what is congestive gastropathy?

DH's endoscopy says that he had varices that didn't require banding and congestive gastropathy. What is congestive gastropathy? In all my reading around I haven't heard this term before.


Emma

Emma, did you google it? Seems like it is changes in the stomach lining, not the esophagus like varices, but also caused by portal hypertension. Maybe the facilitators will know more. How is today going?

At our house, hubby is up and dressed and came to the store with me for an hour this morning before he got too tired. We hit the post office, the underwear store (something for me!), and Office Max...got our Christmas card paper before they run out (thinking ahead...to the chance we might send a positive Christmas message to family and friends.) It was a whole hour before he needed to get home and rest.

We may try to walk to the end of the street this afternoon. Past 5 really tiny yards. Woo Hoo. Good Day!

I went to my counselor today. She was great. My self talk message for the week: "It is safe for me to take charge of my own life. I choose to be healthy."

When I can't sleep or feel really scared, I am to remind myself over and over. It is hard to look after yourself when being care giver to someone so sick.

Mama Lama

Good to hear from you MamaLama. Yes, I googled and it appears to be changes to stomach lining as a result of portal hypertension...dang, this illness sucks big time.

Ugh. I have been in a panic today. Woke up thinking about portal hypertension. Worried about DH suffering side effects. Money worries heavy on my mind today. Worried about how in the world we would ever pay for a transplant, if it ever comes to that. Worried about how long he will be able to work...then worried about what to do about lost income...worried about all the extra cost of the ensures and extra co-pays...worried about rx expenses...worried about our 20 year old and continuing to pay for his college...worried about keeping my job...so much pressure. I have to make this salary. If I lose job (not an issue, but I am worried about everything) how will I get another job that pays the same...in this economy...at my age...

Then I am mad, mad, mad...at him...at the world. How could he have been so irresponsible and foolish to stay on the drinking path? How could he put us all in jeopardy like this? I just want to scream!!!! And then I see him, and he is sick, and I love him so much, and then I just feel so so so sad.

Oh, I just feel like I am falling apart today.

Glad to hear that your hubby was able to get out of the house today. I guess we all need to count our blessings as we can. Funny about the Christmas paper...such a coincidence...I have been thinking the same thing too...told the kids to be ready to take a photo...planning the Christmas card for this year.

ML-happy that your counselor is good. I really like mine too. She has been a God send to me. Your hubby starts his documented program this week? I am praying for you.

Emma

Emma, to quote Dr. Melissa Palmer, "Congestive gastropathy is buildup of pressure in the stomach due to crrhosis, which can lead to inflammation and bleeding."  The operative word there is "can"--not "will."

Try not to worry about things that haven't happened and likely never will.  It is enough to focus on today's challenges and hand over the rest to your Higher Power.

ML, glad that your hubby is stable today and was able to get out a bit.

Hugs,

Connie

Thanks for the reminder Connie. I try and take it moment by moment, day by day...but today I am struggling with it.

Emma

Worry is a waste of precious energy.  Instead, seek solutions.  For example, if he can't continue to work so many hours, maybe he could look into cutting back.  If things start to get really bad, he should apply for SS Disability.  When I was diagnosed with hep C in '93, shortly thereafter I made a decision to only work part-time, as full time hours were extremely tiring to me.  I couldn't imagine continuing to work F/T until retirement.  As it was, my hip replacements and complications requiring revisions gave me reason to apply for disability...which I was awarded two years later--right after being diagnosed with liver cancer.  So things have a way of working out.

Hugs,

Connie

Again Connie, thank you for sharing your knowledge. Is there information on all these complicated issues somewhere on this site? I have read folks discussing SS Disability, Medicaid, Medicare, etc...

Emma

Go to the Social Security website... you can also call them directly... yep all those tings that you are talking about... been there and done most of them... the anxiety... however... controlling your anxiety is a big part of what is needed... so somehow need to take care of your own mental health during this time... that is so hard to do... and meanwhile you're being flooded with information and new terms etc all along the way and then when that's all done... the anger... the love... the turmoil... and all I can say... one moment with Mike... was worth it all... and yes we went through hell... even moving during a flood and relocating during that time...while continuing treatment...working etc...wanting it over... not wanting it over... loving... angry... and then loving... and now on the other side... still dealing with the aftermath... and even the anger... but always loving Mike... and in the long run I was blessed to have him... and just have to get throug the rest... somehow..take care of yourself... center yourself... so important... Sandi

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There is no pit so deep that He is not deeper still... Corrie Ten Boom

Emma, here's the link to the main page of SS.  You can read about Disability and Medicare there:

http://socialsecurity.gov/

Hugs,

Connie

Connie-DH has already cut back on hours...but I still want him to rest more. Then he says I am smothering him. He is going to have to learn his limits. And then we will need to know that the limits are going to moving on us.

Emma

 

Emma,

 

Your DH has a point.  I know you are overwhelmed with all you have learned and all that you fear.  You are probably suffering with information overload.  You’ll need to pace yourself and take care not to burn yourself out. 

 

Give your DH a little space and some time to wrap his mind around this.  He needs time to get to know his enemy and understand his boundaries.  He needs to strategize because he has a battle ahead of him.  He is a man holding fast to his dignity.  Understand that he is your husband first and doesn’t want to be your patient. 

 

Don’t get me wrong, your heart is in the right place.  There will come a time when you will need to take up his fight and do for him what he is unable to do for himself.  Try to be patient with him.  So long as he is not encephalitic and a danger to himself, let him test his limits. 

 

[[BIG HUG]]

 

Penny

 

Thanks Penny. I need that big hug today.

Emma

Emma!

Emma, I think the thing you guys likely have is time. So all the steps don't have to be done on one day. Yes, he had a crisis, but he could become stable again for a long long time.

We (mostly me) made a five year financial plan after hubby's cirrhosis dx. He couldn't work much anymore, but wasn't old enough for SS or Medicare. He has been turned down for SS Disability twice. We were going through all our savings $$$ paying for his medical deductibles from really bad private insurance. $10K deductible PER hospitalization. No outpatient doc appointments. $1000 max RX reimbursement. GASP. Over $40,000 went out the window some years! We sold our house up north, moved to Florida and got a small one, less to take care of. Later for all that yard work!

Then I became eligible for Medicare and he for Medicaid. Thank all higher powers combined. We have much better coverage now. I think the transplant is covered mostly at the center we are using. It is on the Medicaid approved list.

Step by step, like his program.

Hugs, ML

ML, I agree that Emma's hubby does have time.  Re: The SS Disability turndowns, that's par for the course.  It took me 2 years to be approved.  I couldn't have made it financially without help from my aunt.  The good news is that because it took me so long for approval, I immediately got Medicare. at the time I was approved.

Hugs,

Connie

ML, Connie, Sandi, Dany, Penny---
all of you---
thank you so very much for your kind and wise words today.  for alot of this i have been hanging in there.  today was just really hard for me.  i was feeling worried about everything...really feeling the weight of the world on me...my world has been turned upside down and i am learning things and dealing with things i never thought i would have in my life...i have to adjust...to know this is a chronic condition (and not an immediate death sentence) that hopefully can be managed...my wish is that he can stay off the booze (we are at 30+ days!) and that he can live 20 years or so and pass from a heart attack in his sleep...or something like that...i know we can sell our house, tell the kids they have to attend a jc, sell the cars, take a bus...i have told dh and i truly mean it...all these things mean nothing without him in our lives...and that as much as we love our home it is only home because we are here together.

(((Emma))),  Hope you got a good nights sleep.   In the stress dept that helps a lot.   As you and others have said.   One step at a time.   Take a deep breath and get in some me time.   When I would feel overwhelmed with everything.   I would take a really deep breath and say out loud to myself a number of times.   "This too shall pass.   We will be okay." Of course I made sure that I was by myself so that no one would think that I was nuts.  Even though I felt like it at times.   It was my mantra.  It got me through a lot of tough days.  

emma it's so hard... I felt like .. man everything was upside down and topsy turvy... I had this intense feeling with every moment I spent with Mike... and yet was doing the planning for the future... the financial etc... sometimes even while I was with him... often my mind was on all those other issues...and there really was no "set" guideline... just went on "faith" for sure... and all the good help here... so one step at a time... and centering yourslelf on each issue as it presents itself... that's the way to stay mentally healthy for yourself and for him.. take care... Sandi

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There is no pit so deep that He is not deeper still... Corrie Ten Boom

sandi-i agree. i feel like our whole world has been turned upside down. and i do feel thankful, that so far, he is pretty close to normal...he has lost 5 pounds, he is tired, he has cut back on his work schedule, he is eating 3 healthy meals a day, jaundice is almost gone...and he is not drinking!!! no big, ugly complications yet...and hopefully never...or minor if we have to have them...so i know in the big picture of cirrhosis we are good. it's just that all that can/might happen is so overwhelming. the unknowns. i am thankful that he is 61 and that our kids are out of high school...this would be so much worse if the kids were little...i am trying to remember to breath and take it one day at a time. my counselor recommended that i limit my research...to help keep me calm...and to spend more time reading something fun for my pleasure...i am trying...just got some new netflix...comedy...that we can watch together...

pink grandma-yes...sleep is what i need. not sleeping well...too much on my mind. i try and sit/rest on the couch for 30 minutes every day when i come home. our little dog will sit on my lap and i can pet her...

i am deeply thankful for this website. all of you have helped me tremendously. thank you all.

emma

Emma and ML, you have no idea how much I am pulling for your guys and hoping and praying that they stay sober!  It is the single best thing they can do for their health.  As a sober alcoholic, it means a lot to me to see alkies stay sober.  I was so gratified to watch our member Timeless/Rick stop drinking and go from being on a transplant list to being taken off and living a normal life.

Your guys have a fighting chance if they stay sober--especially Emma's hubby, since he doesn't have hep C.

Hugs,

Connie

Thanks Connie. The support I have received on this forum has been wonderful. Liver disease due to alcohol has been so isolating and lonely. I feel very fortunate to have the support of our kids, my folks, our siblings, nieces, and close friends...but there have been a few nasty "he did this to himself" and other judgements from so-called "friends". The support here let's me know that we are not alone.

Once more, thank you to everyone.

Emma

when ur done at the clinics.. drs etc.... just close the door on it until u need to deal with it...and yeah put that movie on... music... Mike loved rock music...txt.... whatever it is... that works...and take care of you.. find that friend who will be your support through the whole thing... however it was so surreal.. and most of my friends had never experienced anything like this so it was very isolating... I would never accept anyone's judgement on Mike...I just plain told them that was between him and his maker... not me...and I lived that way with him and everyone... the judgements seemed to rest on my shoulders also and I was painted with the same brush...I had to reach for my faith... often... my best friend who was supportive... everyone has to reconcile these issues relative to their own situation... no one will tell me who to love... when to love.. and who to be with... now or ever... I faced the critics then and now for standing by Mike through bad choices... and I say I would do it again...but that was my choice... when people say he's lucky to have u... I was incredulous... HE??? I am lucky to have experienced loving him... he inspired me... he helped me through bad times... yes he was a recovering alcoholic and drug addict and he foundered a few times... but he was not a throw away person... ok sorry so long...