After waiting over 9 months for Liver Transplant assessment I'm offered a TIPS by the transplant team. They say they are not ruling out transplant in the future but that a TIPS can improve my quality of life (Acities fills me up every week and I have a drain once a month) but Ive yet to find out the long term plan...If there is one.
Has anyone experienced this scenario and what effect has TIPS had?
Regards
Paul Hawkins
Whilst TIPSS is excellent at reducing the need for regular draining it probably will only delay the need for transplant.
Sadly one of the major side effects of Transjugular intrahepatic portosystemic shunt (and it can happen very quickly) is an increase in the chance of suffering increased or worsened symptoms of Hepatic Encephalopathy as blood is channelled quickly through the liver and doesn't get de-toxified and therefore toxins build up in the body and brain leading to HE.
I would want to ask them what the plans would be if you had TIPSS but then started to suffer badly from HE? Will they then assess you for transplant or indeed would they do so now before the TIPSS. You don't want to delay transplant listing as you want to be fit enough to undergo transplant when needed and not wait too long.
Katie
I also heard that having TIPS can stop you getting a transplant? I could be wrong?
No, definitely not the case Brett, we have several members who have had TIPSS then gone on to transplant. Only thing is we have also had members who have had strokes following TIPSS and it has been the stroke that has stopped them having transplant.
Katie
My goodness Katie you never cease to amaze me with your knowledge!
I had a TIPSS procedure done two and half years ago. Mine was done to help with bleeding varacies. I’ve met several people who the TIPPS procedure worked really well for. Unfortunately I went on to develop HE and had two bad episode. My Hepatic encephalopathy is controlled with lac tulose and Rifaximin. My bleeding varacies returned within six months and I was assessed and put on transplant list in January this year. So from my experience it works for lots of people, it wasn’t right for me, like everything it does have its risks but it shouldn’t effect whether you go on the transplant list if that’s ultimately what you need. Good luck
What is TIPS?
The full name is further up the posts. You can google it and get more info.x
Whole new dictionary of jargon to learn. Ayrshirek has pointed me in the right direction. Thank you
Transjugular intrahepatic portosystemic shunt (TIPS/TIPSS)
Transjugular intrahepatic portosystemic shunt (TIPS) is a procedure to create new connections between two blood vessels in your liver. You may need this procedure if you have severe liver problems.
This new pathway will allow blood to flow better. It will ease pressure on the veins of your stomach, esophagus, intestines, and liver.
Normally, blood coming from your esophagus, stomach, and intestines first flows through the liver. When your liver has a lot of damage and there are blockages, blood cannot flow through it very easily. This is called portal hypertension (increased pressure and backup of the portal vein). The veins can then break open (rupture), causing serious bleeding.
When portal hypertension occurs, you may have:
- Bleeding from veins of the stomach, esophagus, or intestines (variceal bleeding)
- Buildup of fluid in the belly (ascites)
- Buildup of fluid in the chest (hydrothorax)
This procedure allows blood to flow better in your liver, stomach, esophagus, and intestines, and then back to your heart.
Hope that helps.
Katie
Thank you ever so much Katie for your detailed reply, very kind. I struggle with most abbreviations due to having dyslexia. I rarely use them myself, unless I'm sure the people I'm communicating are familiar with the terms.
I really appreciate your reply, you've been very, very helpful.
Thanks Shazz
I was having drains every 2 weeks. I was assessed for transplant but due to other medical issues was told I wouldn't survive the operation. I was referred to a consultant to discuss TIPS. By then my drains were down to monthly. I decided after considering the risks involved to wait till absolutely necessary. I had changed my diet and my iron also reduced ( I have Haemachromatosis also.). My drains went to 6 weekly and reducedamoubts. My masters in was in March. Although I went in May and July there wasn't enough to drain. I know everyone is different. But I hope this helps
Hi, I had TIPSS in May and so far has been a life saver. My mild increase of ammonia in the blood, which causes HE, is being managed with lactilose.
Hi, Thanks for that.
What do you mean exactly "life saver"...?
How long did it take before you start to feel the benefits?
Does it hurt?
How long did they say you could keep the TIPS in?
Sorry to bombard you with questions.
Thanks again
Paul
Hi, it was a life saver because I was bleeding from my esophagus and the doctors said if it continued in that direction, my heart could stop; each time I bled about 2.5 litters and in 8 months I had 3 emergency hospitalizations and monthly banding of the esophageal varices, total of about 40 bands.
The portal hipertensión improved instantly. The pressure causing the bleeds was reduced to normal the same day. All subsequent banding of my varices that were scheduled, were cancelled
Pain: there was no pain at all; however I experienced heart palpitations after each meal everyday for months after. Not anymore.
According to my hepatologist , the only time they reverse the proceedure is for complications, one being HE. But there are treatments to help with that. Lactulose etc. I am taking lactulose and my ammonia levels are under control.
I had my proceedure done in May this year, and so far it is still ok according to ultra sounds of the shunt , if it malfunctions, they can place a new one
What is your MELD score? I know that score determines the eligibility to place shunts.
I had the TIPS procedure because of a massive bleed. I was still listed for transplant and had it a year later. I had no varicies after the TIPS and luckily had no issues with HE at all.
As far as I was told the procedure does not remove the ultimate need for a transplant, however, it does help prevent ascities and varices while the condition of you liver is monitered
I had TIPSS in Jan 2017 at the Royal Free in London and so far, fingers crossed, no issues. I have Budd-Chiari Syndrome (diagnosed about a week before TIPSS took place) and while I may require a transplant in the future, I haven't experienced any HE like symptoms so far. Prior to TIPSS I had a couple of drains but the ascites built up so fast that the drains weren't really giving me any more than mild relief - since TIPSS, no sign of ascites and due for my next Doppler Ultrasound in a couple of weeks time to check monitor the progress.
The entry route was through my jugular vein and I went under for a couple of hours through the procedure. I can confirm that although there was soreness post-procedure, it didn't hurt during the time (mostly as I was under!) but the benefits were fairly quick in terms of the release of additional ascitic fluid through the procedure and going to the bathroom to get rid of the rest of fluid through the 'usual' way. Post TIPSS I had to have an iron infusion which due to the amount of fluid I had lost, took a fair amount of time, but the TIPSS can be for life dependent on progress. I am aware of a few others that have my condition for whom TIPSS has worked, whereas for some it worked for a period of time after which a transplant was necessary.
For me, it has been a great improvement in terms of being able to sleep better, be more mobile and (eventually) return to work - which given my age (31 at time of TIPSS) was something I was keen to do. My personal experience has been positive but I knew that had I refused to undergo a TIPSS procedure, a transplant is an altogether bigger and more complex procedure and if it was/is needed then hopefully TIPSS would have at least improved my condition in the interim to get me well enough for a transplant. Also, if it went well (which it has so far), then no drains would be necessary for a long time - I can confirm I have had no drains since TIPSS.
I hope this helps and addresses some of your queries/concerns. Feel free to message if you have any questions.
Best of luck and keep well!
Excellent. Thanks for that
I had my tipps when I was in a coma so it literally saved my life 😊
But I did end up with h.e. and ascites within a year .... Another positive is I didn't have to have regular endoscopies but I ended up having one about 2 years later with banding performed and I got a blood clot in the tipps ...
I think it's a good solution for a short time but definitely not on a long term basis most I know who had suffered some symptoms ... But again it gives you peace of mind concerning bleeding varices
Yes! peace of mind. Before the TIPSS, I was petrified of burping because of the fear of finding out it was my esophagus filling with blood, then came the panic, then came the ringing of the ears, blindness and ultimately the hospital stay; each time longer and longer stays and bigger amount of blood loss... sorry for the graphic comment.
I'm so glad to read all these comments, as this is my husbands next step. Thank you all.x
This has been really useful. Hubby in for 2nd drain in 2 months so now I can see there are options.
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