Phase 1 to become a donor, first you have to contact Denise Moran at Lahey, get a consent form and the form with the list of blood work needed. You need to go to your doctors office for this blood work at your expense, some insurances will pay for it. If you pass Phase 1 the Recipients Insurance picks up the tab from Phase 2 forward. So off I go to my doctors office to get my first blood work done. 8 tubes of blood were drawn from me. I honestly do not know what they all mean, except one I know is to make sure my blood clots properly. Spoke with the Live Donor Nurse Advocate at Lahey, Denise and completed the phone assessment, let me just say if you are really private person and are shy discussing yourself you probably want to rethink this process, cause she asks you everything. Denise thus far is great and she makes me laugh.
Results are back from Phase 1 I have a green light to move on to the Second Phase of the Live Liver Donor testing. Very excited really hope this will all be over for Christmas. They are scheduling my appointments for Phase 2 testing.
11/04/2010 Phase 2 Part 1....I met with my Team that will walk with me through this whole process at Lahey Clinic. My Dad and Stepmum Lynne were with me to meet the team too. Denise Morin, MSN RN, my nurse, ( we have bonded as we share the same sense of humor, I refer to her as Chicky), I promised her that once we get to the surgery part I shall bring her "comfy house pants" so she can hang with me in my hospital room for the week I am there.
Dr. Elizabeth Pomfret, MD, PhD, FACS, my surgeon, fellow Scorpio, meeting with her and her thorough explanation I feel confident that this woman will be the hands of an Angel that is needed to get me through this surgery with out a worry. If I said I was not scared I would be lying... this is scary. I have never had so much as stitch in my life and I am going to allow Dr. Pomfret to put an 6 to 8" slice in my abdomen and literally turn me into chop liver..
After along day of meeting the entire team that will be holding my hand from here on out, I then had to go down to the lab for blood work and ...whoa they took 21 vials of blood out of me! I believe I have been tested for every type of possible ailment known to man!
Might I suggest if you walk into a curtained room with 2 young women and one is instructing another..ummm ya ask for a skilled phlebotomist especially when you are holding a paper that is a mile long and they look at you, smile and say "Wow, this is a great one to learn on!" Seriously are you kidding me? O ya she sticks me once, says "feel a pinch" more like a bite from a Garter Snake (yes I know what that feels like too) So now I sit watching my blood pour out of my arm and I am experiencing "dead hand". My hand is cold, numb and blue. This can't be good I was thinking. So me of course I ask, the answer from the Experienced one "O uhuh that happens all the time, especially with all we are taking from you. All in all it was not a bad day, just alot of information. Next event is the Liver Scan.
Nov 6th 7am. Once again My Dad, my stepmum and Me are at Lahey after an hour and half ride in the pouring rain and I am outfitted with a very nice Johnny outfit. I am brought into the room for the liver scan, this part is easy, until they pumped me with the dye contrast. They tell you that you will feel warm and you might feel like your going to pee, but trust me you won't. I told the Rachel (was my techs name) "hey if I pee, I am wearing your clothes and someone will clean it up". When the dye was pumped it was like a hot rush that starts at the top of your head to your toes and o yes you feel like your peeing. It is the weirdest very very warm feeling that until you have experienced it, you just cant explain it. It is one of the moments when you talk about to someone who has had you both say "ya ya wasn't that weird" O and they ask you if you are allergic to shell fish because of the iodine content in the dye, well I have never tested positive for any allergy so I said no. Haha as I am laying on the gurny after wards I broke out in hives, Betsy my nurse that day brings some random doctor to check me out, Doc says give her 50mg of Benadryl. Ah yes Ben A. Dryl my new boyfriend, I was so high when I left that place that according to my parents they took me to McDonalds where I inhaled a cheeseburger and fries, and I babbled all the way home. It was about 8pm that night that I was semi sober. The rest of the weekend was a blurr, Ben really makes you sleep for two days.
Now we sit and wait, if I pass Phase 2 Part A I move on to the rest of the testing so....WAITING..tap, tap, tap....
11/19/2010 Just got word that we have the Green light for me to move on to the next phase, and that my liver is big enough to give my father 60% of mine. Whoa..almost expected to hear it was not and this was not going to happen. Just said this out loud to my Dad and I sat and cried for a few minutes, called my Stepmum at work made her cry too. This is very overwhelming on so many levels cant even find words at the moment and me being at a loss is kinda rare...
11/24/2010:
Since it is the holidays and next week will be spent at the Lahey Clinic for 3 days...I will telling this story once to my family on Thanksgiving and for the rest of you I wanted to you know so you are up to speed were we are. I hope to one day just be telling good news and not this scary crap....
I just received word that my "marker" tests where they took 21 vial of blood from me I came up positive on 4 for 4 markers for an autoimmune disease. Autoimmune Diseases (and NO HIV/AIDS IS NOT IN THIS LIST) are most often hereditary and since I come from a family that only gets to a place of knowing after some thing major has happened it is any one's guess what it may be. It could be Lupus, RA, Celiac disease, Crohn's disease, Ulcerative colitis and the list continues however I am assured that what ever it is it will be treatable, however depending on the severity of my disease I may not be able to donate to my father. However because I have come this far Lahey will continue to test me to rule out or in what my ailment maybe and treat me. My father is now on the National Donor list, so he may get a cadaver donor after all and the insurance would be forced to pay for it if I am not a viable donor any more.
So from the Dec 1st through the 3rd I will under go major testing including a liver biopsy and by Monday the 6th we will have a definitive answer. Of course I am praying it is a strictly a GI issue and my liver is completely unaffected but I would be lying if I did not admit that this is some scary stuff...all the way around. I will say that the only up side to any of this is for some of the tests Lahey encourages Valium..seriously who knew this would be a drug of such fluffy clouds and kittens...lol....so that's the latest I will keep you all posted once I know more..thanks for all your support....for now I/we just keep dancing, laughing and giving every thing to faith that this will all work out for the best...
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