New forum _ Liver Transplant

[Angel]

  I haven't been to this site for awhile and am sooooo happy to read this NEW Forum  It has really made my day since I have never been able to do Tx...I am not on a list yet..... I should be going down that road in the near future... and am looking forward to it since it is my only option. I have one million questions going thru my mind I don't know where to start.... It really gives me HOPE to read that someone has gone thru the process and doing well and HAVING a life  Surrounding ones self with positive people makes all the difference in the world!!!! Has anyone ever been told this? My Alfa-Pheto Protien tests have been running high (cancer) my Gastro Doc tell's me not to worry that the Hep C makes my numbers "go crazy"..... I have done a ton of reading and have not found anthing reguardin "numbers going crazy"    I also  have went to USC site and I'm really interested.....I am from So Calif.(in the North now) They have two hospitals here, UC Davis and Calif. of Pacific in San Fran. I'm getting as much info as I can ahead of time ..... It keeps me positive and out of trouble    It is great to be back and see that much of the same folks are around and good to see the new folks. I thank You all for this great site.....  Be back soon...Angel

[hanklive39]

Hi Angel!

I'm glad that the info found here has helped you out so far...
As far as the Alfa Pheta protein count being high is concerned, your doctor is telling you the truth with respect to the count being high as a result of the Hep-C viral load and other factors such as the amount of cellular damage from the virus itself (cirrohsis).

If it gets too high, then you'll probably be moved up on the list because of the increasing risk that the damage on the cellular level starts to metastisize into hepatocellular Carcinoma, a form of liver cancer.

Now do'nt worry because, if your doctor is monitoring this count on a regular basis then, he'll take the appropriate actions in order to prevent that from occurring!

I went through the same things that you're going through and as I look back, I was terrified at the prospect of having to wait, the possibility that the virus would cause my hepatocytes, liver cells to metastisize into Hepatocellular cancer and that I would be removed from the transplant waiting list as a result, and die before they found a liver for me... All of these fears were unfounded because, one day I got the call of a lifetime, and the rest is history!!!

I just passed another anniversary making it NINE YEARS and counting!!!
So if there's anything that is within my capability, I can do to help you in your time of waiting to recieve the gift of life, I'll try my best to help answer any questions that you may have because, it is better to go through this with others than alone!!!

Dios te Bendigas = May God Bless you!!!
If you need to send me apersonal message please  do'nt hesitate do do so... I may not get back to you right away but I'll try my best to do so by the following day.

Respectfully,
Hanklive39 Lives for Today and Tomorrow!!!

[robin]

Angel...I run a high AFP also and I've been told it's really not a concern until it gets over 300 though some places use an even higher number. They monitor my liver with CT's with contrast...was doing it every 6 months but have changed doctors several times due to insurance and haven't had one in about a year. Your AFP will also run high in pregnancy. Good luck on your TP work-up...don't expect things to happen overnight...it took about a year to finish all the testing they required at the center I'm listed at now but plan on changing...hopefully in the near future when the one in my state gets their "stats" complete for Medicare payment...Keep your spirits high...robin

[Angel]

 Hi Hank,  Thanks for the reply...I will send a personal message if need be but first I have to learn this new forum    so I need to find my way around, again ! I'm not exactly "computer savy" but I alway's manage to get from one point to the other.... I'm not sure how to send a personal message so I may need to do a dry run first.....I agree with you it makes a big difference talking with someone who has been there and went thru the same ordeal makes me more comfortable to ask questions, even if it sounds silly. I had mispelled Alfa Feto Protein the last go round....my Doc's are doing lab work every three months with ultra sound.... I had MRI with contrast done and nothing showed up...Robin also mentioned the numbers can go as high as 300...sounds like she is being monitored in a similar way.While I'm learning my way around I will make a list of questions, don't worry I won't bombard you with all of it..... I need to find out how to respond to Robins reply       I will be in touch and again I thak you for the info...... have a great evening... Angel

[Helen]

Hi Angel and welcome back. 

 Hanks been there and done that so he's very knowledgable about all of this and can probably be a great source of info for you along with Robin. Im glad you found your way back.

 As for personal messages, if you want to send one just click on the persons name and it will take you to thier profile, then scroll down and you will see at the bottom "send this person a personal message" click that on and it will be self explanatory, but if you need any help just give me a holler. 

 Take care and hope to see you back soon, Helen

[robin]

Angel..you will find Hank is a wealth of information (but he has this thing about U of Pitt. and brags on it all the time...think he is on their payroll {wink...@Hank}. I've found no matter how much you "know" there is always a lot to be learned. Patience and a positive attitude will help you the most.  Keep your spirits high...robin 

[robin]

I received an e-mail from a member who I apparently angered by my posting here so I want to offer a public apology and to say...I'm out of here. I don't need anger directed at me. I enjoyed my time here and wish you all the best...Keep your spirits high...robin

[Helen]

Robin,
 Please dont let someones misdirected anger make you leave, you are very much needed and
welcome here. I have never seen you post anything but positive messages.
 I will PM you.

  Helen

[linda]

((((((robin))))))  PLEASE DON'T LEAVE!!!!!!!   your love and compassion is needed here.  you give so much to this board.....encouragement, hope, and valuable input and  positive feedback. ~~linda~~

[Angel]

Robin, I don't know what happened but please don't leave !!!!!!!!! Who ever sent the e mail must have been having a really bad day....... things always work out in the end......Take care and I hope to see you around..... Angel

[robin]

After a few e-mail discussions, I have decided that maybe things were a misunderstanding. I will be more cautious in what I post because goodness knows...no one needs negativity in their life. Thank you (and you know who you are) for helping me through this because I do care about this place and this thread is important because I'm in the learning process too. Maybe a couple steps down the road further than Angel has traveled but not near as far as other's in the forum who have been transplanted. Like I said...there is always something to learn...regardless of how much you know....and I take this as another learning experience. Keep your spirits high...robin

[willy]

First...... I'm happy to see you back Angel.  It's been a while but I'm happy to see you back and very pleased that you find this new forum useful to you. 

I'm also happy to see that Robin will be sticking around.  I've read her posts elsewhere and have always found her to be a great source of information and kindness.  If you read all through this whole bulletin board you'll find that most people come here to help and to be helped.  Even those people that are needing the help provide assistance by simply asking the question.  We all get the benefit of being able to read the answers from a group of folks with experience and knowledge.

This is especially true in this forum.  I read the posts and am impressed with how much you give of yourselves to others you don't know.  There are so few people willing and able to provide experience and insight about information about end stage liver disease or transplant information. 

I just want to thank you all for contributing to this forum.  Unfortunately, it will likely become more and more important to many of us as we age and our HCV progresses.  Until that day when there is a cure...... whatever you are able to provide for information to others that may need this forum will be appreciated by our membership and to the many others who are in need and also grateful to find the resource or the company of others of their kind.  (ha ha...... I think I may have about three sentances in my last one.....  I may have to come back and unglue all those prepositional phrases strung together.   )

later......

Willy

[robin]

But Willy...you left no dangling participles. Keep your spirits high...robin

[linda]

    robin, i'm glad willy left no dangling participles!!!    ~~linda~~