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.