And the Chaos begins...

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Well, yesterday I went to Mount Sinai for a Pulmonary Function test and it went very good.  I have three tests to take, all to see the status of my Pulmonary Arterial Hypertension.  So, the deal is, once I have 'medical clearance' to undergo surgery, then I can get on the 'active' list, my living-donor-to-be (hopefully!) can get screened, which only takes 2 weeks to do, and the gears can be set in motion as to a date of when my transplant will be.

Now, most people don't have a scheduled 'date' as of when they're going to get their transplant, if they're getting on the 'active' list and have to wait for a cadaver organ. Fortunately, even though the liver is a vital organ, it regenerates, as most of you already know, and half can be taken out of someone, which is called a 'Right Lateral Hepatectomy', meaning that 40% of their liver, in the right lobe, will be removed.  Now, the liver is made up of two lobes, the right and the left.  What I didn't know, is that once someone gets a hepatectomy, and their liver will regenerate, the right lobe that gets removed does not grow back.  What grows, is the left lobe, and it grows to 90% of the right & left lobe combined, so a living donor will only have a left lobe, but a very large one.  And I, will only have a right lobe, but a very large one, as well.  This anomaly does not hinder the function of a 'normal' liver. And when I say 'normal', I mean the one you're born with (a right & left lobe).  Also, for those who become living donors, must get their gallbladder removed, since it's in such close proximity to the right lobe, which isn't really a big deal, I had my gallbladder removed laproscopically in 2006, due to 'sludge' that was accumulating in my gallbladder and causing me pain when I ate. 

Whew, my ankles are itching like crazy! I fear that they will start to bleed, or worse, swell up again. I'm scratching so much, they're scabs formed and I can't scratch those, because then I'll start to bleed like a stuffed pig!  I see my ankles everyday, but I do think they are swelling a little bit.  It's not just my ankles, though, I'm itching all over, it's driving me mad!  Anyways, I take the two remaining tests for medical clearance on the 26th of this month, and those are the two test I fear I won't do so good in.  It's an Echocardiogram and a CAT Scan of my heart.  When I had the Heart Catheterization done about 6 months ago, it didn't look good, or that was the impression I got from the Dr.'s.  So, after I get these two tests done on the 26th, I see the Pulmonologist on the 28th, and she will look at the results of all three tests and determine if I'm fit for surgery.  If she determines that I'm fit for surgery, and gives me medical clearance on the 28th, I will then see my Hepatologist shortly thereafter and I will be put on the 'active' list.  Once that happens, my living donor can be screened.  She will have to go to Mount Sinai for two days.  Day one is screening on blood type (which I know is compatible), going over any previous medical history (and this person has no prior medical history, which is more than I think a lot of people can say!), and an EKG, and blood work to rule out any diseases that would make her unfit as a candidate.  Once that is done, and everything comes back good, then she'll have to go in for Day two of screening, which is more intense things, such as MRI, Ultrasound of the liver, CAT Scan of the liver, viewing the arteries of her liver to see if they would line up correctly with mine, and this all takes two weeks.  She also would be speaking to a counselor that would be assigned to her, to ensure that she's doing this on her own free will, not being  coerced in any way, and that she's aware of the risks, and that she's doing this voluntarily.  That's the part that I'm most afraid of.  I've tried to educate her as much as possible to make sure that she's fully aware of what she's getting herself into, and if these are risks she's willing to take.  Now, she's family and I will always love her, regardless.  However, I'd be lying if I said that I knew she was a match, then decided that the risks were too great for her and for that reason, she decides not to go through the procedure, which I'm sure happens at the clinic a lot.  This is why it's pertinent not to put all my eggs in one basket, so to speak.  Another family member has offered to be screened, if, for any reason, this does not happen with the first person getting screened, but she's had prior liver problems, and I don't think she'll be able to donate.  I spoke to my Dr. about it, and he said she'd have to get a liver biopsy done first.  It's also my job, as the recipient, that the donor be fully informed of what they're getting themselves into, and be prepared for it.  I feel like, if anything, I'm discouraging people from wanting to be my donor.  I just feel like I don't want anybody to risk themselves for me.  I know I can't keep thinking this way, it's just negative thoughts, but, in a way, it's also the truth.  Mount Sinai has done many successful living donor transplants, and the chance of things going wrong for the donor are slim.  This is why a potential candidate must get heavily screened, to ensure that the procedure will go well for them.  This is not something that should be rushed, whatsoever.  It's strange that I'm discouraging people to get screened just because I'm the only one who's benefiting from this...certainly not the donor!  It's not going to be easy for me, though, and I know this.  I just feel like, if anything goes wrong with me during the transplant, I would hate to leave that burden on the person who risked their lives for me...all in vain.  People do die during transplantation, it's not that rare an occurrence.  In the booklet "What Every Living Donor Needs to Know!" says in the 'psychosocial effects' section is "Would you be able to accept that the recipient may die during surgery?  Not only do you have to deal with the grief of losing that person, but you have to focus on your healing, as well."  Now, these were some really tough things to read and think about, being that the 'recipient' is me!

I guess these are just things that they have to let the living donor know, but I must stay positive and pray that when my day for the transplant comes, I will be waking from the procedure!  I can't think any other way.  But, before I go into surgery, there will be a room for all friends & family of mine to wait in, and I would like to speak to them before I go in.  I can only imagine what kind of a talk I will have with everyone who would be there.  I know it will be in my head that these may be the last words that I say to my loved ones.  The operation is 6-12 hr's, and a Dr. will come out periodically to let my family know how the surgery is going.  And I expect most of my family to be there, as well, to keep abreast of what's going on.  All I ask, is that I wake up to lots of flowers in my recovery room!  I would like that a lot!  To wake up and smell fresh flowers all around me, inspiring me with the scent of life!

Till this point, I've been very impatient on getting this transplant over with, but now that it may be so near, I feel like things are happening so fast!  But I also feel like it's taking forever, it's hard to explain.  I've been living with Cirrhosis for 4, almost 5 years now, and it's only gotten worse over that period of time.  It'll be such a relief to know that once I get my transplant, I will no longer have this accursed Cirrhosis!

Well, that's all for now, I will write to let you all know how the two tests go on August 26th.  Till next time...