Do The TIPS They Said, It Will Be Fun They Said

TIPS

What is this you ask?  The actual description is Transjugular Intrahepatic Portosystemic Shunt. It’s a procedure that is used to reduce portal hypertension, and fluid buildup.  Let’s discuss.

A few posts ago we discussed all the fluid drains I was getting. My doctor keep saying, we really should be doing a TIPS procedure on you. His words were always, “I’ve had patients that have had this and lived for years without needing a transplant”. One thing people need to learn about my husband and I is we remember everything we are told. 

I was actually admitted to the hospital on May 29, 2018, not the date of my journal entry. (That was when I finally passed my 6 min walk). Once again the doc was trying to talk us into the TIPS. The hubster and I were now fighting over should I or shouldn’t I. He didn’t trust it. You should know he will research everything that happens medically. I was so tired of getting fluid sucked out of my body. I finally used the “my body, my decision” saying, so begrudgingly he gave in. 

TIPS PROCEDURE #1

On May 31, 2018 I had the TIPS procedure done. This picture is what your veins look like before. 

The procedure involves bypassing a percentage of blood passing through the liver. The shunt goes from the portal vein into the hepatic vein.  This is done to reduce pressure buildup on the venous system. After they put the TIPS in it looks like this below (green). 

This is what the shunt looks like. 

Now I have to talk about what happened during the procedure. First of all, the nurse had dropped the vial of medicine to put me out. The doctor was telling her to get another one stat because they were ready to start. They finally got it into the IV but it didn’t work. She started going into to my jugular vein. I started screaming in pain. It was the worst pain I’ve ever felt. I kept screaming for them to stop but they didn’t. I don’t know if I finally went out, or if it was over, but I just wanted my husband. 

 Because of all the other things I was going through, I wasn’t released until June 12, 2018. I was put back on the transplant list as active. 

All through the summer I did ok. But then I started retaining the liver fluid again. Noooooo. On September 11, I had a doctors appointment where I complained about it. It was decided that they would have the TIPS doctor go in and look at it. 

TIPS PROCEDURE #2

On October 11th, she went in, to do a revision, and it is noted on my surgery report that there was a large caliber varix (varicies) that was stealing flow away from my main portal vein. It was catheterized, and an angioplasty with balloon was done. Can you say, What The Hell???

I was sent home because it was an outpatient surgery. Later that night I developed a fever and chills, and couldn’t breathe. Oh joy, trip to the ER. After a CT scan it showed that I had tons of fluid in the sacs on both sides of my chest. They did a thoracentesis and sent some of the fluid to be cultured. It was also determined I had Pneumonia. I was admitted to the transplant floor which we lovingly call our Time Share. I was released two days later. 

Was this my last TIPS procedure? Oh heck no!! On December 19th I was in for another one, PROCEDURE #3, because I was having fluid sucked out yet again. As per the newest surgical report, it was because of a MALFUNCTIONING TIPS. You read that right. Within a 6 month time frame, I had three of these procedures. Normally only one is required. 

Therefore, if any of you ever need a liver transplant, and they offer you a TIPS procedure instead, think strongly about getting it. They can be very dangerous. They don’t always work, you won’t live ten years longer (as we were told ), and they are expensive. 

Needless to say I have learned to listen more to my in house doctor, the Hubster. 

Lactulose Is Not My Friend

 

On January 30, 2018 I was officially put on the Liver Transplant List. Even tho I hadn’t quite done all the steps I should have on the 6 minute walk. I got close so they said good enough. 

I was always so cold. I would sit with blankets on and when the sun was coming in the windows I would position myself as close as I could just so I could “feel the heat”. 

They put you on a drug called Lactulose. The cup you see is about the amount you’re supposed to take, in my case, 3 times a day.  It tastes horrible and gives you the worst diarrhea you’ve ever had. They make you take it so you don’t get encephalopathy.  You build up poisons that affect your brain.  ie: declining ability to reason, memory loss and personality changes are a few of the symptoms.  

Journal Entry June 17, 2018

I went to my doctor’s appointment today and he admitted me to the hospital right then and there.  It was because I was suffering from malnutrition and frailty.  I was also put on “status 7 hold” on the transplant list.  This means I’m still on the list but not able to receive a liver until they take me off the hold. 

I so hated the hospital.  I got depressed.  My anxiety got really bad.  I get claustrophobic in closed off spaces. (that’s a whole other story not related to my liver). They even put a sign on my door saying DO NOT CLOSE THE DOOR.  One morning the lab dude closed it when he left.  I laid there and was trying not to go into full panic mode.  About the time I was going to call the nurse, she came in and asked why my door was closed.  I told her and she said I should have called as soon as he did that. I said, “yeah, I can see myself calling and saying ‘they closed my door’.”  They would have got a big kick out of that.  

Right now I’m giving a shoutout to my husband.  I love him so much.  He was there every day. He was there from 8 in the morning till 10 at night.  Three nights he slept there because he was so concerned about me.  He would brush my hair, helped me brush my teeth and helped me get into the restroom before I lost everything.  He also wiped my butt afterwards.  Romantic right?

This includes the night we try to forget.  Sidebar: this is how Lactulose deceived me.  I “got the feeling” that I should get to the restroom.  (Do not ever put that off when on Lactulose).  Hubster and aide helped me off the bed and TRIED to get me to the toilet before I exploded. No such luck. It started streaming out before we got in there but at least we made it to the door. Can’t even tell you in words what me and the floor looked like. The aide put out a “CODE BROWN DRILL”. Three more aides showed up. They got me undressed and into the shower.  I stood there in total embarrassment while they washed me off. Thank goodness they had a hand held showerhead. They used it to get everything down the drain. They tried to make me feel better by telling me about a patient who had a code brown disaster. He was still lying down on the bed and it squirted over the bed and hit the wall. Yikes. CAN YOU SAY WORST NIGHT IN MY LIFE. 

  I think EVERY doctor out there should have to have a ml or two of Lactulose right before they go to the office. You never know when the feeling will hit you. Imagine them in a exam room with a patient, or about to do a procedure. They get that anxious look on their face and try to get out of the room before pooping their pants, or better yet, have it running down their legs, and out of their pants. Oh my gosh, I can’t stop laughing right now. 

Before they would release me to go home I was required to pass the 6 minute walk. Physical therapy would come in and get me ready. The first day, I didn’t pass. I was having a hard time breathing. The next day they put an actual oxygen mask on me. Took hold of the walker and headed out the door. NOOOO. Doctor ‘FATTY’ was standing in the doorway of the room all the transplant doctors and PA’s would work in. He had the worst scowl on his face when he looked at me. He actually asked PT why I had oxygen on.  They said I was a mouth breather and needed it to breathe.  I felt his mind telling me he didn’t want me on the list anyway. Needless to say, I didn’t pass that one either.  

The third day they came in to try it again.  I was so depressed about the day before.  They told me they had faith in me.  Being a visual person, I asked them to show me on the food table how far I had to walk. They showed me that I would have to walk around the whole table and a little bit further.  The hallway in the hospital actually looked just like what I had been shown on the table. I put my big girl panties on and we went out in the hall to do it.  I was bound and determined to pass that sucker.  I called on my guardian angel to help me, they started the timer, and off we went.  I KILLED THE TEST!!! The coolest part was at every nurses station we passed they would cheer me on.  

Needless to say, I was taken off  Status 7 hold and they released me to go home. 

 Once again I slept with my phone by my pillow waiting for “THE CALL”.

Thoughts From My Journal Part One

This weeks post is going to be about my musings from a small journal I started when I was diagnosed with End Stage Liver Disease. 

 March 23, 2018

Today has been a bad day. I couldn’t breathe very well. Got really sick. Had an appointment to check the oxygen level in my arteries. Being a hard stick, they had to poke me three times. 

At first it looked like a vampire bite me. Then tonight it looked like this. (starting to bruise).  After finally getting what they needed, I went to go get the test that shows bubbles in my lungs. I started talking to the tech. It turns out that her kids go to the same Charter School as my grandkids. She even knew them. That is so weird, because of the size of Salt Lake, to have someone know your family, is weird. 

Talk about weird, you should see me walk. I am retaining water in my legs and feet, therefore I have elephant ankles and legs and walk like a zombie.  Keep your kids away from the next pic, it may scare them for life. 

The photo on the right is what my feet look like today. 

March 26, 2018

Today has been a bad oxygen day.  I feel like I’m getting weaker by the day.  Food tastes like crap.  Especially meat.  I’m to the point that I eat soup more than anything.  Especially Pho.  Even my beloved Coke Zero doesn’t taste good.  I’m drinking really super cold ice water.  I’m limited to 2 glasses of liquid per day.

This cup is 550 ml.  I can only have two of these a day. 

I think I might start drinking hot green tea. Coffee just tastes awful anymore. My whole life has changed food wise. My husband keeps me on Boost and protein shakes. The doctors are concerned I’m not getting as much protein as I need. Well, if meat and eggs didn’t taste so awful, my protein would be better. 

I’m depressed today. I don’t like feeling like crap every day. But I do realize I have a very sick liver. I just hope I can get a new one someday. 

March 27, 2018

The best news of the day is they put me on oxygen. I’m supposed to sleep with it and use it when I’m walking. Even around the house.  The only time I don’t need it is when I am sitting.  It’s too much of a pain to take it on and off, so I’m just leaving it on.  The test they gave me the other day that tested the oxygen in my arteries came back as abnormal.  Which means the oxygen levels weren’t what they should be.  Who knew, oh wait, I did.  

April 3, 2018

Today I attempted to make some hamburger vegetable soup.  I got so weak that my husband sent me to sit down.  He did all the cutting of vegetables, frying of hamburger and getting the V8 juice into the pot.  When the liquid got warm I was able to do all the spices.  That even wore me out.  But the soup turned out so good with plenty to freeze.  Which is good because that is all I ever want to eat. The only salad I like anymore is the one you get from Olive Garden.

 I started drinking Diet Coke.  I know, you might want to sit down to get over the shock.  Coke Zero was starting to taste too sweet.  I’m not able to take sweets. 

My life as I knew it 5 months ago has totally changed.  The weight is falling off of me.  I wonder what else is in my future.  

AS-CI-TES, OH OH

DISCLAIMER

 I am not responsible for any throwing up you may do during this post.

 

Ascites, that lovely liquid you get when you have liver disease. Is it just one color?  Good question that you just asked. No. There are different colors which mean different problems. 

Now look at the above mentioned colors

I’ve had the cloudy/turbid color. Shows I had an infection. I’ve also had the pink or blood tinged. Meaning, mild trauma. The other color I had was the milky. Cirrhosis, thoracic duct injury.  Don’t be jealous, you too can get liver disease. 

Now for the fun and exciting PARACENTESIS. 

They stick that tube in your side/stomach area. The belly you see is not a pregnant belly, it’s full of fluid. 

I had my first foray (A sudden attack or incursion into enemy territory) into the world of getting that naughty liquid out of my stomach, on Oct 24, 2017. The last one I had was Jan 13, 2019. The largest amount of sludge was 10 liters. The smallest, 2.6. In all I had 23, yes you read that right, twenty-freaking-three para’s!!!!!!

Next we have the THORACENTESIS. 

This procedure hurts. They are pushing that tube in between your ribs. You don’t realize how hard is for you to breathe until some of the liquid is taken out. IF YOU EVER HAVE TO HAVE THIS PROCEDURE, make sure you go to your happy place. Breathe like you are delivering a baby. Deep breath in, deep breath out.  You will either get a pain in your arm, or like me, you will start coughing. TRY NOT TO COUGH. It is horrible. It is a non stop cough. You will feel like you might not make it. 

My first trip to thoracentesis land was Feb 2, 2018. My last one was Dec 5, 2019. The largest amount they took out was 4 liters. The smallest was 1.05. In all I had 13 of this procedure. 

Time for a story problem. I hate story problems.  I don’t care how many apples left New York, how many oranges left California. And the stupid question they ask. Where the the damn trains meet. Ok, breathing. My heart rate just went up. 

Back to the math. 

If you have 23 paracentesis with a grand total of 106.08 liters of sludge taken out, plus 13 thoracentesis with a grand total of 28.15 liters taken out, how many gallons does that equal?  

Do you have your answer?

28 Gallons of stomach gunk

7.5 Gallons of chest crap. 

Grand total:  35.5 freaking gallons!!!!!!

Imagine carrying all that liquid around in your body. Could you stand it?  Next time you go buy gallons of milk, hold at least two and walk around with them in your arms down by your belly, for as long as you can. Good times. 

Now get ready with your barf bag. Please, please my dear readers, I can’t stress enough. If you are showing signs of liquid build-up in your belly, get yourself to a doctor or ER room pronto!!!! 

This lady has ascites horribly bad. Open sores are not an option!! I’m surprised this lady was alive to take this photo. Notice her legs. They are normal size. She is not overweight. 

You can now gargle that nasty taste out of your mouth. 

Be sure to join me next week for:

All You Want To Know About Liver Disease But Are Afraid To Ask