i have finally been put on the british columbia transplant list

I have just received my pager, and been told the doctors have given me the okay for the transplant list. It can buzz at any time. I am so happy and scared beyond belief. Some of the facts about complications that can happen. I am wonder if my body rejects the liver and won't work, how long can I stay alive for?

BCG: Great news. Since there is no treatment for those with advanced liver disease bar transplant....this can be, indeed, the gift of life!

All the old posts are available if you page back through the pages. Connie has documented her process step by step over the past 2 years.

My partner Mike was transplanted in May 2011 and is coming up on his 2 year mark. He is not young or well at this point ,but he is alive and doing as well as can be expected for a person who had a terminal disease and got a second chance.

Life after transplant seems to take a few paths...for those who have no other underlying disease, they do quite well. We met a man at the clinic recently who had been 16 years post transplant! WOW.

Those who had alcoholic cirrhosis who remain sober generally live a long time as well.

Those with untreated Hep C may have to face treatment again. After transplant, the blood disease Hep C starts to work on the new liver in most cases.

In Mike's case ,post transplant his Viral Load is over 7Million and his MELD score is something around 12! And he has underlying cardiac and renal problems....so who knows. Today is today and he is here. He reads and enjoys his family and seems pretty content with that. He had alcoholic cirrhosis, Hep C, and hepatocellular carcinoma, so it is a miracle he has come this far.

Re rejecting the new liver -- the docs have that pretty much under control -- the meds are strong and sometimes hard to take but the anti-rejection meds work pretty well. IN the second year, Mike had on acute rejection episode and they fiddled with his meds and he is okay again. Some others have had the same, but the docs are right on top of things.

Don't think you have the transplant and wander off to your life. You have check ups all the time. Mike sees transplant team every 2-4 months depending on how he is doing at the time.

He sees cardiology and oncology 3 times a year. At first labs were twice a week, then they eased off. But with his underlying problems, he is still going 2x a month for labs....some are way less often.

Good luck, and congrats on listing. Did they manage your expectations about how long on the list waiting? Once the eval was complete, Mike was "on the list waiting" from Feb - April. It seemed like forever and he was hospitalized several times.

Keep us posted, we can walk this path with you,

Carol

Congratulations, BC! Don't know if you are lucky to be in BC. Most places in the US the wait is far less than a year. I waited 3 mos.

If you should have a rejection episode, they will simply increase the anti-rejection meds.

Hugs,
Connie

BC, yes, you can drink coffee, although green tea would be better for you. I have no restrictions on eating or drinking (except alcohol), although I can't consume grapefruit or its juice as it reduces effectiveness of the Prograf (antirejection med.)

I suspect the reason the waits are so long there is due to socialized medicine. I've heard that from Great Britain and other countries overseas. Long waits for appts.

I've not had a problem financially, in terms of medical care. My Medicare has covered most everything, including my Prograf. I have about a $5 co-pay each month.. I have a drug plan for other meds, like BP med and diuretic, whereby my co-pay is $2.65/mo.

Hugs,
Connie

There are stats on the BC Transplant website. That showed the median wait for a liver transplant in BC in 2011 was 1.8 months.

Not sure why doc said a year unless its due to blood group or because that is the maximum you are likely to wait.

Good luck and hope you don't wait too long.

Ann

Ann, not sure about BC ,but in the states they depend a lot on MELD score. Model of End Stage Liver Disease.
You said you are hovering around 16-19, I think.

Depending on the region, they are transplanting in some southern states in the low to mid 20s. Mike was a 24 the day of his surgery. He was a sick dude.

In California and AZ, due to the high need for livers, the patients may be in the 30s before it is their "turn."

Of course the A neg may work for you. If one comes in it would be likely you would not have too much competition for it!

I found the site you are likely talking about: http://www.transplant.bc.ca/stats_faqs_main.htm

And they say the wait times are short. I wonder if this is regardless of MELD score?

Things look very positive. Our experience on this website is that those patients who are the healthiest going into the surgery do the best afterwards. Some are so near death's door they take some extra time...dialysis or physical therapy.

Ask doc about typical hospital stay, how often you will have to come in for post transplant check ups and labs (Mike had to drive 85 miles each way, 2 or 3 times a week at first...UGH).

Let us know how it is going,

Hugs,

Carol

Post Edited By Moderator (hep93) : 3/7/2013 4:15:47 PM (GMT-7)

BC, I was speaking of meds post transplant. I was already taking some of them, and paying for them with my Part D drug plan...$2.65 ea. for most, as mentioned.

Watch your sugar intake. Keep an eye on your sucrose levels when labs are done. They should not be over 100. After transplant, you may experience steroid induced diabetes from the prednisone. By around the 6th day inpatient, my sugar was in the normal range. However, I still went home with a testing kit and had to prick my finger and check levels every time before I ate anything. I did that for about a week or so after being discharged to home. I was extremely happy to see it normalize. During this time frame, I didn't eat any desserts or sugary snacks

Hugs,
Connie

BC that's always great news!!! prayin for a quick transplant.. few complications... hang around... we're a great bunch of peeps to know!!!   Sandia

Please keep posting. Also a Canadian, it is good to get information from our perspective. It seems every country does things just a tiny bit differently.

I was taken off the list because my meld score stayed between 9-11. They said it must be between 27-28 to qualify. Otherwise I need to be very ill. I have about 1-2 good days a week and must go into the hospital for blood work and X-Rays every 6 months. We have a 600 mile drive one way and gas is very expensive.We cannot aford to fly all the time .I can not drive very well any more so my husband has to do the driving. We are both quite tired of all this but have no other choice We have been doing this for eight years.At that time they gave me 2-5 years. posibally 48 hours. Yet here I am 8 years later I guess that is a blessing
lavendar