#1

Ron received a call from the transplant coordinator - he is #1 on the list - the next liver with matching blood type will be his. We're both anxious and hoping to hear this weekend.

"All we want for Christmas......"

Our number one wish for Christmas is a new liver for Ron. We know it's out there somewhere........

Ron had his monthly visit with the liver transplant team:

• Organ donation has been down - so fewer livers have been transplanted over the past three months.
• Ron is at the very TOP of the list.
• They increased his blood pressure medicine (his blood pressure has been creeping up over the last two months).
• They cut his lactulose due to stomach cramping; and suggested he take his anti-nausea medicine daily (before he becomes nauseous).
• They did the normal blood tests and he has another appointment in 4 weeks.
• If by chance, he doesn't receive a new liver......in February his MELD score will be raised to 28.

The house is full of boxes - waiting to be emptied - waiting for the house to be turned into a Christmas winter wonderland.

I fell in a hole at the farm in October and injured my ankle - after 2 months and 2 different types of braces - the ankle hasn't healed.....4 days ago, I was put in a hard cast for three weeks. The cast comes off December 28th.

We want to wish you all a very Merry Christmas.

Thank you for your thoughts and continued prayers.

Moving on up!

Ron had a CT with contrast last week and met with his doctor today. The tumor hasn't gotten much bigger - and they won't be doing the chemoembolization (whew) right now. His MELD score has climbed from 22 to 25 (good thing). He was told it shouldn't be long now. Ron is showing signs of jaundice (yellowing of his eyes), and he was given new medication for his nausea. Ron is exhausted and spends a lot of time resting and sleeping.

We're still caught in 'the wheel' with the VA - they acknowledged Ron's Hep C and diabetes was caused by Agent Orange, and Ron has an appointment with another VA doctor next week - keep in mind we've been fighting with the VA and the bullshit paperwork for almost 3 years. It's very disheartening.

I try to keep Ron moving forward - whether he wants to or not - we'll make it!

Ups and Downs

Almost 2 months on the liver transplant list.........physically Ron is having difficulty; vomiting after large meals, the fatique has worsened and the newest symptom - which by the way - he totally denies......hepatic encephalopathy: a build up of toxins in the brain which causes confusion, slow response, difficulty with motor skills and personality changes. The liver can no longer filter the toxins - these toxins build up in the brain and cause it to go 'haywire'. Both of us feel disappointment and wonder if Ron's liver will ever come. We need some uplifting and positive news.

Kinda' News

Ron had an appointment with the transplant team Thursday. The doctor didn't tell us anything definite - but he did say - Ron may be further UP on the list because the surgeons performed a couple of liver transplants last week.....Ron was #5 on the list August 20th.

1 Month on List

It's been one month since Ron was listed on the transplant list. He has his final required "how to and what's up concerning liver transplant" class this afternoon. We're looking forward to Ron's 45th class reunion this weekend - and to top it all off - we have bats in our attic.

Are we there yet?

When I was little we used to vacation in southern Florida - I would lay my head in my father's lap as he drove, and watch the odometer - loudly announcing each and every mile as it ticked by (it must have been a long trip for my parents)........with the final question - we've all asked - are we there yet?

We can't go on vacation (at home) - we can't leave town - so this weekend - we're going on a mini vacation - no talk of liver transplant....

So again the question - are we there yet - we really want to have this ordeal over and done with.....no more talk of liver transplants until Monday.......that is....unless we receive 'the' call.

Things to think about

There's more to liver transplant than the surgery: our annual trip to Tybee Island, clogged gutters, tall grass, dog walking - but the thing I hadn't thought about until recently......where is Ron going to sleep. We live in a two story house and the bedrooms are upstairs....and he certainly can't spend his days and nights sleeping on the couch. Our sunroom will change again.

SLEEPING: The sunroom has had many uses: sunroom, diningroom for special occasions, photography studio when the downstairs studio flooded, and now a large bedroom equipped with grandkids' toys and Cheyanne The Wonderhorse. We've even worked out the TV issue - if we position the bed just right, he can see the TV in the livingroom, and use the remote control to change channels = Perfect!

DOG WALKING: Ron usually comes home at lunch and walks the dogs (2-Boxers and a Jack Russell) - but once he's home from the hospital - he won't be taking a 92lb Boxer for a walk. So, he's training the dogs to wait and go out in the afternoon once I get home from work - so far - so good - no accidents.

GUTTERS and GRASS: Ron spent his Saturday up on the roof cleaning gutters. It wasn't until tonight that he told me he almost fell off the roof - he won't be going up on the roof again....gutters clean and a riding lawn mower - I'm hoping the men of our family will spend a couple of their off days helping out with outdoor work.

TYBEE TYME: We can't go too far from home - our annual trip to Tybee Island is on the back burner until after the transplant and recovery time....something to look forward to.

Every weekend we hope for a call - and here it is - Sunday night again. Soon, I know, soon.

Update

Ron received his official - "You're on the transplant list" from Piedmont Hospital. The letter also mentioned he should stay healthy, eat right, take care of himself..........so, Friday he decided to cancel his motorcycle insurance and give his bike a rest. I think taking any risk at this point in time isn't a good idea. If he dropped his bike - broke a leg - and a liver became available - well, he'd miss it.

Along with Ron's Hep C - he's battling diabetes. Tonight his blood sugar dropped to 40 - he was moving in slow motion and dripping in sweat. A tube of glucose, 2 glasses of juice and 30 minutes later - his blood sugar is 66 (normal blood sugar ranges from 90-120).

Ron is experiencing regular nausea after evening meals - from what I've read - it's caused by the liver cancer. I think if he eats smaller meals and more often - it may help - we'll see.

Ron seems to be more tired every day. He comes home and takes a nap before he goes to bed for the night. Hoping for a phone call soon.

Life After a Liver Transplant Performed at Atlanta Piedmont Hospital

Understanding the Wait for a Transplant at Atlanta Piedmont Hospital

The Hurry-up Train

We feel like we've climbed aboard the 'hurry-up' train - waiting for the call - and now we're trying to be realistic since hearing the news that Ron is number 5 on the liver transplant list.

If the call doesn't come in 90 days - Ron will receive chemo for the liver cancer. We've set our sights on a new liver, but until that happens, he's gotta make due with the old worn out one; chemo will keep the cancer at bay.

The treatment is Chemoembolization - basically it's directed chemo - placed in the liver cancer tumor - cutting off the blood supply to the tumor - it's poison to the tumor.

Days will pass -we'll go to work, handle our household chores, enjoy our family and wait.........all aboard!

Birthing Babies

I know, funny title........do you remember, way back when.....when a woman went into labor - the doctor would send someone to boil water - somewhere in the back of our minds - we knew why (sterilize scissors) - but it always seemed like 'busy work' - just to give someone something to do to get ready for the 'big event'.

"Pack your bags!"......think about it. We'll get the call - make our way to the hospital - Ron will be asked to shower (probably with antibacterial soap) - they'll put him in one of those pretty gowns with the rear ventilation system.

Surgery will last 7-9 hours, 2-3 days in ICU (still in that 'refreshing' gown), and 7-10 days in the hospital; exactly when will Ron need all those pairs of socks and underwear?

So we've decided "Pack your bags = Boil water". That's okay, it's all about preparation - and we're ready - bags and all!

He's on the List!

The transplant team called today and Ron is on the list - and #5! We're working on a 'getting out of the house (quickly) plan' - not sure where to start.

"Pack your bags!"

Ron met with the transplant team today:

• Cardiologist signed off - cardiac issues - okay
• Waiting on some final paperwork and Ron will be listed for a liver transplant
• His MELD score is listed at 22
• If Ron doesn't receive a liver within 90 days, the doctor will place medication directly into the tumor and Ron's MELD score raised to 25
• Dr. Shrestha told Ron to "Pack your bags"

We're excited, anxious and hopeful! Thank you friends and family!

MRI Stress Test

Tuesday Ron is scheduled for an MRI stress test - this test will help the cardiologist decide if he's going to sign Ron's release - so we can hopefully get his name on the transplant list. Hoping for good news tomorrow.

Hurry up and wait

Ron had his heart cath last Friday - he has made several calls to the cardiologist - still no MRI appointment scheduled.

So I guess we'll hurry up and wait!

Heading down the road!

We're sitting in the cath lab - Ron's back in his cubicle, has eaten (a lot), and is now doing his 45 minutes of walking the halls before he's released.

Dr. Taylor, cardiologist, said they did find calcification in the main artery to his heart - but what concerns him is the blockage seen in the front part of Ron's heart. He's guessing 40-50% blockage - he doesn't 'feel' heart surgery is in order at this time....but before he can give the transplant team the 'go ahead', he wants to do a more comprehensive MRI. Once he verifies the results, he'll either sign off to the transplant team - or worst case scenario - he'll turn Ron over to the heart surgeons.

The MRI will be administered via outpatient and then he'll meet with the cardiologist to get the final report.

We feel VERY relieved - cautiously optomistic and ready to head down the road to Ron's final destination - liver transplant.

THANK YOU everyone - your support means everything to Ron and I.

Hazard - Road Block!

The transplant team met with the committee today to discuss Ron's case for transplant. Our transplant coordinator, Cindy, called with some 'not so good news'. During one of his CTs they came across calcification of his aorta and coronary arteries.

Ron is scheduled for a heart cath at Piedmont-Atlanta, Friday, August 6th.

From what I've been reading, 26% of patients waiting for a liver transplant have some type of cardiac issue..........and if the patient is transplanted without resolving the cardiac problem, there is a 50% fatality rate.

We're not sure what they will find during his heart cath - whether they will be able to resolve the issue then and there, or his condition will require open heart surgery, or they will postpone the liver transplant or 'nix' the transplant all together.

I do know that if he doesn't receive a liver - the liver cancer will continue to grow and we don't have any time to waste.

We'll wait to hear - Ron is disappointed - but we're not giving up!

Wednesday - Take a Deep Breath

Wednesday the committee meets and goes over Ron's case - if they vote in his favor he will be placed on the transplant list with a MELD score of 22. Cross your fingers.

Lots of Paperwork

Tonight we looked through all his liver transplant paperwork - filling out his advanced medical directive: someone who will make medical decisions for him should he not be able {me).

We read the large packet of information about the complications of transplant surgery: length of surgery, what tubes go where, how many days in ICU......there are so many steps and things to know - I think it's best to get an overall view, but take only a few steps at a time...otherwise, it will be very overwhelming.

Ron is feeling good - positive - ready to go!

Ron's little buddy!

Papa and Oliver

Higher MELD score

News is good. Because the lesion in Ron's liver has grown (just a tad) - his MELD score has been raised from an 8 to a 22. Remember, in order to receive a liver, the MELD score must be between 20-25.

The transplant committe meets every Wednesday and hopefully they will submit his request. He was told - we should hear something in 2-3 weeks. Once he's placed on the list - we pack our suitcase and wait.

Waiting on News

Ron spent the day at the hospital having tests - more tests in the morning - then home. One of the transplant team doctor came by his room today - and said so far - all the tests - he's an absolute 'perfect' candidate - and if all goes as planned - his case could be presented to the committee in the next 2-3 weeks. I don't want to get ahead of myself (I can't help it) - once placed on the list - we pack a suitcase - concentrate on keeping him healthy and wait on a call.

Our next appointment is August 3rd to officially go over the reports. I can tell that Ron feels much more positive!

PJ Party @ Piedmont

Ron's going to Piedmont tomorrow morning - bright and early for a couple of days of testing. The tests are the next step on the road to getting his name placed on the transplant list. Ron is always the positive thinker in our relationship...I, on the other hand, think everything that could possibly go wrong....will. This time, he has a touch of 'things going wrong'.

Ron has liver cancer and I believe the cancer is primary to the liver - meaning, if he has cancer some where else - it's not a good thing. Secondary liver cancer could get him thrown off the list before he's placed on it. He's afraid he has cancer some where else.....I, on the other hand, (this time) believe only 'good things'.....I don't believe he has cancer any where else.

Needless to say, Ron is nervous about tomorrow. He's stressed and worried, but he'll get through it - 'cause his family loves him....and Oliver needs his Papa.

Do you hear me Ron? You will be fine and you'll get through to the next step - and you will be placed on the liver transplant list. I love you!

2nd Visit w/Transplant Team

Today we saw numerous people at the Transplant Center. I love the idea of the department being a 'one-stop-shop' type of center.

Dietician: I think she was impressed with our knowledge of dietary restrictions we're already living by. Ron living with diabetes we've learned what he can and can't eat. Add to it - the Hep C condition - dietary restrictions - which limits his sodium and red meat consumption. I think we passed with flying colors.

The 'Slideshow': We were shown a slideshow with 'everything you ever wanted to know about a liver transplant' - again, we felt like we've 'been there done that' because every complication of end stage liver disease listed - Ron's had it. We found out that 40% of offers (donations) are turned down (The organ must be in good working condition and right size). We were shown the stats for transplants at Piedmont - and all stats were above the national stats - GREAT!

Surgeon: He thinks Ron is a great candidate for liver transplant. Ron is thin, pretty much disease free (if you don't count his liver) and as the surgeon said ... with 'just a little bit of diabetes'. The surgeon told us, "If I had a liver on the shelf, I would give you one today." He told us, we have his vote YES!

Social Worker: I wasn't clear how the social worker fit in the whole process; but once she began the questions....it was clear. It is very important that Ron has a strong support system. People who love and care for him - people who will be there for him before and after the transplant, people who can take him to doctors appointments and make sure he has the after care support he needs. She asked about family and friends - insurance and financial security.

We'll wait on our next call from the transplant center - Ron will need to go in for a head to toe check up - cross your fingers!

We're feeling pretty positive and Ron is ready to keep the process moving.

Esophageal Varices

We're at the hospital today for a scheduled procedure. Approximately every 4-6 months Ron comes in for a endoscopy for banding of his varices (blood vessels gone wild) in his esophagus. This is an outpatient procedure; today's procedure is mighty early - 6:00am. We should be out of here in a couple of hours. Once he receives a new liver (cross your fingers), this will be a procedure of the past.

After the procedure - doctor only had to perform one banding - wants him to return to take another look in 1 to 2 months. Doctor said he looks good!

Anxiety

I'm beginning to feel some anxiety about Ron's (hopeful) liver transplant. His next appointment, which is his pre-screening appointment, is July 6th.

We've been reading alot of information about the surgery itself. The planning - getting all his paperwork together - redoing his will - medical directive - insurance papers, his military discharge paperwork.

It all feels like he might go away. Right now, I can't think about that - I may never want to think about that. But something in my mind keeps reminding me that at some point in time one of us will have to go on without the other.

Everyone should sit and think about that - one of you in your relationship will leave you - not because they want to but because it happens. Does panic set in?

I want to believe his liver transplant will go on with little to no complications because he is a strong man who loves his family very much.

He told me yesterday - to make sure he sees Me, Libby and Oliver just before the surgery.

We live our life on the tiniest little thread - one tiny slip - or tear and life changes for all - like a ripple in the water.

I love you Ron.

Our First Meeting with the Transplant Team

It looks like it's going to happen. There are some 'ifs' - but isn't that what life's made up of.....

Here's what we know:

Ron does have liver cancer (lets put this aside for the moment).
We met with the coordinator of the transplant unit at Piedmont Hospital.
He believes Ron is a good candidate for a liver transplant.

Step 1: Pre-Screening appointment - we'll meet with the surgeon, dietician, social worker and take a class on liver transplantation.

Step 2: Ron will have a stay in the hospital for a day and a half and checked from head to toe - stress test, MRI, Pulmonary, Endocrenologist (spelling), bone density (you get the idea)....and make sure the cancer hasn't spread.

Step 3: Follow-up appointment to go over all the tests and do some blood work.

Step 4: The results are taken to a committee - with these tests, and Ron's MELD score, which if he has cancer is automatically accelerated to a score of 22 (if the MELD score falls within a range of 20-25 = transplant) - the committee decides if Ron is a good candidate for transplant.

Step 5: Ron is put on a list - we're told to pack a bag - stay near a phone day and night and wait.
The average wait for a new liver is 35 days.

The surgery itself takes 5-7 hours
ICU for a couple of days
7-10 days in the hospital

We're a tad overwhelmed but optomistic - need positive thoughts and prayers!

I will post anything new - thank you friends and family for taking the time to read our blog.

Pam and Ron

Alcohol NO - Virus YES

Ron is always quick to inform people - he doesn't drink - hasn't drank in years (17+ yrs) - since his diagnosis. People assume he must be an alcoholic because he has cirrhosis of the liver....NO, the scarred liver tissue was caused by the Hep C.

I keep telling Ron - he doesn't have to explain anything to people.........three weeks ago Ron had to be taken to the hospital by ambulance. He told the paramedic he had Hep C and the paramedic asked, "Are you still a drinker?"

Transplant Team

We have a meeting with the transplant team in a couple of weeks - the journey will finally begin. Ron has a spot on his liver that has doubled in size in 6 months. This spot may place Ron higher on the transplant list.

What is it?

Ron has Hepatitis C - which is layman's terms means - there is a free-floating virus in his blood that is slowly (now more rapidly) killing his liver. Liver means life - much like the heart - you can't live without it. Much different than the heart; a heart transplant means new heart and healthy life. A liver transplant means new liver, but the clever virus never leaves the blood and begins immediately (sometimes more quickly) killing the new liver. A liver transplant buys more time............ The entire process is dependant on time - and timing.

Medical definition of Hepatitis C.

The Purpose

We're beginning this long journey here at the starting line. As Ron lays sleeping on the couch, I contemplate our journey. As oblivious as he seems to be, here at this moment, I realize he has to live with the constant thought of his mortality and the knowledge of what the loss of him would mean to his family.

I must say, flat-out, I am a glass half empty type of girl; I will always think the worse, because I believe if I am too optomistic, the mere glimpse of sunshine is only a flash in the pan and not the proverbial sun-shiny day.......sunny days bring storm clouds and torrencial rains.

So as we begin, I want to thank those who read this blog - if you're reading - you have a love for this complicated - yet simple - loving man.