Monday, December 15, 2008

I'm Afraid

I Can Say It Here.

I know she won't read this, I can say it here. I'm absolutely terrified inside. I've been holding this in for who knows how long now. Our daughter will be having surgery this week. She will be having her gall bladder and spleen removed. I'm trying not to completely freak out. I've been very honest with her about the risks of surgery that anyone faces. I'm not scared of the surgery as much as I am what the rest of her life will be like. Her life without a spleen.

Lots of people live without their spleen, but they don't live like everyone else. They must be ever vigilant about their health, they must pay great attention to any illness they have, because even a dog bite can become a life threatening infection. We can live without our spleens, but that doesn't mean we don't need them.

In my daughter's case, because she has hereditary spherocytosis, her spleen in so many ways is an enemy. It works tirelessly destroying the fragile spherocytes in her blood, which causes her to suffer chronic jaundice, anemia, and another side effect, the development of gall stones. Removing her gall bladder and spleen will almost instantly restore her to normal blood levels, and the jaundice will go away completely. She will for the most part be just like everyone else, her energy will improve, and she will feel much better. The spleen is the only organ which does not handle her abnormal shaped blood cells.

The medical professionals have assured us this is the best remedy, and that she will feel so much better. All of the documentation I've read supports this idea, but none of it makes me feel less afraid for my precious daughter. I understand how important it will be that she seek medical help at the very first sign of an infection, but what about when she's 19 and doesn't think she will ever die, will she take good care of herself? Will I have any say in the matter?

Oh gosh, I'm driving myself mad with what if questions. I will spare you the 50 other of the same type floating around in my head.

From what I understand a person has just as much chance of dying from an auto accident as they do from having their spleen out. There are millions and millions of people who drive every single day and don't die from it, I look at that as the glass half full. Her mortality is not up to me. It's in God's hands, as is everyone else's. I guess all we can do is the best we can. We think we are making a good decision that will benefit her.

We could leave things as they are, but she runs the risk of having to have an emergency surgery if her gall stones were to move into the bile duct, and cause an obstruction. Emergency surgery is so much riskier than a planned one. If we were to leave the spleen, which is already enlarged, then she could have to undergo another surgery at a later time, and they would not be able to do it laprascopically as they plan to do it now, and she would continue to suffer with the anemia, and jaundice as long as her spleen remains.

Well, we didn't ask for this, she certainly doesn't deserve it, but this is life, imperfect and not without risk. We believe we are making the best choice for her. She is excited, and scared too. She's very glad she won't have yellow eyes anymore. I'm not sure she has any idea what it will feel like to not be anemic, since she's been this way her whole life, but she's excited about that too.

She's shed a few tears in the last week when she starts thinking about all the things that are going to happen. She's afraid she will be in pain after the surgery, and we've been very honest about every detail, and the fact that she might feel some pain, but that we would do our best to make sure it's only a little pain.

I've shed quite a few tears myself. I've been in a very strange foggy state of mind. I can't focus, I can't do anything, I feel quite depressed, and my mind is constantly working, yet, I can't remember the simplest things. I've been writing everything down as much as I can because I simply forget one minute to the next. I'm trying not to let her see this. I don't want my motherly worries to make her feel anxious or more scared than she already is, but she knows me so well, I'm sure she may sense things anyway.

I better get to bed. The rest of my life still rattles on around me begging for attention. I finally watered the poor plants tonight, they thrive despite my random watering habits. It's been a very stressful month. Words cannot describe. Good night.

6 comments:

  1. Hi - I saw your blog and I have HS, so does my Mum, my sister Orla in Ireland, her two kids and my son seems to thankfully have it mild. The rest of us had our spleens out (not keyhole as was too many years ago). We're all doing great. Yes we tend to get hit by a virus a bit more than others and getting flu shots is a HAVE to not a nice to. But considering how sick I felt before the spleen came out, and my siblings - we all feel so so much better. So I know its hard for you but to see your daughter go through it but she will feel better afterwards. I wasnt in pain afterwards and remember getting a lot of great presents! (I was 6). So best of luck and will keep your daughter and your family in our prayers. Also theres a HS group on yahoo as well thats great -Spherocytosis@yahoogroups.com

    best of luck!

    Kindest Regards

    Sinead (in California)

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  2. Anonymous8:17 AM

    I totally understand, and will remember you all in my prayers. :-)

    *HUGS*

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  3. Frankly, I'm glad you expressed your concerns ... as well as letting us know what's about to happen. The very best to your daughter. I'm sure she's a trooper and will sail through everything.

    I'll be thinking of you. Let us know how it went, please.

    Regards.

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  4. Anonymous1:45 AM

    The best of luck, she is in my prayers.

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  5. Surgery is scary on a primal level: they're going to be cutting into you. Anyone who isn't at least somewhat disturbed by the prospect is, well, somewhat disturbed.

    The thing is, with the spleen defective, she's at risk already; if some new risk factors are being introduced, some others are being taken away. A door closes, another opens.

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  6. Thank you all for the kind comments, and well wishes.

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