mlepp0416

My husband’s name was also Tom. He was not a heavy drinker at all. In his younger years, yes, he probably was. But not any at all in the last 40 years or so. He had NO symptoms. He was on a a cholersterol lowering drug so had his blood work down every 3 months. In Jan ’08 his numbers were perfect. Three months later his Alk Phosphate was 10x elevated. That was the first time there was any indication that something was wrong.

He had a left liver resection but they also took part of the right lobe, about 3/4’s of his total liver. He had a good 18 months, then started turning yellow. A new tumor, radiation, chemo…was given 6 months, lived another two years, then passed away on 11/20/2011.

This is an evil cancer, and there are not a lot of people who get 100% recovery from it, even with a successful resection with clean margins, even with a liver transplant, as this cancer tends to reoccur.

Happy that you got time w/your brother while he was sober. I’m sure that you have some good memories of him. Hold those close to your heart.
Hugs,
Margaret

I have a high deductible health plan, a PPO plan and about the only things for Tom that had to have an authorization was his scans. My ins. never delayed or denied anything for Tom. Other than having to meet the $4,800 and then the next $3,000 everything was covered by my insurance.

A lot of the required authorizations go on ‘behind the scene’ cause the doc’s/hospitals take care of them and the patient isn’t even aware unless there is an issue.

Margaret

Maria:

I’m so sorry to hear about the loss of your mom. Losing a parent (or any loved one is never easy)

I lost my husband from CC on 11/20/2011 so I know the grief and pain that you are going through. As time goes on it will get easier, and you will hold your mom close to you in your heart and your mind.

The only time your mom will truely be gone is when people who loved her stop talking about her or stop remembering her. Speak of her often!

At my husbands funeral our friiend Dennis told the story about the Dash. It’s not the date of birth or the date of death that is important (My husband Tom 1947 – 2011) but it’s the dash between the dates that is important because the dash represents the person’s life and what he/she did with their lives during the time that they were living! So the DASH is what we should focus on!

That thought has helped me through many rough days. When I’m having a rough day I start thinking about The DASH and how Tom lived his life…it really helps cause I find myself remembering his LIFE, not his death.

Go with God and my prayers are with you and your family in your time of grief.

Hugs,
Margaret

Marions: Since Medicare is a ‘Federal’ program I’m pretty certain that what is the norm in one state would be the norm in any other state in the U.S. as we are all under one Federal Government. Right?

In Tom’s case, my son was willing to be a live donor and so was Tom’s son for a liver transplant as they can use only a small section of the liver. As to whether or not a persons medical insurance would cover that type of transplant, it would depend upon the policy. Most medical insurance’s do have some type of ‘transplant protocol’ written into their policies. I know for certain that all Fully Insured policies do, and for ASO (Self Funded) policies, it is up to the individual company that is paying the claims for the ASO plan.

Medicare ? I don’t work for Medicare so I don’t know what rules they have or what they will or will not cover. I do have a Medicare booklet here as we were just in the process of getting Tom signed up for Medicare when he passed. I’ll have to take a look and see what it states regarding transplants! Not right now though as it is 3:32 am (I can’t sleep) Imagine that eh?

I do know that when Tom first presented with CC we did discuss the transplant option. Given his other medical conditions, they really played down a transplant, even with a live donor option BECAUSE CC can come back even with a new liver and stats show that a transplant may not change the outcome. Even Mayo clinic Stats show that. I was amazed when I read that one!

Margaret

Shar:

My husband Tom had ‘external drain’ tubes for most of his 4 year fight with CC. After his original CC resection, he had a JP drain tube coming out of his lower belly as the liver had developed a bile leak. And some of the bile had leaked into a cavity behind his liver so he had another tube coming out of his side. At that point I had to do nothing with either of those tubes, except measure and record how much bile his body was putting into those drains. (and of course, smell it for foul odor which would mean an infection).. He had those two drains for 7 1/2 months.

Then we jump months forward when he started turning jaundiced. He had another tumor that involved the hepatic artery and his bilirubin level was over 24K (over 24 but it’s measured in the thousands) They tried to get an internal stent in at that time to relieve the pressure on the liver and to rid his body of the excess bile to lessen his bright yellow color. His urine was also dark brown as his kidneys were doing their part to help rid the body of the excess bile. They tried about 4 times to get an internal stent in using a different technique each time and were unsucessful, so the only route to go was an external drain.

I was onboard with that and so was he. His interventional radiologist never gave up trying to get the sent internalized. Each time a tube exchange was done, he looked for a path to get a stent inside and each time it was a no go. Even Mayo clinic tried twice and they could not do it.

With Toms’ eternal drain, I flushed it daily, cleaned the site with a good antiseptic cleaner, even using a q-tip to clean out the ‘hole’ where the tube entered his body, then flushing everthing with the antiseptic cleaner, even the tube. I would then put a 4×4 gauze pad under the tube and another one (folded to size of course) over the top of the tube and then cover the entire site with a TEGADERM FILM! This is the best as far as bandages go. In the two years that he had that drain tube, he could take showers without fear that his bandage would get wet. I always used gloves when ever I touched his drain, or flushed it, or cleaned it. It just became a part of my daily routine.

External drains can also become clogged and then the CC patient can get a rather severe infection in the liver. This happend to Tom about 4 times in two years. They used to change out his tube ONLY after an infection. I am a good talker and talked his interventional radiologist to talk to his PCP and discuss doing the tube exchanges MORE frequently, we started at every 8 weeks, infection resulted. Moved to every 6 weeks, infection resulted. Moved to every 4 weeks and NO MORE infections! YEAH! So each and every month until Tom passed on 11/20/2011 he had a tube exchange. Never once during all the time that he lived with that tube did his skin break down at the site. A little red at the site of the stitches when they were first put in. Other than that, nothing. His doc and the nurses were amazed and kept telling me that whatever I was doing to “Keep it up” and that when they saw Tom’s name on the schedule they knew that when they took his bandage off, his skin was going to be an nice as a baby’s butt!

There were time’s when Tom complained about the tube. He hated the first two – three days after a tube exchange cause the stitches hurt until the skin healed. He hated having the bag but realized that in the big scheme of things it did help him to look normal, rather than a glow in the dark yellow. He learned to pin it in place so that the tube could be pinned higher up on his shirt so the tube didn’t show when we went in public. Eventually we talked the doc into shortening the tube a bit.

His doc that did the tube exchanges for Tom had done them so many times that he’d always tease that they were going to get the tube exchang down to less than 4 minutes. It generally took him about 5 min from the time he inserted the wire until the new tube was in place. And he also added more drain holes to the length of the tube that was inside the body. This also helped to keep the tube from plugging up so quickly. That is also why it is so important to flush the tube daily, to keep those holes open so that the bile comes out the tube into the bag, rather than to be leaking along the outside of the tube onto the bandage. If this happens – call the doc right away as it means the tube is plugged! You can try first flushing it 2x a day, but if it still leaks onto the bandage, INSIST on a tube exchange.

That too happened with Tom and is another indication that the external drain is plugged. And bile is VERY caustic to the skin so it’s important that the site be cleaned every day, and that bandage is clean and dry with minimal ‘stuff’ on the bandage. The only day that I did not change the bandage was the day that the tube exchange was done. But I hated doing it the next day cause the bandage they put on was so yucky w/blood, etc.

Tegadern film is very expensive. We were lucky in the respect that Tom was a Veteran and got all of his medical supplies from the VA. They sent 4×4 gauze pads, 10CC flushes, Tegaderm film, gloves, etc. I had to buy Q tips and the antiseptic wash. Band Aid brand about $4 – $5 a bottle. At first I used the antiseptic that they give you when you get your ears pierced and that also worked well, but the bottles are so small that I switched to the Band Aid brand of antiseptic wash and that worked even better. I bought 6 bottles once when Walgreens was clearancing it out!

I hope this info is helpful, feel free to ask me any questions about tubes/exchanges/ flushing/cleaning the site, etc. I’m kinda like the resident expert on external tubes and bile bags. Even when Tom was inpatient, he’d tell the nurses right out….”No one touches my drain except my wife” and all the nurses were so extremely interested they asked if they could watch (and learn) while I did it. Many nurses had never even had a patient with a liver bile drain bag.

Go with God and hang in there!

Hugs,
Margaret

Welcome to the site, and to your new CC family. I have just recently learned that people over the age of 65 cannot have transplants, even Kidney transplants. I have a brother in law who is 71 and his wife had a kidney transplant at age 61. Long and short of it is if you are over 65 apparently any transplant is out.

Keep in mind also that no one has an expiration date stamped on their butt. My husband Tom was given less that 6 months after he had a ‘successful’ resection. But 18 months later he started turning yellow, and they found a new tumor that involved the hepatic artery. The reason it is inoperable is that if they ‘nick’ the hepatic artery, you will die on the table. They were able to ‘kill’ Tom’s tumor with radiation. He did have to have an external drain tube because they could not get an internal stent in. And they tried, numerous times here in Green Bay, Wi. And they tried twice at Mayo Clinic in Rochester Mn.

He then started oral chemo Xleoda which he tolerated very well. After a radiologist misread a scan, and ‘thought’ the cancer had spread, they installed a port and started him on Gemzar/Cisplatin which he also tolerated very well. To make a long story short about 2 months ago, I could see that he was going downhill and his urine output was not what it should have been. I took him in, he spent 3 1/2 days in the hospital, came home and started on Hospice, and 3 days later he passed away. This was ALMOST 2 years to the day when his then oncologist told him that there was nothing else they could do and that he had less than 6 months. Well, we got another two years and we made the most of every day of those two years.

Go with God and hang in there. I know full well what you are talking about, I too had to stay strong for Tom, I was his strength when he was weak, I was his happy when he was sad. I was his caretaker, his wife, his everything, as he was mine. I did the very best I could and promised that I would take care of him until the end and that he would be at home with me, which is what he wanted.

Live each day taking it one day, one hour, one minute, one second if you have to. Don’t be afraid to do the research, don’t be afraid to ask questions. Get a digital tape recorder and take it along with you for meetings with doctors. You can then re listen to it and you will be amazed and the questions that will come to mind. Write down those questions and persent them to your husbands doctors, they are WORKING for you!

Hugs,
Margaret

Lisa:

Prayers are coming your way from Wisconsin. I hope and pray that they get you onto a chemo that works, radiation will most likely zap that tumor back!

Hugs,
Margaret

I would have PUSHED the doctors who did Tom’s resection for CHEMO after the resection instead of letting them tell us that Chemo was not necessary because they had gotten clean margins!

I would have insisted on a Scan every three months after the resection instead of just letting things roll along for 18 months until Tom started turning yellow!

I would have purchased a good video camera and took lots of video’s of Tom instead of just still pictures.

I wish I had INSISTED that his children spend MORE time with him and that would have given me a break from being his only caretaker! And he would have appreciated the time spent with them. I wish I had told them about how many times he cried because his kids did “not have time for him”.

I would have TALKED him out of taking that last chemo. I knew in my heart and mind that he was NOT strong enough to undergo chemo at that point. He may have been still here with me if he’d not gone through that last chemo 5 – FU, it was too tough on his already ravaged body.

Margaret