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amyintucson
@amyintucson

Posts: 29
Joined: Feb 07, 2018

Banding Esophageal Varices

Posted by @amyintucson, Sun, Aug 26 11:51pm

I have been dealing with liver cirrhosis and its side effects since 2008. Had yearly Upper Endoscopes to check on varices, then in late 2014 I had to have several varices banded to prevent them from bleeding. Since then I have 10 different procedures to band several varices each time, the last one on Thursday. It's getting more upsetting each time, as I feel my options are dwindling. I have to admit that my doctor and the local Hospital GI Lab take great care of me. Any other liver transplant list folks going through numerous esophageal varices banding?

Liked by jeanne5009

REPLY

Hi, @amyintucson. It is a pleasure to hear from you, but I sure wish it was under other circumstances. I am so sorry to hear your multiple episodes of banding your esophageal varices. We both know that dealing with cirrhosis and waiting for a transplant are more that anyone could wish for.
I am a liver and kidney recipient. Both at same time. When I was pre transplant, I had one episode of banding, That was almost 10 years ago, so forgive me if my memory is foggy. After I was admitted to the hospital, the doctors were ready to take me into surgery for the procedure at any moment (it was a Saturday morning – day before Easter Sunday) I was put on a clear liquid, sodium free diet (yuck). I was closely monitored, and my symptoms subsided, and so the procedure was scheduled for Monday. I needed to have 7 varices banded, and it was discovered that they were oozing blood. I think we were lucky to discover it and to act on it. I was very uncomfortable afterwards. I remember that it was a frightening experience.

My transplant team monitored and always emphasized the importance of reporting any tarry stool. I remember that there was great emphasis on keeping BP low enough, but not as low as it had dropped during my acute kidney failure episode.

I honestly do not know about options. What does your transplant team say? Do you get hospitalized each time?

The Transplant team is aware of the problems and concur with my local GI's treatment/banding. I have not had to be admitted because they have not bled, but my procedures are all done as an outpatient at the hospital in case of complications. The team at the hospital GI Lab are all my friends now! Not looking for any options as this is the best that can be done, just worried about the location of these recent ones as they were not existent 6-8 weeks ago and they are higher in the esophagus. I have follow-up appointments at Mayo in about 10 days and we'll see what's up then. Just curious if there were any others like me out there.

Because of the varices, they cannot start anti coagulation therapy to help break up the thrombosis in the superior mesenteric vein and main portal vein. Just another complication to the problems. Nobody ever said I was ordinary!?!

I appreciate the support here, just wish I could provide help to others. Maybe that is something I can do more of post-transplant, after our celebration trip to Alaska. Dates TBD

Liked by jeanne5009

@amyintucson

The Transplant team is aware of the problems and concur with my local GI's treatment/banding. I have not had to be admitted because they have not bled, but my procedures are all done as an outpatient at the hospital in case of complications. The team at the hospital GI Lab are all my friends now! Not looking for any options as this is the best that can be done, just worried about the location of these recent ones as they were not existent 6-8 weeks ago and they are higher in the esophagus. I have follow-up appointments at Mayo in about 10 days and we'll see what's up then. Just curious if there were any others like me out there.

Because of the varices, they cannot start anti coagulation therapy to help break up the thrombosis in the superior mesenteric vein and main portal vein. Just another complication to the problems. Nobody ever said I was ordinary!?!

I appreciate the support here, just wish I could provide help to others. Maybe that is something I can do more of post-transplant, after our celebration trip to Alaska. Dates TBD

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amyintucson, You are absolutely correct about not being 'ordinary'! You are special!
I send you to Mayo with my thoughts and prayers.
Early in my liver disease diagnosis and treatment, I remember being told that we can have different symptoms with pour liver diseases. There is no 'one size fits all'. This is even true for those who have been diagnosed with the same disease.

As far as providing help to others – I believe that you are already doing that, because when anyone reads your posts, they can feel the power of your determination and your positive attitude.
A celebration by taking a trip to Alaska sounds like a worthy goal and something to look forward to. (Did you know that my husband, also proposed the idea of a trip to Alaska after my transplant? When I was fully recovered, we made that dream come true.) Hang in there because It will happen when you least expect it:-)

Would you send me an update after your appointment?

Your spirit will guide you and give us waiting…HOPE.

I'm in Cali for a weekend fused glass class – making a morning glory stem and a dragonfly. The beauty of glass has always intrigued me and I started working with the medium about 7 years ago. I'll try to post pictures of the finished project to add a touch of color!

@amyintucson

I'm in Cali for a weekend fused glass class – making a morning glory stem and a dragonfly. The beauty of glass has always intrigued me and I started working with the medium about 7 years ago. I'll try to post pictures of the finished project to add a touch of color!

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@amyintuscon
Would love to see your glass work.We have the Chihuly museum here in Tampa…Im a big fan

My last EDG I was prepared for banding..but nothing was bleeding….yet. This next yr. may be different…..Im only Meld 7 so no one is too excited yet…except me.

@amyintucson

The Transplant team is aware of the problems and concur with my local GI's treatment/banding. I have not had to be admitted because they have not bled, but my procedures are all done as an outpatient at the hospital in case of complications. The team at the hospital GI Lab are all my friends now! Not looking for any options as this is the best that can be done, just worried about the location of these recent ones as they were not existent 6-8 weeks ago and they are higher in the esophagus. I have follow-up appointments at Mayo in about 10 days and we'll see what's up then. Just curious if there were any others like me out there.

Because of the varices, they cannot start anti coagulation therapy to help break up the thrombosis in the superior mesenteric vein and main portal vein. Just another complication to the problems. Nobody ever said I was ordinary!?!

I appreciate the support here, just wish I could provide help to others. Maybe that is something I can do more of post-transplant, after our celebration trip to Alaska. Dates TBD

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Keep me posted..Im shadowing..kind of.

@amyintucson , I hope that you learned something positive at your recent Mayo visit.

How are you doing? Did you get to go to your glass class in Cali?

@rosemarya – I did get to the class in Cali, but truth be told, I've been pretty exhausted since then so haven't taken any pictures yet. I'm posting a picture of a plate I made a few years ago, just to add color!

I was at Mayo on Tues/Weds, 9/11-12. They wanted me to have an Upper Endoscopy there so they could see the status for themselves, so I was back in Phoenix the following Tues/Weds, 9/18-19. They did find another varix, but not advanced enough to band so they want to start the anti-coagulation. My sister and brother-in-law were here the following week so I didn't pursue that week, but I need to get back to it. Nothing is simple in medical care these days, but I'll get there. I'm concerned, but just have to get through it and be careful. I figure I'm Arizona bound for awhile until I get stable.

I am blessed with good health insurance, which many, sadly, are not. I so appreciate the support from everyone here, those at Mayo Clinic and all my local Tucson doctors.

Here's some of my work. The hair color is the work of my Hair Stylist!

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@amyintucson

Here's some of my work. The hair color is the work of my Hair Stylist!

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Awesome! The colors are so cheerful. I can imagine that you have this beautiful dish in a prominent place in your home. I can feel the power and the uplifting mood just by viewing this photo.
I am fascinated by the free form tree! I love trees. I like to observe then interacting with the sunlight, and swaying in the breeze.

I have every confidence that you will return to your glass art with a renewed passion in the future.
PS – The pink hair is kind of cute! A fun touch of creativity:-)

Liked by amyintucson

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