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Toxic Hepatitis? Becoming desperate for answers Part 2

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Posted 2/5/2013 2:59 AM (GMT 0)
Brian, it's good to know that your wife is back at Walter Reed and receiving good care. You seem to have a plan going forward, so that will keep you on track.

Hugs,
Connie
Posted 2/5/2013 8:25 PM (GMT 0)
Brian,

How complicated this is with you, essentially, between duty stations, without proper housing...etc,

And I'm not sure that the DC area HAS actual quarters for folks...doesn't most everyone live on the economy there?  I can't remember.  My ex was stationed at Ft Belvoir just before we were married and my brain is empty. We went next to Germany and there was lots of housing at that time on base.  You likey have been living on the economy in Korea also as that generally isn't an accompanied tour....with a local wife, though, that would not have been too difficult. 

So much to sort out!  Wishing you well and know that what we have seen so far is a family who is really well prepared to FACE ANYTHING.

Well done.  I'm so glad your wife is getting well so quickly. 

Don't be a stranger.

We'd be especially interested if the docs have had any idea what in the world happened so quickly??? This was a really bad situation that turned around so fast.

Best,

Carol

Posted 2/6/2013 2:00 AM (GMT 0)
Brian,,,
Thinking of you and your family. Hope all is progressing well. I agree with Carol...wow an awful lot to handle, but you seem to be doing it well.
Angie1953
Posted 2/7/2013 1:18 AM (GMT 0)
Brian,  you all okay today?  Carol
Posted 2/7/2013 8:18 PM (GMT 0)

MamaLama said...
Brian, you all okay today? Carol

Things are going well. Came back to Bethesda on Tuesday. Wife is fatigued and feels sick much of the time, but the doctors say it is normal for her circumstances. They put her back on a feeding tube because she couldn't keep anything down, due to the achalasia. Today she will undergo botox injections near her esophagus to minimize the achalasia so she can begin eating again and get set up on a regular dietary plan.

Took the kiddo to Target via Metro yesterday and stocked up on the next 2 months worth of formula and some stage 1 veggies. She is taking to squash by spoon ok so far and still eating a lot.

I have been trying to get in touch with the social worker to get some sort of idea what duration we are looking at, so I can begin coordinating the round trip back to Korea. Hopefully we can do it by the time my wife goes on outpatient status, but not sure how all of that will work in their grand scheme of things. I'm still even waiting for TDY pay; all of our accommodations have been out of pocket since Korea.

In the meantime I will figure out the housing allowance near Belvior and begin looking into future housing possibilities, as we will likely need to move fast when the time comes. Other than all that, its still just a waiting game at this point, being a stay at hotel dad.
Posted 2/7/2013 8:53 PM (GMT 0)
Brian, I can't imagine a recently post transplant patient staying on their own in a new town. She will need a caregiver at home or will need to be in a facility. Mike could not have managed. Connie did really well alone, but had neighborhs and friends who drove her all over and did her shopping, etc. Quite a dilemma you have. Are there relatives who could come?
Posted 2/8/2013 12:34 AM (GMT 0)
Mayo requires a 24/7 caregiver for month post discharge. My sister could only stay for 10 days, but I was doing well enough that I was told I could be alone. I don't drive (never learned), so my neighbors were great about getting me to labs (3 x a week after a week of daily labs) and appts. and shopping for me. But I had to do my own cooking (and diet is important), laundry, and other household chores. That was difficult because I was so weak. In your wife's case, she will also have the responsibility of a baby. You are a great dad, but once you are working I imagine the baby's care will fall to her.

I hope the Botox works for her achalasia.

As always, thanks for updating us.

Hugs,
Connie
Posted 2/8/2013 2:46 AM (GMT 0)
I am uncertain how things will work for her as an outpatient. I wonder if any home health care is covered at all. I will have childcare available during the day if we need it. I always did the shopping before, so that wont change much. With traffic the way it is here, it may be rough getting her back to the hospital for appointments. I do know the unit here will be extremely flexible. Once I can talk to the social workers and doctors, I will hopefully know much more.

She looked much better today. Botox treatment went well. She says the doctors told her they plan to surgically and permanently fix the achalasia before she discharges, so she may be there for awhile and in better than average shape when she leaves.
Posted 2/8/2013 4:34 AM (GMT 0)
Brian, that is great if they will correct the achalasia while she is there!

I don't know what your insurance pays. My Medicare did not pay for home nursing per se...and didn't want me in a NH due to high infection rates. I did, however, get wound care nurses coming to my home while I had the leg ulcer. They would clean it out and repack it. This went on for 8 mos., usually 3 x a week.

Hugs,
Connie
Posted 2/8/2013 8:31 PM (GMT 0)
Will be going back to Korea shortly; should get tickets in the next day or so. Everything has been worked out on both sides of the world so I will be back in time to join my wife when she is released.

Talked to surgeon today and got more bad news. It appears that my wife's achalasia has progressed to the point that it is not reversible and she will never be able to eat normally again. The doctor basically wanted us to start thinking about whether she wants a feeding tube to her stomach or a hole with a flap over it. I can tell my wife is pretty devastated. Her one passion in life has always been food. I am still kind of in shock over this.
Posted 2/8/2013 9:25 PM (GMT 0)
Oh, Brian. I am so sorry to hear of this news. Is she able to drink supplements like Boost or Ensure, or even Carnation Breakfast Essentials? Diet is such a big part of recover, especially protein. You could also make smoothies, if she could eat them. Otherwise, she will have to receive the needed nutrients in the manner you described. How about meeting with a dietician to discuss this.

You might consider taking Air-Borne to try to stave off infections like the flu. It's rampant right now and that will be a long flight back to Korea.

Hugs,
Connie
Posted 2/9/2013 6:15 AM (GMT 0)
She cannot drink or eat much of anything, due to her achalasia. It seems to come and go. The doctors don't want to take a risk, due to her dietary and drug requirements for her recovery. I stressed to them the importance of treating her achalasia several days ago (for those exact reasons) and they looked at me like I was stupid. Instead it took 3 days of them watching her vomit everything back up.

She didn't get anything since breakfast when I saw her today because the physical therapist accidentally yanked out her NG feeding tube this morning. She wasn't paying attention to where she placed her hand when she instructed my wife to attempt to stand up from her chair. My wife got to enjoy another NG insertion this afternoon.

They did a botox injection on her two days ago in an attempt to treat the achalasia, which apparently didn't fix anything. I trusted they knew what they were doing. I later did some reading, and it seems that a large consensus does not agree with that sort of treatment, as it makes a myotamy more difficult later, due to the scarring that the botox causes. Why didn't they evaluate her achalasia more thoroughly first before the botox treatment, and discuss the details and risks of that procedure with us, prior to doing it?

I am sick of second guessing doctors; sick of hearing one doctor tell me one thing, reading something different elsewhere, and still yet another doctor telling me something completely different the next day.
Posted 2/9/2013 11:18 AM (GMT 0)
Brian,

  So sorry that you are so frustrated and get conflicting info...that is so very crazy making when you seek the best choices for your wife. Also sorry she had to undergo another NG tube insertion. 

  Keep advocating for her...even though you are frustrated.  Require more info from them, ask more questions...sometimes they won't like it, but every patient needs that loved one advocating for them.  Keep posting here, too.  You are doing a good job at this with so very very much to do and a little one.

   May the weekend run smoother for you both.  We are all thinking of you three.

Angie1953

Posted 2/9/2013 6:05 PM (GMT 0)
Ditto what Angie said. I've experienced discrepancies between Transplant Coordinator and Hepatologist, though I don't think I've had 2 doctors disagree.

Hang in there, Brian.

Hugs,
Connie
Posted 2/12/2013 4:51 AM (GMT 0)
Brian, we haven't heard from you in two days. I hope everything is going according to plan. Please check in with us if you get a free moment.

Hugs,
Connie
Posted 2/12/2013 1:17 PM (GMT 0)
Bay Ridge , Could you please let me know where this persons medical papers are ? All I have found is claims of a cure based on his own studies . No medical institution backing of his claims at all . During my search I did find out that his threads in other Hep. C related forums was banned for these same reasons . If you care to gamble your life away on hokey claims of miracle cures that are unfounded by the medical community that is entirely up to you , Please don't encourage others to do the same .

It's no secret that people become desperate in finding a cure when the medical community at large can't seem to do so . This is the market these so called miracle cure creators depend on , Similar to that of a buzzard watching a turtle cross a busy intersection , they lay and wait till people are at there most vulnerable .

 A. Ziffle     

Posted 2/12/2013 1:58 PM (GMT 0)
Hi Bay Ridge

I see you are new to the forum. Just a hint - it is always worth reading all the thread before you post. If you had done that you would I think have realised that the medics never could find the root cause of Brian's wife toxic hepatitis despite extensive testing and she has now had a transplant.

Dr Berkson's 'claims' seem to cover most things - MS, all autoimmune diseases, cancer etc etc. Such claims always make me very sceptical and like A. Ziffle I have never found anything substantiated in any peer reviewed journal. Be very very wary would be my advice. Personally I wouldn't go near it unless my hep recommended it. Ask your hep about it at your next visit and see what he says. I find my hep is always happy to discuss anything. That way I get an informed view.

I see you have AIH and are on cellcept (mycophenolate mofetil). I too have AIH and am have been on this med for 10 years now. It suits me very well so I hope you are well on it too.

Ann
Posted 2/12/2013 4:54 PM (GMT 0)
Folks, I deleted a post by a new member recommending an herbal or alternative treatment.  There are two responses to Bay Ridge discouraging the use of herbal or alternative treatments outside of a treatment programs endorsed by your hepatologist. 

We can continue to provide support to Brian's family who has had quite a journey from Korea to the US for treatment of Toxic Hepatitis, through successful transplantation.

Continued good luck to them as they relocate more permanently to the US.

Mama Lama

Posted 2/12/2013 8:25 PM (GMT 0)
Also, such a post is a violation of Healing Well rules:

5. No posts regarding research studies, surveys, or clinical trials without prior approval from the forum administrator.

Hugs,
Connie
Posted 2/12/2013 9:13 PM (GMT 0)
Hey Ziff, I've got a bridge to sell you...
Posted 2/12/2013 11:04 PM (GMT 0)
Guess I missed all of that.

All of the changes are starting to come slower at this point. Wife is doing better each day. She is now able to stand up just fine. She is still feeding through the NG tube, but they are allowing her to sip water as they further evaluate the botox treatment. I was able to discuss the achalasia with a couple of her other docs. They completely contradicted the news we got from the first doctor, saying they plan to see more surgical procedures made available to repair the achalasia in the future as my wife's condition improves. Not sure why the first doc gave us the gloomy outlook that he did but it really had us worried over the past few days. I also got a call back from a specialist in New York; they are interested in seeing her recent test results for the achalasia.

I am waiting for the air evac coordinator to respond to me about plane tickets back to Korea. She's already a day late getting back to me, so I hope I don't get told I need to head for the airport on the night before.

Daughter is entering a new phase that has changed her general personality more from calm and cheerful to fussy and loud. Lol, just in time for the long commercial flight back. She has been a handful lately in the hotel room and I am not getting much sleep the last few days. Guessing mostly new diet, teething and the general 5-6 month mental changes in awareness of the world. I will try and get a quick appt. with a pediatrician here tomorrow to rule out an ear infection, just to be safe prior to flying out.
Posted 2/13/2013 12:09 AM (GMT 0)
You're doing great! I'm happy to hear that other docs have ideas on how to take care of your wife's achalasia. Keep on being an advocate for her. It works.
Posted 2/13/2013 12:22 AM (GMT 0)
Great to hear from you, Brian!

Just be glad your daughter hasn't yet hit the "terrible two's." smilewinkgrin

Hugs,
Connie
Posted 2/13/2013 4:35 AM (GMT 0)
ohhhhh noooo you had to tell Brian about the terrible twoooos.... Ziff the Piff.. and David the Goliath... are still struggling with that phase... omg...

So glad to hear your news.. any news... you're still pluggin along.. hang in there guy... wow. what a marathon it has been for you.. hang in there guy... what a daddy... omg...

prayin for you Brian and wife.. and baby..

Sandia

Posted 2/13/2013 4:47 AM (GMT 0)
I represent that remark...
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