HIS PERSPECTIVE - PART ONE

 Yesterday, January 24, 2021, it was my two year anniversary of receiving a new (used) liver. To celebrate this achievement, I have invited a guest to blog about his perspective. He has a lot to say so enjoy.

Hi y’all, Donna asked if I would offer my thoughts regarding her transplant. I said sure, why not. This post is my perspective as her caregiver. These are my thoughts and feelings, not hers. 

First let me say how horrible the last couple of years have been for both of us.  As awful as it’s been, at least, I never had to experience what she went through, the sickness, the pain, the misery and the fear that I might not survive.  Donna had to endure all of it.  

LIVER DISEASE 

Donna’s brand of liver disease is called cirrhosis (scar tissue).  When this condition gets bad it prevents the liver from working properly which in turn causes many serious problems, varices (bleeding blood vessels), enlarged spleen and a condition known as ascites.  Ascites is a buildup of nasty fluid that collects in your abdomen and thoracic cavity (lungs).  The sick liver can’t remove it so it must be removed by a centesis procedure (needle aspiration). Ascites that collects around the lungs, can prevent normal breathing.  A buildup in the abdomen can cause a pressure tear in the umbilical area (belly button).  If these hernias tear enough they can become dangerous.  If the intestine becomes trapped in the abdominal wall, they can be life threatening if not repaired when they are small.  Over time these hernias can get large due to the ascites fluid pressing on the abdomen area.  

DIAGNOSES 2018

Donna is now in need of a transplant but she needs to qualify and then be placed on a waiting list.  This is because there are more folks needing organ transplants, but too few organs available.  Looks like it could be a year or even longer till she gets an “offer”. In the meantime the hospital is strongly recommending a procedure that should help keep the ascites under control until she gets a transplant.  After having this procedure explained by the doctor I was scared to death, I just had a bad feeling about it. TIPS is a stent that connects one vein in the liver with another vein (portal to hepatic veins), rerouting blood from the liver.  You can only get this procedure done once so you better hope it is successful.  No pressure here, right?  So what happens?  During the procedure the interventional radiologist TEARS Donna’s portal vein.  This creates a large DVT (deep vein thrombosis).  Or in other words, a large blood clot that could create a blockage of blood flow or a section could break off and travel through the bloodstream possibly causing a stroke, heart attack, or pulmonary embolism (blood clot in lung).  Any of these events could be fatal!! To make matters worse, we were never told about the damage done to the portal vein.  Not by the doctor who performed the procedure, not by the hospital or not by any of the doctors, nurses, or techs.  

After this procedure they kept her in the hospital for 10 days, two days is normal.  When I asked why they would not release her, they said they wanted her to get stronger, but they were doing ultrasound tests and takings X-rays of that damaged portal vein, and they never told us about any of this.  We tried to find the procedure report but it was not loaded on her profile page, and as of today still not on there.  

Considering she was at risk, did they move her higher up on the wait list?? Nope, still made her wait till transplant, even though she could have died from this over the course of eight months. 

TRANSPLANT CALL

On January 23, 2019 (the day before transplant), her umbilical hernia tore, and she had intestine trapped in her abdomen wall, this was now an emergent situation.  So off to the ER we go.  They took images to confirm the intestine entrapment, just great!! This is all we need!! It could have been prevented if one of her doctors had diagnosed it correctly in the beginning.  He told us the bulge in that area was not a hernia, but a fluid sack that some people with liver disease get......REALLY?? Over many appointments with him and multiple exams of the hernia, and he never got it right.  Now it’s serious and dangerous, so what’s next? They can’t repair the hernia now due to its size and the fact that her liver and associated conditions will not allow a surgical repair.  Boy are we screwed now!! There really is no way to hold intestines in the body with a tear like this.  Even hernia belts won’t really work well.  If the intestine were to rupture and the contents enter her abdomen this could create a horrific emergency, one that she may not survive.  I’m starting to wonder if my wife is going to survive all this.

  I take her home and later that night (at 3:00am) the phone rings.  It’s the liver department with a possible liver, wow, this seems too good to be true.  But we were told we had to arrive at the hospital within a half hour.  Why so soon I was asking myself?  We dressed quick and sped off to the hospital.  We didn’t even have time to fart.  Got there and were rushed up to the transplant floor where Donna was prepped for surgery, everyone in a mad dash to save time.  But why?  The surgeon and his assistant come in our room and start to explain the situation, how the donor died, how old he was, how his liver size was compatible with Donna’s, that the blood types matched and everything seemed ok....I guess, but I had an uneasy feeling about all of this.  This is all not happening the way that it was explained that it would.  For me, not enough information about the donor and not enough clarification regarding the positive viruses in the liver.  

The surgeon explained that the donor liver was a DCD (donation after cardiac death), and had tested positive for EBV (Epstein Barr Virus), and CMV (Cytomegalovirus) viruses. He explained that EBV is a common virus that a lot of people get, and referred to it as the “kissing virus” because a lot of young people transmit it that way.  Nothing more was said about the EBV virus.  He then explained the CMV virus was also positive in this liver, but that Donna had tested positive for this previously so she would have had some level of immunity to it.  What the surgeon did not explain was the danger of a female EBV negative recipient receiving a male positive infected EBV liver.  No mention from him regarding the very high possibility of cancer.  The surgeon did not inform us of the large tumor in the liver which I believe was cancerous.  He also failed to inform us of the biliary damage that the liver had.  We have since learned that the liver has ischemia damage and cellular damage.  

There are federal laws on the books that require transplant centers and hospitals to disclose all pertinent information in organ transplant cases.  This is called “INFORMED CONSENT”. After the brief discussion we decided to accept this liver because we did not have any information about it that would have created a red flag.  

So here we are at 4:00 am trying to quickly decide whether we should accept a life changing organ that we know very little about.  When you buy a house or a car, you have the opportunity to have them inspected, evaluated and see a sellers disclosure so you can make an intelligent decision before you buy, but not in this case.  The life of your loved one is now dependent on the surgeons proficiency and honesty. Transplant recipients should have the right to know about the donors medical issues, that pertain to the organs condition.  Example, did the donor have cancer, or other diseases?  HIPAA privacy laws are in favor of the donors privacy, but not the recipients rights.  It’s ridiculous to deny the recipients this life saving information, it might mean the difference between life or death, or they will only live a short life until they die from these other diseases and illnesses.

The FDA allows transplant hospitals to use organs that are infected with potentially deadly viruses.  EBV and CMV are now cleared to be used in transplants due to the shortage of donor organs.  Even organs that are cancerous are now cleared to use.  The rule however is that they are to be used in people who are very sick and might die soon if not transplanted.  This was not the case with Donna.  Her MELD score (Model for End Stage Liver Disease) was 24, not an emergent condition.  The biggest concern is that the hospitals/surgeons need to inform the recipients and explain the full details and ramifications of the diseased organs.  Otherwise it is a blind offer and violators should be prosecuted under federal laws.  

I felt extremely hesitant to accept this liver.  I did not have the heart to tell Donna that we should pass on it.  I also felt a lot of pressure from everyone involved to accept it.  It just seemed a little odd that all of a sudden the hospital had a suitable liver or was it just a liver but not so good? Considering 1 1/2 years of suffering and going through three failed TIPS procedures, endless tests and more endless procedures, being so sick she lost over 100 pounds, so to spare her more agony we decided to accept this liver and signed the consent forms.  

As it turned out, the worst mistake I ever made. Just after Donna had gone off to surgery, the surgeon told me the final serologies (blood and tissue tests) had not been examined but he would let me know of any problems........WHAT!!!???? You mean to tell me you are going to implant a DCD donor liver into my wife’s body and you are not completely sure of possible anomalies???

I’m now convinced I’m living in the Twilight Zone. I have a lot of fear and regret. Even today I feel a lot of guilt about this, and did I listen to my natural instincts, or did I succumb to pressure.  

There just wasn’t enough time.

You think you’ve heard everything? Stay tuned for part two of three.

WELCOME TO MEDICAL SCHOOL

In my next life, I’m going to be that person that makes up medical words. Honestly, I’ve had too many procedures and problems that I have to look up the meanings for such things. Case in point....bloody nose, aka nosebleed. What is the medical word. EPISTAXIS. (I’m awesome, I’m going to call it Epistaxis to show my brilliance.) Why do I bring up medical words.  Oh just wait.

On November 13, 2019, six weeks after my last round of chemo, I had an appointment at the cancer clinic. It was determined that I had to get another Neulasta shot. All my labs were super low.  

If you remember, they would give me this shot 24 hours after chemo to help boost the cells in my body. According to the doctor I was suffering from persistent cytopenias. What does this word mean? 

Cytopenia occurs when one or more of your blood cell types is lower than it should be. Your blood consists of three main parts. Red blood cells carry oxygen and nutrients around your body. White blood cells fight infection and battle unhealthy bacteria. 

This chart shows how fast the neulasta shot brings up the production of cells. 

They also decided I needed another bone marrow biopsy. Oh joyous rapture!!  I enjoyed the first one so much. On October 22nd I got that fun and exciting procedure. Let’s remind ourselves how much fun they are. 

I remember walking out of that biopsy to a completely dark hospital. What the? They had lost their power. Thank goodness procedure rooms have generators. I didn’t want to have to get another one.  The power came back on, which was good because I had to go right up to the cancer clinic. There was no way I could walk up 7 flights of stairs. Maybe two steps but not anymore than that. 

Once there, they decided I needed yet another neulasta shot. Rats!!!!  Too many pokes in one day for this girl. 

My liver Doc, we’ll call him Dr. Aussie, because he’s from Australia and that accent is my favorite accent ever, but don’t tell him that, he might get a big head. Anywho, on September 26th they had their little conference where the doctors and surgeons, our transplant coordinators (hey girl, yup she reads my blog), the cleaning crew and the maintenance people, get together in the conference room to discuss all their patients.  Ok kidding on the cleaning and maintenance crews, but you know, just seems like everyone knows your business. On that day they discussed the MRCP that was ordered. What is a MRCP?

MAGNETIC RESONANCE CLOLANGIOPANCREATOGRAPHY uses powerful magnetic field radio waves and a computer to evaluate the liver, gallbladder, bile ducts, pancreas and pancreatic duct for disease. 

See that long, hard to say medical word????  24 freaking letters in that word!  Aren’t you glad we didn’t have that on our spelling and vocabulary word lists in elementary school??

At their little meeting it was discussed that there was a high risk of a bile duct obstruction. Dr. Aussie pointed out that there was a narrowing in the common bile duct and recommended an ERCP for a stent placement. Oh goodness gracious. Why so many procedures. Brent has some ideas why but we will leave that for a different post. 

Get ready for your next spelling and vocabulary word. 

ERCP. 

ENDOSCOPIC RETROGRADE CLOLANGIOPANCREATOGRAPHY is a procedure used to diagnose diseases of the gallbladder, biliary system, pancreas and liver. The test looks “upstream” where digestive fluid comes from - - the liver, gallbladder, and pancreas - - to where it enters the intestines. 

In this 23 letter procedure they stick the endoscopy camera down your esophagus. It was done on December 12, 2019. Merry Christmas to me. 

Get ready to see the actual inside of my esophagus. 

They go in with the camera to find your problem duct. 

Isn’t it pretty? At least it’s not colonoscopy photos. You’re welcome. 

They then put a stent down in your problem duct and balloon it out. They leave it in there to stretch that sucker to a bigger size. They will leave the stent in for three months to see what it does. 

Big, long, hard to say needless words to describe medical terms. I can see them now, laughing hysterically while coming up with them. 

Meanwhile I can’t wait till 2019 is over. 2020 is going to be soooo much better. 

Famous last words. 

ARE WE DONE YET!

 Another day of chemo. You get tired. You sleep. It couldn’t be the amount of Benadryl they give you before you start that days round. Or all the other poisons they are injecting into your body. I got strong enough from the time spent in the hospital after round four that they determined I was strong enough to get round five. Lucky me. 

Three weeks later I was in for round six. You feel like it is never going to end. To this day I can’t watch St. Jude commercials without bursting into tears. I feel so bad for those children getting this crazy disease called cancer. Then I feel the pain their parents are going through. I’ve watched the pain and anxiety on Brent’s face every time I’ve had to have chemo or a procedure. He is one strong man. If any of you are put in the position that your loved one is watching you go through sickness, be supportive of them. Let them talk about their feelings. Let them be angry. They might scream. They will cry. It’s not just you going through all this. 

These are the many hats Brent wears daily. 

He drives me everywhere. He cooks my meals and get them ready to eat. He gets my thirteen drugs ready daily and also answers the drug questions they ask at my appointments. He knows their names. I don’t. He makes me go for walks daily even tho it hurts because I need a hip replacement. He takes care of all my daily needs. He is the worlds best husband. I love him with every ounce of my soul. 

On September 26, 2019 I had my PET scan where they scan you to see if you have cancer still or not. They made an appointment for me to go in on the 30th. This is a very scary appointment to go to. What are you going to hear? More rounds of chemo, which would be a different kind of drugs, or remission. You go in the conference room. You wait for the doctor to come in. Anticipation. I needed a chill pill. 

Finally they came in. What did they have to say. Breathe. Then you hear, YOU ARE IN REMISSION!!!  Phew. Breathe out. They go over your plan for future visits. 

They gave me this book. I have it sitting out and look at it daily. 

I finally got to have my PICC line removed. You have to lay down for a half hour. It’s weird feeling them pull it out. Much easier than going in, that’s for sure. Once you have passed your “I want to get out of here” time, you finally get to ring the bell. 

It’s an extremely happy day in your life. 

Hopefully nothing else will happen. Right?  Of course not!  

 

A JULY TO REMEMBER

July 2019

 After two years of basically being a hermit inside of my home, I felt well enough to attend our family reunion. In fact the last time I went anywhere was to our 2017 reunion. We have them every two years. I have a large family. My mom, 8 siblings (plus their spouses), 26 nephews and nieces, too many kids of those nephews and nieces to count. It’s a 3 day event. Usually in one of the many canyons we have here.  Anyway, I digress. 

We get name tags and everything. It felt so good to get out among the masses. We arrived just in time for lunch.  Afterwards there were games, hiking and just talking. 

Here I am explaining to some of my nieces the joys of chemo. I kind of get a kick out of this photo because of the way they all have their arms folded. 

There also was a surprise wedding. One of my nephews married his long time love.  My brother officiated. I was so glad that we decided to go. By the way, it’s not easy getting a wheelchair down a narrow dirt and rock path. But it only took three men to do it. Hehe. 

Of course after that day it took about a week to recover. I also had another round of chemo on the Tuesday after the weekend. 

Eight days later, July 26th, I woke up in the middle of the night with cold sweats. I had never heard of them. Apparently a lot of chemo patients get them. They can be caused by a variety of reasons. They are often associated with your body’s “fight or flight” response. They prevent oxygen or blood from circulating throughout your body. 

I also was disoriented. Scared the crap out of both me and Brent. Time to head to the Emergency Room at the hospital the cancer clinic is in. They ran tests. One thing they found was I was in a hypoglycemic episode. I think my blood glucose was 36. No bueno!! They admitted me to the cancer floor. I was released two days later. 

Oh, but no. That couldn’t be the end of all the fun. The day after I was released I woke up dizzy. I took my morning pills, two of which are my anti rejection and anti seizure drugs, and promptly threw them up. I was nauseated all day. Even my Zofran didn’t help. That night I tried to eat and threw up again. Wasn’t able to take those two drugs yet again. Brent called the on call cancer doctor, who told us to come to the clinic the next morning if I wasn’t feeling better. (The cancer clinic is open every day because patients need different infusions daily). 

The next morning I woke up with extreme dizziness. I actually closed my eyes to make it stop. We went to the clinic. The moment they saw me, they knew I was super sick. I couldn’t even move by myself. I asked them for tea to help my stomach. They called in the attending physician, who looked into my eyes, and said, “you have nystagmus in your right eye”. Ummm, what the heck is that. The main symptom is rapid eye movement that cannot be controlled. Usually the movement is side to side. It can also be up and down or circular. The movement can vary between slow and fast. It can be in one eye or both. It can also be called “dancing eye”. Apparently your eyes are dancing to their own tune. Lol. 

I was once again admitted to the hospital. We joke about my two hospitals being our “timeshares”. They tell me they are going to have an MRI done. According to the report of my admission, it says they are going to do the MRI with and without contrast plus a MRA of the brain and neck.  Had to look that one up. It is magnetic resonance angiography. It is used to see images of the arteries to evaluate them for things such as stenosis, occlusions, aneurysms, or other abnormalities. It’s a good thing I print out and go over everything they have done, because I had no clue they did this test. 

Lets talk about me getting said procedures. Being a smaller hospital, on Sunday the techs that run these tests are on an “on call” basis. As they are transporting me to the cancer floor they tell me they are already there doing a procedure so I am next up. Sweet. We get all checked in. We wait. We know that MRI’s can take up to an hour to do so it’s no big deal.  We continue to wait. I finally send Brent home to be able to shower and bring me up my own blanket and jammies. 

The nurse comes in. I ask her what in the hell is taking so long. She doesn’t know. Goes out. Finally she comes back and informs me that, THE TECH HAS GONE HOME!!!!!!!!  Say What!!!!! Oh dear, the wrath of Dazee comes out. I must have said a whole paragraph of swear words. I know, this is shocking to a lot of you, but I was a pirate in a past life. 

Three (3) hours after being admitted they finally come get me. The aide that wheels me down knows how mad I am. It’s the talk of the whole floor. I tell him I’m not going to talk to the tech, because it will be a blood bath. When I get there, she does the whole “how are you”. I lay there with my mouth closed. The aide finally says “she’s not going to talk to you”. Said tech goes into cover her butt mode. “I didn’t know I had another procedure. It wasn’t in my queue”. Uh huh, I believe every word spouting from your mouth, NOT!

When I’m finally wheeled back to my room Brent has just arrived back. Needless to say, I was livid. Which made him more livid than me. Apparently the head nurse, the director, the nurse in the clinic, and the tech all had to write a report of what happened. 

My daughter and her kids came to see me. I had to ask for an eye mask (you know, the kind you put on to sleep) so I didn’t have to keep my eye closed. It made me cheer up. 

Ordered this purple eyepatch while I was in the hospital. It was delivered when I got home. Thank goodness for Prime. I do look like a fashionable pirate. Arg. 

And you thought all the fun was going to somehow end. Think again.