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Permalink Reply by Neise on March 28, 2009 at 2:25pm

Hi,


I am also new to the forum.

I am 36 yrs old living with sickle cell anemia. I have developed many complications from the illness. I have been diagnosed with avascular necrosis which is a degenerative bone disease, deep vein thombosis or DVT which is a blood clot located in my groin, mitral valve prolapse which is a condition affecting my heart and arthritis.

Coping with different ailments adversely affecting my sickle cell disease has been trying. The key to it is first and foremost your faith. Secondly you have to have a team of physicians that understand your illness and are willing to work with you to come up with a daily regiment that would be most beneficial to you. I am located in Cypress Texas (USA) and it has been very hard finding physicians that are compasionate and understanding of my ailments. This is one of the reasons why I am trying to reach out to different organizations that will be both beneficial and encouraging to me as I fight this daily battle. I am finding that it does help to know that YOU ARE NOT ALONE!!!!! There are many of us out here fighting and trying to cope with this disease and the stigmas attached.

It is a daily battle but keep the faith and know that GOD will never put more on you than you can handle. That is the one thing I try to focus on.

I hope this helps (at least a little bit :-}

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Permalink Reply by Lusubilo on March 30, 2009 at 5:17am

Thanks so much,

Indeed its good to know that am not alone.

What do you do to increase your hb ? There is not much here in terms of information on effective foods or fruits that one can take which help and the blood transfusion therapy am on in so scary for me.

I really appreciate the advice and await your response

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Permalink Reply by Neise on April 1, 2009 at 3:33am

You are very welcome!

I definitely can relate to the fear you have of getting blood transfusions. It's scary for me as well. There are a couple of things that I know of that are great for building your hb. Yams or sweet potatoes, beets, okra and red wine are a few things that are great for building your blood. I'm not saying that eating these foods will be enough to eliminate you having to get blood transfusions completely but these are a few essentials that will definitely aide in increasing your hb level.

How often do you receive blood transfusions?

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Permalink Reply by Lusubilo on April 6, 2009 at 4:30am

Hi,
am sorry i think the last post was not properly sent or something went wrong somehwhere.
i have received about 8 units of blood between end of september 2009 begining of january 2009.

My current hb reading as of last Friday was 6 and has been at 6 since then. am being told to try Hydroxy urea but am scared to try it.

Hence my search for alternatives , the doctor has put me on feroglobin and in a month if it doesn't help increase my hb then am going to be left with no option but to try the hydroxy urea.

Am pretty worried becuase now they suspect that i may have pulmonary hypertension becuase of tightness i keep getting in my chest but becuase they have to do a bit more research on how to handle it they have told me they will call me in for a re-evaluation when they are ready.
all in all its pretty upseting but am trying to keep positive and with God's help i will get over this hurdle...

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Permalink Reply by Neise on April 6, 2009 at 12:37pm

I am so sorry to hear that. I will definitely keep you in my prayers Lusubilo. I really hope your phsycians stay on top of your situation. A lot of sickle cell patients have pulmonary hypertension so that is not uncommon. I know that it is still quite upsetting.

As for hydroxyurea, It can be very helpful with some people. I use to take hydroxy years ago and it was not that beneficial for me but I have read different blogs and articles of individuals that have benefited from it.

I know all of these different rememdies can be a little scary but I think overall Hydroxy is a safe alternative. I haven't really read anything that supported this medication being harmful but I am no expert.

I just wanted to let you know that I will be here for you anytime you are worried or scared or if you just want to talk. I am learning that it helps to have someone that understands your pain and can empathize with your plight.

Just know that with GOD on our side, all things are possible for those who believe and trust in HIM. HE said HE would never put more on us than we could bare. I know sometimes it gets hard and we get a little discouraged (I know I do) but GOD chose us for a reason. Each moment we survive we glorify HIM and are witness to HIS loving kindness and tender mercies. Just keep surviving my Sickle Cell Sister.................

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Permalink Reply by Lusubilo on April 11, 2009 at 1:56am

Thanks so much ,

It means alot to hear that someone especially one who has the same condition as me ,is there for me.

Truly am grateful we met and for the chance to just talk to someone who understands what its like to go through life with sickle cell .

I guess because i have not been so up and down with my health before it all feels new and scary at the same time.

what's worse is that even before i had any real problems, it was hard dating because of this condition and now with the advent of complications i am wondering what chances i will really have down the dating road. People act like Sickle cell means you are bound to die or you'll be a big burden!!

Am taking it easy and though the times do come when i get real scared am learning how to trust God and discovering a much firmer faith than i have ever had before.

I totally agree that each moment we live we are living testimonies of His grace , mercy, love and goodness.

I Hope you are having a blessed easter and thanks again for being a blessing to me.

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