Transplant Postponed!

My mom got a call today from the transplant coordinator saying that due to an unforeseen emergency liver transplant, my parents' surgery was going to be bumped to Tues, March 6th. Since my dad's condition is not critical - just annoying, he is a low priority.

My mom is totally fine with it seeing that her life motto is "whatever it will be, it will be". My dad was initially irritated because he HATES dialysis, but his life motto is, "Eh - what are you gonna do?". How many of you have heard him say that over the years?

Jen and I had a totally different response - absolute disappointment ...because we are both desperate for a vacation from our kids!!! We both were looking forward to a week of shopping, eating out, catching matinees, reading, resting, knitting, writing, talking and generally enjoying the peace and quiet of life without our kids. Sure, we were going to check in on the folks occasionally to make sure they were still alive, but mainly we were both excited about hanging out together for a week.

As my folks read this, I bet they are both about to pee in their pants from laughter - and my dad is saying, "You're so bad." Again, how many of you have ever heard him say that??? But seriously, Jen and I have such wonderful husbands that they can both rearrange their schedules and take the following week off from work. We are both extremely blessed to have married such amazing men.

I'll keep you posted as we get closer. Also, my mom passed all her tests this week. So there are officially no more obstacles to the transplant except for the scheduling of the OR.

p.s. My dad came up today to drop off a lawn mower and hang out with Jackson for the morning. Both Paul and I thought he looked "amazing". The best he's looked in years. He was happy and energetic and reminded me of the pre-kidney disease Duni.

"Official" Transplant Date Set - Monday, Feb. 26th

The transplant coordinator gave my folks the official word today that their surgery is scheduled for Monday, Feb 26th at 8am at MCV Gateway in Richmond, VA - assuming my mom passes all her final tests. My dad is 100% done with all his pre-op testing and appointments.

My mom needs to have meetings with the following people next week:

1. Anesthesiologist
2. Nephrologist
3. Social Worker
4. Chief Surgeon

Then she needs to have 2 tests done:

1. Abdominal CT
2. Radiological Stress Test

Dad is meeting next week with:

1. Primary Nephrologist Surgeon
   

Assuming all goes OK with those tests, the 4 of us report to MCV at 5am on Monday the 26th. Mom and dad will go into surgery at 8am. Jen and I will get updates at 9:30am, 10:30am and 11:30am. We won't have our cell phones, but I will call my husband from the hospital and he will be posting the details on this blog after each hourly update.

They will both be having open surgery for the following reasons: "the laparoscopy is something the surgeons do, but they prefer what they call "open" surgery because, they basically just take the kidney out, and close you up - total surgery time is only about 2 hours. The laparoscopy surgery time is about 6 hours! The transplant surgeons prefer to do the open surgery because the 'open/surgery' time is shorter and they can get the kidney to Duni faster! If they went the laparoscopy route, my mom's kidney would be exposed to the 'air' much, much longer, meaning by the time it gets to Duni, you have somewhat negated the quick live-donor-to-recipient edge."

Expectations for my mom's recovery:

They will make about a 4 inch incision under the first rib (preferred left-side) under the breast, remove the kidney, then sew her up internally and put 'duct' tape on the outside! She will be in the hospital about 3-4 days. When she gets home they want her to move - walk, go to Wal-Mart, whatever she wants. If she is not experiencing tremendous pain, they want her to take Tylenol. The prescription for pain is Percocet. That has a minute amount of codeine in it and people with intolerance's to codeine, like my mom, say they don't experience any problems. They do recommend taking 1-2 Percocets at bedtime just to ensure a good night's sleep.

Expectations for my dad's recovery:

We will get more information next Wed after his meeting with the surgeon. Although, don't hold your breath for details, Duni has a tendency to let important info go in one ear and out the other:) As far as we've been told up to this point, the procedure is similar to my mom's, but the recovery time is twice as long to give the new kidney a chance to become fully integrated into the body's filtration system. They will both be home from the hospital within 7 days of the transplant. Jen will stay in Richmond for 10 days and I will be in and out as often as needed.

Last Appointment

This is a great picture of Duni with a few of his grandkids, Molly (Jen's dog) and Ali. Jen took the picture at her house. Whenever Duni is up in CT, he is in charge of mowing the lawn...he needs jobs to keep him out of every one's hair:)

My mom just called and told me she has an appointment with her transplant team next Wed the 21st. They will spend a few hours going over all her tests and discussing exactly what she can expect before, during and after the transplant.

The chief of my dad's transplant team is on vacation this week, so as soon as she returns they can schedule his big meeting. Hopefully that will be next week as well.

If all goes well during those 2 appointments (and neither of my folks get a cold or the flu), they could schedule the transplant as early as Tues Feb 27th. All transplants at MCV are on Tuesdays, so if not the 27th, then probably March 6th.

On a side note, during dialysis today my dad asked the tech to check his cholesterol. Back in 2003, when he was first diagnosed with kidney disease, it was in the mid 300's. He tried a statin for a while with no success. My mom was able to get it down to the mid 200's with a lots of nutritional supplements. Imagine his shock when they told him it was 180!!! That is with no meds and no change in his vitamins.

There is a huge misconception in this country that high cholesterol is from a diet high in saturated fat. That is simply not true. For those of you who just gasped - pick up a copy of The Cholesterol Conspiracy to learn what in fact causes and cures high cholesterol. And it is not a diet low in saturated fat - that in fact can raise cholesterol.

The key for my dad was a strict gluten free diet. Once he eliminated gluten - 100%, his intestinal tract was able to heal and his body stopped absorbing excess cholesterol. Americans have destroyed their digestive systems over the years through overuse of antibiotics, ibuprofen, and highly refined foods. This leaves the body vulnerable to all sorts of health issues such as high cholesterol and high blood pressure. His BP is also back down to 125/90 - after 2 weeks back on 6oz of Xango.

I love the human body - it is such an amazing creation that can and will respond to a healthy lifestyle.

All Pre-Op Testing Done

Today was the last of the tests that my parents needed before they were given the green light for the transplant.

Mom:

1. Colonoscopy: 100% cancer and polyp free. The nurse prepping her for the procedure was again in shock at my mom's good health especially considering she hasn't taken any meds in decades - and she is 60.

Dad:

1. Dermatologist: No problems. Doc saw no reason for him to even be there.

2. VCUG: While easily the most unpleasant test he's ever had done, no concerns or problems detected.

Now they are waiting on one last appointment with the hepatologist to give the final go-ahead to both transplant teams. That appointment is on the 17th of Feb. Until then, they will just resume all normal daily activities - no restrictions besides my dad's dialysis.

I did learn something interesting from my mom today - apparently my dad's kidney's are regaining function (because he is back on a strict gluten-free diet). So they will not be removing his kidneys at all. They will just be adding my mom's as an extra safeguard in case his two eventually fail or can't bear the burden. So he will have 3 kidneys and my mom will have 1. How crazy is that? At least this way, he can give her back one someday if she needs it:)

It never ceases to amaze my how little people know about the dangers of gluten on people with autoimmune diseases. My dad's kidney failure was caused by autoimmune lupus of the kidney. If the doctors had told us immediately (back in 2003) about the gluten-free diet, he might not be having this procedure. There is a known link between MS, RA, GB, JD, HD, GD, MG, JA and many other autoimmune diseases and gluten. Seriously - if you know anyone with an autoimmune issue, please encourage them to try a GF diet. It is worth the sacrifice. Sorry - I'll get off my soap box now...

She's a Match

Finally! My mom got the official word from the transplant coordinator - she is a tissue match for my dad. Praise God!

So now all they have left to do before the transplant is a few final tests. My mom has her colonsocopy on Wednesday and my dad has his VCUG early next week. Everything is still on track for the transplant to happen at the end of Feb or early March.

Shout out to the Glastonbury Gang

From Maryann:

The next time you write in the blog would you do me a favor and send a special HUGE thank you to the Naubuc/Glastonbury Families. They are constantly sending cards, emails, prayers etc. They have been unbelievably supportive and generous. Daddy has been very touched by their many, and continuing, kindness.

Also I thought this was pretty funny - it's from Kim (Gutt) Maltz....she
wrote:

"I learned of Duni's "condition"..sounds so weird to talk about Duni with a condition. It's hard to imagine Duni with anything wrong that duct tape wouldn't fix! But, he was always a super-hero of sorts...still is-perhaps more so now!"

I thought the duct-tape comment was right-on! This is what I mean by the support we have been receiving. No one is questioning why we didn't tell them...they are just standing strong beside us! Now that's family!

Photo courtesy of the Hartford Courant, Friday January 2nd, 1998. Accompanying article entitled: "Gym Teachers Are Above Average"

A Note from Ali's Kids

Duni and Grammy Squirt -
Just don't worry - they are going to put some special spray on you so it won't hurt. Well, actually, it won't hurt because you are going to sleep. And I will send both you guys a Valentine's Day Card. I will ask God to help you. And He will help you.
Love,
Caroline

p.s. Jackson say - "Grammy's Squirt's House. Computer, Please". Some days I would give anything to live in his world of perfect oblivion:)