Sikcell: People living with Sickle Cell

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Looking for a good doctor that provides treatment for sickle beta thalessima

Hi Everyone!

I am new to the blog and am grateful to find others out there like me who have a form of sickle cell. I am currently residing in Minot North Dakota and am eagerly seeking a good doctor that provides treatment for sickle beta thalessima. I will be undergoing a vitrectomy within the next 2 weeks to repair a significant tear in my retina. If anyone can give me leads on a good medical provider I welcome such.

Thank you!

Monica

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Comment by Monica on March 2, 2009 at 10:27pm: Oh you are FUNNY with your comment about the weather Shukura! You know good and well how cold it is here! 70's tomorrow? How funny. Thank you for the information about your hematologist. My husband and I just met with a nurse case manager this afternoon who stated that they will begin the process of locating a good medical provider for me, as they are not able to provide the type of care that I need here at Minot. I do thank God for the willingness of the nurse case manager to do so. I do know what you mean about the meds being addictive, I too try not to use them unless I just have to do so. One of the questions the nurse case manager asked us was about how rare my diagnosis was, I could not give her an answer. Do you know where I can find quality information on Sickle Beta Thalessimia?

You also mentioned that you have "usually been on large bases with very good facilities" what bases in your experience have provided good care?

While I try and stay warm, you try and stay hydrated!!!

Monica

Comment by Monica on February 28, 2009 at 11:54pm: Hi Shukura,
Thank you for your response. Yes, I am all the way up here in Minot North Dakota due to the Air Force. My husband and I are stationed here. He is active duty. In regards to my eye, I went for a routine eye exam here on base, the eye doctor noted something was wrong and immediately referred me to an Opthamologist who did a through exam and stated that in "all his 30 years of his career, he had never seen anything like what I have." He then referred me to yet another Opthamologist who after doing yet another through exam referred me to an eye specialist at the Mayo Clinic in Rochester Minnesota. I have been diagnosed to have "proliferative sickle cell retinopathy in the periphery with traction with a dense epiretinal membrane in the posterior pole and a partial thickness hole" All of this is in my right eye. At the present, my left eye is fine. While at Mayo clinic, the Dr. performed "peripheral laser photocoagulation" I am scheduled for a "vitrectomy and membrane stripping to the right eye" A gas bubble will be placed in my right eye, and I will have to lie face down for two weeks after the procedure.

I was also seen by the hematologist there at Mayo who was not comfortable given me proper medical advice based on not having seen enough cases with my condition. They recommend that I see a specialist at the University of Illinois in Chicago. Wer are working on this process through the referral process with my primary care physician here on base.

I noticed in your email reply that you stated you see a hematologist on base. How is the care where you are stationed? It is nice to talk with someone who has what I have as well. Know that I will keep you in my prayers.