Mayo Clinic Connect
I had a TIPs procedure 15 mos ago to control portal hypertension, ascites & bleeding. I have been fine since then & no longer qualify for a transplant . How long have others TIPs shunts lasted ?
I want to welcome you to Mayo Clinic Connect and to thank you for reaching out to this community with your question.
I am a transplant recipient (liver/kidney) and I had to look up TIPS ( transjugular intrahepatic portosystemic shunt) because I was unfamiliar with it from my own experience. As I was reading, I did learn that it is a procedure for diverting blood flow away from the portal vein. A shunt creates an opening between the portal vein and the hepatic vein, which carries blood from your liver to your heart to reduce pressure in the portal vein. It often stops bleeding from esophageal varices. https://www.mayoclinic.org/diseases-conditions/esophageal-varices/diagnosis-treatment/drc-20351544
As for myself, I did have esophageal varices, and they were closely monitored by my doctors prior to my transplant. I took medications to reduce the blood pressure and I needed to have elastic banding when I experienced some bleeding.
Your situation sounds positive because you have said you have been fine. While I wait with you to see if anyone has an experience to share about TIPS, I would like to ask if you were a candidate for a liver transplant before the TIPS? Do the doctors say whether you will be a liver transplant candidate in the future? What kind of follow-up is provided?
Hi @seho, I'd like to add my welcome. You'll notice that I modified the title of this discussion to include TIPS in the title. I did this to be more specific to the question you're asking.
You might also be interested in this discussion:
– Portal vein https://connect.mayoclinic.org/discussion/portal-vein/
Lisa (@techi) talks about her experience with transjugular intrahepatic portosystemic shunt here: https://connect.mayoclinic.org/discussion/portal-vein/?pg=2#comment-81579
Like Rosemary, I'd be interested to know more about the follow-up care.
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Thank you for your reply. I too have had my esophageal varicies banded. The TIPs reduced the portal pressure so that I no longer have bleeds. The TIPs also controlled the refractory ascites. I no longer take Xifaxin just Lactulose daily & vitamins. I see my hepatologist now only twice per year & have annual MRIs & lab work to monitor liver functions, sodium levels etc. My amonia levels are normal. I am not a candidate for transplant now because I’m too well. I’m just wondering how long the TIPs shunts can last? They can be revised & replaced if needed. Does anyone have a TIPs shunt & has not needed a transplant ?
@seho I also would like to welcome you to Connect. I, like @rosemarya, did not know about TIPS despite having had NASH cirrhosis and a transplant in October 2016. What was the cause of your need for a transplant?
I had no idea that something like the TIPS procedure could improve things to the point where the ammonia level would return to normal and you would no longer need xifaxan. I was on lactulose, then xifaxan, and then when HE episodes resumed after almost a year I had to resume taking lactulose with the xifaxan.
I had very minor esophageal varices. I was put on a medication but it made me very sick (I had problems with a number of medications). They said I could stop taking it if I had to but they explained that if I did I could have a bleed. I never did bleed.
Prior to the TIPS procedure, what was your MELD? I am happy for you that you are no longer a candidate, and I hope you are feeling much better along with the improvement of your condition.
I'm just at the beginning of a possible transplant journey, so I'm still attempting to grasp all the terminology. I was diagnosed in Las Vegas with a minor stroke (even though EEG's and MRI's showed nothing) and sent home after 4 days. Then the next day I got worse and my wife called the ambulance to Transport me to our Level 1 Trauma Center. Again the same tests/results and I was shipped of to a Rehab Center. As I Entered an altered state (3 weeks from the beginning) everyone became concerned, especially once I slipped into a coma. Back to the first hospital, where after 4 days they finally tested for Ammonia Poisoning – and it was severe. After a Liver and Kidney biopsy I was told I had non Alcoholic Cirrhosis of the liver and only 18% of Kidney Function. Other things happened like paracentesis, etc. and I told my doctor I have lost trust in Las Vegas Medical Care and was going to the MAYO. The MAYO within one day diagnosed what I was unable to get in LV in 2 years. I hope I'm approved for a Kidney/Pancreas/Liver transplant and I'm willing to take this calculated risk. I would love to hear from someone that has been down this road and provide insight from a patient perspective. BL
PS I have no idea what caused the initial problem, my main concern is to have a quality of life for the rest of my life.
Liked by JK, alumni mentor
I am a transplant recipient, and I am enjoying a quality life since my own transplant. Organ transplant is a seriously complex surgery and it requires that patient and medical team work together both before and afterwards.
My suggestion for you is to find a doctor whom you trust and work with him concerning your current diagnosis, and your current health requirements. You must do your part by taking care of yourself according to those recommendations.
Liked by JK, alumni mentor, amyintucson
Hi @benlam11 and welcome to Connect. I am a liver transplant recipient and life has been very good since my transplant in October 2016.
I also went a for a long period of time (about a year and a half) with no diagnosis, despite what I discovered after should have been obvious signs and red flags. The issue that initially caused concern was an HE episode on Christmas Eve, 2013. It caused me to be very irrational. My husband wanted to take me to the hospital but I wouldn't go. My daughter was here so she called for an ambulance and I ended up going. The EMTs thought it might be a stroke. The ER doctor thought it was fatigue, deyhydration, and a few other minor issues. By the time I saw him I was actually getting back to normal.
I never had an HE episode bad enough to put me in a coma, but I know that can happen. I did have one that left me pretty unresponsive, and I ended up in the hospital a few times. The PCP I had at that point called me and told me that she thought I had Alzheimer's! As soon as I could find a different PCP I changed doctors.
After my first HE episode my doctors were searching for a diagnosis but somehow never added up the symptoms I had before that — declining platelet counts, shaky hands, recently diagnosed diabetes, sleeping problems, and fluid retention in my feet and ankles. Those were the symptoms that my PCP knew about. There were others that I never thought to mention such as being cold all of the time, and horrendous cramps in my thighs. Because of the HE episodes I went to a neurologist and when I was in the hospital recovering from an HE episode he suggested liver, and they did an ammonia test. Non-alcoholic cirrhosis was diagnosed. I was prescribed lactulose initially to help with the HE episodes. When I got to Boston, the hepatologist prescribed xifaxan which kept me from having an HE episode for almost a year. When I did have one again I had to resume taking lactulose along with xifaxan because that was a sign that my liver condition had worsened.
I then went to Boston for treatment. I live in southern NH, so Boston is about 55 miles down the highway. What I learned from my experience was if I ever go for any length of time without a diagnosis I will definitely head to Boston to one of the major medical centers. My hospital of choice there is Mass General (MGH). I waited almost a year and a half to get a transplant, and during that time MGH tended to my medical care excellently. I love that hospital and now go there for pretty much everything except for my PCP.
My liver and pancreas were not effected so that was not an issue. Now I do have monthly lab work to make sure all is good, and so far it is.
Are you now going through testing at Mayo to determine if you are eligible for a transplant? I presume you must be. Please keep us up to date on how that's going, and feel free to ask any questions we might be able to answer.
Liked by Rosemary, Volunteer Mentor
I have 2 Excellent Doctors in Las Vegas plus more at the MAYO. I did fire 4 prior doctors in Las Vegas for I felt that they looked at me as little more than a meal ticket after "treating" me for several years. If you suspect that your condition is not fully explainable or there are missing links – everyone should go to a major research institution as it's their specialty to solve puzzles. I'm very happy with The MAYO and have met people in Las Vegas that are also extremely happy with their diagnosis and treatment at the MAYO after spending years in the Las Vegas Medical Death Spiral.
Liked by Rosemary, Volunteer Mentor, JK, alumni mentor
When diagnosed my MELD score was 26. I was critically ill & the diagnosis took a while. Medications restarted my kidneys without dialysis. My MELD score post TIPs is now 6. My hepatoligist has told me improvement of this degree is unusual. I’m prayerful it continues as my quality of life is now good. I was drinking alcohol prior to my diagnosis but no longer drink at all. It is worrisome to think of being that ill again but would be a candidate for transplant if I deteriorate. At this point we monitor & wait to see what happens.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor, JK, alumni mentor
@seho Wow, that’s incredible! I’m so happy for you that all seems are so good now. Would I be correct in assuming that you had not progressed to cirrhosis? I believe if it had not that the liver damage can be reversed. You are so fortunate to have caught it before a lot of damage was done. It is surprising that your numbers were that bad, yet reversible!
I truly am extremely happy for you, such a great outcome.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
@seho, Thank you for sharing your experience. You have given a perfect example of how we are each affected differently, yet we all share identical uncertainty for the future. I can identify with your critically ill factor, and I do not want to re-experience that, either. I am especially happy that your kidneys have reacted positively to medications. I had acute kidney failure along with my liver failure, and was on dialysis while waiting for my transplant.
You have mentioned that you no longer drink alcohol. How difficult was that for you? What are some other lifestyle changes that you have adopted for better health?
@benlam11, Thank you for reaching out and for sharing your complicated and frightening history. I am happy for you that you are comfortable with your current medical providers. How are you feeling? And are there any lifestyle changes that the doctors are suggesting in order to help you actively promote your better health?
Liked by Colleen Young, Connect Director, JK, alumni mentor
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