Our Angel, Mackenzie

Monday, February 13, 2012

Yellow Skin

Sorry I haven't been around much lately.  I've been really enjoying life, and keeping busy with my family, work and exercise (got back to running/jogging).

So here's where we're at:

My mother in law has been stating to me for quite some time (over a year) that my skin is very yellow.  I kept brushing it off.  Well, I finally mentioned it to my doctor in early December, so we did some blood work.  First round everything came back normal, kidney functions, liver functions... etc.  So we did more blood work so we did another round the following week.  My wonderful doctor left me a message that my beta carotene levels were 10.6.  He stated that "normal" is between 1-5!  YIKES!  He had given me an article from a medical magazine about yellow skin and it suggested the beta carotene's could be high because of my diet.  So in his message he said to take a look at what I'm eating.  So to make a long story short, I figured out after about a week that it wasn't my diet buy a vitamin type supplement that I was taking.  I went in to see the doctor again, and he had another doctor sit in on my appointment for a consult.  They both said that it is rare to see an adult have that high of beta carotene levels and that it's usually young ones, who eat to many carrots when first starting solids, who we see with orange noses.  They were both a concerned.  I showed them the supplement I was taking and they both told me to stop taking it immediately and it was definitely part of/the cause of the problem.  Turns out each capsule has 1.8 mg of beta carotene and  I was taking 4 a day.  Seems like my body can't handle that much, and my liver and kidneys can't process it fast enough.

So I stopped taking the supplement right after that appointment.  A few weeks ago my mom called.  She told me that she had been doing some research.  She asked if I remembered that she had "hemochromatosis".  I didn't recognize that word at all.  She went on to explain that it is a type of liver disease that is "Unfortunately, Neonatal Hemochromatosis is usually deadly to the fetus (unborn baby) or if born alive, kills the baby in the first weeks or months of the baby's life due to complications of the toxic amounts of iron in the baby's body.   A liver transplant can, in some cases, save the baby's life and/or a combination of special drugs.  Occasionally, a baby will "overcome" the effects of NH and survive without a liver transplant.  It is imperative that the baby is treated by physicians familiar with the disease or physicians willing to consult with experts familiar with this disease.  A woman may have one or more healthy children in her life before having an NH baby.  A woman can have a healthy child after an NH baby, however, the risk of a woman having another NH baby after having her first NH baby is greater than 80%.  The good news is that new research has provided a treatment for such women who become pregnant again permitting them to have a healthy baby in the future.  More information on this miraculous treatment appears on this web site."  http://www.neonatalhemochromatosis.org/

Hmmm.. That's interesting isn't it?  I told mom I don't "need" a reason for the loss of my daughter, but I do need to know that it won't happen again.  The truth is, as I contemplate all these new findings, that a little insight into what may have happened is good...

Mom, was out here this past week.  I drug her to the walk in clinic to see my doctor.  I had recently had my beta carotene levels checked and wanted the results and I needed to ask him about this hemochromatosis.  We waited about 2 1/2 hours, but the staff know I'll wait to see my doctor instead of someone else.  There is just to much history to go over if I see a different doctor.  He gave me my new beta carotene level , 9.1.  So it has come down 1.5 in about 45 days.  Good??  I guess so?!  seems slow, and he said it could take a year or more.

Then I asked him what he knew about hemochromatosis.  I told him mom had it.  He looked at us in a kinda of stunned way.  This liver disease is genetic.  It can lie dormant in you and then become active, explains why mom had 3 healthy kids.  So I asked if I could be tested, and he said "Yes, you definately have to be tested."  I told him that I had googled it, and that I did read that it is fatal to babies of pregnant mommies.  And he nodded and said "yes".   Just before we left he said, "I didn't realize that your mom had this."  And I told him not to worry about it, it's not anyone's fault, cause I didn't realize it either.  Mom had told me to get tested when she was diagnonsed... but I was in college, more worried about exams and project due dates...

So I did more blood work.  I will know mid-week some results, like iron levels.  The major test gets sent to Edmonton for genetic testing, those results will a couple weeks.

Maybe I don't have this problem, maybe that's now what happened to Mackenzie.  And that's ok.  Even if I do have it, I will never really know what happened because we didn't put our little angel through any testing.  What I do know is that I was blessed by God to have such a precious, beautiful little daughter with me for 38 weeks in my womb.  I know that Mackenzie has forever changed my life, and that she is with me everyday.  For example, someone saw a rainbow at work today... if that rainbow was created in the way the kitchen aid poored stuff into a slop bucket or not, it was a rainbow.   Mackenzie has given me hope.

I know, that our Mackenzie was called by God, to watch over us in heaven, and that she has served a tremendous purpose in this world.

4 comments:

  1. Wow, that's pretty huge. Will be interesting to see what your results are.

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  2. Holy smokes...I'm so glad you discovered this Tyann. You have a great perspective. Hugs xo

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  3. Praying as you work through these details and thoughts....
    (((HUGS)))

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