WOW, THOSE DREAMS!

 Dreams.  

I don’t know about you, but I dream each and every night.  Most people do, but they don’t remember them. Honestly it’s like watching a movie for me. Over the years, I’ve started analyzing what they mean. Here are a few examples. 

If I dream about someone that I know but haven’t seen them in years, it usually means something life changing is going to happen. Here’s an example of this.  

One night not too long ago, I dreamed about one of Brent’s uncles.   We haven’t seen him in at least 30 years.  The dream doesn’t mean anything, I just dream about the person.  I’m friends with the wife of his cousin, who is the nephew of said uncle.  I told her that I dreamed about him and to be prepared to have something happen.  It seems like it was a month later when she tells me that his uncles wife had just passed away. 

I don’t know why I “know” these things, I just do. For a long time I didn’t say anything to people about them.  Brent would also think I was weird when I talked about them, but he finally realized that they weren’t just made up things. 

Another thing that I dream about is babies.  The crazy thing is, I dream that I am the one that is pregnant.  It usually means people in my extended family or friends or their kids are expecting.   So when a relative tells me about one of their kids being pregnant, it puts my mind to rest.  Till the next one.  

But I digress.  Have you ever had a dream that you have never forgotten about? I have a few that have never left my brain.  They must be in that file that stays open.  (Yes, my brain is a huge file cabinet)  

FRANKENSTEIN 

I had this dream when I was in the first grade. My very first nightmare.  It was recess time. We were just enjoying ourselves when we heard screaming. We looked towards the restroom door.  (First of all, I don’t think elementary schools have restrooms that can be accessed from outside of the building, but whatever). One of the teachers runs out and the top of her head has been flattened like Frankenstein’s. Then a bunch more teachers run out with the same flat heads.  All of the kids started screaming. Then to our horror, Frankenstein comes lumbering out. He was headed right to me, and........I wake up. (Cleansing breath).  You realize this dream was 56 years ago. I can still see it in color to this day. 

BEING PREGNANT 

This next dream was when I was pregnant with my daughter. Brent and I were doing our grocery shopping. All of the sudden my water broke.

 Sidebar: when we went to my prenatal class they said to always grab a jar of pickles just in case your water broke. That way you could throw the jar on the floor hard enough that it would break.  That way it looks like that’s what happened. Plus, it will smell like pickle juice instead of amniotic fluid

Not only that but the baby was born right after my water broke. Now in dreamland there was no umbilical cord or placenta and no blood. What a wonderful world that would be.  I started freaking out. I yelled to Brent “how will we know how much it weighs?”  We get this great idea to go up to checkout and use their produce scales.  Tee hee hee. We are thinkers I tell ya. I know you all are thinking, why did I feel like we needed to weigh the baby?  Well, because the first question out of anyone’s mouth is, how much did it weigh?  Duh. The weird thing about my daughter’s birth, my water did break. Du-du-du. 

SCREAMING DREAM

Since my transplant, I’ve had two dreams that I’ve woken up screaming. Never happened before.  Have any of you experienced these?  They are mind blowing. The first one was about six months ago. I was in a business somewhere when some men came in the building looking for Brent, screaming at me saying “where is he, we are going to kill him”!!! Noooooooooo!!!  I actually woke up screaming that I was going to kill them, they would NOT get my man. In my dream I had a huge knife in my hand. My screaming those words woke Brent up fast. Took me in his arms to calm me down. 

The other one just happened last night. I was at the hospital where for some reason I had two appointments with two different doctors scheduled for the same time.  I went to the one that I didn’t think would last that long. Wrong choice. Of course I was in my wheelchair so I had a friend helping that day. We decided to head to the other doctor that I had an appointment with. For some reason I was pregnant again.  So I was going to the obstetrician. What the hell!!!!! Whoever is pregnant out there would you let me know because I’m too old to be having babies!!!!! We get to the other side of the hospital. They’ve changed their office.  You go to the front desk to check in. And for some idiotic reason you had to walk down a winding staircase to get to the exam rooms.  I start freaking out at them. I’m in a freaking wheelchair. Then they tell me I’m not even on their schedule. Oh dear, those are fighting words!!!! I start screaming, making a huge fool of myself, but I didn’t care. This is the point where I woke up screaming fighting words again. Poor Brent, he’s got a weird wife. 

If you have any dreams you want to share, please email them to me. The reason I named my blog Crazy Daze and Nite Dreams is because that is my life. 

Remember my email address is dazeedreamergp@yahoo.com if you want to share a dream or do a guest post. I look forward to hearing from you.  

WHERE DO I GO FROM HERE

Believe it or not I’m getting caught up with my health adventures. But never fret little buck-a-roos there are going to be plenty more posts.  Bwaa haa haa.

Let’s just talk about a few things before I start today’s fun and exciting  procedure that I got to endure have.

I’m going to start opening up a service for all of my fans followers. Anyone that would like to write about some kind of life changing or health problems that have happened in their life are welcome to post here about them.  

I have created an email address for just this purpose.  Write your post.  Email it to me and you will see your post in lights.  The email address is:

dazeedreamergp@yahoo.com

Please do this. I think it will be a cathartic thing for you and I. 

Now on to my fun and exciting procedure that I had the pleasure of getting last November. (2020) It’s called a Hepatic Venogram.  You’re probably scratching your head wondering what it is. Never fear, Dazee is here. It is a method of visualization of the hepatic veins by direct injection of a radioplaque substance through a special catheter into the liver vein.  I know, doctor-ese is extremely hard to understand. Here is a video that explains it.  

If by chance you don’t see the video here, please click on this link. 

https://youtu.be/9cEOpr-MRL4

You too could have one of these if you are as lucky as me. 

Here I am after being stuck in the jugular vein.

And here is the fun site of what it looks like after you take off the bandage.

Ouchy. 

While the doctor was in there she also took a biopsy of my liver.  I know right.  Before long I won’t have any liver left to take a biopsy from.  Wait....your liver regenerates.  Phew

What does all this mean?  Who the heck knows.  To me it means I get to have another one in May.  Don’t be jealous.  It also makes me realize that the human body is an amazing thing.  We take it for granted.  Everyday it just works processing what each organ is supposed to do.  Yes, sometimes things break down.  And I’m grateful that I’m alive now where we have medication and procedures that allow us to keep living.  Don’t get me wrong.  I’m not afraid to die.  There have been few times during the last four years that I’ve begged for it.  In fact, I got mad at my dad for not coming and taking me with him.  But I couldn’t leave Brent, my kids and grandkids.  Honestly they were the only reason I didn’t give up.  

One thing you will notice from my blog is I will always be truthful with my feelings.  Also, if any of you have questions you would like me to answer on here, PLEASE ask them in a comment or send me an email.  I will then answer them in my next post.  I will not use your name unless you give me permission.  Here is that email address again.

dazeedreamergp@yahoo.com

WHAT DOESN’T KILL YOU MAKES YOU STRONGER

 This week I’m taking a little break from my never ending story to talk about things that happened throughout my life that have made me either sink or swim. 

BROKEN BONES 

I have broken both my arms.  The first one was my right wrist.  Quite a few kids break their wrists where their growth plates haven’t grown together yet.  I broke mine while roller skating when I was about five.  

The second time I broke my left arm.  This one was a bad one.  We were at church and outside there were these metal bars that ran along the sides of the sidewalks.  Being kids we got bored so we went outside before going to Sunday school and decided to use the bars as balance beams.  (Close your mouths, I see the look of shock on your faces).  I was six years old and by darn the older kids weren’t going to be braver than me.  I get up there and start strutting my stuff when I fell.  Did I fall just right?  Ummm, no.  I fell, hit my arm on the metal bar, and broke it in two places as you can see in the above picture. I remember looking at my arm thinking it looked like a horseshoe.  Kids are screaming, parents are running outside.  This was before the 911 system.  One of my parents rushed me to the hospital, the other took all my siblings home.   Again, in the sixties the emergency room did all the “fixing” of things emergency.  The memory I have of that was them pulling my arm and pushing the bones back up in line.  Oh, and the pain.

SCARS

The photo on the bottom right is a scar I got when I was in the sixth grade.  It actually starts at my elbow and ends up by my wrist.  This was also a rolling skating accident.  I have to tell you that this was when Peggy Fleming was America’s sweetheart of the figure skating world.  By damn, I was going to be the roller skating sweetheart of the world.  In all my spare time I was “practicing” my moves.  One day I was doing my speed skating up and down the sidewalk.  Our driveway was such as it declined down to the garage.  It had these cute little windows on the door.  I would go down the driveway, swing around the car, and get back to the sidewalk to go up the street and back.  One of my brothers, who shall remain nameless but it sounds like John, decided to push me as I was on my decline.  All of the sudden I feel out of control and I’m headed towards the garage door.  Trying to stop myself I put out my arm to stop.  You guessed it, I hit the window, not the wood.  I look at my brother, and he has a look of terror on his face.  I run (skate) into the house straight to the kitchen where my mom is doing dishes in the sink.  She puts my arm over the sink and I see the drip, drip, drip of blood and the water turning red.  She screams for my dad who comes running in.  He takes his hands and wraps them around my arm above my elbow.  Has my mom call our doctor and has my mom drive us to the hospital while he keeps a hold of my arm.  We get to the hospital, rush in, the nurses put me in a wheelchair and put a pillow under my arm.  It proceeded to turn the whole pillow top red.  My mom comes in and pleads with the staff to let her see my arm.  My dad hadn’t allowed her to see it.  I watched the color drain from her face.  

At this point they take me into a room, lay me on my stomach, and start stitching me up.  One hundred thirty two stitches (132) later, they are done.  Apparently the original cut was in a Y shape but they had pulled it together to make one long scar.  They didn’t even put me out.  I remember looking at what they were doing and saw them pulling the thread out of my skin.  That was all the watching I would do.  Did this stop me from skating?  Heck no.  I also didn’t lose the use of my arm or have nerve damage.  The other scars are from a back surgery (ruptured disc) due to falling on ice, hip replacement and liver transplant.  

CANCER

Cancer.  The spawn of Satan.  Ok maybe not but it makes you feel that way.  Thankfully my uterine cancer was only stage one, so a total hysterectomy was how they took care of it.  I am finally down to once a year visits on that one.  You’ve all read about my lymphoma so I’ll just say is I’m a year and a half into remission.  I’m doing all I can to keep it that way.  

This is by far the biggest “trauma” in my life.  I was young when it happened.  I’m not sure how long it went on.  It’s one of those things that as you are growing up, you have it locked away in a file that you don’t have the key to open it up.  I have periods of time that are blocked from me remembering.  I know there are different ages that it must have happened.  Finally in my later fifties, I had a Rapid Eye Session.  It is a eye movement desensitization and reprocessing (EMDR) therapy that is an psychotherapy technique used to relieve psychological stress.  It is an effective treatment for trauma and PTSD.  Both my sister and sister-in-law have extensive training in this.  During my session, I finally released who the pedophile was.  I don’t call him an abuser.  I call him a pedophile.  I came out to my siblings about it.  I’ve never mentioned it to my mom or dad.  

But you know what.  HE DIDN’T BREAK ME!!!! I will not allow it.  It’s made me a much stronger person.  When he meets his maker, he’ll have to answer for it.  

So all of my life experiences have made me the woman I am today.  I truly feel like if we use our experiences to help others, we are being a good person.  I’m able to say to people “I have been through this, if I can do it, so can you”.  I will be an advocate for anyone that needs me.  

My hope with today’s post is, if you have trauma’s in your life.  Talk about them.  Don’t be silent.  You don’t ever know who needs your story to help them through this thing we call life.  

THESE ARE THE DAYS OF MY LIFE

On April 9, 2020 I was once again in for a liver biopsy. There is a huge possibility that I will be having one of these fun and exciting procedures every six (6) months. Because I talk of these all the time, I’ve uploaded this video for your viewing enjoyment. 

The only difference between this video and what I go through is they put me out. This biopsy is the very first time that Covid made my life miserable. In every procedure I’ve had in the last 2 years, Brent was there right by side. Holding my hand, cracking me up. But he wasn’t allowed in the recovery room with me. That means he’s not there for all the pre stuff, not there when I get back from the biopsy and not there for the two hours that you have to lay there. The only reason he couldn’t be there was because I was not assigned a private room.  Each bay was separated by curtains. I went into a depression. Not good, but I made it through. 

On April 21st, we had my first ever Webex appointment. Weird. We had to wait for two weeks for this appointment because the doctors, surgeons, coordinator, pathologist and who knows who else get together to discuss all the findings and decide the plan of action. We are told that my liver enzymes have not improved with my dose of prednisone.  In the words of my doctor, “there is evidence of dysfunction and concern for rejection and concern regarding the T-cell infiltrate in the lobule.”  The T-cells are a white blood cell that is of key importance to the immune system. It fights infected cells, IE: viral infections or in my case it tried to fight my lymphoma. 

Whatever are they going to do?  It sounds bad. Why don’t I ever hear, “Dazee, you are so remarkably, amazingly, wonderfully well we just want to send you on an all expense paid vacation to anywhere of your choice.” But alas, this is their plan of attack. I need a HUGE amount of prednisone. Can they give it to me in pill form. NO THEY CAN’T.  How much do I need?  Only 500 mg’s a day for three days. What the????

I have to go to the infusion center for three days in a row and have IV prednisone which is called methylpredniolone. Ummm, excuse me. Three days of 500mg’s of this. Do you know what prednisone does to my body?  Weight gain, super high blood glucose (I’m diabetic) and being very ornery.  And that’s on a low dose of this drug. Every person I know better not hang around me. Just sayin’. 

The first day, Brent is allowed to go into the room with me. Yay!! When we show up the next day that damn Covid shows it’s ugly head again. He can’t even take me up to the infusion center. They have to send someone down to take me up. Why? Because I’m wheelchair bound. Then it takes at least an hour to have the stupid medication drip into your vein. Thankfully on the first day they put the IV in my arm and I could keep it in the whole three days. Don’t have to be stuck three different days. Thank goodness we live 15 minutes away from the hospital. I sent him home and when I figured I was getting close to being done I just called him and told him to come back. 

Let me say something about Covid. It’s a real disease. I was already wearing a mask because of being immuno suppressed. I wear a mask WHEREVER I go, which is pretty much to get my labs and procedures.  And I plan on wearing it for the rest of my life. I don’t get to see my kids and grandkids very often. Even for the holidays. It sucks. I can get the vaccine soon. So can Brent. My mom fell and broke her femur before Thanksgiving. No one could be at the hospital with her before her surgery. After that she was only allowed two people a day to come visit her and not at the same time. Then she was sent to a rehab center. NO ONE was allowed inside the building to see her. We had to talk to her on the phone while standing outside her window to see her. I wasn’t able to go. It’s winter. She was there until just last week. She had to spend two of her favorite holidays alone. 

Please wear a mask. Please don’t make people who are in front of you in a store or wherever you are feel like crap because you don’t want to wear one. Put yourself in Brent’s shoes.  Someone could be standing behind him talking loudly about how people that believe in COVID are stupid. How do you know that the person wearing their mask doesn’t have someone at home like me that probably wouldn’t survive getting this real disease. 

But I digress. Will this huge amount of drug help me?  Only time will tell. 

 

PLEASE MAKE THE ITCHING STOP!!

It is a new year. 2020. What a year it’s going to be. Of course, we didn’t know just how much fun. The year marks the one year mark of my transplant.  In some ways, it seemed like the year went really fast. Even with all the fun stuff that was going on. 

On January 29th I had an appointment with an epilepsy doctor. I had been on KEPPRA, the anti seizure drug. I was supposed to be seen at the six month mark, but alas a referral was never made. We go in to the appointment. The doctor comes in, starts doing all kind of tests. Touch your nose, slap my hand, move forward, move back, touch my finger, watch my finger. Alrighty then. Fun times. He went over the MRI that was taken when I had dancing eye. He determined that I didn’t need to be on KEPPRA any longer.  You can’t just stop taking it all at one time. He put me on a four week decline of the drug.  Yay.  One drug down.  

Everything was going fine until April 22nd.  I woke up with a fever and a painful belly.  I know right.  You are so surprised.  We kept our eye on my temp, but by later that afternoon Brent decided we needed to go to the Emergency Dept.  Why Emergency?  Because you never ever have an emergency happen on a weekday when you can just go see your regular doctor.  Nope, not going to happen.  We get there.  It’s packed!! Finally they put me in the “pre” room where they do your vitals.  They start an IV because of my fever.  They go out and we sit in there and wait.  All of the sudden they come in and want to check me for the flu.   Ok.  Whatever floats your boat.  Not fun.  Hated it.  They have no rooms available yet.  Because I’m immuno suppressed they put me in a section of the waiting room that is separate from the bigger waiting room. 

We are sitting there waiting.  Another woman is in there.  She’s very quiet.  Before long, her husband gets there.  The “quiet” lady, becomes the looney lady.  She starts sitting on her husbands lap.  Starts talking really loud.  Starts calling him her pussycat.  Then, she asks him if he brought her a drink.  What?  He reaches in his pocket and pulls out a flask.  What the heck!!

The aide comes out to get me.  They are going to do an ultrasound.  Oh goodie.  I go in, have it done and then they take me to my room.  But hey, let’s get a urine sample first.  Brent went in with me.  Along with the nurse, because, you know she must have been afraid he would give her his urine.  Weirdo.  I showed her how strange my stomach looked.  Asked if it was normal.  She said no, but didn’t know what it was.  Here is a picture of it.  It is surrounded by my hands.  

After the doctor was able to read the ultrasound he came in the room and told me I had pneumonia.  Oh, good times.  It was also determined that the large bulge in my stomach was an “incisional hernia”.  What the? Apparently some of the liver transplant patients get them.  It’s because of where they incise to take out and put in livers, the abdominal wall gets weak.  No way.  I never get anything that is beyond normal.  Stop laughing.  Anywho, they put me on antibiotics and send me home.  

I know you are all wondering if I had the flu.  Because, umm, flu tests come back fast.  They never said a word.  If you want my honest opinion, I think they actually took a COVID-19 TEST.  This was about the time that it was sending people to the hospital.  Thank god it was just pneumonia.  

I had starting itching like crazy when I had the ERCP done.  That was when they put the stent in my bile duct.  They also put me on a drug called Ursodeoxycholic.  It is a drug to help thin out your bile fluid.  My lab tests were showing an increase of my bilirubin. A higher bilirubin amount will make you itch.  Also the drug that they put me on will cause itching.

Let’s discuss how awful constant itching is.  It’s horrible.  I wouldn’t wish it on anyone.  Well, except my sworn enemies.  Imagine, your arm starts itching in a certain spot.  You scratch it.  But wait, your ear is itching, you legs are itching, your toes are itching, your head is itching.  It’s AWFUL.  No matter where you scratch, another spot will itch before you are done scratching.  The only time I wasn’t scratching was when I was asleep.  Thank goodness.  

On March 12th, I had the stent removed from my liver.  In this picture, it is the inside of my esophagus where they were removing the stent.  On the image on the right, if any of you know what that green looking stuff is, please let me know.  (Yeah, I’m looking at you Celissa). 

Brent thinks it looks like guacamole.  Excuse me a minute while I spew a little out of my mouth.  

Oh my, never a dull moment.  

HIS PERSPECTIVE PART TWO

 Welcome back to part two of Donna’s Transplant Adventures (TP).

Donna gets that much waited for TP.  After about a five hour surgery, I was told her surgery went well, with no problems. I was able to visit with her in the ICU.  She was in the ICU for one day. They assigned her a room on the Transplant Floor of the hospital. The third day after TP I noticed changes starting to happen. She became quiet and her personality was subdued. At first I thought this must just be a typical reaction in recovering from a TP. After two more days of decline I was very concerned. I started asking the nursing staff if they could explain what was happening with her and would they inquire about my concerns with the liver doctors. They blew off my concerns and treated me as a pesky family member who was overly concerned about his wife. I continued asking every nurse that was assigned to her care, every shift change, everyone for help and NOTHING.  Surely they must have seen the changes. By the 5th day after her TP her condition had badly deteriorated. She had something serious going on but without the help of the hospital I started to research her symptoms. 

Her symptoms presented with unusual smells, tastes, nausea, deja vu, aimless movement, lack of interest and concentration.  She kept saying she wanted to “crawl out of her skin”.  She thought everyone was her enemy and they were plotting against her. Towards the end she did not even know who I was. A blank stare was all I got. And still no one intervened to help her avoid the damage that was occurring. Her eyes had turned orange. On day six, a nurse came in to administer her afternoon meds. Not long after the nurse left, I heard my sister-in-law scream DONNA!  She had just suffered a bad seizure and was unconscious. Her face was red and her lips were blue. The nurse heard the scream and ran back in to call a code. The rapid response team quickly arrived. About 30 people started to assess her, then treating her with a drug. They prepared to move her to the ICU. 

At this point I had no idea whether this was a stroke, seizure or what. Would she survive?  I was fit to be tied. Many tests were done, including a brain wave test, and a MRI. Due to an overdose of immunotherapy drugs given over the course of six days, Donna was diagnosed with a condition known as PRES. (Posterior Reversible Encephalopathy Syndrome). It is damage to the brain due to toxic drug overdose. It is characterized by seizures, altered mental status, visual loss and edema in the parietal lobes of the brain.  (Water in the brain). The consequences of this seizure were convulsion spasms, altered consciousness, clonic jerking and shaking, and extreme sleepiness. This bothered me deeply. I was amazed how she could sleep through the violent twitching and jerking. Every now and then I would try and wake her to see if she was ok. I was worried she had permanent brain damage. I also was worried the seizures would return. 

She suffered from this for two days and nights. She slowly improved but was unable to walk for a couple more days. Then only by using a walker. She needed help to get to the bathroom. The long term effects of the PRES and seizure have at times diminished her ability to speak and her memory has been affected. She also has some occasional anger issues. Even today, two years later, she can not walk without her walker. She has some hip issues but neurological damage as well. She most likely will never be able to drive again. I sometimes wonder how bad this event could have been if she had that seizure in the middle of the night when nobody was there to call for help. What could the damage from this have done to her future, or maybe she does not survive. Scary to even imagine. Was there a report filed concerning her seizure and an ICU report of why all this happened.....NOPE!!  There never was.....color me surprised. 

Donna was scheduled to see an epilepsy doctor. She was prescribed the drug Keppra for one year. The side effects of this medication can be irritability, depression, tiredness, suicidal tendencies, memory loss and other conditions. She was supposed to remain on Keppra for six months but alas, she was on it for one year, hmmmm, I wonder why?

  So why, you may ask, was she over prescribed so much immunotherapy after TP?  This is a question the hospital never wanted to talk about. They went out of their way to avoid talking about it. I have given this question much thought and can really only come to a couple of conclusions. Perhaps the extreme dosage was a mistake by the doctor in charge of ordering it. Or was it given to her in large quantities for a specific reason, but what?  

Looking back at her med charts from the hospital flow charts (records of the drugs and dosages and time given to the patients that nurses record in the computer system), I was able to determine that Donna was taking four different immuno drugs all at the same time in high dosage amounts. These drugs are the common drugs used for TP rejection protocol, they are SIMULECT (basiliximab) supposed to be an induction immuno drug. However looking at her med charts she received this drug in large amounts starting from the day of her TP until two days after her seizure. (A total of eight days). Another drug known as Tacrolimus, (PROGRAF), was started two days prior to her seizure. This medication has a history of serious side effects. Including PRES, seizures and cancer. Why would they continue with both Simulect and Tacrolimus together?  Another common drug used in immunotherapy is Mycophenolate (CELLCEPT).  This is a backup med she was receiving 1000 mg’s twice a day. Finally Prednisone (SOLUMEDROL) in large dosages. 

It took Donna six days from her transplant to develop PRES and seizure. I believe the reason for the toxic overdose to these meds was due to the unstable condition of the donors liver. So the doctors used large continuous doses to thwart off the possibility of acute rejection, or was there a blood or tissue type matching problem. Could the overdose have been related to the fact that her donated liver had a large tumor and tested positive for EBV and CMV. Was the liver cancerous?  The doctors said they “gave her too much immuno suppression drugs”. But they never said why. We can’t see the labs or medical records for the donor so we don’t know if the liver was cancerous before TP.  Even today this is a topic they don’t want to discuss (yeah I guess I wouldn’t want to either). Whenever I ask about the donors health conditions the hospital says HIPAA regulations don’t allow them to disclose this information. It would probably take a court order or involvement from the FDA to obtain information. Donors or donors families need to allow specific info regarding the organs they donate and any health issues that would affect the life of the recipients. 

On one hand organ donation is a great achievement of science, but if not done correctly it can cause people to die. It could also cause sickness and permanent disability. Due to the overdose of these immuno suppression drugs she is excluded from taking these commonly used drugs and instead must take the more dangerous and extremely expensive drugs. As it turns out there are not that many good immuno drugs for TP patients to use. 

Expensive liver disease drugs Rifaximan, 3 month supply out of pocket equals $1950.00. Everolimus one month supply $444.00 out of pocket. You get the picture? 

LOOKS LIKE SHE MIGHT SURVIVE 

Donna continued to make slow progress but was not interested in food. She was very weak and not able to walk without help. She needed help to get to the bathroom. One night she needed such help to the bathroom and the order was that two (2) aides help her. Well guess what? The hospital is always short of aides. After she called for help, one small gal tries to help her. Then POW! She falls and lands on her previous hip replacement. I had an agreement with her nurse to leave a porta potty by her bed to avoid this very thing. Of course that agreement was broken....no porta potty....no two aides....she falls and seriously hurts her hip....more X-rays....wound care....pain patches....anti inflammation meds....ice packs....more pain for her. Pain that seemingly was never going to end. Even today she still has a mass of tissue in her hip area due to this injury. 

It was clear that I needed to sleep at the hospital in her room to keep her safe while she recovered. That hospital couch was harsh night after night. 

Physical Therapy wanted her up and walking even tho she was still recovering from her SURGERY, PRES, SEIZURE, CONVULSIONS, HIP INJURY and the fact that she was as weak as a kitten. She could not swallow food or her meds with that feeding tube down her throat. Her weakness and lack of of balance posed another fall risk, but the surgery team would come in every day and didn’t seem to understand why she wasn’t up and walking around. (Sometimes you can’t see the forest for the trees). One of the surgeons got extremely mad at her telling her off about her “promise to participate in walking and all other activities asked of her”.  The look on Donna’s face broke my heart. 

After twenty days of this hell she got to go home. But it was short lived. She developed “C-DIFF”, a bacterial infection of the colon so back to the hospital for two more days. 

Donna continued to improve through February and March, but in April her blood tests revealed her liver enzymes were very high so it was time for a biopsy and God help us. Now everything I had learned about EBV, tumors, and drug toxicity had finally come true.  She has large B Cell Lymphoma cancer. Surprise, surprise, surprise. Never saw this coming!!

Stay tuned for part three of Donna’s Transplant Adventures while once again she needs to dodge the bullet. 

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.