremely ill (it was said climate change triggered it), before then I never ever was sick. So now I am seeking a great doctor that "SPECIALIZE" in sickle cell that will see more than children, and that will listen,help,and be concerned about their patient. I am newly diagnosed and as an adult, this was terrible for me because by the time I was diagnosed, my prognosis was not good. I have lots of the underlined "other diseases and issues" that the disease cause. I was a nurse and paramedic of more than 14yrs and now I am totally disabled and niw on medicare. So Pleaseee!!!! I really need a great doc. Please help if anyone know some great or better than great docs, please message me or respond. Oh yeah and Duke is not an option...they cared for me since I got diag and they are ok but not too understanding when it comes to explanations this patient needs. TY in advance for even taking the time to read this thread. All questions for me, can and will be answered upon request. Be Blessed. Andbut

So sorry to hear about your difficulties. You could ask the folks at Howard if they know a good adult hematologist in the Charlotte area, or contact the pediatric clinic at Presbyterian to see where their patients go when they "age out."

Sickle Cell Services

If it looks like Duke turns out to be the best medical option, you need to speak up for yourself. Make sure they know you need more information.

[Mizznene]

Oh my my life has been not so good for a while now, and I am still having the same issues I'm sorry I didn't respond soo long ago but thanks for all the responses. Now....I have sickle disease not the trait, the kind I have is sickle beta thal. Its not suppose to be as bad as ss but mines was really bad by the time I got diagnosed. I have a lot of the diseases it cause right now, and when I got my diag, I was very sick by then. Had I not relicated I may be deadvby now, me moving is what triggered the flare up, it was the climate change. I been on the ventilator four times, had many tia's, crisis are plenty, I have avascular necrosis(both hips), on oxygen 24/7, all teeth removed at 35(mouth crisis), gallbladder gone, rotator cuff fixed, rls is bad, eyesite is now bad, hearing too, prolasp bladder and rectum, pulmonary hyprrtension and with all that, the pain is chronic and acute. Blood tranfusions and exchange transfusions are many. Yet everytime I need help they blame drug seeking, its embarrassing and hurtful that because I sm an upset patient tht I cant get treated correctly and for that my health is failing so fast. I was forced out of the work world because this condition is so disabling when diag as an adult. Had I not been misdiag for 31yrs I may have been treated as an infant, but was told I had the trait, until I found a very concerned doctor who retested me the right way and not jus do s cbc. I was at duke but my frustrations gitvme dismissed honestly I regret it because dr. Decastro was the best and is who confirmed my diag and is a real SICKLE CELL SPECIALIST with hands on experience at home and office, not just a hematologist trained. Right now I just need a good ss specialist because I really feel like giving up. Please any info will help thanks for all the concern and help. God Bless ps...please excuse my typos and short cut talking....