Liver Transplant

[robsue12]

Hi,
I did not know that I had alpha one until I had accute liver failure in March of 2005 in October 28, 2005 they added my name to the transplant list and I received my new liver on October 30, 2002. If I had not received my liver they would have taken me off life support on 2 Nov. The reason that I share this is because I had never hear of Alpha 1 until my transplant. Since I have recovered, I have so many questions about alpha 1. Where to start? Will I have a recurrance of liver failure? Where will it strike next? Should I be afraid of lung problems? What questions should I be asking my doctors? Any help would be appreciated more that you know.
Thanks
Susan

Susan

[jenchar]

Hello Susan,

Wow, that is quite a story. You are a brave, brave Alpha. I'm so happy you received your gift of life just in time. I'd be happy to help answer some of your questions, but please know that I'm not a medical expert. Okay?

I don't know what your doctor told you about Alpha-1. So here goes...Alpha-1 is a liver genetic disorder. In very simple terms, your body misfolded the Alpha-1 proteins inside your liver. Since those proteins got trapped inside your liver's cells, cirrhosis occured and thus resulted in your liver failure. With a liver transplant, your new liver does not have Alpha-1. It correctly folds the Alpha-1 protein and then allows the Alpha-1 to leave the liver and enter the bloodstream. Since the Alpha-1 protein is now available in the bloodstream, it can enter your lungs and do its job in helping to combat the bad stuff that can damage your lungs.

So, in essence, with a liver transplant, you no longer have Alpha-1 Antitrypsin Deficiency. Your new liver does not have the genetic disorder Alpha-1. Please remember that every cell in your body says that you have Alpha-1 except for your new liver. If you had a child or already have children, you can pass on the Alpha-1 gene to your offspring.

Having received a liver transplant, you essentially exchanged one problem for another. It saved your life though, and I haven't met one person who received a gift of life that wasn't forever grateful to his/her donor. You now have to take immunosuppressant drugs and be very careful about catching illnesses.

You asked if you'll get a recurrance of liver failure. Well, I'm not an expert in transplanted livers. I don't know if that will happen. My advice is to ask your hepatologist or transplant coordinator.

You also asked if you should be afraid of the lung problems. Well, I don't know what level of lung damage you might have had before transplant. You could ask your doctor to be sure. What I do know is that your newly transplanted liver is making Alpha-1 appropriately and shouldn't be causing you further lung damage. Again, I'm not a medical expert so please ask your doctor to be sure.

In the meantime, please read the information on our web site to give you further information about Alpha-1:

http://www.alpha1.org/newlyDiag/whatIs.asp
http://www.alpha1.org/education/liver.asp

Thanks again for sharing your story. Please come back and ask more questions if you need to.

Jen, mom of Grace & Meghan, ZZ Alphas
http://alphagirls.blogspot.com

Alpha-1 Association Bulletin Board Administrator

[robsue12]

Thank you so much for the information. I have read all of the information I can find on this and a couple of other web sites. This was very educational.

Your right, I am very greatful to my donor, a 10 yr old child! His family was very unselfish in their donation. They have not responded to our letter of thanks, but that's ok too.

My original liver specialist did not test for Alpha 1. He did not do boold tes and in the 7 months that I saw him did not do a biopsy. It was not until after I actually had my transplant that they found I had Alpha 1 antitripsin deficinecy. I seek information daily now that I know I have it. Or had it I am so confused. Your information was very insightful. Thank you very much!

Susan

[jenchar]

Hi again,

Just to clarify from my lay person's view point... With your newly transplanted liver, you no longer have the Alpha-1 deficiency. But technically, on a genetic-level, you are still someone with Alpha-1. Your new liver stopped the deficiency of Alpha-1 in your body. I know it is confusing stuff, but the good news is that your new liver cured your Alpha-1.

Anyway, I'm sorry our original liver doctor didn't think to check for Alpha-1. That must have been disappointing for you. I've met other liver-affected Grrrrr!!! It is sad that such a misdiagnosis can occur in this day and age when simple Alpha-1 blood tests are easily accessible.

Wow! Your donor keeps living inside of you...what a beautiful gift and tribute to that child. It gives me chills to think about it. What a brave, brave donor family!

Thanks again for sharing your story!

Jen, mom of Grace & Meghan, ZZ Alphas
http://alphagirls.blogspot.com

Alpha-1 Association Bulletin Board Administrator

[robsue12]

Hey,
Thank you for taking the time to respond to my questions. It is very hard to get past the fact that the original Doctor did not even think to test for alpha1. He was suspose to be one of the top liver doctors in the state. So may people are unaware of alpha1, I talk to people everyday and the response is the same, "What is Alpha1". I hate to go over it again and again but I feel it's important to share the knowledge I have about the alpha1.

I thank my donor family everyday, even though they don't even know that I do.
Susan

Susan

[dlk77]

Waiting on the UNOS list is such a long and tedious process. And at one point it hits you, you are praying for someone else to die, so you or your loved one can live. It seems kind off topsy turvy and so counter intuitive. My mom was on the transplant list form 2002 until February 8, 2008. Our donor was 17 years old and collapsed during basketball practice in his gym. We actually didn't get that info from gift of life, Unos or Henry Ford (our transplant hospital in Detroit) I was by trade a newspaper person (Newspapers In Education if you have ever heard of it). As such I have a wide connection of friends at various news papers throughout the country. ONe of my friends in Ludington had seen my quick email post that it was happening, just as she was being told about a boy that collapsed in the gym at the school and they were putting him on life support long enough to get family in to say their goodbyes and wait for all the transplant teams. His timeline matched up with ours almost to the last minute that we knew it had to be him. So I put a happy ad in the towns paper as an open letter to the family of mom's liver donor, letting them know that we were greatful for the gift they had decided to give us as they said goodbye to their son.
Mom had NASH which brought on cirrhosis and the need for the new liver. No one tested mom for Alpha 1 either. The doctor looked at his clinical findings and said it was NASh they didn't need to go an farther. Which is why it's taken 2 years AFTER mom's transplant to get me tested and confirmed as an Alpha. OUr gastro doc said that testing her now would do no good becasue she has a liver that is doing what it's supposed to be doing.

In regards to the Alpha I'm getting used to those blank stare's. I actually told my friends who keep bugging me about it becasue they want to know what to do to help that I would have a info sheet designed for each one of them by the time my Chrsitmas Break was done. It's so hard to educate people on thigns that they don't even have a clue that it was out there. I agree there needs to be more awarness for Alpha's. I think all these blog, message boards are great, but what would really help is if we could find a way to bring Alpha 1 into the national spot light and get people asking questions and putting money toward research.

Good luck as you talk with your doctor