Hep C Discussion Forum

wmlj1960 · Moderator

RE: Need your advice

Linuxter · Guru

Wishing the best for your friend MM, your reaching out for them says a lot.

Your friend is a survivor to have made it this far, we all hope for the very best.

Dave

Tig · Admin

Hi MM,

I'm saddened to hear about Alex's set backs. How is Anastacia doing? Give her our best and let her know we're keeping her in our thoughts and prayers. You're a good friend and I hope you know Alex, Anastacia and all of us respect you for the kindness and concern you're showing your buddy. The world could use a lot more people that carry your kind of compassion in their hearts. If we can help you through this, please let us know. We've got some pretty broad shoulders among our friends here and if you need one, it's here for you. Stay strong and keep us informed of his condition. They can do some pretty spectacular things in medicine today. Be sure Alex knows he has our support and prayers...

Ari-anna · Veteran Member

I just read your friends story - what a difficult journey. I will keep him in my prayers

malekula man · Senior Member

Alex stayed for more then 3 month in intensive therapy unit, had some surgeries because of many complications, renal impairments and etc...
Recently he was transferred to rehabilitation unit, was ok. but... yesterday his had cardiac arrest for some minutes (liquid in lungs, suffocation), after 15 minutes of medical activities he's back to us but still in coma...
He needs your prayers, his battle is too tough

malekula man · Senior Member

Good news: Alex breathes without tubing starting today, talks with medical personal.

-- Edited by malekula man on Thursday 5th of November 2015 03:24:14 AM

malekula man · Senior Member

Mike, thanks.

P.S.: They aren't my family, just friends I've found on another HCV-forum. We both started Harvoni Tx same day: 12 wks for Alex and 24wks for me.

CG, thank you. Will relay your wishes to Anastasia.

Cinnamon Girl · Guru

How absolutely wonderful, MM!! Such excellent news, and I`m so pleased for Alex and Anastasia, and for you too!

Please do keep us updated on Alex`s recovery ... all very best wishes to everyone involved, including his very skilful medical team!

wmlj1960 · Moderator

That's wonderful news MM. Yep, sounds a whole lot bigger than extremely lucky. Sounds like a Godtime thing to me. I'm happy for you and your family!!! smile

malekula man · Senior Member

Yeah, the salvation arrives sometime in a strange way when you are totally stuck and hopeless.
Thank you all for words and wishes.

Tig · Admin

Thanks for the great news MM! What a blessing for Alex, Anastacia and you. I'm so happy that U of MD came through for him. It will take a lot of recovery time I'm sure, but it's all worth it. When he's back on his feet and enjoying a healthy lifestyle, you will all be able to enjoy knowing that you did this together. A new lease on life is a precious thing and can be quite rare when you're as ill as he was. There's a reason he was given another chance and he has you, Anastacia and the good Lord to thank for it. (We don't want to forget the U of MD and the Donor either!)

xtra · Veteran Member

What a wonderful end to the story. I am so glad he was transplanted and is doing well. I am glad for both of you. There is more than one way to skin this dragon!

Many prayers have been answered. Keep posting the good news!

Penelope PePod · Senior Member

MM,

That's wonderful news, and what a blessing. God does work in mysterious ways.

Penny

malekula man · Senior Member

Hello,

Just to let you know, Alex had a successful transplantation 2 days ago. It was unplanned, he stayed in hospital of the University of Maryland for last month (after being flushed by Hopkins and by two others because of his mental state). It's a miracle because of many reasons: his MELD decreased to 9 (so he wasn't a priority), none of the patients in the list could not arrive in reasonable delay, others weren't "compatible" with donor liver. So the transplantation arrived as God's gift for him and Anastasia.
He's still in hospital in kind of medical coma - he's too weak to move, connected to many tubes and equipment but his mind cleared and he understands what people says when awakes, responds with eyes and yesterday said a first phrase full of love for his wife.

We are praying for Alex's fast recovery...
Thanks God.

-- Edited by malekula man on Saturday 31st of October 2015 05:12:00 PM

Cinnamon Girl · Guru

Hi MM, thank goodness the hospital has finally recognised that Alex has a serious problem, and I agree that it`s very difficult to understand why it`s taken so long. No wonder Anastacia is furious, and I would think she has good grounds for making an official complaint.

It`s truly wonderful to hear how much better Alex is feeling now, but he really shouldn`t have been left to suffer for so long.

Thanks for letting us know what`s been happening, you are a very good friend to both of them!

All my very best wishes to Alex and Anastacia, and good luck with his continuing treatment.

malekula man · Senior Member

Around 3 gallons total. They flushed only 2 gallons of the fluid, the last one will be next time - it's dangerous now for him to flush it completely. The TIPS is bent because of the constipation or fluid accumulation... They was refusing to check it and help Alex for 3 weeks, guys!!! 3 weeks in pain and side effects of the progressive hepatic encephalopathy. Now, after flushing he is a totally different person - no more pain or signs of the encephalopathy. Anastasia is very angry now, she doesn't believe that a patient in critical state can be treated like this for a such long period...

I would like somebody explain what's happening in this hospital or with these doctors... Just incredible...

-- Edited by malekula man on Thursday 20th of August 2015 04:30:52 AM

Tig · Admin

Thanks for the update, MM. I hope Alex is getting some relief from the discomfort. Give him and Anastacia my best. Keep us informed and treat yourself well. Best of luck you guys!

malekula man · Senior Member

A small resume for these 3 days

Alex finally was accepted yesterday in ER at MGUH. A paracentesis was scheduled for today. They say that his TIPS doesn't work right. An analysis needed to understand what's going wrong and to fix it.
It took a lot of time for doctors in MGUH to understand it... It's just unacceptable. They put his life in danger.

Tig · Admin

MM,

I'm glad you brought it to our attention. We're here to help if we can. Hang in there. Hopefully there will be some progress today (Monday).

malekula man · Senior Member

It's really a terrible situation. Alex isn't capable to explain his situation to the doctor - his mind is foggy now, he doesn't inform clearly doctor what is happening. The people (caregivers) talk with doctor but they don't know all situation, they work during the day, have their life. They can bring Alex to hospital but he stays alone there normally. Nobody with him when he talks to doctor. I'm 1000km away from DC, I cannot be there. So that's why we are searching for some organisation or patient advocacy...

Sorry to bring it to the forum but that's all I can do for them trying to find some help with this situation. We are googling but all roads lead to MGUH...

PS: I'm ok, thanks

Tig · Admin

That's a terrible way to treat anyone, but especially a patient that's in the shape Alex is in. I'm afraid I wouldn't be very pleasant to a facility that treated someone like that. The way people are being treated in so many places now is bordering on criminal, negligent at the very least.

I hope the Ombudsman will be able to provide you with the assistance Alex obviously needs. If he experiences a worsening of symptoms overnight, don't hesitate to call 911 again. I know it's easy for me to say, but if he ends up going to the ER again, tell them that you expect something to be done to bring him some comfort at the very least. If you get the run around from the attending physician, request the department head and don't leave until you get some reasonable help. Don't take no for an answer. Someone there cares, I'm sure of it. Keep us informed and give Alex and Anastacia our best. I'm sorry they are having to go through this.

PS: MM, don't forget to take care of yourself too. You've been through a lot recently as well. Take care of things, you're obviously a very caring and considerate friend.

malekula man · Senior Member

So, here's today status. The people who care about Alex called 911, he was brought to the Virginia Hospital Center in Arlington. They detected that he is full of fluid (ascite) but did nothing except blood test and appointment in 9 days!!!, said "go to your hospital now" for paracentesis. Said, yeah, full of fluid but for your state it is normal, we are nothing to do. His hospital in Georgetown don't do nothing and sends him home. Now Alex refuses go in MGUH because he knows - he will wait for another 5-6 hours in the line for doctor and he just can't: the pain and total desperation doesn't permit him to stay calm and patient. Ombudsman will be available only tomorrow morning.

-- Edited by malekula man on Monday 17th of August 2015 01:10:39 AM

malekula man · Senior Member

Nope. 39yo, 9 years in US. Diagnosed in last November (2014) when the problems with ascites started.

UPD: I was wrong, it wasn't John Hopkins Center which refused to talk but the University of Maryland. Thanks for link, Tig, we will check it.

Tig · Admin

Is he a Veteran?

malekula man · Senior Member

Hello, Tig The John Hopkins Center in Baltimore refuses even talk with them both. And says "yeah, you are in line for transplantation with us too, but for all other problems your hospital is in Georgetown". That's a weird reality. I don't know if they was talking directly to coordinator on duty but Anastasia can clarify this situation. Calling to 911 doesn't help enough - on arrival in the hospital Alex was checked, got more laxative and sent home after 2 days. That's why they ask for patient advocacy or some organizations. P.S.: you described rigth the TIPS, it is CG, as I understand having a good insurance doesn't solve this problem - the doctors in MGUH just say " he's still OK for waiting ". But you see - the pain, starting mental problems and refuse to eat make this situation unacceptable to wait.

Tig · Admin

Hi Anastacia,

I'm sorry Alex is feeling so poorly, but it sounds like he has a number of issues that explain why. The inguinal hernia is painful when they get so pronounced. I have had multiple repairs over the years. Interestingly, there is also a procedure to repair them that is also called a TIPP (Transinguinal Preperitoneal Technique) that can be done under local anesthesia, which would reduce his operative risk and allow a repair to be done sooner than the transplant schedule. But this is all going to depend on so many other factors. The fact he's in such ill health right now places that kind of surgery on the back burner. He needs to get his current liver crisis under control first.

I don't know whom is handling Alex's care, but there are many excellent centers in the DC area. George Washington University, Georgetown Transplant Institute and Johns Hopkins are among the worlds best. Here is a link to the Johns Hopkins center, contact them for advice. There is a coordinator on duty all the time.

http://www.hopkinsmedicine.org/sibley-memorial-hospital/patient-care/specialty/gastroenterology-hepatology/hepatology-multidisciplinary-center.html

I think Alex needs to be seen as soon as possible. He should in my opinion be hospitalized and given a full work up by these specialists. Good luck.

Cinnamon Girl · Guru

Hello Anastacia,

Thanks for posting the photo so that we can understand better what is happening. I`m so sorry, your husband must be in a huge amount of pain and distress and my heart goes out to you both. He clearly needs very urgent medical attention and I`m glad his friends are taking him to the hospital again today. I really hope he will agree to go with them and get the care and treatment he desperately needs and deserves.

Please keep in touch and let us know what happens at the hospital. Your good friend `Malekula Man` mentioned that your husband has a good medical insurance plan and I hope this helps.

I`ll be thinking about you both, and send all good wishes for the best possible outcome. Jill

Anastacia · Newbie

Hello. I'm the wife. I apologize for my bad English.

Tig56, It's not a strangulated bowel. My husband has a hernia for almost a year. But the last 4-5 months it was just awful. He don't gets up from the bed almost. This is a very painful and agonizing for him.
I don't know how to describe it. I found a photo on the Internet, my Alex has the same hernia (sorry for the nasty photo).

When it was taken to the hospital for the last time, he told the doctors that did not go to the toilet for 3 days. And that doctors told him earlier that he needs to go to the toilet 2-3 times a day when taking lactulose. They took him on CT and said that they see a complete lower intestine. Then they said that no barriers in the intestine is not, and he himself will be able to go to the toilet. And sent home. They said to eat more..... They never even made him an enema...

Tomorrow friends will take him to the hospital. But he doesn't want to go. He repeats that it is meaningless that doctors are not going to do anything, like last time.

P.S. Yes, Transjugular Intrahepatic Shunt. After the operation Alex has changed a lot. His encephalopathy progresses. He doesn't sleep, confuses words and stares at one point a long time. My husband has always been steadfast and strong. And now he constantly repeats that this is the end. He says he knows that he will die soon.

If you know where I can find help, let me know please. Alex is only 39 years old.. Recently he was physically strong, cheerful man. And now he is fully disabled person.
His doctor tells him constantly that his transplant will be not soon because his MELD score is only 20. But he won't live long. His platelets 25, total protein 4,4 and many other bad indicators. He's very weak.

Tig · Admin

Hey MM,

Your friend sounds like he's in serious condition and needs to be hospitalized immediately. If he is a decompensated cirrhotic, with all of the complications you mentioned, he's gravely ill and shouldn't be waiting for a resolution over the phone that may not come. Time is of the essence, if he has nobody there that can get him to the hospital, call 911. If he isn't eliminating, has a visible intestinal protrusion from an inguinal hernia, and his belly is blowing up, he probably has a strangulated bowel. He can die quickly, call 911 now. This isn't something to take lightly. Let us know what happens. I wish him the very best of luck, he needs help now.

PS: You mentioned TIPS. Are you referring to the "Transjugular Intrahepatic Shunt"?

malekula man · Senior Member

Thanks

Brian1412 · Guru

I will make some calls. ..

malekula man · Senior Member

Hello everyone,

I'm in Canada, I don't know how it works in US, so here's the story.

I need an advice.

I have a friend in Maryland near DC. He was undergoing Harvony therapy (likely EOT and +16wks still UND ) when he got TIPS, since he already had a decompensated cirrhosis, a strong ascites and started developing inguinal hernia. He is waiting for the transplantation, but even though his MELD is not the most critical one, he is getting weaker day by day. Due to TIPS he's got encephalopathy. The doctors do not operate hernia, since the platelets level is very low and they are waiting for the transplant to do both at the same time, as he won't survive two surgeries. The doctors see his state but don't do anything to advance his transplantation priority. His wife is not in the US, she does not have a legal status there and she had her visa application denied, so she can't be there with him to help. The guy gets help from strangers, but people have their own lives and their patience is not infinite. His wife says that in fact he's dieing. He's feeling worse. He almost does not go to the bathroom. A week ago a doctor said to call in 2 days and prescribe an enema in case if after higher dose of polyethylene glycol (laxative) and lactulose things would not get better. He did not call. People who are taking care of him wrote to the nurse about it, and she said that the doctor told her to add another laxative. This way takes 3 different laxatives now. He's getting all the elements washed away from his body, this can be seen in the tests but he still doesn't go to the bathroom. His intestines are falling into hernia and get clamped and he's got a huge belly because of its. He refuses to eat since yesterday, he crying that he can't eat anymore, that he is about to blow up if he has a piece. He is dystrophically thin now and take care of himself. In addition to that he started having mental difficulties and being inadequate. No one does anything. His wife is asking if there are any organizations in Maryland or DC (he is in the Georgetown University Hospital) who could help draw the doctors' attention to the horrible state of health he's in. He's got an expensive insurance paying the expenses, but it looks like the doctors have given up.

I did look up fot the organizations myself but ended up finding only ALF (American Liver Foundation) which directs me only to that same Georgetown University Hospital.

I found the hospital's ombudsman contact and sent it to his wife, so she could talk to him and figure out what to do.

So this is my request, please tell me which organizations/foundations can help drawing doctors' attention to a patient like this and save his life. I am asking for links to the patient advocacy organizations. I will transfer this information to his wife and try to help him.

Thanks,

MM

-- Edited by malekula man on Sunday 16th of August 2015 05:23:53 AM

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