Friday, November 11, 2016

I need a LIVE LIVER DONOR

It is rather hard to believe that my liver is dying off.  I know that my skin has turned yellow.  It did so a year ago and I commented on it back then.  I know that I've been tired for quite some time.

Last month when my cousin Kyle died I was shocked.  Did I have the same genetic disorder?  Well it turns out that I do.  My lab results came in this week.

I am going to be put on the liver transplant list.  By the time I get a dead person's liver I'll be dead since the list is very long.  My best bet, even my doctor informed, is a LIVE LIVER DONOR.

I need an A Positive live Liver donor.  Your liver will grow back.  To schedule the surgery takes about 4 to 6 months after all the testing is done.  Your liver grows back in about 8 weeks after the surgery.  Oh and they don't take all of your liver but only a portion of it.

My primary care doctor put me in for my referral to see the gastroenterologist.  I will hopefully get a call from one in the next week.  Since the holidays are coming up I'm not going to hold my breath on getting an appointment this year as there isn't much of this year left.  You also have to realize what type of insurance I'm working with.  I have Tricare.  I'm a military dependant.

There is no cure for Alpha-1 Antitrypsin deficiency.  The only thing I can do is hope that I can get a liver transplant.

Meanwhile I need to update my final wishes.  I've talked about them, albeit jokingly, with the family.  Now this has to be a serious talk.

I guess I'll be back to blogging more often now as a new journey in my life has started.  I'm hoping I have a long road with a happily ever after.  For now it is a day-by-day and a plan for the ever-after and final ending.

If you think you'd like to be my Live Liver Donor please contact me.  I don't need your whole liver but just a part of it.  I don't need it today.  Like I wrote above it does take some planning.  Remember I need a perfect match of A+ (positive).

11 comments:

  1. I'm so sorry to hear this. I am not a match to your blood type but I have shared your blog. My prayers are with you.

    ReplyDelete
  2. I'm very sorry that you received this diagnosis and also for the loss of your cousin. I know you must be very frightened. My husband just received a liver transplant in June and I am also a nurse so I am very familiar with the transplant process having just gone through it. Ironically my cousin died from liver disease last November.

    A few things...
    Please make sure your primary doctor refers you to a hepatologist instead of a gastroenterologist. Hepatologists obtain additional training to specialize in liver disease and will provide the best care to keep you as healthy as possible until you get a liver.

    When you are searching for a live liver donor the Rh factor (+ or -)doesn't matter; your donor can be A+ or A-.

    A size match between you and your donor is very important(not just for the organ but the vessel connection size to match). I was very interested in becoming a live donor for my husband because we both have the same blood type but I was too small for him.

    I encourage you to join the Inspire support group with the American Liver Foundation (https://www.inspire.com). It's an excellent source for information and support and there is a group specific for people with Alpha-1 Antitrypsin. Learn as much as you can. Knowledge is power to navigate through the transplant process.

    My husband had some complications but he is doing great now and was back to work within 3 months. Hang in there and keep advocating for yourself. I'll be sending positive thoughts.

    ReplyDelete
    Replies
    1. Thank you for your comment. You have given me some information that I didn't have before and I'll be contacting my primary care doctor about the hepatologist. The gastroenterologist is so that the varices in my esophagus get checked out.

      Delete
  3. I am sorry to read this news. Hoping you get a donor soon and that you stay healthy.

    ReplyDelete
  4. I hope u get ur liver soon, i am not a match, prayers and blessing to you and will share you blog

    ReplyDelete
  5. I'm so sorry Rebecca... (I'm B+... wish I could help...)

    ReplyDelete

If you decide to be a Troll I will refuse to pay your toll and your comment will not appear.