Tried so many things - now at Mayo & STILL Frustrated

[sbergie]

Hi, my name is Susan, I have been the caregiver for my husband who on April 3rd, 2013 presented to the emergency room with mysenteric venous thrombosis with all 3 pathways blocked, mysenteric ischemia, gastric and esophageal varices, alcohol related cirrhosis and portal hypertension.  A month prior to this we were living in bliss with no idea of what was to come - no real health problems existed.  He was hospitalized for 2 weeks then sent home on Lovenox and told to follow-up with a GI.  After being home for 2 days he started having severe abdominal pain and we rushed back to the hospital - they found additional clots - this time in a different circulatory system causing kidney damage in 1 kidney but the other was not damaged but did have clots.  He was again hospitalized for 2 weeks and dishcarged on lovenox.  Eventually Coummadin was started and within a couple of weeks he started profusely vomitting blood, he was lifeflighted to the hospital where they added Nadolol - said his bleeding was not related to varices but that his portal hypertension had caused the stomach lining to bleed.  They took him off all blood thinners and within 2 months returned to the hospital with excruciating abdominal pain - mysenteric venous thrombosis had returned - this time only 2 were blocked.  Sent home on Lovenox and Nadolol - this time they added high levels of pain medications to take on a regular basis.  My husband and I are both in recovery and have been so for almost 20 years - he has not had a drink this entire time.  The pain medications seemed necessary but concerning.  Approximately a month later he started throwing up again - back to emergency room - they did a scan and said he had gallstones.  They did an ERCP and could find no gallstones?  Eventually he stabilized and was sent home - on MORE pain medications.  2-3 days later he started spiking a fever (102-103) - back to Houston Medical Center branch this time - started on multiple antibiotics, had numerous teams yet no one could determine source of infection - thought to be related to the ERCP.  Developed hiccups that lasted about 1 month, had 3 spots on his liver, liver biopsy done - no cancer detected but found granulomas, discharged home and by now have too many pain medications.  Have a hepatologist and was orginally told that "Absolutely - I can tell you what is going on and give you a plan of action - shame on those doctors that haven't give you a plan of action."  By the end of the last hospitalization he's scratching his head and saying how unusual his case is an he just doesn't know what is causing all the problems.  Was originally told transplant but then was informed that his liver enzymes are still functioning well at times to prevent us from being placed on liver transplant list and they just don't know why he is hurting so much - they refer us to a pain management center.  By this point I am beyond frustrated - friend suggested Mayo Clinic in Minnesota can figure out everything - so here we are and the first thing they do is put bands on his esophageal varices - good but I could have gotten that done in Texas.  Since being banded he has been hospitalized x 2 for uncontrolled vomitting - he is unable to take the pain medications that everyone has precribed him and now is going into withdrawals.  What do they do - add an additional "Break Through" pain medication and send him home.  I have been told that abdominal pain is a mystery and that he will always have to be on extremely high doses of pain medications - no treatment - no cure.  REALLY - can that possibly be true?  I'm desperate, tired and extremely frustrated.  We are due to go back home tomorrow night - I have 2 children at home that want their daddy back!  Can anyone help us?????

[Dee1956]

I Just saw your post and am so very sorry for what you are experiencing.  It must have been very scary and frustrating for you.  You are right that the people in Texas should have banded his varices.  I think I read where they said he did not need that.  It almost sounds as if your husband has several problems going on at the same time so that it is difficult for them to see the forest for the trees.
I am surprised that when you husband started vomiting blood that they did not immediately handle the banding but I guess they were trying to put out the fires as fast as they could.
I hope you can get some good consistent help.
Take Care
Dee

[nan535]

Great response, Randy.  I think that will be helpful to Susan. It's so important to have an understanding of what's going on in order to better deal with it.
I think your post will help.

Nan

[rpooo]

Hello Susan and welcome to MedHelp. I am sorry you and your husband have been thru so much lately. The amount of frustration you must be feeling is simple to fathom.

Here is some information I found: http://www.nlm.nih.gov/medlineplus/ency/article/001157.htm

Causes
Mesenteric venous thrombosis is a clot that blocks blood flow a mesenteric vein, one of two veins through which blood leaves the intestine. The condition interrupts the blood supply to the intestine and can result in damage to the intestines.
Mesenteric venous thrombosis has a variety of causes. Many of the diseases that lead to this condition cause swelling (inflammation) of the tissues surrounding the veins, including:
• Appendicitis
• Cancer
• Diverticulitis
• Liver disease with cirrhosis
• Pancreatitis
Patients who have disorders that make the blood more likely to stick together (clot) have a higher risk for mesenteric venous thrombosis. Birth control pills and estrogen medicines increase your risk of this condition.
Symptoms
• Abdominal pain, which may get worse after eating and over time
• Bloating
• Diarrhea
• Fever
• Gastrointestinal bleeding
• Vomiting
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I think at this point the focus of his treatment needs to immediately go to mysenteric venous thrombosis  despite the conclusion that it is under control. More pain medication is not a very practical treatment for persons with cirrhosis since most pain medication will cause liver disease to advance.

Also try MedHelp’s Deep Vein Thrombosis, they might be able to help too.

http://www.medhelp.org/forums/Deep-Vein-Thrombosis/show/1220


Randy

[sbergie]

Hector, sorry if I misunderstood - we were informed that this was all directly related to his cirrhosis.  I've just been so lost in this whole thing.

[HectorSF]

I am sorry but this forum is for discussion of cirrhosis and people's experiences with advanced liver disease. abdominal pain  and MVT are not something we are experienced with.

I hope you do find help for your husband.
If you have questions about his cirrhosis we are happy to share our experiences and knowledge.

Best of luck.
Hector

[sbergie]

Thanks Hector, the mysenteric venous thrombosis is under control right now - his main problem has been the severe abdominal pain which is not to believed to be related to the msvt.

[HectorSF]

Please read Mayo's page on Mysenteric venous thrombosis (MVT)
Mayo Clinic Proceedings
Volume 88, Issue 3 , Pages 285-294, March 2013

http://www.mayoclinicproceedings.org/article/S0025-6196(13)00069-4/fulltext

I think it will explain the condition to you and better help you to understand what is happening.

Best of luck to you both!

Hector

[Advocate1955]

Sorry, I just re-read, and had missed the part where he was originally told transplant and then told liver enzymes were functioning too well.  I would ask to re-visit that with the hepatologist.  One's MELD score can change fairly quickly with changes in health status.  What is his current MELD?
Advocate1955

[Advocate1955]

I am definitely not the expert on this forum, so hopefully Hector or Randy or someone else who has more knowledge than I do will chime in soon.

However, I can say that many of the symptoms and complications you are describing are related to his advanced Cirrhosis.  Unfortunately his Cirrhosis is causing many of these problems, either directly or indirectly.  

I'm glad he is being treated by a hepatologist, presumably at a research based university medical center, since that is where one usually finds a hepatologist.  I would imagine that the hepatologist practices in or near an associated liver transplant center.

Has your husband been diagnosed with End Stage Liver Disease (ESLD)?  Has he been assessed for a possible liver transplant?

In the meantime, he should be monitored very carefully by his hepatologist for his portal hypertension and his bleeding varices.  He should also be monitored for edema, ascites, and Hepatic Encephalopathy to prevent those from developing or to treat them if they do.

Unfortunately the struggle with advanced Cirrhosis and ESLD often include many life threatening situations, trips to the ER, and hospital stays.  I haven't had this first hand experience, but I'm sure it is very painful and difficult watching your husband suffer and being his care provider.  I hope the hepatologist or someone in the transplant center will be able to guide you in next steps:  appropriate nutrition, possible transplant, possible hospice care, disability coverage, planning for the future, and short and long term prognosis.

Advocate1955