TIPS procedure

Keith

Welcome to the forum..

My partner did not need a TIPS procedure but did need a transplant.

I will send an email to AZiffle our TIPS poster boy.

MamaLama

Hello Keith, Sorry to see your having Ascites problems. Are you currently taking diuretics and if so have they not been working? Have you had repeated paracentesis procedures done and the ascites keeps coming back? TIPS was my only option to relieve chronic ascites issues. Feel free to ask any questions you may have about the surgery. Mine was done over 4 years ago and was a complete success, I still take medication to battle encephalopathy but no more ascites!!!


Ziff

Hi Keith,

My husband, themister, had TIPS 14 months ago. No revisions or blockage, so far. His was also as a bridge to transplant. Like some do, he developed hepatic encephalopathy (HE). For my husband, it was very soon after TIPS and has been very difficult to manage. Themister is not longer allowed to drive, and is unable to work.

Like Susie, themister also started having lower extremity edema. I must be honest with you. The HE has been the most difficult part of his liver disease journey, and his HE is a result of TIPS. Many people do very well with TIPS. Some do not.

Due to HE, themister had an HE seizure and was hospitalized 3 days 7 weeks ago. The good news is how well my husband is doing since that seizure. The HE has been gone, and life has normalized for awhile.

HE can happen to anyone with liver disease. With, or without TIPS. TIPS was his solution to keep from bleeding due to gastric vertices.

Sorry you are having problems, but happy you found us. Don't be a stranger! Big hugs.

Keith,

Transplant is a big deal.

Do we know if you have Hep C, Hep B, Alcholic Liver Disease, both? Another form of liver disease? Do you know your current MELD score or Viral Load if viral? Are you affected by Hepatic Encephalopathy? Have you considered that you may become confused with HE at some point on this trail and NOT be able to work at full steam ahead?

Many cannot, over time, keep up their regular schedule as the disease becomes quite serious before you get to translant day. Some/most cannot drive over time as their reaction times and the ability to navigate to and from previously easy to find destinations is impaired.

My partner was transplanted at MELD 24 in 2011. He had been pretty much totally disabled for a few years before that. In NY, the MELDs are higher at transplant because there are more in need and not as many donors. Sometimes patients are MELD 30 there...so really ill. WE are in Florida, which has no helmut law...so we have more donor organs...grim I know. Double list maybe...at Mayo, Jacksonville???

Pre-transplant preparation requires a battery of evaluations that are not that difficult, but are time consuming. Some centers will do them in a week..one after another. In my partner's case, he did them a bit at a time over several months.

You will need all or most of these depending on your health. You mentioned a physical condition in your post, so those docs will have to say HEY also.

Transplant Clearance
Nephrology Clearance
Cardiology Clearance
Phychiatry Clearance
Oncology Clearance
Nutrution Clearance
Pulmonary Clearance
GI Clearance
Financial Clearance

Everyone wants you to survive such a serious surgery and will check and double to be sure none of you other systems would crash. They will also check out your insurance to make sure you have coverages as this is expensive.

You wil likely have the following tests

Liver Biopsy
Abdominal MRI and or CT, maybe some USs also
Colonoscopy/Endoscopy
Cardiac Catherization
Renal consultation
Psychiatrist has to know you are compliant and emotionally stable for the surgery -- ie drug and alcohol free and likey to remain so
TONS of blood work -- Mike's TP take down appointment they took 16 vials of blood.

Maybe I forgot some.

If you drink alcohol, you will be required to particiapte in a 6 months alcohol cecessation program -- generally AA, counseling or rehab.

I'm not sure about the timing of the TIPS at various TP centers.

Let's hear from our members and learn if they had to have been cleared for transplant before they received their tips: Ziff, the miz, Susie???

Mike did have liver cancer, by the way, and that did not disqualify him as it was less than 5cm. They could have done a chemoembolization or a radio frequency ablation to shrink the tumor. In Mike's case, they transplanted him before his tumor grew to treatment size. If tumor(s) grow over 5 cm and cannot be treated, they do not qualify.

If you go to the search button on the blue bar above and put in "rcmoonpie" and peek around the posts, you should find a url of her blog about her hubby's transplant adventure.

Please know, that you may need to look after some things as you head toward transplant.

You may not be able to work, though rcmoonpie's hubby returned to your type of work shortly after tranaplant. **David** returned to work as a tile installer at first part time and then full time. Others have not. What will be your Plan B if you cannot? We had a happy life, were retired, had a vacation home..and had to sell our CT home and move into the FL vacation home. And we are not sure how long this will last.

You may become very ill. Is your estate in order, powers of attorney and medical directives in place? Don't leave your family to guess your wishes if something awful happened.

Well, that is a grim note. Please understand that over 95 % of liver transplant surgeries are successful. They don't take chances...if you get listed, you should be okay. You just may be really ill when the time comes.

I hope the TIPS works as well for you as AZIFF, who has been YEARS with it and has staved off transplant all this time.

Best,
ML

Best,
Mama Lama

Keith,

Glad to hear that your "paperwork" is in order. We had one matter to take care of as most were in place already. My partner had my POA and my Medical power of attorney. But he was so ill, he couldn't have found his shoes some days...or the bathroom. His HE was really bad the last six months. So, we had a family meeting with my almost 40 year old daughter and her hubby who is a financial planner for his work and switched out the estate and POAs, set up some trust stuff for a disabled kid, etc. It was important that those things could run smoothly if Mike could not handle if something happened to me.

Though causes of liver disease vary, the course to full decompensation is pretty much the same.

Looks like you took care of the alcohol issue early on! Good news. It was so hard to hve Mike be so sick and not qualify because he had not stopped his cocktails!

Carol

I was already on the UNOS wait list when my docs determined that I needed the tips to preserve my portal vein.

I am almost 8 months post and have not gone back to work. I was disabled in 2008 due to HE. I am slowly getting my physical stamina aback after 6 years of serious illness. I hope if my recovery continues, I may be able to return to some sort of work this summer! I am looking I to vocational restraining as I am not sure I want to return to museum work and the hoards of children.

Keith,

You need to get your sodium intake down to 1 gram per day. I know it's not easy, and you can't do it very easily if you dine out often, or at all.

You must stick to fresh fruits and veggies, chicken, fish, occasional red meat, etc. I'm sure you know what not to eat by now, bread being one of the biggest surprises on sodium levels, canned foods also a no-no in most cases. Try using citrus fruits like lemon, herbs and spices, and products like Mrs Dash to keep those sodium levels low.

If you stick to 1 gram or less, you should see an improvement in the ascites department.

All the best,

H2princess.

I am going to copy your post into a new thread as you are new and we can likely help you, but sometimes OLD threads get ignored...you are buried down the bottom of a post that has not been active for a couple of years.

I'll lock this one and you and others can post in the new thread.

Find it at www.healingwell.com/community/post.aspx?f=25&r=n

Moderator, Mama Lama