Discussion Forums > Thalassemia Major

Looking for support,and guidance,please.

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Andy Battaglia:
Hi Christine,

I'll address a couple of points.

A port is an option. it is not mandatory. Doctors are very big on them because they make things easy for them. A decision to have a port implanted should only be done if it is demonstrated that there will continuous problems finding veins.

I think you should have potential donors tested for HLA matching before thinking too much about a BMT. I do think the testing should be done so that you know if a BMT is a possibility. If it turns out there is a match, then it is something to seriously consider. The younger a patient is when it is done,  the less chance of rejection. If there is a match you should then learn as much about the risks, the effects of the drugs involved, what life after a BMT is like, and what the after care will involve. The other very important thing to consider is the effect a BMT will have on you as parents, watching your child go through it. I think Khalifa is a good person to talk to about this.

The blood supply in the US is very safe. Testing is mandatory for many communicable diseases.

From http://www.pleasegiveblood.org/education/blood_tested.php


--- Quote ---Disease Testing...HIV/AIDS, Hepatitis B, Hepatitis C, Syphilis, Human T-cell, Lymphotropic Virus (HTLV), Hepatitis C and HIV/AIDS  Nucleic Acid Testing (NAT), West Nile Virus.
--- End quote ---


http://www.redcross.org/services/biomed/0,1082,0_555_,00.html


--- Quote ---The Red Cross has also made progress in providing a universally leukoreduced blood supply (removal of contaminated white cells), with virtually all blood provided as leukoreduced products in 2001. This is important because leukocytes (white blood cells) may not be tolerated well when transfused with red blood cells.
--- End quote ---

Early transfusion can virtually eliminate bone expansion and deformities. If you know the Hb is dropping, there is no point in waiting. You are doing your daughter a favor by avoiding bone expansion. Just as later on you will start chelation early enough to avoid iron damage to the glands. This is extremely important, as growth can proceed at a  fairly normal rate if the glands are not damaged and can function properly in stimulating growth.

I search regularly for any updates on the gene trials but so far, I have found nothing published, which is quite normal at this stage. It would be far too early to draw any conclusions. I think we have great hope that this will eventually lead to a cure of which even older patients will be able to take advantage.

There are many factors that determine how often she will need to transfuse and this may not always be a constant.

I know a woman in Germany who is a major, is a mother of two kids ( no hormones were needed to get pregnant), is active in TIF and another European blood disorder organization and is also a student in medical school. Lisa was active in athletics playing little league baseball with the boys and also an avid bowler. She led a very active life and the chances are, she'd still be here today if blood testing had included testing for hepatitis at an earlier date. Lauryn will do whatever she wants to in life and the one thing you have to avoid is being overprotective. Let her live and avoid saying you can't do that cause you're thal. Support her decisions and always be there when she needs you. Many thals are now living into their 40's and 50's and keep in mind that as children they did not have the advantage of the knowledge about thalassemia and its treatments and the chelation that we have today. Thal is no longer considered a fatal disorder in the US. It Is treated as a chronic disorder that can be managed. Know that things will continue to improve for thals and that your daughter is going to have a good life.

Danielle:
Ok, I'm back.  Now, to answer your other questions.

First, let me reiterate, in no way is the port is a necessity.  She will not die without one.  The only reason why I even had a port was because I was tired of getting stuck so many times, and I only first got it when I was 18 years old.  It caused numerous problems, and I have not had a port for a few years now, and will never get one put back in.  I'd rather get stuck a bunch of times then to go through what those ports caused me.  Do NOT let anyone make you think that Lauryn needs to get one.

She can basically get transfused anywhere in her body, as long as the vein is strong enough to withstand the transfusion.  When I was a little baby, they use to put the IV in my foot, because they couldn't find veins on me.  Yes, they can put an IV in the scalp.  It's kinda hard to find decent veins on a baby, but a good nurse will get it, regardless.

As for bone marrow transplant, a sibling has a much better chance of being a match if the child is from both the same parents.  If you are interested in a bone marrow transplant, Lauryn can be put on a list and they will contact you if they find someone who they feel is a perfect match, so you do not need to have another child to match up with her.

I know that you feel grossed out by the fact that strangers are giving your child blood, but you need to think of it as genuine people giving the gift of life and love to Lauryn.  If you feel that strongly about it, try to find out if there is a way for your own family and friends to donate to her.  That is what I used to do when I was capable of having that.  I cannot do that anymore, because my new hospital doesn't have its own blood bank, and it would cost me tons of money to have the blood taken from them at a different facility and sent to my hospital.  You may have that option, though.  It makes things a little easier to cope with if you are feeling uneasy about strangers giving blood to her.  Honestly, the blood banks are much safer now then they were years ago, and there's a slim chance of Lauryn contracting anything.  Most of us having been getting blood for 30+ years and have been fine.  It will take some getting used to, but it will be ok.  So, to answer your other question, yes, you can have your family and friends donate to Lauryn, if the hospital participates in that.

The most that I've ever heard of majors going without blood is a month.  There are some that go longer, but they are usually functioning at a very low hemoglobin.  Lauryn will not need as much blood as a baby as she will when she gets older.  So, she may not have to go often right now, but it will get to a point where she will need more blood.  The time frame for blood transfusions is usually 2 to 3 weeks, but some can last longer.

When Lauryn starts her transfusions, you will definitely see a difference in her skin color and habits.  She will act more like a healthy baby would.  And yes, there is a big difference between functioning at a 7 or 8 hemoglobin as opposed to a 10.  It may not seem like a big difference in numbers, but the person will function much better.

If the blood is not filtered from the blood bank, they will use a filter during the actual transfusion.  Usually, the blood is filtered at the blood bank, and sometimes they use an extra filter during the transfusion process.  Ask the nurses what their protocol is.  Lauryn should only be getting packed RBCs and nothing else.  She does not need white cells, platelets, etc.  The transfusion should be packed red blood cells only.

I'm confused as to why you want a DNA test. If Lauryn has Thal Major, then she will need to be transfused regardless.  I know it's a hard thing to accept, and you want to spare your baby the pain of going through all this, but I promise you that as long as Lauryn gets the care that she needs, she will go through life accomplishing everything that a healthy person would.  There may be some setbacks along the way, but that can happen with anyone.  Unfortunately, we cannot change what life throws at us, we can only fight back and prove that it will not stop us from living our lives.  Just take a look at us Thals on this forum.  There are many of us in our 30's like me, and 40's and so on, and we have been able to accomplish things that even many healthy people do not accomplish.  I think we just have an amazing inner strength that keeps us going, and makes us want to prove that we can do anything that we want.  It took a lot of hard work and dedication for me to get through nursing school, but I did it.  Many of us have done things like this, and continue to do so.  Keep your faith.  Lauryn was put here for a reason, and with good care, she will prove that no one will stop her from being whatever she wants to be.

As for trying to buy time, I wouldn't recommend that.  If Lauryn's hemoglobin keeps dropping, she will just become weaker and prone to sickness.  If you keep her at a decent hemoglobin, she will function much better.  Your doctor is right about not wanting to wait, because the more her bone marrow works to try and make cells, there will be risk for bone/growth deformities and other issues.

As for gene therapy trials, I would wait until they become more proficient.  Having Lauryn go through the treatment that we know works best is her best bet.  We are all on our toes, waiting for this gene therapy to pan out, but in the meantime, it's best that we keep up with the protocol that we know is working at this time.

The lasting effects of transfusion is different with everyone, so the only way you will know is trial and error.  When she gets her first transfusion, you will find out with her next blood test how long it's lasting.  Also, each transfusion is different, because of the amount of hemoglobin in each bag.  She may get a really good bag and last longer, but then get a bag with less hemoglobin and need to go back sooner.  Once you get used to things, you will be able to just look at her and tell that she needs a transfusion, and when she gets older, she will be able to do the same.

Blood transfusions are much safer now, and they do a lot of screening for communicable diseases.  People have to go through a whole history form, their blood is tested for the major diseases, and they also do not allow people to even donate blood if they don't meet the requirement.  For instance, if someone has gotten a tattoo or piercing, they cannot donate blood until a year after.  There are other requirements as well.  I have gotten thousands of blood transfusions in my 30 years and have not contracted anything.  The bulk of the Thals who have contracted something, were given the infected blood back in the 80's, when testing wasn't that great.

Your family's life is not doomed, Chrissy.  It will be ok.  Every mom is scared of their child dying, whether they are healthy or not, so you have every right to feel that way, especially with Lauryn having Thalassemia.  As I had said, though, we are all living much longer now.  It's rare for a person with Thalassemia, who is given meticulous care, to die at a young age these days.  Care is the key.  If she gets her transfusions and uses her iron chelator, she has the ability to live a fairly normal life.  The only reason why I say "fairly" is because normal, healthy people do not have to get transfusions and use an iron chelator.

I just want you to know that you have an excellent support network here, and we are all here to help each other.  Please do not feel bad for asking questions or venting to us.  That's what Lisa created this support group for.  You have this place 24 hours a day, 7 days a week, so use it as much as possible.  You will find more experts here than anywhere else.  Sometimes we can even be smarter than the doctors themselves.  :wink

I hope this information helped in some way.  I wish that I could hug you and tell you that everything is going to be ok, but as a mom, you will always worry no matter what.  Just trust that things will get easier as you get used to the process.  It will always hurt you, but it will be easier to deal with once you go through it and see your child growing like any other child.  Just remember, it may seem like the best thing to postpone transfusion as long as possible, because you don't want to see your baby go through it, but keeping her at a level of at least 10 is the best possible thing to do.  It may not be easy to deal with the frequent transfusions, but it will be much better for Lauryn in the long run.  She will feel much better, and function much better.

We are here if you need us.  :hugfriend

§ãJ¡Ð ساجد:
Hi Christine,

We can give you our best shot to comfort you but have to be personally strong to calmly experience the event that is upon you.

Like I said before that it is the first step that is always the hardest one. Once you go through it and it's over, then you will know yourself how to be prepared for the next TransX.

Things are more safe in U.S than compared to developing countries and therefore you need not worry about the blood that Lauryn will get.

Each hospital has it's own method of treatment. For example when I was in Saudi Arab they used to admit me for a day and only discharged the next day when the Hb was in normal range, therefore my mom packed in an extra set of clothes etc. while here in Pakistan I only go in for several hours and thus don't need anything special. So, just ask your doctors about the time period which you guys will be there for and pack the things accordingly.

I hope that everything goes smoothly and please be strong.

Take care, Peace!

vic:
hi christine,
all your concerns are so fresh in my mind as they were like mine and all mothers having to put their children through their first transfusion.

i had a major issue with the point about other people's blood running through my sons veins but and i mean this from the bottom of my heart christine - when you see the change in little lauryn you will be amazed.  i thought christian was just sensitive, didn't want to play typical boy games, preferred to draw than go outside and play.  now i know that it was his low hb and other medical issues prior to transfusion that were not allowing him to reach his potential.

now christian has colour in his cheeks, he has energy, he wants to run, climb, ride bikes, he did not or could not do these things before.  so even though i hate the process i know that  transfusions  are enabling him to have a quality of life.

no port for christian.  just make sure lauryn drinks plenty on the morning of transfusion so her veins open up - well thats what the nurses tell me anyway.

take all your normal things that you would for a normal day out.  if its a childrens hospital there are probably going to be DVD's there to keep her occupied. 

when christian started he was on one unit of blood (one bag) and that process took about 2.5 hours.  but if you cross match in the morning you have to wait around for that test and then start the transfusion, so it basically eats up into your whole day.

good luck with it.  you will amaze yourself with how strong you and lauryn will come out of this.  i used to stress about insignificant stuff but when you see that your child needs you on this lifelong journey you prioritse what is important in life. 

i am on the other end , after a year of transfusion i am starting iron chelation on monday and i can tell you its something i am absolutely dreading for my son.

cheers vicky

Zaini:
Hello chiristine,

i think wtever ur queries were,,must be answered by danielle,,,marvelous job danielle, :clap so i only wanted to say that be strong and be on lauryn's side,, she will live a long life,,,there are medicines now working miracles for thals,,,and yes first time is the hardest,but you'll get through it, though as a mother it always hurt to see ur child being pricked with needle but believe me,, they have a special gift of courage with them,, and they can do anything a normal person can do,, it's not a fatal disease now a days,, u wanna see fatal diseases, look at kids with leukemia,aplastic anemia and so on ,,, i thank GOD that my daughter only has a genetic diorder with which she can live,so pretty lauryn will live blissfully,,, only if u take care and be strong,, transfuse her at right times and chelate iron, and pump is not an only option for chelation,there are oral medicine,, though i don know if lauryn can take them as she is so young,give a kiss to her from me , :bighug  and take good care of her and urself.


TATA,
zaini.
 :flowers

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