Toxic Hepatitis? Desperate for answers, Part 3

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Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 2/25/2013 8:22 AM (GMT -7)   
Just busy dealing with this Army out-processing bs, and the other to-do list that I wrote. JQ is well; daughter is well. Should be out of here by March 6th.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/25/2013 11:24 AM (GMT -7)   
Brian, thanks so much for taking the time to post. So glad to hear that all are well.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

SyXx
Veteran Member


Date Joined Nov 2012
Total Posts : 890
   Posted 2/25/2013 11:45 AM (GMT -7)   
Glad to see your post. Good to hear your wife is doing good. I bet it is a mess trying to get things organized to have everything moved state side.

I thought it was a pain moving this time last year, and I just moved across town. I can only imagine moving across continents.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/7/2013 10:07 AM (GMT -7)   
Brian,
 
I assume you are enroute....or maybe back in the US already as today is the 7th.
 
Hoping wife and baby are both holding up with the stress of the big move and the big recovery.  Your little one will be glad to see her Mom and I'm sure JQ will be desperate for her baby's hugs.
 
Drop us a note when you can.
 
Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 3/10/2013 10:51 AM (GMT -7)   
Sorry so long without an update.

I have been really busy the last couple of weeks. Out processing the unit in Korea kept me pretty busy non-stop. I had a huge to-do list to complete. I also had to take my inoperable laptop apart to recondition it and fix a few parts that were wearing out, and I couldn't do that until I bought the proper tools.

I am back in Bethesda now; we finally got here on Thursday. We were held over in Detroit for two days due to the heavy snow in Washington earlier this week. My daughter is still barely getting used to the time difference, so getting sleep has been rough for us both. The flight back to the states was really good; much better on Delta than it was on Korean Air.

Wife is doing well. Her liver transplant is still responding perfectly. She just got her feeding tube, so she has been in a bit of pain lately from that. I am staying nearby in the Fisher house with my daughter. My wife should join us when she feels better and the pain goes down a little more. I rented a car yesterday and we went and did some shopping. We bought a new high chair and food for the kiddo so I can start feeding her solids on a regular basis.

Doctor says my wife will be eating through the feeding tube for quite a while. It will take some time before she can get any kind of surgery for the achalasia, and they aren't too hopeful surgery will do much for it because her esophagus is no longer functioning. In the meantime she will be on a liquid diet through the peg tube.

I think we will stay in the Fisher house for about a month. I am going to drive over to my new unit in Belvior this week and start in processing paperwork and look into where we will live next. I have so much to do. My household goods are in 3 separate locations, and my car is still in Seattle, so I need to submit a bunch of paperwork to get the ball rolling on all of that.

In the meantime I need to prepare another to-do list.

Post Edited By Moderator (hep93) : 3/10/2013 12:30:23 PM (GMT-6)


SyXx
Veteran Member


Date Joined Nov 2012
Total Posts : 890
   Posted 3/10/2013 10:59 AM (GMT -7)   
Sounds like you will be busy. Just wait until you get everything organized and have a place, you will probably not know what to do with all the free time.

Glad to hear the liver is doing good for your wife, to bad about the achalasia, hopefully they can fix things up so she can eat.

Post Edited By Moderator (hep93) : 3/10/2013 12:30:48 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2013 11:29 AM (GMT -7)   
Brian, thanks so much for the update. I have been thinking of you and wondering how things are going. Very good to have you back on U.S. soil. Glad to hear that JQ's liver is working well. Too bad about the achalasia.

Please do keep us updated when you are able to.

Note that I have edited the above 2 posts to correct spelling of achalasia.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

SyXx
Veteran Member


Date Joined Nov 2012
Total Posts : 890
   Posted 3/10/2013 11:43 AM (GMT -7)   
Copy paste can be bad.

Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 3/10/2013 1:45 PM (GMT -7)   
For some reason, my Firefox browser doesn't know that word.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2013 2:00 PM (GMT -7)   
They don't know most medical words, unless you have a medical spellcheck program...which I had when I worked as a transcriptionist.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 3/10/2013 5:21 PM (GMT -7)   
Brian, thanks for the update... your plate is full...   wow.. hang in there... Sandia

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/10/2013 7:57 PM (GMT -7)   
You're doing great, Brian! A lot of people wouldn't be able to handle all that's been thrown in your lap. Your wife and daughter are very lucky to have you.
nullum beneficium impunitum...

Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 3/12/2013 4:21 PM (GMT -7)   
Wife is getting discharged to outpatient care today. She is up and moving around quite well but she will still need some assistance for awhile. We will all be living in a somewhat cramped room at the Fisher house for a few weeks. It will take some adjusting, but it is a huge step forward.

Already halfway in processed at my new unit today. It is much more laid back there than anywhere else I have worked. Tomorrow we will get online and start house hunting for a place for us to live nearby when my wife is fully discharged.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/12/2013 4:38 PM (GMT -7)   
That's great news, Brian! One step at a time, one day at a time.

As always, thanks for keeping up updated.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/12/2013 7:06 PM (GMT -7)   
Brian,
 
I wrote a long note the other day and then I didn't send it right from my phone.
 
Glad you are back and JQ is going to be reunited with the family.  Even is she is still in recovery, the baby will glad to be in her arms!
 
Ft Belvoir area is tres expensive!  Good luck finding reasonable quarters.  My ex was stationed there before we moved to Germany...boy were apartments cheaper over there at the time.
 
Are you up to speed on her meds and can you get the time eto take her for all her tests. I bet the Army will be very supportive of your needs to look after her regimen. Have you found a day care provider to help look after the baby while you are at work.  It is all so complicated.
 
Any glitches other than the feeding problems with JQ?
 
Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 12/23/2013 8:58 PM (GMT -7)   
Please forgive me for dropping off the face of the Earth several months ago. This forum was a great source of information and support and I wish there were some way for me to afford pay it forward.

We found a house to live in back on April and have been here since. My wife's transplant recovery was miraculous in the words of the doctors. She is still struggling with the achalasia and minor other stuff, but she is back to normal in every other sense. We are working on finding a treatment for the achalasia.

I have been committing every spare minute to my job these days; unfortunately the Army needs to cut back and I am under that knife. I have much to do to make up for lost time, and much of my free time has been committed to that lately.

Our daughter is doing great. She is a normal, healthy, walking, loud 15 month old.

I just recently found out one of my best friends and mentors has recently fallen ill to an incurable syndrome. Seems like none if us are immune from ailment.

I hope everyone else here is doing well and looking forward to a good holiday and optimistic new year.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 12/23/2013 10:06 PM (GMT -7)   
Welcome back Brian.. so glad to see you!! I was thinking about you and your family just the other day!! This was a very nice Christmas present!! Thanks for stopping in!!


Sandia

Mae be here
Veteran Member


Date Joined Nov 2012
Total Posts : 1290
   Posted 12/24/2013 4:48 AM (GMT -7)   
Brian,

When you were going through those critical periods with your wife, my heart ached for you and your family. Being so far away, foreign doctors, your wife's skyrocketing levels, the new baby, etc. We were all on the edge of our seats waiting for an update, waiting for an update. waiting for an update. I am so pleased that things turned out so well, it was pretty scary for you all and we felt your pain here.

Sad to say though, we lost Connie, (Hep 93) just last week. She went through h**l and back and her tired body gave out on her. Some day you can check out her blog, she was a trooper......we miss her so much.

Connie is smiling down on your good news...she just loved success stories, as do we all. Bless you all and best of luck going forward.

Hugs,
Mae turn

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 12/24/2013 6:23 AM (GMT -7)   
Brian,

Wow, a perfect Christmas Present for our Forum Family...good news from Your Family.

Here is hoping the new year will resolve the last of JQ's medical issues.

I'm so glad you came back to let us know how all this worked out. I took a special interest in your case having been a military family for many years...from Vietnam through my son-in-law' tour in Korea 10 years ago. We are all civilian families now.

Looks like my partner may be cured in the New Year as new meds for Hep C are being tested in our area. As he is now 2.5 years post transplant, this will be his final step to good health.

Thank you for your service AND Happy New Year.

Hugs,

Carol
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 846
   Posted 12/27/2013 8:29 AM (GMT -7)   
Hi Brian!!
That's fantastic news! So glad to hear that it's all working out. You deserve a good pat on the back for all you do...not only for your country but your family. Your wife and daughter are lucky ladies!
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Brian74
Regular Member


Date Joined Dec 2012
Total Posts : 74
   Posted 5/30/2014 12:39 AM (GMT -7)   
We're in Philly right now for her Heller Myotamy procedure. She is down to Prograf, magnesium and multi's; over a year since the transplant and her new liver is great. Hopefully we will get that peg tube removed now. Things are great. I will post more in a day or two.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 5/30/2014 4:37 AM (GMT -7)   
Good Morning Brian, I just got the online, 2 cent education on the Heller Myotamy procedure. What an advocate you have been! It makes me proud to read stories like that of your family. Such good news this morning, and so terrific to hear your update. Wishing only the best things for you, your wife, and the wee one. Big Hugs
themiz

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 5/30/2014 4:54 AM (GMT -7)   
Hey Brian!!! That's great news. Please do keep us posted.


Ziff
" Never try to teach a pig to sing , It wastes your time and annoys the pig . "

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 5/30/2014 7:08 AM (GMT -7)   
Brian,

I have thought of your family so many times and am so glad you popped on to update us today.

You wife is one miracle wife and so lucky to have an advocate who has gone many extra miles to get her the best care possible.

Like the miz, I looked up the procedure...wow...you found a great surgeon. Will she need special after care or is this done, finished, cured?

Two bits of news-- we lost our beloved Connie some months ago to complications post transplsnt. She is missed every day.

And my partner Mike has been treated for HepC and the virus is undetected hopefully forever. He is 3 yrs post tp now and playing golf.

Many others are having good outcomes as well.

Best to you and your family. How is the baby doing?

Carol
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant May 1, 2011, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014
Beginning Viral Load = 3,700,000
Week 1 Viral Load = 302
Week 3 Viral Load = <15 Detected
Week 4 Viral Load = <15 Undetected
Week 8 Viral Load = <15 STILL UNDETECTED

Post Edited (MamaLama) : 5/30/2014 8:23:57 AM (GMT-6)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 5/30/2014 2:29 PM (GMT -7)   
Good to see you're back. I had been wondering how you and your wife were doing.
nullum beneficium impunitum...
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