Comment

Comment by Heather Davis on November 4, 2009 at 8:20am

Sharolyn,
My name is Heather and I am a 28 year old living with SS. This transition is not going to be easy, and understanding that is your first step to being able to deal and cope. I suggest you ask her current Hematologist if possible to set up a tour of the adult clinic, you may want to do a meet and greet with the nurses and staff of the adult clinic. Yes, this transition can be very difficult, but it is very important to allow her to stand on her own two feet and to make sure that she understands that she has to be her own advocate. My mother has told me since I was of a young age, that I will always be my own best advocate. If you must switch Hematology clinics and Dr’s you may want to “interview” a few, get a few recommendations, and do your research on each doctor. Remember that just because you may want to stay within the same system or network, it may not be in her best interest. Choosing a Hematologist is not something that you would want to settle on or take lightly. Also be sure to ask your current Hematologist, if it is possible, for him/her to consult when needed or if you feel you want a second opinion.

Comment by Tasha Benjamin on November 3, 2009 at 11:20pm

Hi Sharolyn,my name is Tasha,I'm a 36yrs old mother of 4 living with sickle cell anemia! As a child coming up I had a hard time,I'm orginally from Paterson,NJ & I bearly went to school.I would go to school from Sept to the Christmas Holiday I wouldn't go back til April or even May but I had a tutor.I really don't remember the transition,I do remember I was excited cause I wasn't around kids.My parents never gave me pain medicine when I was a child,I just learned about it when I was 22,I never wonder why they would just try to make me comfortable & rub holy oil on me,when I did learn about pain medicine I became addicted to it for about 14months & I just stopped on my own cause I knew how to controll my pain,I knew what would make me go in crisis,I knew exactly what would make me sick I learned my body,now that I am 36 I don't take any medicine from the doctor because I am scared of getting addicted to it,those medicine can be very addictive so if they do give it to her make sure you monitor her cause the pain hurts so bad you take the medicine & if its not working right away,you'll take another & another just to get rid of that pain,I'm just telling you what I went thru & what I've seen other patients go thru also,now all I take is advil or aleve for my pain,I surround myself with happy people,I drink plenty of water take all my vitamins,I stay warm I mean very warm the cold plays a big part of our pain,I don't over do it,I practicially lived in the hospital,I had lots of surgery,four babies & I'm still here yes I may say I am very bless cause they told me that I couldn't have any babies(yes its a bad idea to have them with an illness such as mine)I have 4(16boy,13girl,10boy,9girl)they keep me going,keep me living!

Comment by Sharolyn Hutchinson on November 3, 2009 at 9:24pm

We live in NJ. I think that her hemotologist can refer her. I will ask. She tries to be tough but I know it is hard for her. I think she will have a hard time with the transition. I baby her to much and I dont know how to stop. I will have to because she needs to learn to be her own person.

Comment by Marcus McKinley on November 3, 2009 at 7:38pm

Hey Sharolyn, I am 24 and have SC hemoglobin SS and I kind of learned the hard way. Luckily my hematologist while I was in high school knew a hematologist where I was moving to for college. It is a breeze during pediatrics and during adulthood it is not so smooth. Even harder, financially, they kick you off of your parents insurance after you 24 birthday if you're a student. Let your daughter know about the different SC forums and discussion boards, there are not alot and this one is the most interactive, because the young adults on here may have experienced different things. She has to learn to listen to her body, eat healthy, talk talk and talk to her doctor, see if her pediatrian or hematologist can refer. Where do you'll live? Do they have a SC Clinic or Support Group in your area? Know how the ER works