Should we let Narure run its course?????????

New Topic Post Reply Printable Version
68 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/2/2008 10:31 AM (GMT -7)   
Hello all,
  This  is our  1st post. Id  like  allo to know  that Im a Radiology Technologist...who has  worked in Interventional Radiology  for  the  past  20 yrs. Though  Ive  performed hundreds  of Paracentisis, Liver Biopsies, Biliary Dranages...etc......And  have  a  good  working  knowledge of ESLD  and ESRD..... Things  change  when it comes   home to bed  with you.......Me  and  my wife  are  both 56 yrs old........We both  are old  rock an rollers  and  partied  most all  our  marriage.....Cindy was diag  with Hep B in 1986  an  with  C in 2003......... Never  had  it  treated.......I said  Cindy  I  had  Hep B  in 1970.......Im  fine with  no treatment  each  yr  my  LP  looks  fine........Well not  for  her........7 days  ago   she presented  with  an Ascitic  Abdomen an  after  a CT we drained 6200 ml  of  fluid....then  labs  showed  her hemoglobin down  to 6.0.....had  to transfuse  2 units  of  blood.......Then  to  the  Gastroenterologist....we  hoped hed  change  her  meds  an  manage her ascites.........Instead  he  says/////////There is  nothing  I can  do for  you now  YOUR LIVER HAS FAILED..... very  shocking. he  increased  her  diuretics  an  is  setting  her  up for  a Liver Transplant interview at UNC in Chapel Hill,NC Hes  gonna  do  an Upper  EGD  an  band  varioces  if  he  sees  any   he says  this  is gotta be done anyways.....  Heres  the  question?????????At our age  should  we  do  this    what  Ive  read  says  if  we  start now    itll prob  be  3 to 4 yrs  before  she  gets liver......shell be  59 or  60...... Wed  appreciate any comments.........Wayne  an Cindy

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 11/2/2008 11:27 AM (GMT -7)   
Hi, windhover. I'm from a different forum, but I saw your note and just had to comment. As a 62 year-old woman with chronic disease, I can tell you I wouldn't give up the last three years or a day of my life for anything. If your wife decides living with her disease is too painful or difficult, that's one thing. But never, ever give up because of age. I retired earlier this year, and I'm happier now than I've ever been in my life!

Good luck to both you and your wife.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/2/2008 11:46 AM (GMT -7)   
Thanks Judy,
All is just sinking in at this point and go through with the Transplant Interview process.......but my god.thats gonna cost thousands just with all the diagnostic tests that UNC has to run...And this is just to see if shes a candidate for getting on the list. Our daughter has already asked to be a living donor.....But you have to be accepted on the National list before UNC will accept or consider doing a partial liver transplant...........OMG were just starting a long road of Dr"s an tests ..........Shes been trying for SS disability for the past 2 years over SOB....not being able to breathe with exercise...whe thought it was her heart....Now it looks like it was ascities the whole time......As her breathing is much much improved after the paracentisis.........Dr's wrong Diagnoses.....Bahh.......

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/2/2008 1:25 PM (GMT -7)   
Hello Wayne and Sue and welcome to HealingWell. You'll find that we are a very compassionate group.  There's a lot of members here that have a lot of knowledge about the liver diseases.    Sorry that Sue has this.  This is some awful disease.   She is too young to through in the towel.   I am only a couple of years behind you both but I would fight like no ones business to get on the list.     It's not easy.... but it is definitely worth trying for.   For most transplant patients once they get a new liver their life really turns around.   Yes there's a big IF she makes the list............but you know that death is certain if she doesn't even try.  Get her referred to a Hepatologist.   They are the experts with the liver.  GI doctors are not nearly as educated in it and all the ones that I have met aren't nearly as compassionate either.  
 
 
 
Good luck..........thoughts and prayers....   
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/2/2008 1:44 PM (GMT -7)   

Wayne and Cindy, welcome to the forum!  I agree completely with what PinkGrandma has said.  I was diagnosed with hep C in '93 and treatments at that time did not work for me--actually had to quit before they had a chance, due to very low white counts.  At any rate, I developed cirrhosis and liver cancer--but I'm still here at age 65.  I lost most of my liver to save my life, but have never been bad enough to need a transplant.  I went to Mayo Jacksonville for my care (still do.)

It sounds as though your hep B was thrown off by your own immune system, though you will still test positive for B.  I had the same experience.  As you said, your wife was not so lucky.

Chapel Hill is excellent.  Does your wife have insurance?  If not, she may be able to get Medicaid now, and I suggest she file again for SSI/SSD, based on recent developments.  I'm fairly certain that Medicaid will pay for a transplant.

You will get a lot of info and support here.  So please continue to post and let us know how things are going, or if you have any questions that we may be able to answer.



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/2/2008 3:13 PM (GMT -7)   
Were faxing every med record we get to our SS/DD laywer as soon as we get em............. laywer says we may get DD much faster now that shes been refered for a Liver Transplant

windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/2/2008 3:18 PM (GMT -7)   
Any one her had exp with DD after being sent for transplant?

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 11/2/2008 3:19 PM (GMT -7)   

If you mean give up  - never! A transplant can be a fresh start to several years of happy healthy living! Never give up!

Best,

Cary

 


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/2/2008 3:26 PM (GMT -7)   
What do you mean by several years of happy healthy living/?....Have you experinced this?.... I we go thru all this red tape surg an reduced quality of life to get a liver we want more than "several yrs"..........pls be more explicit if ya can

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/2/2008 4:42 PM (GMT -7)   
Wayne, no body can say how long the new liver will last.........but I myself met a 13 year post transplant patient. And she was still going strong. It all depends on how healthy the liver is when it's transplanted along with how healthy the person is .......meaning if they have other health issues besides the bad liver. And how well the patient takes care of themselves after they get the new liver. Read through our older posts........there's a lot if information.

Finances is a worry.........but it should not be the deciding factor......Worry about that when you get to that bridge.

Thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


smileysue
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 11/2/2008 5:23 PM (GMT -7)   

Wayne and Cindy,

I hope you don't give up. My mom was just diagnosed with cirrhosis. I would be devastated if she gave up. Even if it were only a few years after a transplant, it seems worth it to have your mom around.

Susan


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/2/2008 6:27 PM (GMT -7)   
Welcome to the forum Wayne and Cindy. I agree with everyone else. You should never give up. Have you read any of LaBunna's posts? Her husband is the most recent to receive a transplant (in August I believe), and he is already doing well. I will keep you both in my prayers.
Butterflythree
 
There is always hope!


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 11/2/2008 8:42 PM (GMT -7)   
Don't give up. I met a farmer at the transplant unit on one visit who had his transplant over 20 years ago and was still doing good and had a normal life. Be ready for the rollercoaster ride of your lives, but it will be worth it in the end, I hope. There is so many happy endings in the transplant world. Just don't give up.
Helen

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/2/2008 9:51 PM (GMT -7)   

Wayne, I am not familiar with the abbreviation DD.  What does it mean?  I only know of SSI and SSD, the latter being what one gets if disabled based on work record.

Please do not give up on your wife!  She is still young from where I stand.  Yes, there will be a lot of red tape and ups and downs on the transplant list, but isn't her life worth it?  There are no guarantees in life, but at least give her the chance to live longer than she would otherwise.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/2/2008 9:54 PM (GMT -7)   

Wayne and Cindy

Please don't give up.  My husband was just listed in March at Vanderbilt.  He turned 59 that same month.  His Dr. at Vanderbilt told us he is still very young.  Your wife is younger then he is.  NEVER give up.  Also we met someone at one of our appointments that got his new liver 20 yrs ago. He told us to "Do every thing they tell you" and you will be fine.    They didn't know as much then as they do now.  You two still have so much living to do.  Also the transplant centers have financial department and they did all the paper work for us.  We didn't have to do any of that.  So go for it!!

JoAnn


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 11/3/2008 3:36 AM (GMT -7)   
Wayne and Cindy

Just wanted to add my welcome to the forum and to say I agree with the group with the philosophy of not giving up. I was diagnosised with cirrhosis in January of this year and would love to be on a transplant list at this point. Good luck on your evaluation and keep us posted.

Lucy

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/3/2008 8:37 PM (GMT -7)   
Wayne and Cindy-

First of all, welcome to the forum!! I wanted to encourage you to NEVER give up!! My husband has HepC/Cirrhosis of the liver and is currently on the transplant list. He's 47. Also, his older brother had a liver transplant 18 years ago, and he's still doing REALLY well!! So, just know that there are success stories out there. This horrible disease affects everyone differently, but what I can tell you is that if you do not pursue it, just deteriorating from this disease is horrible. Do get in w/ a Hepatoligist.....the transplant team at UNC/CHapel Hill should have one on staff they can refer you to. You guys keep fighting the good fight and do not give up!

windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/6/2008 5:37 PM (GMT -7)   
Thanks  all  for  you advice..I have  one  question....after  her  1st  Paracentisis  on 10/28/08   Aldectone  was  added  to  her  meds.....Shes  still full of  fluid.......We  only  drained  6 liters  that time....... should  we  wait   an see if  the  aldectone    works  or  do another  Paracentisis.........What  I need  to  know  is     if  she  breathe  ok  an dosent  hurt  will  holdind  fluid  hurt  you........? Perhaps  we  just wait till shes  short  of  breath  for  the next Paracentis..........?
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/6/2008 6:41 PM (GMT -7)   
Wayne, I'm not sure how often a paracentesis is done. My husband hasn't had to have this done. But he had terrible edema in his legs and was prescibed Aldactone along with the Lasix that he had already been taking and it took it about a week or so before we started noticing a difference. He is now back to taking only the Lasix. I continue to pray for you both.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/6/2008 7:43 PM (GMT -7)   

Wayne

My husband was drained as often as needed.  By that I mean if he was hurting or couldn' breath.  It took a year for them to get his meds right.  He hasn't been drained now since May.  All of last year her was being drained one to two times  week.  I hope that helps you.  I'm sure everyone is different but just do with the dr. say and make sure you have a liver specialist.  Keep up with all her blood work and learn about it.  I'm sure it won't be hard for you because you are in the business.  Hope this helps.  And trust me you will get tougher!!!

 

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/6/2008 10:13 PM (GMT -7)   

Wayne, is she also on Lasix?  Aldactone is also a mild diuretic, but mainly used to balance the potassium lost from Lasix.  If she is only on Aldactone, I think I would question that...and ask about Lasix, as well.  I had terrible ascites and edema, but never had paracentesis.  At times, I had "weeping" of fluid from my calves.  My breathing didn't get bad, and the doctors didn't seem as concerned about the fluid as I was.  It hurt my feet and calves something awful, so I would get someone to massage the fluid upwards and that would give me some temporary relief.  I have been on 80 mg of Lasix and 200 of Aldactone at the worst...but now am doing fine on 40 (and sometimes 20) and 100.

 



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll

Post Edited (hep93) : 11/8/2008 2:22:28 PM (GMT-7)


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/8/2008 7:24 AM (GMT -7)   
ATM shes on shes on 40 Laxix 40 Aldectone plus potasium an vasotec.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/8/2008 2:24 PM (GMT -7)   
I think her Aldactone should be higher.  Unless her potassium is seriously low, she probably doesn't need a supplement, as the Aldactone balances the potassium lost from Lasix.  At least, that's been my experience.

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/8/2008 2:56 PM (GMT -7)   
I agree  I think  her  lasix  should  be  80  an  her  aldectone  at least 100.........She  already  gained  7 lbs  since   the paracentisis  on the  28th.we  probbabally  will need another paracentisis on  the  12th  when  se  see  the doctor.........though  non  medical  we  now  judge her  ascites   by the  didstance  her  belly is  from the  steering  wheel in the  car......After  the  1st  Paracentisis  it was  2 inches  away.....now  it touches  the  wheel  again......I hope  shes  not  got  refractory  ascites..................

windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 11/8/2008 8:52 PM (GMT -7)   
Update calle d the doc tonight to try an get dosage increased he increased the Aldectone to 150 and wants her in monday instead of wed This is good.......
New Topic Post Reply Printable Version
68 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Sunday, December 11, 2016 1:04 AM (GMT -7)
There are a total of 2,736,238 posts in 301,363 threads.
View Active Threads


Who's Online
This forum has 151453 registered members. Please welcome our newest member, LvGuy1.
138 Guest(s), 2 Registered Member(s) are currently online.  Details
bluelyme, Girlie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer