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MamaLama
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Date Joined Oct 2010
Total Posts : 4806
   Posted 3/20/2014 2:48 PM (GMT -7)   
DV,

I was really touched by your post today...that people are cruel and make you feel badly because you both have Hep C.

Well, here is my take on that.

We do not judge here...so that is the end of that HERE at least.

3,000,000 American's are infected with the Hep C virus, and many of them do not know it yet.

The Baby Boomer's were very vulnerable to its transmission as it was not a known virus until the 90s. Its transmission could not be discussed. Even today, there is little public health awareness or education.

There are many modes of blood to blood transmission. Shared needles, shared straws for inhaled substances, transfusions before the blood was tested, tattoos before parlors were regulated and they used common paints and needles, medical/first responder transmission, battlefield transmission, rough sex, and all those kids who lined up for inoculations in the service where they went down the line using those inoculation guns, unsafe dental office practices, crimes (switching needles in hospitals with used needles...I read it in the newspaper, etc.).

My partner had/has Hep C and was an active alcoholic when he got really sick. His GI doc treated him like a criminal who did not deserve treatment or transplant. He always felt like he was going there to get scolded.

He had used drugs in the late '60s and was a daily drinker all his life...social, not breaking up bars and getting DUIs. He drank beer, wine, cocktails and loved that part of our life. He has been clean since 1970 and sober since September 2010. When he realized he was ill and his drinking was making it worse really fast, he got the message.

Once he got into a transplant program, they have treated him like he is any normal person with a terrible condition. He receives respect and quality care. He got a new liver in 2011 but while still compensated, his new liver is getting bad quickly. The symptoms have returned. He has just started some of the new meds...we are posting about his treatment in the Mike/Sovaldi and Olysio thread.

Maybe some docs have seen too much and are worn out. Maybe they shouldn't be doctors.

3,000,000 souls are infected with a disease for which there are treatments and when that doesn't work there are transplants for many who are not too far gone.

The folks who post here are from all walks of life and have had all kinds of adventures and misadventures. They are sharing their stories and experiences so that the next and next member can catch up quickly to what is going on with them.

Ask your questions, ask for support, we are here.

Ok, I'm off my soapbox for the day.

Hugs,
MamaLama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/20/2014 3:33 PM (GMT -7)   
I have gone out of my way to inform everyone that I have Hep C, though for the past 28 months I've been undetectable. My dentist, eye doc and other medical folks were great. I don't want to be responsible for infecting others. If your dentist treated you badly, go find a new one. I wouldn't put up with that kind of ignorance and attitude.

I haven't had a bad experience with people regarding my Hep C. A lot of this is due to not feeling like I did something wrong, and not being ashamed of the disease. It's no different than getting the flu. It doesn't matter how you got it, just that you need to get rid of it. If people reject you because you have a virus, dump them, they're not a friend. The same goes for medical help.
nullum beneficium impunitum...

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/20/2014 4:50 PM (GMT -7)   
devastated,

I am sorry your dentist was an dumb ass. They can also be a risk to their patients.

http://www.cnn.com/2013/03/29/health/oklahoma-dental-warning/

As for the sex factor of a "dirty disease".

A woman can have unprotected rough sex and get a bloodborne disease. She also could get pregnant. One is considered dirty, .............the other we celebrate.

Hold your head up. No shame.

Big hugs
themiz

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

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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/4/2014 10:33 PM (GMT -7)   
Thanks Mamalama, David and Themiz : ) I appreciate each one of you ! Thank you all for your time and information and Courage.
Where we live has aids awareness but that's about it. It would be less shameful here to have aids than hep ! People are so judgemental and cold hearted here in Indiana.
If you have hep here-then you must be some special kind of dirty mutt. We keep quiet about it. Our families do not even know. Because they have been conditioned to think like the rest of society around here.
As for the dentist I went to, that will be my last visit there. People just don't see past the virus here. I am more than my virus.
Healthcare is supposed to use "universal precautions"on every patient. So they are protected, and we are yet still treated dirty !
I wanted to cry so badd at the dentist. Was so upset. But didn't because they might totally flip out if I did. They acted like sharing room air with me was terrible. So I now have silent tears(I learned how to hold them and yet feel release) does anybody else know what I mean ? I'm sure I'm not the first to do this....I just cannot describe things well.
I am sooo thankful for this forum and all of you who take the time to reach out and help us and others. I know you angels have saved my sanity and I thank you !
I think I will cry right now....I am feeling so much raw emotion. Tears of joy....we are still alive : ) tears of anger.... Tears of silent shame......because of society getting to me......and tears because I am thankful for all of you here ! cry

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/5/2014 1:31 PM (GMT -7)   
Why not report him to the state dental board?
nullum beneficium impunitum...

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/5/2014 8:05 PM (GMT -7)   
Some folks are just incurably ignorant. PHD, Village simpleton, Black, White, Gay and Straight who'd had thought in this day and age with such a advanced society we'd be still dealing with numb nuts. Ahhhh but what do I know? I'm just a simple minded farm animal. smilewinkgrin Don't let em get you down and those tears your holding back is called pride. Nothing wrong with holding your head high when you just out smarted a over payed tooth brusher.

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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/22/2014 12:05 AM (GMT -7)   
Thanks for the reply David and A Ziff : ) I will do a formal complaint...... Thank you for the idea : ) people deserve better treatment than that.

Update on my bf..... He is lately getting drained once a week. He wasn't taking LASIK right. Then suddenly had some pickle craving which I totally discouraged because aren't they full of salt ?
Thing is why would he crave that ? Is he lacking something or what would this mean ?
And his hernia around belly button is waaaay worse..... Like scarey worse. Like if he coughed too hard it might be a problem. He gets drained Wednesday so that will help.
I had a long talk with him tonite about how he needs to take his health seriously and what his future looks like. Before he couldn't deal with this kind of conversation well.
And I have another question....... Is it normal to get albumen every time your drained ?
Thank you all for your time and replays on here ! It really means a lot to me : )

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/22/2014 12:16 AM (GMT -7)   
Mama Lama....... You are a treasure trove of information : ) thank you so very much for all you do to help everybody on here !
I hope your husbands new treatment is helping. Praying for us all ! Thank you mama angel : )

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/22/2014 5:20 AM (GMT -7)   
Once a week for paracentesis isn't good news. Salt is addictive like anything else we over do, I had a hard time with letting go of it. It was surprisingly easy to adjust to a alcohol free life but the salt cravings paled in comparison. He will have to live without salt.

Your right about him taking his health seriously. He can't afford to overlook dosages or not follow directions at this point. All eyes are on him. Doctors take note of how a patient responds to following a set plan, Particularly when a potential transplant is concerned. He will have to take care of the new organ dearly for awhile with medications and regular visits. A lack of effort to follow simple instructions now could be perceived as a risk they may not want to take.

Unfortunately they won't likely touch that hernia until it becomes life threatening due to infection risk. Can it become life threatening? Absolutely, and in most cases including mine it does. The increased volumes of fluid apply pressure to the surrounding organs. There is no room eventually for them to fit normally, and for me the intestine was the thing that decided to move into vacant cavity (hernia). The hernia went from soft to the touch just awkward feeling to hard as a rock and painful. It was the size of a golf ball. Should the intestine kink and rupture your dead. Emergency surgery was done to temporarily repair the hernia.

Albumin is critical and needs to be given at each paracentesis. It replaces the good components of the fluid that had just been removed. The fluid they remove is not just toxins. It's a mixture of toxins and nutrients. Without Albumin he would wither away. It takes awhile to get just a few bottle down the I.V due to it thick consistency so just be prepared to wait for a few hours. A nurse explained the need for it to me and gave me a formula for figuring it out how much was needed each time. Can't remember exactly but it comes down to a few ounces per liter. Have them change the I.V line every two vials to speed the process up if time is a concern.


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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/22/2014 10:15 AM (GMT -7)   
A. Ziff, thanks for replying :-) it's good to know about the potential transplant instructions. I think he will heed this advice. I'm hoping that he does.
And the albumen...... Is the liver just not making this or is it lost because of the large volume of fluid lost ?
He is shocked about having a hernia that they won't touch yet. I think it would be too great a shock to his system to get it fixed. The dr. Didn't explain why. He just said it cannot be done yet and to be careful.
Was this really painful for you when you had your emergency scenario ? We're you lifting anything or did it just get weak enough to just breakthrough ?
When I checked his belly button I could feel a spot where the layers are torn about the size of my index finger tip And that makes me nervous. It's bigger than a golf ball. about a golf ball and a half.
So I hope he gets through today o.k. And tomorrow gets his paracentesis done. Thanks Ziff :-)

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/22/2014 11:40 AM (GMT -7)   
Nutrients and toxins build up behind the impaired liver, It's overloaded. So yes the good stuff is being tossed out with the bad during paracentesis. If they don't give albumin afterwards the body will go into self preservation mode and start attacking muscle tissue to get the nutrients it needs. That results in "muscle wasting". Muscle tissue will eventually be lost in short order.

Any surgery is a risk even including simple paracentesis. The body has no way of filtering out germs and waste with a damaged liver. Factor in surgery and the potential of infection and it can be devastating. So much so that typically if emergency surgery has to be done they won't even consider placing mesh behind the repair to reinforce it. He will just have to be careful. Lifting a milk jug isn't gonna be a good idea for awhile.

Yes, It's excruciatingly painful when or if the intestine pushes through. Like a match to bare skin is the sensation. It may not happen at all but if it does he'll know about it.



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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/23/2014 6:33 PM (GMT -7)   
Thanks for the reply Ziff :-) he had his paracentesis today and they drained 6,150 ml and gave him 37.5 of albumen.
He is using a Tegaderm patch 4x4 3/25ths and 4x4 gauze folded in half and putting over his belly button hernia. The patch with the gauze doubled up seems to make the hernia area more tolerable. And actually works better than his Velcro abdominal brace.
And they told him to never-Never eat pickles again nono
They told him that pickles are what made him blow up again in a week since he was last drained. There are no pickles in this house..... I threw them out. And I won't let anymore in..... devil
Even though they drained him today and it was notably different.... He still looks like he has a pooch belly......is that normal ? Will it always be like that ? I only ask because he has asked me and I wouldn't have a clue.
He has a very-very long torso because he is very tall. So at the para clinic in the hospital, they have a time draining him. The fluid hides so easily in his abdomen. But today you could see the difference in his upper abdominal area was flat after being drained.....the pooch stayed though.
New question......is it wise to take any vitamins or mineral supplements ? Or is taking supplements too much extra work for the liver ?
And thanks Ziff for telling me about the risks of a surgery......I get so caught up in day to day life in the middle of this that I get emotional and when I do that I cannot think straight. I thought the liver was still filtering some.....like about half..... And that is crazy that I was thinking that.....it's actually scarier than I've been letting myself believe ! And I am amazed on how the human body keeps going during this type of state then.
Again thanks
:-) :-) :-) :-) :-)

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/23/2014 9:07 PM (GMT -7)   
I would imagine it's much like a woman after she gives birth. There is a pooch but that will go away eventually, It did for me anyhow. Be careful about that patch. I tried all the tricks I could think of including that one. Seems I'm allergic to some types of adhesives after long term exposure. It created water blisters and made the area around the patch pull up my skin EEEEOOOOUC!!!!!

Yeah pickles and those dag blasted boiled peanuts (full of salt) are my biggest temptation to date. Being from the south a lot of the food is heavily seasoned, Salt makes everything from armadillo to possum taste heavenlytongue. The most fluid I remember having removed was 9 liters at one sitting actually may have been more. Anyhow give him my best and hope you guys do o.k.


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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 4/27/2014 12:53 AM (GMT -7)   
Ziff, thanks for the reply :-) I thought about what you said about the blisters and I knew in the back of my mind that it was a possibility. A new possible level of annoying torture that he is willing to chance.
Southern spicy food sounds good :-) I will dream about that lol :-)

Thanks for giving him hope about the "pooch belly".

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 5/3/2014 10:39 PM (GMT -7)   
So within 7 days he looked distended again so we went and he got drained and only had 3 lieters. So his intestines are swollen. I don't know why they are swollen and he is also experiencing arthritis pain in his hips. Also he has been dizzy a little bit at times plus his color looks off....not really yellow....darker and he is really dark under eyes. He looks terrible and doesn't realize it. People have asked him if he is o.k. And he acted like why is everybody asking me that....but at the same time he says he feels off.
He can't handle the truth from me.....if I tell him you look tired or your color is off he thinks I'm being negative.....so I keep my mouth shut....but I'm a worrier so I'm gonna worry till I fall asleep tonite. Im sure most of the significant others on here do the same confused

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 5/3/2014 11:51 PM (GMT -7)   
Yep the caregivers know when to just be quiet.. he doesn't know how he looks and even then probably doesn't want to know.. Mike was upset when he got "man" boobs.. it's hard to deal with a changing body image... hang in there.. deep breaths.. one step at a time..

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 5/6/2014 8:43 AM (GMT -7)   
Arneeb thanks for replying : ) it is nice to hear from other caregivers ! I feel like I'm on an Island most of the time....... And the only time we dock is at the Dr office.
I agree on the self image problems. Thank you for your positivity :-)

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 5/6/2014 8:52 AM (GMT -7)   
I hated Dr. appointments. Mike would be telling them stuff that just wasn't right. I just butted in and said that isn't so. I realize now that he was dealing with HE and didn't remember a lot of it. One day I was writing about Mike's "man boobs" and he came out of the bedroom with my bra on... and I'm not a small girl. It was so frickin funny. That's in my post. He had a good sense of humor most of the time. thanks for the kind words. Keep your face to the sunshine.. you'll never see the darkness!!

Sandia

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 5/9/2014 9:57 PM (GMT -7)   
Arneeb thanks for the reply and the laugh :-) him walking out of the bathroom wearing your bra.....that's hysterical ! Lol love it :-)

My guy has been acting so HE for two days. He acts like I'm being negative and I'm not even talking lol.....he also acts single in front of me and I find it disrespectful. I'm nervous about if he gets real bad HE again like in the beginning......he locked me out of the house etc and much more I'm leaving out....point being he is very tall and I'm short....will it be a safety issue for me in the future ? He was somewhat violent in the beginning and I'm worried will he be like that again ?

Thanks for the laugh Arneeb I sure needed that today :-)

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 5/10/2014 9:02 AM (GMT -7)   
Hi dev,
Increase his lactulose. Luckily, themister has not been violent to me...ever. He did get Riba Rage and was like living with a different person. HE makes themister angry, argumentative,frustrated, a know it all, and contrary. I could use many other words. And he has been somewhat inappropriate, without knowing it. Like a teen-ager, not a grown-up...if that makes sense. Not sexually, more risk taking attitude, or talking like teen boys talk. It helps that he was my boyfriend when he was a teen-ager. So I KNOW him. And I love him, so I do not want this disease to win.

HE can cause all sorts of awful behavior. And yes, he may become violent and you might be in danger during some episodes. He also might be a danger to himself.

When themister's ammonia shot up to 360 causing a hepatic seizure, he came to and did not know me.....nor what was going on. He fought 6 firemen EMT's who had to restrain him with ankle and wrist restraints to get him to hospital. Neither of us can believe it all happened, ....but it did. HE is dangerous. More lactulose. 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

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/26/2014 1:07 PM (GMT -7)   
Update-he had Tips procedure done Thursday. He was going to get paracentesis done once a week(refractory ascites). Finally got into see liver Dr. Ordered tips consult. Meld score was 14. Do not know what his score will be since tips.
Now takes lactulose (finally) prescribed xinafaxen(mis-spelled I'm sure) insurance won't pay for all of it so working on way to get that done.
Was shocked by the drugs after his surgery that they were giving him. I had a fit.....I'm strict : ) I do not want him having anything that could kill off his liver any faster. The hospitals idea was hey, just closer to transplant by taking those pills......I told them it's not their liver so they don't care......I need to seriously get my own appt for therapy I'm thinking......I am going through anger issues with non-compassionate medical personnel.
We did not recieve aftercare instructions.....very upset with I.U. Hosp.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 7/26/2014 2:20 PM (GMT -7)   
Hi DV,
So good to hear an update from you! I have often thought of your dental office experience, and the ridiculous shame put upon sick people with a disease. I know that is behind you but I still remember it and think of you guys now and then.

Themister had a TIPS 18 months ago. The HE has been a big problem since TIPS, more controlled since January this year.His was done due to bleeding risk. The Xifaxin is a big help. Has he had HE in the past, and what meds does he take now? How are you feeling....besides angry and tired of liver disease : ) We all have that in common, most likely. Big Hugs
themiz, Forum Moderator-Hepatitis

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

Post Edited (themiz) : 7/26/2014 3:54:28 PM (GMT-6)


MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 7/26/2014 3:19 PM (GMT -7)   
DV...that part about not getting post op instructions reminded me of one of the zillion times Mike was in hospital before and after transplant....his discharge was a jumble and when we got home found his discharge instructions were in CREOLE.. In Miami everything is in 3 languages...Spanish, Creole and English. The directions were no help. Grrr. I empathize how you feel. Everyplace is trying to do more with fewer staff members.

How is it going today?

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.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 7/26/2014 6:47 PM (GMT -7)   
This link provides some vital info about Xifaxan and potential assistance with cost.

www.salix.com/products/xifaxan550.aspx

devasted
Regular Member


Date Joined Dec 2013
Total Posts : 38
   Posted 7/26/2014 7:57 PM (GMT -7)   
Thank you Themiz, Mama lama and A Ziff : ) He takes Furosemide, spironolactone, Baraclude, magnesium, probiotic, lactulose. Working on xinafaxen.

And I have gotten over the "dentist issue" only to have interventional radiologist Dr. Speak of my mans Hepatitus in front of a group of family members who did not know that he had hep. That was a moment lol : ) now they know and I'm glad ! I'm sick of tip-toeing around the whole truth.
I'm glad Themiz that the mister had his tips done : ) today is day 2 of lactulose and already I'm having to keep asking him to take it : (

Omg Mama lama creole lol ! I agree with you on the staffing issues.
At I.U.hospital nobody was on the same page. It was mayhem.they gave out false info on phone to family members.....they did not send him any meal trays. I had to venture down three floors to a sandwich shop and get him something to eat. The nursing staff had an attitude really bad. We couldn't find him after surgery. They would not let me see him for 3 hours after surgery-when they said I could earlier. Didn't get into room for 2 hours because nobody had time to call housekeeping.......hmmmm ! And so we survived lol : )
Today he is resting more and all the drugs finally wore off : ) he still has compression bandage on his neck. Bathroom time has came into the mix now : )
I still have him and am so thankful ! The Dr said his pressure gradient on his portal vein was nine times higher than the limit. Was almost totally closed off. I am so glad he had this procedure done ! His veins are already not distended like they were. Yay !
Before tips his meld was 14.
Thank you for the xifaxan info Ziff : )
Thank you angels : ) tomorrow is a new day : )
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