Update on my wife

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Charlie92
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Date Joined Jul 2009
Total Posts : 192
   Posted 5/4/2010 9:06 AM (GMT -7)   
confused  

I haven’t posted in a while, so many of you may not be familiar with our problems. My wife is suffering from ESLD due to auto immune hepatitis, which developed into primary biliary cirrhosis. She was on a transplant list (her last MELD score was 13), but due to chronic infections in her left ear, she was deactivated last fall until she gets the ear repaired.  She was also diagnosed with “Sjogrens syndrome” last year by her ENT  (another auto immune disorder) which causes dry eyes and mouth. She had surgery on her ear  two weeks ago and it appears to be a success, however the Sjogrens disease has started to make her life completely miserable. Her dry mouth has caused tooth decay, as she had one root canal last month, and after a dentist visit  yesterday, we have found out that she has 4 more teeth that may have dying roots. Her eyes are so dry, she can hardly keep them open. She saw an Opthamologist last week who prescribed Restatis drops, but they aren’t giving her any relief. She has an appointment this Thursday for him to plug her tear ducts in hopes of keeping more moisture in her eyes. Being her primary care-giver, I am so confused  I just don’t know what to do. We have appointments tomorrow for her to have her yearly transplant testing done at a local hospital. I am so afraid that her Hepatologist is going to keep her off the list due to the tooth decay and other Sjogrens symptoms. I haven’t seen any other posts on this list regarding similar problems, and am wondering if anyone else is going through the torture we are. I know this is a long post, but I just needed to vent, as I am at my wits end.

 

Charlie


DDMom
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Date Joined Apr 2010
Total Posts : 195
   Posted 5/4/2010 10:36 AM (GMT -7)   
Hi Charlie,

I am new to the list and I'm also a caregiver for my husband who is also End stage liver disease with a meld score of 8. He has been doing pretty good till he had this mouth problem which we went from doctor to doctor trying to figure out what it was. It started out looking like canker sores and then is whole inside of his mouth started looking like it was peeling off. Very painful and wasn't eating or couldn't eat it hurt to much. We finally got to a dermatologist who said it was Linchen planus and it is more than likely from Hep C and it's and auto immune disorder. He is also on the transplant list and his Hepatologist saw it and didn't act like it affected his listing at all. He is also diabetic and I was worried about him getting kicked off the list because his sugar levels were out of control. They just told us to get the sugars controlled. So at this point he has them controlled and has lost 20 pounds. I know as a caregiver it is very frustrating because you want to be up beat but at the same time, I just don't understand everything myself. This forum has been great, I've learned a lot and I feel like I have people who truly understand. Mine and my husbands extended families have been nothing but royal pains in the rear as far as understanding goes. They just don't get it. One relative asked my husband can you fix my roof and I almost lost it. He his home sick and he has encephalopathy and he doesn't even mow his own yard and you want him to do what?? He sleeps most the time and I usually get stuck doing a lot because of his situation that I wouldn't normally do. That's just the way it is and me and my kids get that but others don't. So I am very thankful for this forum. I don't usually say much but I have gotten a lot of good information from everyone's post. The auto immune disorders and the personality changes have been a real struggle for me but I take it one day at a time.

DDMom

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/4/2010 11:37 AM (GMT -7)   

Hi DDmom,

 

I can certainly understand your frustrations. Last fall my wife also developed lesions on both sides of her tongue, and was in a lot of pain. We went from an Ear/Nose/Throat Specialist to a Dentist, and then to an Oral surgeon. The surgeon took biopsies that were benign, and then surgically closed the lesions. As soon as the stitches dissolved, they opened up again. This all started in October, and her tongue has just now healed. She  also developed Type 1 diabetes last year when she started taking hydrocortisone, and is now twice a day insulin dependant. We now has an additional doctor thrown into the mix, an Endocronologist, however her A1C the last time it was checked was 5.6. I’m told they won’t transplant if the A1C is 8 or higher. Luckily her ammonia is under control with “Kristilose”  and she hasn’t had any fluid build-up in a year. Her main complaint is fatigue, dry mouth, and dry eyes, and an occasional bout of nausea. Her regular Hepatologist, who was a very nice and caring lady had to take an extended family medical leave, and the one she is seeing now has the bedside manner of a dead fish. He may be competent, but is very abrupt, and doesn’t seem to have the compassion as her other doctor had. She went through the testing process in March with another hospital here in the Dallas/Fort Worth area, and we are waiting for her case to be presented to the transplant committee. If they select her as a patient, she will be dual listed in both cities, as opposed to only Dallas now. Like you, I have been reading posts from this site for about a year now, and have gotten tons of useful information. When I think I can take no more, I read of someone who is having a much more difficult time than we are, and count our blessings. Take care and thanks for the post.

 

Charlie


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 5/4/2010 2:32 PM (GMT -7)   
i would recommend if her hepatoligist has a manner of a deadfish, finding one that is more compatible with you. sometimes competent just isnt enough.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 5/4/2010 6:58 PM (GMT -7)   
Welcome back Charlie,  sorry that you are at your wits end.  You know you have lots of company in that dept.  
I have read in other forums that have autoimmune diseases that it is very common once you develop one that you can develop others.  A damaged liver and the treatments for it, also causes a host of different ailments.   It's just one tough balancing act with everything.......Food, meds, and liquids.  
Glad you are trying for a dual listing.......better the chances of getting a transplant.  Each transplant center has their own critiera for listing too.  So maybe at the Dallas/Fort Worth area hospital won't be so stringent.  
Is the dead fish part of the transplant team?  Maybe you can get a different one who's on the team.
And you know you are welcome to come here and vent anytime. That's what we are all here for. 
Take care........and hang in there.   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.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 5/4/2010 8:14 PM (GMT -7)   
Deadfish, Had one.... fired him of course after I found a better one. I dont mean just stop going had to tell him he was fired because I could and enjoyed the chuckle when I was done
Sue
When I started counting my blessings my whole world turned around.


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/5/2010 8:07 AM (GMT -7)   
Charlie,
We have a hepatologist now that we've had for years and he is wonderful and nice and helpful one time we visit him and the next he's grouchy and flat difficult to deal with. It is so frustrating because you want someone who knows his stuff but you don't want to deal with his bad bed side manner. We were told by his coordinator to try and ignore his bad behavior because it's not personal it's just he is busy and behind and the staff knows he cares grately for his patients.
That's great your wife's A1C is that low, we are at 6.5 and hopefully it will continue to go down. My husband just found out he was diabetic this last year and also the auto Immune so it's taking some time for us to adjust but I think were on the right track now. That's also great with being listed at two hospitals you never know you might switch over to the other one if the dead fish doesn't get any better. We've dealt with staff leaving and new doctor's coming in all the time so hopefully the dead fish will get better or maybe a new doctor will take his place. I feel it's hard enough to deal with everything and the changes then have to deal with one persons bad professional skills. My husband was listed at one hospital and then his hepatologist moved to another hospital and he moved with him and had to get listed at the new hospital. It all worked out fine and yes there is a big difference. The new hospital is stricked on weight where the other one wasn't. We felt close to the people at the old hospital and the coordinator and it's taken 4 years to feel connected to the new hospital and staff but things are going good now. It's been my experience that if you have a good coordinator things go alot better as the doctors really don't have much time and personally I think the coordinators and staff do most of the work.

Have a great day!!
DDMom

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/6/2010 6:51 AM (GMT -7)   
We got wonderful news yesterday afternoon. Baylor Medical Center has accepted my wife as a transplant patient. I also asked if we could change to the hepatologist that she saw during the evaluation process, and the nurse coordinator said it would be fine, that it would be to both of our advantage if she is being seen by their hep doc. I just spoke with her insurance RN case manager, and we are going to fire the other hospital, along with their hep doc. She will now be listed in both Dallas and Fort Worth, the advantage being that both cities are in different regions for donors. In theory, this will give her a much better chance to receive a transplant once her MELD score goes up. Currently it is a 10, up from a 9 a few months ago. Now if we can just solve the dry eyes and mouth problem. I'm going to see if it might be that her current dosage of Aldactone (100 mg per day) and Lasix (40 mg per day) might be drying her out too much. She has an appointment today with the eye doc to plug her tear ducts, so maybe that provide her with a little more moisture in her eyes and some relief, as that is her chief complaint. Thanks for the replies, and I'll keep you posted. Wish us luck.

Charlie

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 5/6/2010 9:38 AM (GMT -7)   
Charlie, that is wonderful news, we are really excited for you guys. Good luck on your wife's appointment today!!

Do keep us updated,
DDMom

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 5/6/2010 12:49 PM (GMT -7)   
yeah   yeah yeah turn turn turn Excellent NEWS!!! Makes me heart feel good!! Sandi

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/6/2010 6:32 PM (GMT -7)   
  YaaaaaHoooooo yeah tongue smilewinkgrin turn .  Excellent Charlie.........on all counts.   And that includes throwing the dead fish to the cats.........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.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 5/6/2010 9:27 PM (GMT -7)   
PG I dont think the cats will like those kind of fish////lol Charlie I am happy for you to be heading in a good direction
Sue
When I started counting my blessings my whole world turned around.


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/8/2010 8:16 AM (GMT -7)   

She had her tear ducts plugged  Thursday, and it looks like that procedure along, with the Restasis may be working. She had a pretty good day yesterday without complaining about dry eyes. We will see how the weekend goes. Thanks for your continued support, and may God bless you all.

Charlie smilewinkgrin


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 5/8/2010 5:20 PM (GMT -7)   
tongue   turn yeah Thoughts and prayers with you... in hopes that things keep going well... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/9/2010 5:29 PM (GMT -7)   
Charlie, that's great news... that it seems to be working.   Hang in there........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 5/10/2010 9:51 PM (GMT -7)   

I returned home this evening from a week away, and just read this entire thread.  I got quite a giggle out of the "dead fish."  Charlie, I'm so glad that things are improving!  As you have discovered, liver disease is a roller coaster ride, so hang on!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/12/2010 11:08 AM (GMT -7)   
Yes you are so very right, what a ride it is. She has been fighting insomnia since the 1st of the year, until this week, now she is back to  sleeping all night and most of the day. She doesn't show any signs of encephalopathy, her vitals are good, no swelling in her abdomen, feet or legs, just extreme fatigue. We went out to eat yesterday evening after I got home from work and she actually seemed to enjoy herself and had a good time for a change.
 
I did find out yesterday from her new  hospital coordinator that the wait time she has accumulated while on the list at the previous hospital in Dallas will be transferred to the new hospital. I didn't know that "wait time" had any bearing on the pre-transplant patient, but I suppose it does in some way or other, otherwise she wouldn't have mentioned it. The next time I speak with her, I will try to remember to ask her to expain it. She goes to the new hospital in Fort Worth in the morning for blood-work, so hopefully if anything has drastically changed, we will be notified.
 
Thanks for your words of encouragement.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/12/2010 1:25 PM (GMT -7)   

Charlie, please do ask about the "wait time."  I wasn't aware that length of time waiting for a liver had any bearing on who gets transplants.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 5/12/2010 4:25 PM (GMT -7)   
I'd like to second what Connie said. I was in a transplant program for 5 years with a MELD score never exceeding 18. At MGH, the score to get listed is once you are over 20. Within a week, my score went to 24. Two days later I got the call and had a new liver that evening. Part of what went into my getting a transplant was having the right blood type and my size. I was specifically asked how much I weighed at the time and when I said 150, the doctor said that, I "was the right size" and put me ahead of two people ahead of me on the list. I am on a transplant forum and many of the people with "new" livers received them with greatly varying MELD scores and times on the list. Some people weren't aware they had liver problems, went into an ER and woke up with a transplant. It happens that people are offered a liver and they turn it down. When I came in to the hospital, the first thing they asked me was whether I wanted the liver available. I didn't think twice, but when it gets down to the crunch...
**David**

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 5/12/2010 8:42 PM (GMT -7)   

I think wait time is used when offering a B list organ....it is offered first to person with higher meld then if they refuse or are to sick for what is considered a higher risk organ it is then offerd to the next person down so if you have say 3 patients with same meld it is offered to the person listed the longest. That is how it was explained to us when we agreed to be considered for higher risk liver.

Sue


When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/12/2010 8:46 PM (GMT -7)   

Sue, thanks for the clarification.  That makes sense.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 5/13/2010 8:03 AM (GMT -7)   
Charlie....congrats! I think you made a wise choice getting w/ Baylor! We are listed with Baylor as well, but did not opt for the dual listing, so we are only listed in Dallas. Because of where we live (We are due north of Dallas, I just felt like post transplant it would be really tough on me (I know, selfish) to drive to Ft Worth for all of his after care appointments if he ended up being transplanted in Ft Worth vs Dallas. We have a small child so I am just trying to balance it all.  Right now, my hubby is inactive due to some additional problems he was having  (seizures, etc) and now I am in the process of getting all the records back to our hepatologist so we can get in and hopefully have him back on the list soon. I think you will be very pleased with the docs at Baylor as they have been absolutely wonderful for us!! With liver disease, it seems that is it not unusual for all kinds of other issues to arise. I know we have had our battles. You hang in there!

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 5/13/2010 12:19 PM (GMT -7)   
I took my wife for lab work this morning and asked her coordinator about "wait time." She said that it is really a tie breaker, that if two patients have the same MELD score when a donor liver becomes available  (assuming both met the size and blood type requirements), then the patient that had been on the list the longest would get the liver. My wife will have about a year of wait time to transfer.
 
The folks at Baylor have been just wonderful to us, and I couldn't be more certain that we made the right decision. Since we live in Fort Worth, I know it will be a real hassle to drive to Baylor Dallas, especially twice a week for the first month or so post-transplant, but I will do whatever I have to do to give her a new lease on life. I work in downtown Dallas, so I'm used to the traffic.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/13/2010 2:47 PM (GMT -7)   

Charlie, I agree:  Do what feels right and best for your wife and you.  As for the "wait time" criteria, I wonder what those odds are, that 2 people would have the same MELD at the same time at the same facility and both have the same blood and weight requirememts?  A million to one or more?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 5/13/2010 3:51 PM (GMT -7)   
Even if the MELD scores were identical, blood types the same, it's likely that other factors such as the surgeons belief that one patient might survive the operation better than the other, and the age(s) of the patients might well trump the time spent on the list. I'm sure there are other factors we're not aware of they take into consideration. The decision isn't made by a single person. **David**
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