Discussion Forums > Thalassemia Major
Looking for support,and guidance,please.
Christine Mary:
hi to all:
As you all know, Lauryn is due for her first transfusion very shortly. I am holding up ok,(all I have to say is thank GOD for my husband and family)....
I have my moments of strength,positivity and HOPE. Again, I also remember our reality and think of the pain my baby will have to endure, just to live! I feel like I am dreaming....a more appropriate word would be nightmare...
I have quite a few questions for you, before we go in ,and I'd really appreciate your honest answers and expieriences to help my husband and I make the best decisions for our daughter.
#1: As far as I am concerned,the port is NOT AN OPTION.... can Lauryn ultimately still get transfused without one? OR... is it the port or she dies kind of thing?(thats kind of what the dr implied.... He says we might not have a choice, but to get one)??
#2.Where on her body can she get transfused? I know of her arms,of course... But legs?ankles? I've heard of the scalp!!!!!!!!!!???
#3. Bone marrow transplant... She has a 1/2 brother..9 i have a son from a prev.relationship. Is it worth us having him tested for a poss match? what about a relative that is a close match? when do we explore this option????
#4: Blood... Honestly, I was so grossed out thinking of a total strangers blood running through my babys' body. The thought of Lauryn being "violated" turned my stomach. Who is this person? where are they from? what is their history?? My brotyher was the one who pointed out, that they are the "angel" that is giving my child life. Can you help me come to terms with this feeling I have? I know I have no choice, but I really WANT to believe it is not how I percieve it to be.
#5: If the bone marrow transplant is not an option, cant't I set up my own donor system,like friends from work and church? or family? Is there a difference,then getting a strangers blood???
#6: On average, what is the length a major can go between transfusions? I know maybe bi-weekly at first.. but what about monthly? When will we know "it is time??"
#7: Since Lauryn is not symptomatic yet, after her transfusion, will we still see a difference in her skin and eating habits? Is there a big notice from the 7-8's hgb to a 10??????
#8:Her dr says she has no unusual antibodies in her blood. What does that mean???Why do they do a cross and match???
#9: She has A+ blood type. What blood can she receive?????????
#10:Will she get filtered RBC's, or do I have to ask? Will they be washed? What kind of blood?
#11: I demanded a DNA test last Friday. The dr. agreed and said it will take weeks for the results. He says there is no need for it,since she has no Adult hemoglobin. (we already know). Since she would already have tx'd when we get the results, is it still necessary to have it done??????
#12: Her dr. said that if she is still in the 8's when we go on mon, and her retic count is high, he still wants to go through with the transfusion. He says if her retic count is high, that means her body is overworking just to try to keep her in the 8's. He does not want to put too much stress on her organs,and he does not want to wait for her to be symptomatic. Do you agree,OR should we wait until she gets a little lower?? I know I would be just Buying time, but every day I can get w/o txing her is a gift...???
#13:Has anyone heard of the gene therapy trial that is being done in France right now??? How come I am the only one who has heard of it? Her dr has never heard of it..... Have you???
#14: How long will the tx last? she is 7 months, about 16 lbs...
#15: What should I pack for her??? The usual? Any reccomendations? Moms???
#16: I am utterly petrified of Blood borne diseases. As if these kids dont suffer enough? then we have to worry about that?! How safe is the blood? Do they screen it carefully? Should I be worried? Are they selective with donors, or do they let any Joe off of the street donate?
#17: Why do I imagine my childs life and my familys life doomed? Will I really accept all of this? Can this actually be normal for us? WIll it get easier?? Will I be able to cope? I feel soooo soo bad for my baby.She is o innocent and doesnt have any clue for what hell she has to face! I pray every night that GOD will give thalassemia to me instead. Why do I feel like I am being punished or punishing Lauryn? i am so afraid she will die at an early age, and have complications,.
I am so determined to take the BEST care of her, but I do not want to let her down or make the wrong decisions. I feel like no matter how good we raise her with this condition, she will leave us.
Do you know Why?
i apologize for all of this. I know that all of you are experts on giving advice and being the best of friends. I hope you can help me. i need you now more than ever.
Love,
Christine
Manal:
Dearest Christine :hugfriend
My heart aches for you. I can understand and feel what you are going through. I am sure Lauryn will be fine, the problem is you and i don't blame you for this because any mom will have the same feelings but please try to calm down for Lauyrn's sake.
If i were you i would proceed in the DNA test even if the results come after tansfusion. I will leave your questions for others to answer since i don't have any expierence in blood transfusions. all i want you to know is that you are doing the best for your child and the matter of life expectancy,is not related to thal or any other person in this world because GOD has everyone's life written before we were born. If some one has to leave our world early, he doesn't have to be a thal or have any other disease to have an excuse for leaving and the opposite is true. Many people leave this world early in their lives and they were never ill before and also the opposite is true. So please take this idea out of your mind because this is not true. Have faith in God and believe that whatever you expect from God, there will come a day when He grants you what you wished, so please have high expectations.
Christine, i am soooooo sure that God will soon give us a cure for our children
I want you t know that i am always here if you want to talk
Take care
Manal
Narendra:
Hello Christine,
I will not be able to answer most of the questions and will shed some light on what I know
--- Quote ---#1: As far as I am concerned,the port is NOT AN OPTION.... can Lauryn ultimately still get transfused without one? OR... is it the port or she dies kind of thing?(thats kind of what the dr implied.... He says we might not have a choice, but to get one)??
--- End quote ---
Realistically, the port is NOT an option for thousands(and there are different reasons for that - financial, environment to name a few). I think the problem would be to find the vein for the little child, but that is the reason why they should have expert nurses. I don't understand why the doctor is implying the port is needed. Do they get commision out of it??
--- Quote ---#16: I am utterly petrified of Blood borne diseases. As if these kids dont suffer enough? then we have to worry about that?! How safe is the blood? Do they screen it carefully? Should I be worried? Are they selective with donors, or do they let any Joe off of the street donate?
--- End quote ---
You should ask what tests they do on the blood. Although, I am pretty sure blood is very safe here in USA. I went to donate blood along with my wife at Children's Hospital in Boston and when I mentioned I was in India before 3 months, they rejected me(mentioning they would prefer me coming after a longer duration as I had visited India and might be carrying parasites like malaria in my blood stream). So, they definately make sure the blood is good. I know back in India, they test for Hepatitis, Malaria, HIV, Syphilis and am sure they might be testing more here in USA
--- Quote ---#17: Why do I imagine my childs life and my familys life doomed? Will I really accept all of this? Can this actually be normal for us? WIll it get easier?? Will I be able to cope? I feel soooo soo bad for my baby.She is o innocent and doesnt have any clue for what hell she has to face! I pray every night that GOD will give thalassemia to me instead. Why do I feel like I am being punished or punishing Lauryn? i am so afraid she will die at an early age, and have complications. I am so determined to take the BEST care of her, but I do not want to let her down or make the wrong decisions. I feel like no matter how good we raise her with this condition, she will leave us. Do you know Why?
--- End quote ---
May be because you are a very caring MOM. And we fear the worst when things like this happen to our dear one's. But, look at the other side, whatever she is getting for treatment will make her life better. She is going to be living long long life and I re-call your post of you hoping Lauryn being one of the person who would research for a cure and get us a break through. Her life is NOT at all doomed, Remember, there are many more problems in the world, than we have.
If we have food in the refrigerator, clothes on your back, a roof overhead and a place to sleep .. We are richer than 75% of this world. If we have money in the bank, in our wallet, and spare change in a dish, we are among the top 8% of the world's wealthy. And if we read this on our own computer, we are part of the 1% in the world who has that opportunity - so think of what all good things Lauryn has. She has everything that she needs. She can beat all the odds and she has a caring mom and a family who is going to take care of her. Be Strong. These situations are a test for us. Be positive and I am sure you will come out a winner
Kathy11:
hello Christine, :flowers :flowers
Nice to read from you.Please do not apologize for you feelings your concern are real and any caring parent would be the same.Still you have to believe that the treatment would benefit Lauryns' and able her to live a reasonably good life.
Try hard to think of the good outcome instead of all the negatives.
Believe that Power greater than ourself will take care of your little daughter,and your family
Dont let your worries about if this or if that cloud your judgement. As mentioned in previous posting many has travelled this road before and they came out with good result.
she will be alright and you will be strong to support her.Have courage we are all with you in thought and we are sending good vibrations.
hugs and love from
Kathy
Danielle:
Hi Christine,
I'll be back to answer the bulk of your questions, but I just want you to know, Lauryn does NOT need a port to live. There are many Thal Majors who have never had a port in their life and are doing perfectly fine. The only reason why doctors push for a port is for easy access to a vein.
If Lauryn is A+, then she can receive either A-positive, A-negative, O-positive, or O-negative.
They have to do a type and cross match each time that she is to be transfused, just in case she develops antibodies and makes it hard for them to find a good match of blood for her. Just because they find the right Rh type, doesn't mean that type will not be rejected due to certain antibodies that may build up in a person's body. This is normal. I have had antibodies build up in me that made it difficult for the blood bank to match me with a unit of blood, but then it went back to normal. It's just safer to have a type and cross beforehand, and nothing to worry about.
You will be ok. It won't ever hurt any less, but you will become more relaxed about it as she gets older. It's never going to be "easy" for you to watch Lauryn to go through this, and you will always worry, but it will eventually get to the point where it just becomes part of your life. As long as you take care of her as any good mommy would do, your baby will live a long life. Just be there for her, and stay strong. If you show her that you are strong, but caring, and don't scare her, she will be able to deal with it better as well.
I have to leave my house right now, but I'll be back later to answer everything else that I can.
Please stay strong, Chrissy. We are here for you. If you want my phone number, just let me know, and we can talk on the phone. :hugfriend
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