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healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1779
   Posted 6/8/2018 7:33 PM (GMT -6)   
Hello HW friends.

It’s been a long while since my last post. I stop by from time to time, but haven’t hardly posted.

Dougie just had 6 month labs and GI appointment. Everything is very good.

We have had a very difficult winter. In November Dougie had a gallbladder infection and was in the hospital for five days. he had a stent put into his bile duct and he had to wear a bile bag for eight weeks until he could have his gallbladder removed. His bile bag stopped flowing in December and he needed a special procedure for that.

In early January he had his gallbladder removed. He had complications. Extra bleeding and a bile leak. He was hospitalized for three days. The day we came home he started running a 103 degree fever and was delirious. We were back in the hospital ER after only 2 hours home. While in the ER Dougie had a heart attack and was in ICU for two nights/days. In the hospital another day before going home.

Good news is no heart muscle damage.

Recovery has been long and scary. The bile leak took over a month to heal. His infection did not respond to antibiotics and we needed to consult with infectious disease doctor. When the bile duct stent was removed mid February he got another infection and was back in the ER.

While in ICU part of the heart attack treatment was to pump him full of IV fluids to support his blood pressure which had fallen due to meds following the heart attack. Due to his liver disease the fluids went all over the body resulting in edema up to the tops of his thighs and in his scrotum, and ascites in the belly. 30 pounds worth. Dougie was so uncomfortable and miserable. It took about five weeks for that fluid retention to go away.

While in the hospital in November with the initial infection the pain was so severe he was screaming in the ER and was unable to catch his breath. Due to the bile duct blockage his bilirubin was up to 17. Over night he became the color of a school bus. For the first 48 hours in the hospital we didn’t know if it was gallbladder or the beginning of liver decompensation. Very scary. The GI doctor on call that cared for him that first day was not his regular doctor and had a very different bedside manner...very frank and pulling no punches talking very sternly to Dougie about his drinking. Since his cirrhosis dx in the fall of 2010, he has had periods of sobriety...he has had slips and some really crappy relapses.

Anyway, he (and me too!) have survived this ordeal. His recent labs are all in normal range. Except ALP, which has always been high these years. He is sober 7 months today. He is going to AA. Right now, today, life is good.

I am very thankful and blessed. I count all of you here on this forum as part of my blessings.

Big hugs,
Emma

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 6/9/2018 8:59 PM (GMT -6)   
Hi Emma,
wow!! that was a long scary winter.. Amazing that he came thru everything, and is in good shape. great to hear he has 7 months of sobriety. Even better that his labs are in the normal range.

I also have normal labs, since I quit drinking and cured hep c.. except for the ALP.. my last couple ultrasounds have shown a common bile duct dilation. My hep dr is leaving it alone, and doing ultrasounds evey 6 months.

good to hear from you.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4838
   Posted 6/11/2018 10:13 AM (GMT -6)   
Emma,

I am so glad to hear from you, but sorry to hear that you both have been through multiple horrible medical crises. When liver disease is bad, other systems seem to fail. Mike has had cardiac problems too and lots of ortho surgeries, two incisional hernia repairs, and chronic stage 3 kidney disease. I think Liver Disease takes a TOLL ON YOU WHOLE BODY.

Scared sober is one way to get back your life. Waiting for transplant did it for Mike...in the fall of 2010 is was stop of die. I hope Dougie can avoid that. Mike had that edema in the legs that went all the way to his scrotum, but no abdominal ascites. He was miserable with it. They had him weigh himself every day and then depending on the change from day to day switch his meds around. We had a chart.

Dougie is lucky to have a cargiver/wife who is so involved in his care. Sometimes I think the docs try harder when they know the patient has an advocate/family that will help out coordinating his home care, meds, etc.

Hoping the family is good too. Congrats to Dougie for his current sobriety.

Hugs,

Carol
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2080
   Posted 6/14/2018 12:02 AM (GMT -6)   
Hello Emma, Sorry about Dougies/Your rough winter. Myself well... I'm feeling fine but it aint been particularly nice here lately. Best friend died a couple months back at 72 years of age, his wife passed 4 years prior. UNC is eyeballing a nodule on my liver and doc says they want to remove it if it exceeds 2mm, It's currently 1.2mm as of last MRI (two months ago). Wife and I are currently looking at divorce. As Merle Haggard would say "Only thing missing is mama and a train (to make a country song). Yep, I myself had fallen off the wagon also in the last several months. Ain't proud of it and really don't have a excuse. Life sucks sometimes. I'm lucky (Blessed to be alive) but I'm only human. Given to mistakes.

Well... didn't need to tell you that. It's easy to get muddled down and in a rut. Much harder to escape it. You all been through some troubled times. Good to know you and he are still fighting your battles daily. Ain't much else we can ask for. I myself check in here from time to time to see if the old crew stops in and comments. Good to hear from ya.

Ziff

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1779
   Posted 6/14/2018 12:27 AM (GMT -6)   
PPM, Carol, and Ziff,

Thank you for your words of support. Your all being here means more than I could ever express.

We all have our struggles. Like Mike, these past years Dougie has had other health issues too...shoulder surgery, melanoma, two heart stents. I still suffer from vertigo from time to time. But right now today things are really good. I am so grateful for that.

You have all helped me so much all these years. Thank you all. I keep everyone here in my prayers.

Ziff please hang in there, things sound especially tough for you right now.

Big hugs and love,
Emma

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4838
   Posted 6/14/2018 4:32 PM (GMT -6)   
Ziff...worried about you...things seem uncertain in your part of the universe...health issues, relapse, and family stuff are a heavy load. When you put your mind to it, you do your best work.

Things here okay...Mike healthy-ish, playing golf, sticking to his sobriety now 7 1/2 years. He will take a sip of wine if I have a glass, but never more than a sip, and me no more than a glass. I was into the sauce myself and it was too much. We both just cut that out. I am thankful. He really does want to keep his liver working after the transplant bought him more time. A small tumor in his liver added to his MELD score and he was transplanted at 22. Lucky break, that cancer. It was small but did the trick! Drinking, Hep C, and the cancer were a dangerous triple threat for him.

Hoping you pop in again from time to time to tell us how you tests are going. Would some lactulose or Xifaxan put things to right at home?

Hugs, Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2080
   Posted 6/14/2018 9:50 PM (GMT -6)   
No, It's not me with a issue at home it's her. I'm still taking xifaxin and lactulose. It's a financial thing like loans being taken out without my knowledge. It aint the first time but might be last. I'm just in a rough spot. This aint my first rodeo. I'll keep plugin along. My health and sanity are my priorities, I can't fix everything but I can fix me. My oldest daughter is 16 weeks into her first pregnancy. I'll be a grandad hopefully soon. That kinda balanced the crap storm I been dealing with. I'll be o.k. If not you'll be the first to know.
Emma, Your upbeat thoughts are always inspiring, don't know how you do it without snapping. You do make the load lighter for all of us who care. Night, I'll stay in touch.

Ziff

DGinSD
Veteran Member


Date Joined Apr 2007
Total Posts : 850
   Posted 7/18/2018 12:25 PM (GMT -6)   
Wow Emma! What else can you say? That was a super tough patch. Glad to hear Dougie is doing better and back on track. Can't imagine what all that was like as patient or caregiver.

Ziff! Long time no hear but that's also my bad for rarely being on here. Once the app left my phone, I rarely head over since I'm generally on my phone over a computer. Glad to hear you're trying to focus on the grandbaby to get you back in the black. Sorry to hear about all the other bad. It is life though, ain't it?

I had a crappy start to the year. Our company announced shutdown in Dec but they had to pay us for 2 months so was only unemployed as of Feb. My favorite cat in the whole world passed away in January and my mom passed in March. My other cat is a trooper and even though he's had cancer and diabetes and was diagnosed with beginning kidney failure in March, he's truckin' along. I was lucky and got a job in May well before my severance ran out so the job front was initially sucky but proved financially beneficial...this single momma needed a break smile

Anyway, sorry to highjack Emma's post but it seemed like we were having a little update there smile

Hope you are all having a good week!
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