Roller Coaster ride (long post)

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Charlie92
Regular Member


Date Joined Jul 2009
Total Posts : 192
   Posted 2/6/2010 7:12 AM (GMT -7)   
It's been some ride the past few months with my wife (PBC from auto-immune hepatatis) and I just haven't time to sit down and post. After she was prescribed  hydrocortisone last Oct, her blood/gluclose spiked to 800 just before Thanksgiving, resulting in a  hospital admission for a couple of days to stabilize her with insulin. She is now insulin dependant with me having to inject her twice daily. The good news is that her blood/gluclose is now remaining normal. During the time her blood/gluclose was in the 800 range, she had a couple of falls where she bit her tongue on both sides. Since then her tongue has not healed. I have taken her to her primary care MD (who thought the lesions were viral and prescribed an anti-viral drug which didn't help), an ENT specialist who diagnosed the lesions as tramatic injuries which, given time would heal, and finally in desperation to an oral surgeon after weeks of still no improvement. The oral surgeon took photos and prescribed an oral steriod gel to be applied for a week. We returned after the 7 days, with sign of healing. The oral surgeon sent photos and consulted with a pathologist who suggested a biopsy and surgery to close the lesions, and told him he had only seen a few cases like hers in his entire career. He says that there is only a 50/50 chance that surgery would be successful. She had surgery the following week, with a followup a couple of days later. During the followup we learned that the biopsy results were negative for cancer (as expected). After about 7 days, the stitches dissolved and the lesions opened back up. The oral surgeon says there is nothing else he can do for her, but believes the lesions will eventually heal with time. Now, with her in constant pain while trying to eat or drink, we have a followup appointment with her hep doctor, only to learn that she has been de-activated from the transplant list due to her chronic ear infections. The hep doc also looked at her tongue and is going to get a report from the oral surgeon regarding the surgery, biopsy, etc. We were also told that she was going to have to have the mastidectomy (which had been scheduled for Oct, but had to be cancelled due to her being in the hospital for anemia) on her ear  before she can be re-activated on the list. The only good news we got was that her MELD score has gone from a 13 to a 9. We were never informed by her hep doc that she had been de-actived from the transplant list, and of course by this time I voiced my frustrations, only to be told that their staff had dropped the ball by not informing us. This past week I have once again contacted the ear surgeon's office, and she is scheduled for ear surgery on April 22nd. Janie is just miserable and  has to force herself to eat and drink. I have started making her shakes using "no sugar added" ice cream and glucemia, which she can tolerate, and drinks at least 2 a day for meal replacements. The oral surgeon believes that perhaps some type of auto-immune issue is involved with her tongue not healing. He also suggested that her being a diabetic may have something to do with them not healing. Janie is just so very depressed, in pain, and simply tired of doctor visits. I am to the point that I no longer know what to do, except try to comfort her as much as possible. This past week, in addition to the pain in her mouth, her ear is starting to hurt again. I still have prescription drops from her last ENT visit and have started them again as I know another infection is starting up. I know this has been long, but I just needed to vent my frustrations. This disease is just so horrible.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/6/2010 1:03 PM (GMT -7)   

Charlie, I am so sorry for what you and your wife are going through.  I know it must be miserable for her and frustrating for you, not being able to help much.  I do know that people with diabetes have a very difficult time healing.  Most amputations are caused from infections that wouldn't heal.  Add to that fact that the mouth, being moist, has difficulty healing.  I do have one suggestion:  The shakes are a good idea, as are smoothies with peanut butter for protein and fruit.  Serve them with straws.  If she can drink through a straw, it will be less hurtful to her mouth.  After she eats or drinks anything but water, have her rinse with either plain or salted water.

Other than that, just do the best you can and come here when you are able.

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 2/7/2010 8:56 AM (GMT -7)   
Hi Charlie,  as with everyone else with liver disease, your wife's journey is not easy.  There's so many other things that it effects
it's not funny.  Just remember to try and get some "me time" in also.  I know you are thinking......there's not enough time in a day.   But it is essentual for you to take care of yourself during this stressful time as well. Caregiving for a chronically ill person has got to be one of the most hardest jobs on earth.  It's easy to forget about yourself with everything that needs to be done for your loved one. 
 
Hope that things turn around soon with your wife.   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 2/22/2010 6:47 PM (GMT -7)   

Charlie, I have been out of the loop for awhile so I was catching up on things. Many years ago I had to have my jaw wired and they way it was done I got alot of cuts on my tongue and cheeks. They had me swish with hydragin(spelling issues so I dont have my glasses on) peroxide with small amount of salt and warm water it helped but was also soothing

Sue


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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/22/2010 9:35 PM (GMT -7)   
Sue, Charlie has another more recent post on here with good news that his wife's mouth is about healed and she is once again able to eat and drink without pain.  Here's the link to his "good news" post:  http://www.healingwell.com/community/default.aspx?f=25&m=1721698
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 2/22/2010 10:47 PM (GMT -7)   
Charlie,

I don't have much to offer in the way of advice, and I agree agree that this disease if terrible.

So, all I can offer here is that prayers ascend for your wife, and also for you.

Be good to yourself.

Rob
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