Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: olivia mary on July 23, 2008, 08:15:07 PM
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Hi everyone....
Well on Friday me and the kids were involved in a very serious car accident.....Olivia is ok she has some injuries to her neck and some scrapes....Julianna has alot of brusing to her stomach and her hip and minor facial injuries.....my son Frankie 6yrs old suffered the most serious injuries.....he has a sever laceration to hin leg and head and a stage 3 lac to his spleen and a stage 2 lac to his kidney. Thank God we are all home and safe........Olivia just receives a tx the day fo the accident and is doing good except for a cold. WHen they did a ct-scan on me they told me I need to see a hemotologist because my spleen is enlarged... I don't know how big it is I will find out.....when we are feeling better I will post some more about Olivia......
Kathleen
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hi
its nice to hear that u all r home n safe ..... hope u will get well soon .. :getwell
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Thanks to God Kathleen that it wasn't worse. I hope that each one of you will recover soon and everything will be back to normal.
Please take care :hugfriend :hugfriend and update us
manal
:getwell :getwell :getwell :getwell :getwell :getwell
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Kathleen,
I hope everyone will be alright. That's really scary. Frankie is going to have to take it easy for awhile.
I'd like to know about your spleen size. I keep reading everywhere that minors have no problems but it seems far more minors have problems that what doctors believe.
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Oh dear,
I'm really saddened to hear about this unfortunate event.
I wish everyone a speedy recovery. :getwell
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Hi Kathleen,
I am sorry to hear about your accident, but thankful that you are home safe. I wish you all a speedy recovery.
When I was pregnant with my second child my hematologist told me that I also have an enlarged spleen. I don't know if it returned to normal size afterward or not. I did not know that this was of concern - perhaps I should also have it checked. I do think that most thal majors have an enlarged spleen though - do you think that this is the case Andy?
I hope that you and the kids recover very soon Kathleen - I hope that you did not suffer any serious injuries.
Sharmin
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Hi
I am so sorry to hear what you went through but thankfully everyone is safe. Wish you and the kids a speedy recovery.
Jade
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Sharmin,
I have chosen to talk about the spleen in a new topic at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1910.msg16077#msg16077
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Kathleen,
I am really sorry to hear about your accident,Thanks to God you all are safe and home,wishing you and kids speedy recovery :getwell
ZAINI.
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Hi Olivia,
Wishing you and children a speedy recovery. Please keep us posted how you and the kids are doing.
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Thank you so much for your concern for my family......if you would like to see photos of us and the accident go to
www.myspace.com/frankandkath a person on the scene took some photos and so did my husband at the hospital.
Thank you again Kathleen :hugfriend
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After looking at the pics on myspace, all I can say is thank God you're all ok and :getwell
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Kathleen, that was really a horrible accident. Thanks God you are all safe
manal
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Kathleen that was a real bad accident but thank go u all are safe. Wish u good luck and speedy recovery.
:getwell
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Hi everyone...
just wanted to let everyone know e are doing fine....My son Frankie is doing great!!!! :biggrin
Olivia and I will be gong to Oakland on Aug. 13 her appt. is on the 14th I will let you know how that goes.
Wishing everyone well :hugfriend
Kathleen
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Good to here everyone's better. :jumping
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Hi everyone....
Thank you Bobby for your well wishes :hugfriend ..I have a question....to date, Olivia has had only 2 tx...we are going to Oakland in a few days and I was wondering....since Olivia has been tx, does this mean she will always need to be tx? or if there is another medication like hydroxyurea can we try her on it?.....I've heard that once tx are started there is no going back...is this true?
Thanks for your help....
Kathleen
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When majors have taken part in trials for hemoglobin inducers, they have had to stop transfusing in order for the bone marrow to become active again so that the Hb inducer can work, so it is possible to re-activate the marrow, but it may take a few months to get it working fully again. Dr Vichinsky will be able to tell you more, including information about other Hb inducing drugs.
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What about Olivia's appointment with Dr.Vichinsky Kathleen?Please update us.Hope it was positive.
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Hi everyone...we just got back from Oakland.....Well let me start off by saying that Dr. Vichinsky is a wonderful person.....I feel that I have received so much more information from him in 1 day then I have since Olivia has been dx....Olivia had a squid done, a echo, bone age and a skull x-ray....Her echo was normal...bone age was good her skull x-ray showed moderate thickening. We discussed options for Olivia which were tx, medication and bone marrow transplant....Dr V feels Like Olivia is leaning more toward the severe side of thal interm. He is going to recommend to my drs here in Phoenix that Olivia is on a 4 week tx schedule....for 6 months...not a tx and then see her in 6 weeks he wants to maintain her hb above a 9 for 6 months and then we will stop no matter how good she feels and than see how she does as far as quality of life...mood...any facial changes, change in activity for another 6 months to see if she really has a difference from the tx. Olivia'2 ferritin is in the low 400's, she has olny had 2 tx to date....also Dr. V has put her on a low iron diet and has recommended that she takes a multi vitiman daily...I have more to tell but i have to now go to pick up my kids from school.....talk more later....Kathleen
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Thanks Kathleen.what did Dr.vichinsky said about hydroxurea and other hb inducers?Is tx the only option?
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Hi Kathleen
I have two questions, first does 6 months transfusion will make Olivia dependent on blood transfusion? Second i don't get Dr. Vichinsky's point is seeing the difference between Olivia's state with and without transfusion?? I mean definetly when someone is having a high Hb will be better in all prespectives than a lower one so what is he expecting or waiting for? Hope you get my point?
What is his explaination on why did the hydrea stopped having an effect on Olivia's Hb ??
manal
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Hi Andy, i'm new in your forum..i am diagnosed with a thalassemia intermedia. And every 3 months my doctor check all my HB, RBC, WBC, Ferritin and all. He also told me that i have an enlarged spleen and enlarged liver. But the only medicine he's always giving me is Folic acid.
Could you explain to me further if Thalassemia Intermedia is curable? and is Folic Acid the only medicine that could help me? I hope you could elaborate to me further.
Thanks!
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Some encouraging news at last.
After talking milk thistles for three months my liver functions still high but has improved,My blood glucose stabilized.
I made some alterations with my medications and supplement it with herbal treatment it seems to be working.
My doctor was impress with my progress,
Thank-you Andy for suggesting Milk thistle after my last blood tests which was very grimmed.
I will continue and hopefully it will get better and better. Wow finally :biggrin :biggrin,
Thank-you all for your kindness and help all through my hard times, you are the best.
Kathy
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Kathy,
It's really good to hear that you're feeling a little better. Milk thistle is a good liver and blood purifier, and also can help rebuild liver tissue. For most of history, mankind relied on herbal and natural remedies for illness and there is quite a bit we can do for ourselves once we learn how.
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Hi orry78,
Are you beta thal intermedia or alpha thal. If it is alpha, there isn't a whole lot that can be done besides folic acid but if you are beta thal, there are a few things you can try to improve your health. Let me know which you are and I will advise further.
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Hi Manal,
If transfusions are stopped, bone marrow activity will resume within three months and will return to the level of activity and output that existed before transfusions began. Maintaining a normal hemoglobin level greatly reduces the bone marrow activity but once the Hb drops, the activity does resume.
I think people should pay special attention to the recommendation of a low iron diet.
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I hope Olivia starts making her own blood soon :pray
Kathy!
I'm so happy to hear that it's working for you. :)
By the way, how much improvement in the levels did you see?
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Hi Andy, that i need to ask my doctor if i am a beta thal or alpha thal. My next check up is due next month so i could actually ask him then.
what worries me the most is that, why my liver and spleen is always enlarged. sometimes it is hurting me. Is there anything that i can do to decreased or to stop the enlargement of my liver and spleen? every check-up i'm giving blood specimen to do Renal function test, Electrolytes, liver function test, calcium, uric acid and CBC.
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Hi Sajid. :biggrin
Thanks-you,Re- your ????-
For me it was enough just to see the decrease in the liver enzymes level ,cholestrol was manageable and so was my blood glucose level.the ratio and risks of cardiac arrest has reduced.Let say a 25% reduction not bad for three months of talking Milk thistles.I also stopped taking some of the medications which I thought was harming my liver the most, I believe that its a matter of trial and error untill its right.
It's a big improvement because I was so worried after my last blood test result which was in May '08
I feel better in myself just getting better results. :cheer :cheer :cheer :cheer :cheer
Kathy
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Wow! 25% is really something!
I'd love to see that kind of improvement for my ALT.
Now I want to try it out too. Ironically this plant is very abundant in the hills of Pakistan but it is rarely harvested for medicinal purposes.
I will surely ask my doctor about it and try to convince her to let me start it if I can get the local brand which Umair disclosed.
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Hi everyone...
Today Olivia had a tx and she had a pretty bad reaction, swelling of the face ears hives all over her body....they gave her so many medications to stop the reaction and they worked and I now have to give her benadryl for the next 2 days. Can anyone tell me how common this is? What does this mean for future tx? Any information will be helpful...
Thanks Kathleen
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Today Olivia had a tx and she had a pretty bad reaction, swelling of the face ears hives all over her body
once something like thi happened to m sister , when she was getting transx of second (fulll sized) unit ( blood bag ) in a day, bcoze her Hb was too low at that time...i dont know it is the same reason of getting that much reaction ... but i felt that i have to share that of my memory ,mayb it could help you.....
Best Regards
Take Care
UMAIR
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Thank you Nice Friend......
Olivia's hb was 7.8 before tx. As I mentioned before Dr. Vichinsky wants her on 6 mo tx 6 mo off...so yesterday was going to be her start date and 20 min into the tx she was screaming saying her ears hurt....my husband tried to get her shoes off and her feet were so swollen :wah ( my poor baby) after giving her meds she was ok in about 1 1/2 hrs. Last night she was back to her old self :biggrin Thank God. So we are going back on the 10th of sept......( we were coming back on the 10th anyway because we are going to NY for 3 weeks and we didn't want more than 4 weeks between tx, so they were going to give her blood yesterday and then on the 10th check her hb and see if she could have more blood to keep her hb up while we wre on our trip). The Dr said we will pre treat her with tylenol and benadryl before her next tx... I hope this was a freak thing ( although I know this could happen) I do not want this to happen to her again. :( Thanks again for you story I think it's good to share even if its not the same situation for me it may be fore someone else :dunno
Kathleen :hugfriend
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Umair,
I'm so sorry to hear about your sis. How old was she when she passed away?
Hi Kathleen,
Transfusion reactions happen quite often. Please insist your hospital to give her washed PRBCs and use a Leukocyte filter to minimize the reactions as much as possible. Anti bodies can cause trouble in anyone and it's best that you get the most perfectly cross matched blood with the most possible matched attributes for a smooth transfusion.
I hope too that this won't happen again to your baby or anyone else!
Stay strong and enjoy your trip.
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hi i am u r new friend get wel soon
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Hi Mother of Little ,
:welcome to the family .. i hope you will find this family realy helpfull , wish you all the best for everything .. keep in-touch with us and keep posting...
Umair