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, July 28, 2010
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!
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!
Monday, July 26, 2010
Friday, July 23, 2010
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.
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.
Thursday, July 22, 2010
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!
Our next appointment is August 3rd to officially go over the reports. I can tell that Ron feels much more positive!
Wednesday, July 21, 2010
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!
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!
Tuesday, July 6, 2010
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.
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.
Friday, July 2, 2010
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!
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!
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