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Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 8/5/2010 10:24 AM (GMT -7)   
I haven't posted in some time, but just thought I'd give you folks an update on my wife. She had labs done this past month and her MELD score has gone from 10 to 12. Mentally she is doing just fine, as the kristolose is doing it's job in keeping her ammonia level down. Her prozac has been increased from 20 to 40 mg's per day, and her depression has seemed to have vanished. Physically she says she has more energy and feels better than she has felt in over a year. Between her rheumatologist and eye doc, her Sjogren's syndrome symptoms (dry mouth and eyes) have finally been brought under control with medications. She has a new grandson to spoil, and just seems really content and happy for the first time since she got sick and had to quit working.
 
The downside is that she had her annual upper GI endoscope a couple of weeks ago, and the varcies in the upper part of her stomach are much larger than they were last year. Her gastro doc says they can't be banded, that if he bands one, then it will just put more pressure on the others. He says that a TIPS procedure may have to be considered eventually, however if done, it might pose a problem for the transplant surgeon. As expected, he cautioned her regarding GI bleeds and to call 911 immediately if she does start to bleed from either end, as it could be life-threatening.
 
I just hope and pray that she can remain on the transplant list, and eventually get a liver with a new lease on life.  Even though I don't post often, I make a point to catch up on the list at least once a week. Thanks again for you thoughts and prayers, as this list has certainly been a rock for me to lean and vent on when times seem their worse.
 
Charlie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/5/2010 11:10 AM (GMT -7)   

Charlie, it's so good to hear that your wife is doing much better!  Quite a difference from a few months ago!  I don't quite understand the doctor's reluctance to band the varices that are in danger of bursting, as I thought that's what they usually do.  However, I've had no personal experience in this area.  I hope your wife continues to do well.  I know how miserable she was there for awhile.

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 8/5/2010 12:22 PM (GMT -7)   

I also thought that banding prevented the veins from bursting, but like you I have a very limited knowledge of this and have no medical training. It may be that due to her having multiple bulging veins, banding is not an option.

She does have an appointment with her hepatologist in a few weeks, and if he hasn't already seen the pictures, I will take a copy for him to look at an give his opinion.

Charlie

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/5/2010 12:33 PM (GMT -7)   

Yes, I would think the hepatologist would know best.  Please let us know what he has to say about this, and also his opinion regarding TIPS for your wife.

Hugs,

Connie


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

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/5/2010 9:41 PM (GMT -7)   
Hi Charlie , good to hear from you again. I agree with Connie. Ask the Hepatologist about the banding and the tips procedure. My husband's GI had to band my husband I believe twice for esophageal varices . The Hepatologist advised him to do it. He was very reluctant about doing it. I think the risk of something going wrong scares them. They are afraid of malpractice lawsuits.
My husband's transplant team was the conductor of the orchestra. They directed any and all tests and procedures that needed to be done by his GI and PCP. And believe me, his GI doc did not like being told what to do by another physician. In fact we had to get a new PCP in the middle of his journey. His old PCP quit right when things started getting bad. He knew that it was going to be up to him and his office staff to order all the tests and procedures.

Take care.........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.

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 8/6/2010 8:36 AM (GMT -7)   
We've considered changing gastro docs, but have continued with this guy since he has been treating her long before she became end stage. We will consult with her hepatologist at her next appointment and see what he recommends. She is just afraid to have any procedure done that might take her off the list. It's really scary knowing she may have a ticking time bomb in her stomach that could go off at any minute. She does take nadolol daily  to keep the pressure down, but we are still worried.. I just keep my fingers crossed and say a little prayer each day.
 
Charlie

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/6/2010 2:32 PM (GMT -7)   

Hi Charlie,

It is great to hear that your wife's quality of life has definitely improved.  I'm sure it's a mix between getting all her meds working right and your new grandson to focus on!  Sorry to hear about her varices though.  Hopefully her hep doc can shed better light on the situation and be more positive about the banding.  Definitely keep us posted. 

We're all thinking of you,


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 8/8/2010 5:31 PM (GMT -7)   
Hi Charlie, Just wanted to comment on the TIPS procedure. My husband had varices in his stomach that burst and they were unable to band. He was advised to have the TIPS procedure. He had the procedure over a year ago. We were told that the TIPS would not interfere with the transplant. The transplant team is aware of the TIPS and said that it is very commonly used as a bridgeway to transplatation. It is a shunt that is placed inside the liver. and when the liver is removed the shunt goes with it. 

I am glad to hear that your wife is doing well.
Butterflythree
 
There is always hope!

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 8/9/2010 5:30 AM (GMT -7)   

VIEW IMAGE
Butterflythree,

Thanks for the infor regarding your husband, that makes me feel so much better. I am just a worrier, as when she developed type 1 diabetes last year I was also afraid she would be taken off the list, however her Hep doc says that as long as her A1C is 8 or below there is no problem with the transplant. Her last A1C was a 5. This terrible disease just takes a mental and physical toll on the care giver as well as the patient. For the past 2 years, it seems that once you get one symptom under control, up pops another one.

Her meds appear to be finally adjusted to where she can have some quality of life. Her prozac has also been elevated from 20mg a day to 40, and as a result,her depression seems to have just vanished. When her eyes and mouth were so dry, she would have periods when she would just sit and cry, saying "why me." It just breaks your heart to see a love one suffer, knowing you have done all you can to help.

Thanks again for your thoughts and prayers. You folks are certainly in our prayers also.

Charlie


 


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 8/10/2010 8:10 PM (GMT -7)   
Charlie, Yes there are some areas that are difficult for banding and can cause other areas to become affected but it doesnt hurt to ask a second opinion. The reason for concern with TIPS being an issue is the correct placement, if it is off just a small amount they cant clamp the portal vein for surgery. Dougs TIPS was done by part of the TEAM to make sure there was no error in placement, so it doesnt prevent TP if done by right people!
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 8/11/2010 3:35 PM (GMT -7)   
Hi Charlie,
It's been a long time but I was happy to see your name and that you posted. I was really glad to read your wife is doing so much better. My husband has had a lot of banding and never been told that they couldn't do one but I know each person is different and each doctor treat differently as well. My husband is on diovan for blood pressure because of the varies. His blood pressure really isn't that high normally but for precaution reasons that is why he is on the diovan. No mention of the tip procedure for him as of yet. His hepatologist is the one who does the procedure and also is on the transplant team so he calls it on the varies and how they should be handled. I know how scary it is for my husband as well as me and I am so relieved when he goes in every 6 months and they take a look at the varies and band or shoot something in them or sometimes there is no need to do anything as they are to small. My husband's meld score is still hanging around 9 and 10 and he is also on prozac 40 which was increased recently and he seems to be doing better. We also got a new medication for the lichen planus which cleared it up. I cannot remember the name of it but we got it from the dentist office. I was having dental work done and was given an antibotic rinse and had some left over and he used some and what do you know it cleared it up. We've been to several specialist and nothing he used cleared it up all the way for almost a year...so this is good news!! Not sure if it will come back but we will deal with it if it does. I know what you mean it's always something. I just take it one day at a time, that's about all we can do! I look forward to your posts because your wife and my husband are going through simular things close to the same time. Hang in there...
DDMom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/11/2010 3:50 PM (GMT -7)   
Just for clarification, DD is referring to varices (note correct spelling.)

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 8/12/2010 7:10 AM (GMT -7)   

DDmom

Thanks for your post, as we are both sharing experiences that are very similar. Her rheumatologolist prescribed Plaquenil (200mg) twice daily about 3 months ago, and told us then that it would take several months to determine if the drug was going to help with her dry mouth, but that many patients have had excellant results with it. It seems a miracle that she is now complaining of "drooling" in her sleep, when before she would wake up in the mornings with her mouth so dry that she could hardly talk.  She hasn't had any sores in her mouth for well over a month now.  We can only assume that Plaquenil has made the difference.

She is also taking 20 mg's of Nadolol every day for portal hypertension. Her blood pressure is also checked and recorded daily, and normally averages around 110/70. Hopefully with the pressures under control, she won't have a GI bleed. I am looking forward to meeting with her Hepatologist next month to see what his opinion is regarding her stomach varices. Since he works with the transplant team, we will certainly adhere to his advice regarding banding, and/or a TIPS procedure.

We are very satisfied with the transplant staff at Baylor, as we get an email as well as a written report of her MELD score within days of her lab work. When she was in the Methodist system, I had to request her MELD score, and the canned reply was always, "We'll have to get back with you."

I am so happy to have found folks to communicate with that are traveling this same road. This site has been a mental lifesaver for me. Others who haven't walked in my shoes just don't understand what a caregiver is going through when trying to save a loved one from this terrible disease.

Charlie

 

 

 

 


DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 8/12/2010 7:52 AM (GMT -7)   
Oops!! Thanks for the correction on my spelling...I cannot believe I spelled it wrong so many times...LOL
Charlie,
Baylor sounds like a nice place to work with. I wish we got an email with the report and meld score. I feel like I have to beg for the report and Meld score. I ususally get the report at the next visit because I have asked for it. We went to another transplant hospital and got it on the same day with no hassle that was nice. Things are getting better at the transplant hospital my husband is at now but it's taken a while. My husband followed his doctor to a new hospital and things are just so different. Better in some ways but the communication has been really difficult. His coordinatior was terrible and has now quit so hopefully the new one will work out better. My husband is on Rifaxmin and he was on one of the trials and they have stopped the trial at the hospital where my husband is going which isn't good news because the medication is $1300 a month and we don't qualify for low income help and he is in the donut hole and the manufacturer won't help if you have medicare D and your in the donut hole which seems wrong. We've contacted the site Connie gave me and they don't have this medication on the list. We asked for help at the hospital he is at and they are going to check into some kind of help where they contact the insurance company and I'm not sure how that works. Anyway that's what we are working on now if anyone has any suggestions it would be appreciated.

Thanks,
DDMom

Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 8/12/2010 12:17 PM (GMT -7)   
DDmom,

When my wife was forced to retire last year, she was able to keep her group health insurance, although her part of the monthly premium is expensive. I don't know that I will ever be able to retire, as we couldn't afford all her medical co-pays, prescriptions, etc
without me working. Xifaxan (Rifaxmin) is one of the many many prescriptions she takes daily. When she was first prescribed Xifaxan we had to fight with the insurance company to get them to pay, however her gasto doctor managed to convince them of the need, and they finally agreed it was medically necessary. With her hypothyroidism, diabetes, PBC, and Sjögren's syndrome, her list of daily meds is off the charts. Since she is not of age for Medicare, and we don't qualify for Medicaid, we just have to suck it up and pay. I just have to put her medical needs before most everyting else.

Hopefully the hospital may find some source to assist you in getting back on this med.

Take care and thanks for the reply

Charlie

DDMom
Regular Member


Date Joined Apr 2010
Total Posts : 195
   Posted 8/12/2010 2:21 PM (GMT -7)   
Charlie,

I think we are going to have to suck it up and pay as well, at least until he gets out of the donut hole. Our insurance won't pay for Xifaxan either but I don't think there will be a problem getting them to cover it once the doctor let them know he needs it. He at least has enough meds till we get this all figured out. I guess they thought the trial would last till the first of the year but for some reason it was stopped without much notice. We were told once when the medication was FDA approved for encephalopathy the price would go down. Instead it has almost doubled in price. A couple of years ago we did pay for the meds and I was shocked at the price now. I really don't know how the prescription manufacturers can get away with over pricing medications. I am thankful that the medication is available. I guess I need to look at the bright side we will be able to write it off on our taxes. We don't qualify for medicaid either so your kind of caught in the middle. When my husband had to take medical retirement he also had to pay through the nose for cobra. I hope that the hospital does come up with some source but if not we will be o.k., Just a few more sugar free peanut butter sandwiches until we make it through the donut hole.

Anyway take care,
DDMom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2010 4:53 PM (GMT -7)   

DD, if the doctor writes a letter to the pharmaceutical company saying that he absolutely must have the Xifaxan--that it is critically medically necessary--they may pay.  That's what Charlie was referring to.  So hopefully, that's what will happen.  Also, I believe sometime this year, as part of the new health reform, those in the donut hole are supposed to get a check for $250...not a lot when you have a really expensive med, but a little help at least.

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 8/12/2010 10:31 PM (GMT -7)   
Charlie,
Charlie-
I agree that the folks at Baylor are absolutely wonderful!!! This last go-round with trying get my husband re-listed they really stepped up to the plate to get everything done quickly!! Medicaid denied coverage for "medical necessity" and next thing I know, we have a phone call from our coordinator telling us we are to get bloodwork done so we can get re-listed!! I can honestly say they are really on top of things down there!! I do hope you get some input next month (which I think you will) from your hepatologist regarding TIPS, etc....

DD- we, too had the same problem with getting the xifaxin.....it is a VERY expensive drug. Our hepatologist basically called Medicaid (our insurance providor) and explained to them the medical necessity of the drug and it was approved! I am hoping your doc can do the same for you. Insurance companies do not like to pay for that drug since it is so expensive, but if you get your doc to document medical necessity, then it should be taken care of. I am so sorry you are going through all this....it is so frustrating at times! hang in there!!

Mer
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