Surgery scheduled...

Hey all! I just got the date for my splenectomy...I go in February 12th to have it out.  I am so relieved to be rid of this pain! I'm getting my immunizations on the 5th.  Dr. Sivakumar is going to try to take the spleen laporascopically, and if he has any resistance, he'll widen the incision and do it the old fashioned way.  He told me he got one out that was 20 cm laporascopically! He just had to cut it a couple more times after the major vessels were tied off, and did two lap specimen bags instead of one, so just one more little incision.  I hope all is well with everyone, as it is getting better here!

Courtenay

Best wishes for a successful surgery and speedy recovery!
  Sharmin

Hi Courtenay!

and best wishes for the procedure. I hope it goes totally painless and you don't feel a thing.

You are in our prayers

Take care, Peace!

Hi Courtenay,

It's amazing what they can do now with laporascopy. I hope all goes well with the surgery. I'm sure you'll be fine afterwards. Your resiliency is admirable.

How's baby Mychael been doing?

hi Courtenay

Wish you all the best and i am sure everything will be fine. Good luck

Manal

Best Wishes, Courtenay. You should feel much better after getting that spleen out. Good luck. Jean   

Coutenay,
Wish a good luck, hope all goes well with you.

Wishes,
Hallu

Get well soon. Wish the best for this special time.

Courtney,

My wife her surgery done the traditional open method. I hope they can do yours laporascopically. Good luck with everything.

Take care
Regards
Bharat

Good luck with everything, Courtenay!  You'll be in my thoughts and prayers.   

Good luck! you have been through so much with your pregnancy!

I haven't seen any recent papers on thal minor and pregnancy. The last things I saw were old and stated a higher chance of transfusion and/or c-section, but not at an alarming rate. I still think that depends on your overall state of anemia when you conceive and most of us heterozygous thal carriers here remember better and worse times in our life.

My OB/GYN told me that based on my state of health, I would have to be monitored by a high-risk pregnancy expert if I want to have children. It is a little intimidating consider how much I hate having to deal with all this, but I know that if one really wants a child, they just do what it takes. On my doctor's part, it was commendable to prepare me because I would have to take two years off work and that is major life planning. I wish more doctors were as realistic instead of "oh you'll be just fine" and then you are surprised and disappointed.

I don't think people would have fewer babies if they were warned. We have a right to know what reality is. This attitude of heterozygous thal being ignored has harmed so many people by suprising them and traumatizing them with thal major babies. I am never advocating what people should do for themselves and their family, but I know that if people knew their chances for a thal major pregnancy, they would prepare better. And yes, there would be some who would abort or maybe postpone their plans, but maybe if you're not 100% you want to be a parent, waiting is better for the child. And adopting a child is also a great gift and societal contribution.

I am always admiring the people who go through pregnancy no matter what their state of health is, so long as they are committed to taking care of themselves so they can take care of their child. It is encouraging to see how strong and committed you are. I know that your pregnancy was very difficult and dangerous in the end, but I wish you that the hardest part is over.

best of luck for the surgery hope evrything does well and you dont feel a thing and may you have a speedy recovery best of luck.

Marientina,

If you haven't seen Courtenay's original posts, please check out this thread at
http://www.thalassemiapatientsandfriends.com/index.php?topic=549.msg4100#msg4100

So many doctors will tell you that there is no cause for alarm if you're a minor who is pregnant but there are many instances where transfusions are needed during pregnancy along with close monitoring of Hb levels and spleen size, and as in Courtenay's case and also in some cases where care was not given as needed where the mothers died from a ruptured spleen, that it has become a necessity for minors to completely understand their own condition in order to advise the doctors where needed. More and more we are seeing that other genes are coming into play and affecting the minor status, especially during pregnancy. I feel that there have probably been far more cases like Courtenay's than currently realized, simply because they have not been documented as related to thalassemia. More thorough DNA testing should definitely be considered by any minor who may become pregnant and has any history of thal related symptoms.

Thanks Andy.

I will ask my doctor for that test at some point. I used to get blood tests every five weeks. Now that I have an established pattern on my thal minor, I test every three months. I knew my hematologist was not clueless when she poked and prodded me the first day I met her. She checked the size of my organs and made sure I had no ulcers or pain in my legs among other things. My spleen always bothered me when I was forced to run as a child and teenager and so I don't run. Sometimes it hurts, but I don't think it is very big right now although I am still pretty pale with that classic vampire-esque thal minor skin...

As a total sidebar, you know your iron is low when you're driving down a country side road and you see a cute wild boar running and think "mmmm....tasty". It happened to me today driving down Santa Ynez valley in California. Everything that grazed -- minus the horses for some reason -- looked like a meal to me. I need to take my iron syrup more frequently or I predict I may take a bite off my boyfriend's shoulder one of these days...It is so creepy.

HbC seems pretty rare but I fall under the demographic being Greek so why not test, right? It is pretty scary what can happen when you don't know what is going on. So many things can go wrong in pregnancy when someone has nothing wrong with them. It amazes me that anemic women everywhere aren't told to take good care. My heart really goes out to you Courtney. I can't believe what women go through for children. You deserve a medal.

I know that this a speculative answer you probably can't really answer anymore, but if you were told of these risks before pregnancy, would you postpone getting pregnant or adopt? Of course now you have a beautiful child to be happy about, but if you hadn't gotten pregnant yet, would you still go ahead with it? I ask for me of course because every year that I get older, I think about having a family someday and yet every year my health gets more difficult to handle. I know that everyone draws the line somewhere on personal health risk and the ultimate sacrifice, but where would you draw your line and say, no kids for me or adoption?

Marientina-

I sure will answer your question! 

If I'd known what would've happened before I got pregnant with Mychael, I think I would've waited until I had the splenectomy to get pregnant.  Of course, there is a whole host of issues about being pregnant without a spleen (the constant antibiotics, and being SO VERY careful to keep away from the sick, lest both you and the child get infected)...Of course, I want more children...But not for a very long time.  I'm young, only 23...So I'm hoping to wait until my early thirties to try again.  If it's not feasable bodily for me at the time, I will most certainly adopt if it's financially feasable.  I think many women have that want of (more) children if they are able to provide!

The doctors never warned me of what could happen during my pregnancy, because the only thing that happened with my older daughter Karol was a very slight case of IUGR late in the pregnancy due to calcification of the uterus and low amniotic fluid.  When we induced her at 41 weeks, she had lost a pound and was born at 6 lbs 5 oz, with only 3 oz. of fluid left.  There was a possibility of cord problems and infant demise, so we induced right then and there.  Looking back, it may be possible this was caused by my body not being able to nourish her properly because of the thal, but that is speculation...It happens to a lot of very healthy women.

Myke also had IUGR, but we took him at 36 weeks because he had actually stopped growing and if I had gone into labor myself there was a great chance of splenic rupture and both maternal and infant demise.  He was 5 lbs. 14 oz.  He is now 11 lbs and his head is growing well, but except height (71%) we are still off the charts of growth percentiles.