C The DIFFerence A Week Makes

 

Gross stuff coming. But first, another memory from a sibling.  

From My Brother Phillip

In early 2019 Dazee was in the hospital recovering from her liver transplant. She had been on my mind a lot. I felt paralyzed being so far from her during this time. My family prayed for her constantly. One week in February, I was able to find a reason to go to Salt Lake. It was a short trip, but I planned to take some time to see her in the hospital. 

However truth be told, after a long day and getting in much later than I expected, I didn’t feel like going to the hospital. It was about 9 PM and snowing outside. Based on my schedule, I also knew I wouldn’t be able to see her the next day as I was flying back out. But, I really wanted to see her, so I quickly checked into my room and headed to the hospital. I can’t think of anything I’m more glad I did over the last few years. 

I really didn’t know where I was going so my wife Alisa talked to Melodie to find out the details. I arrived at the hospital and started looking for the right floor. I remember the smell making me anxious. (I don’t like the smell of hospitals). When I got to the right floor, I started looking for the room I was told she was in. I remember being surprised that no one questioned what I was doing. I thought it was odd they’d simply allow some guy to roam around the area after 9PM. I went into the room I was told she was in. Some dude was lying in the bed (freaked me out) so I had to go to the Nurses’s station and ask where she was. Finally I found her room. 

When I walked in, I saw her lying in bed asleep. I also saw Brent sitting in a chair next to the window doing a crossword puzzle. I sat next to him and asked how she was doing. I was blown away with how much he had learned about her condition. I’ve never forgotten that. We chatted for a while and then she woke up a bit and saw me sitting there. She smiled and said “Phillip?”  I thought my heart was going to burst. It made me so sad to see her lying there in that condition. On the other hand, I was equally as happy that she had received her new liver. We talked for a while, and even though she desperately wanted to show me her scars, I’m happy to say that I was strong enough NOT to look at them. (I’m a wimp and may have fainted). 

I’ve always been so glad that I was able to make that trip and see her. She lifted my spirits. 

On February 19, 2019 I was finally released from the hospital. Yippee ya hooey. When we left, in my possession, were 21 different drugs I had to take daily. Yes, you read that right, 21. 

Everyday Brent gets my meds ready in different cups that I take throughout the day. He’s a rock star. Today I’m down to 13 meds. Still a lot. 

One week after my discharge,  on February 26, I got the worst diarrhea of my life. Every half hour, (it felt more like 10 minutes), I was running to the bathroom.  Actually it was a slow walk. I called the liver clinic and asked them what to do. At first they told me to take some anti diarrheal medicine. But then they called back and told me to go back to the transplant floor at the hospital. What the heck. 

What was it?  C DIFF. By the show of hands, how many of you know what that is. Wow, look how many of you know. I’m impressed. 

It’s an inflammation of the colon. A disruption of normal healthy bacteria. Mine was in their words “a severe infection”.  The primary risk factor for C difficile colitis is previous exposure to antibiotics; the most commonly implicated agents include the cephalosporins (especially second and third generation), the fluoroquinolones, ampicillin/amoxicillin, and clindamycin.

They decided I needed to be admitted. Everybody that entered the room had to put on hazmat gear. Gowns, gloves, masks, basically everything they now have to wear for COVID. 

Still trying to recover from the previous 21 agonizing days in the hospital from my transplant and seizure, I was moving really slow. Like a snail slow. When you have C DIFF you do not have time to wait for an aide to come help you.  When you feel the urge you have to go RIGHT NOW. We made them get a bedside commode. Brent slept at the hospital the two nights I was there. I would barely make it to the commode. This type of diarrhea is just like water. This hero of mine wiped up more poop than should ever be expected by any husband. 

One time the aide came in, and instead of pouring it (the infected poop) into the toilet, she poured it down the sink!! WTF!!!!! And then she even left the catcher thing in the sink. My poor husband put on the hazmat stuff and cleaned out the sink and catcher. This goes above and beyond what any spouse should have to do. Just another time that we should have made a huge stink (haha) to management. We have learned now to make complaints. A lot of doctors don’t like us much anymore. 

Thank goodness I was only there for two days. With another medication (antibiotic) to add to the 21 drugs that I was already taking. It’s crazy to think I was now taking a NEW antibiotic to clear up what a previous antibiotic caused. 

Is the worst behind me??

NO TRUST

 I have trust issues. I admit it. Some of them go way back before I was sick. But throughout this journey, I have only been trusting very few people.  

FIRST

As you know, I had my transplant on January 24, 2019. Remember the three TIP’s  procedures I had? I told you how the first one the doctor did I was screaming throughout the whole thing. Low and behold when they went to take out my liver, they found in my lower portal vein, a deep vein thrombosis.  Yup a nice ole BLOOD CLOT.  Looking back on it I think, wow, what if that sucker would have broken off.  Would it have gone to my brain, caused a stroke or worse yet, death? TRUST?

SECOND

What caused my seizure?  I developed PRES (a brain disorder).  In my case, it was caused by an electrical malfunction, as a result of my transplant.  It was caused by certain powerful drugs. The offending medication?  Tacrolimus, aka Prograf, the number one anti-rejection drug given to transplant patients. I was given way too high of doses involving four different drugs after transplant. Therefore seizure.  I can no longer take that medication. We did get the doctor to admit he gave me too much later at one of my many doctor appointments. TRUST?

THIRD

Above photo my right hip with lidocaine patch for pain. 

2.5.19

They would no longer allow me to have a catheter. They wanted me to get up and wobble to the bathroom. That’s how I walked, wobbly.  I was still unsteady on my feet from my seizure. Brent talked to my nurse Ross that evening. He promised Brent that when I called for help to get to the bathroom, he would make sure there would be two aides. Of course, when you call for help it could be 15 minutes before someone arrives. I already had issues with holding my water. Finally ONE very small aide came in to help me. I told her two people were supposed to help me. She said to just hold on tight to my walker. We started towards the bathroom when suddenly I felt myself slipping. Before I knew it I was headed towards the door jamb.  I started yelling. I hit my right hip that had been replaced a year earlier, but never healed all the way because of going right into end stage liver disease. Oh....My....Gosh. The pain. She finally got Ross in there. He sat me down on the toilet and I thought I was going to go through the roof from the pain. I don’t even think he gave me a pain pill. Needless to say, the next morning when Brent got there, he was pissed!!!  When the surgeons came around for their walkabout, he let them have it. According to the report they wrote, “Husband furious with all caregivers about post operative course.  Risk management called”.  They freaking deserved his anger. Two days later on another walkabout report Dr. GagMe (the actual surgeon that did my transplant, not his real name but close) said I was having panic attacks when standing. You think GagMe?  After that horrendous night, Brent slept at the hospital every night with me. TRUST?

The lovely feeding tube. I look like hell by the way. 

Fourth 

They put a feeding tube in my nose when I went into ICU. I had trouble swallowing with that sucker in there. I had to take tons of meds everyday. I couldn’t swallow those.  They had to grind them up and push them through my feeding tube. They made some tech come in that did an ultrasound test while sticking things down my throat. Gag, gag, gag. Other damn tests they put me through during this time. Let’s send her up to the rehab floor. 2.8.19. NOT ACCEPTED. Their reasoning. Because I didn’t want to participate in physical therapy. WTF?  I never said that. Medicare wouldn’t cover it. Liars, liars, all pants on fires. 

Also 2.8.19. Psychiatric Consult. Dr. GagMe was thinking maybe I was sick in the head. I passed that consult with flying colors. I told him I just wanted to go home. I also had panic attacks when Brent would go home to shower. When he would get back, he would have me look in his eyes and calm me down. 

Back to the feeding tube. Everyday Dr. GagMe said he would send me home the next day. Every day that was a lie. On 2.12.19 he told me he would let me go home on Monday the 15th.  He came into my room and told me he wasn’t going to because I wouldn’t eat. I lost it. Here is what he wrote on his report that day. “Patient very emotional today with angry bursts of crying. She said she is refusing to eat unless we take out the feeding tube”. I remember telling him I just wanted to go home. I was tired of him always going back on his word. His exact words to me were, “I will take it out, but if you don’t eat so many calories with each meal, I will put it right back in tomorrow”. My sister Margaret was sitting right next to me on the bed, holding my hand while I was crying. When he said that to me, she looked right at him and said, “you should never have told her she wouldn’t be able to do something. She will prove you wrong”.  He got told off by two women that day. Bwaa haa haa. Needless to say, he had to eat his words the next day. He finally gave me the ok to be released. TRUST?

I was finally going home after spending 3 horrible weeks in the hospital. It’s got to get better, right?  

What’s Going On??????

Warning, this post may cause different emotions. Be advised. 

I’ve asked my siblings, children and grandchildren to write things about an experience or two they’ve had with me in my hospital experiences. Please enjoy. 

From My Brother John

I visited Dazee the day of her surgery, thinking she had been out of surgery for a while and was now resting. Instead I found a team of doctors and nurses (as well as her husband Brent) around her getting her to sit up and trying to adjust her to lay down in her bed. Once she was laying down, one of the doctors started talking to her, asking her questions and such. She was very much out of it from the drugs and anesthesia, and gave short answers.  Good thing Brent was there to hear the instructions because she was in no condition to comprehend it all. It was quite the mad house in the room and I waited awkwardly for her to be settled down so I could say something to her. 

Finally she was laying down with covers over her body, so I went up to her and said a few words, like “hi Dazee, it’s John”. Ha, she was so drugged up I wasn’t sure she would know who I was. She sort of acknowledged me, and said something about dad that totally didn’t make sense. I spoke no longer than a minute. Brent and I both had the understanding that the timing wasn’t great for a proper visit. He thanked me for coming. The next day I visited her again, and sure enough, she had not remembered a single thing about my visit the day before. We had a good second visit.   

The thing that struck me when I first read this memory from my brother, is my mentioning dad. He passed away 7 years ago. I feel like he must have been there with me during surgery. I like to think we had discussed some things. 

Weird things started happening two or three days after transplant. It was night and Brent had left for the night. I was laying in my bed. I had a nurse that would come into my room and say she would be right back, but then would be gone for three hours. I kept pushing my call nurse button, but they would say they couldn’t find her. I then watched as they changed the room diagonally across from me where they had a camera set up where they could sit in there and watch what I was doing. I could hear them in there laughing. There was a older couple that were walking down the hall, I would scream for them to help me. They would just look into my room and go on their way. 

It seemed like the whole hospital was in on the spying they were doing on me. The Director of the Transplant Clinic. All the nursing and doctor staff. They even told me that Brent and my kids were against me. They told me they were sending my sister in law Melodie to Germany to spy on me from there. When she got home I asked her to come really close because I had a question that I didn’t want Brent to hear. I told her I knew what she and the family were up to and I didn’t trust anyone. 

I know now that I was hallucinating. But when you are going through it, you constantly tell everyone you’re not. They just look at you and give you that smile. 

From My Sister in Law Melodie

In January 2019, I had just returned from seeing my newest grand baby in Germany. Dazee had had her liver transplant a couple of days before I came home. I had visited her on Monday and she seemed a little different. Given the incredibly invasive nature of a liver transplant, I figured it was somewhat normal, but I was still concerned. She kept asking me if I had really gone to Germany. 

Brent ran home to take care of a few things and returned quickly, anxious to take his place as guardian of his love. I visited again on Wednesday and suggested he run home again. He refused. He was gravely concerned and I was noticing how off she was. She was fearful the nurses were laughing at her (which is so unlike her normal thought process).  She started complaining that the water in her cup tasted like dish soap. Brent went and purchased her a bottled water, but she said it tasted like dish soap too. 

Now, I know this is something to watch for with SEIZURES, taste being thrown way off. The nurse came in to check for bedsores and I held her hand to help lift her, but then she started choking and having some foaming on her lips. I said Dazee! Dazee! Brent said, “I KNEW this was coming!”  He came over to us and the nurse pushed whatever button she needed to to get a team in there. 

SHE WAS EXPERIENCING A SERIOUS SEIZURE 

They told us to leave the room. Brent refused. He started putting chairs between me and him and the pathway so they couldn’t force us out. We watched as they worked on her, continuing to tell them we were staying. When they got her stabilized they told us they were moving her to ICU and a social worker took Brent and I into the waiting area. He was angry and upset. I was too and I knew I had to stay until he seemed more settled. I think he wanted to punch everyone out. His frustration was palpable. I cried on my way home and felt like I was a little bit in shock. I feared she was not going to be Dazee anymore. That was the most difficult day. 

Later when visiting her, she kept saying she wanted to die. Those words are hard to hear yet understandable given the incredibly difficult, painful, powerless feelings she must have been experiencing. 

I do not remember any of this. All I remember is waking up in ICU. 

 

WAIT.....WHAT????

This is a round door handle. Why do I show you this?  It’s to show you how my belly button looked and felt one night. 

You can’t really tell from this photo but it looked and felt like that door handle. It freaked us out. Why do liver patients get these lovely hernias. It’s because with all the ascites (fluid buildup) that keeps expanding your belly it causes them. I’ve had babies. Your stomach gets huge. Never got a hernia from that. 

 On January 23, 2019, we made a trip to the ER. The doctor came into the room and took a look at it. Tried to push it back down. Couldn’t get it to do it. He proceeded to call the liver team. They sent a surgeon in to take a look and see if he could get it back down. I started to see if I could push it back down. Lo and behold I did it. Finally the surgeon walks into the room and wonders why they called him down. They watched me for awhile and let me go home. Keep in mind this was about 11:00 PM. Get home, go to bed and fall asleep. 

About four hours after I get home, January 24, 2019, at about 3:00 AM my phone rings. I sleepily pull myself awake and it’s 

THE CALL

It’s the Transplant Folks. They inform me that I am the primary candidate for a liver. Can I get to the the hospital in a half hour. Geez, I’m asleep, in my jammies, and kind of scared. 

We get there. They hurry me into a room. They get a lab tech into the room, and he proceeds to take a ton load of tubes of blood. After he leaves, the nurse hurries me into the shower and gives me a shower. The Transplant team comes in and goes over a bunch of paperwork. You’re trying to take it all in. They tell you they can only tell you a few things about the donor. It was a male and he had committed suicide. I wish they wouldn’t have told me that part. It made me incredibly sad. 

SIDEBAR

Most times when you get a transplant, after you get  to the hospital you have hours to get ready. The organ might not be there yet. Organs can come from regional hospitals or further away. If they know the harvesting team at that hospital, and trust them they let them do it. If the hospital is not regional, they may need to send a transplant surgeon on the hospital’s private jet to pick it up and help harvest it. Then they have to fly back. 

We get all the paperwork signed. I won’t let go of my husband’s hand.  I have an incredible fear of being put out for surgery. Especially one that can take up to five to eight hours. It’s from watching stupid movies like Coma, where they tell their family members they have died, but they are actually keeping them on life support to harvest their organs. 

They are saying that they are waiting for me in surgery. What the???  I’m pushed out into the hall. I still haven’t let go of his hand. I’m scared. He’s scared. They let him go down the hall with me until they are ready to take me to the surgery floor. We say our goodbyes. He must have given me a hundred kisses. I could see the anxiety in his eyes. We say our goodbyes and off I go. I am so glad I didn’t have this transplant during COVID. I can’t stand thinking I would have to go through this surgery without him there with me. 

They stop you right outside the surgery door. The anesthesiologist comes out and explains what his role is and has you sign his “I will charge you separately” paper. Yes I mentioned my fear to him of being put under. They then roll me into the the operating room. 

I hear the nurses say that the liver is there. They use two surgeons. Sometimes it’s a surgeon and a resident/fellow co-surgeon. At this time I hear that Doctor FATTY was going to be the other surgeon. No!!!!!!!  He’s in the back getting the liver ready. 

They put me on the surgery table. They’re putting all kinds of things on me. Heart monitor, this monitor, that monitor. I’m terrified. I want my husband. The anesthesiologist puts the mask thing over my mouth and nose and tells me to breathe deeply. 

And then I wake up. 

I’m in my room. I’m looking around. I see my husband. I ask him if I have a new liver. I guess I thought it didn’t happen. He told me that I did get a new (used, haha) one. The surgery lasted 5 hours.

Physical Therapy (they are spawns of pain) came in the next day. They made me get out of bed. We were going for a walk. What??? Didn’t they realize I just had a major surgery?  Well, that complaint didn’t work with them. Pain masters I tell ya. Thank goodness they didn’t make me walk far. 

The next few days I don’t remember a lot that went on. Things were about to change. 

 

Things And Stuff

 Hello there. I know you’ve been sitting on pins and needles wondering what today’s post is going to be about today.  Here it is. 

Drum roll please............

Things and Stuff

The photo above is a little trick one of my nurses, her name was Madigan, showed me. She was my favorite nurse ever. She was my nurse on many of my hospital stays. I am a lip balm user. When in the hospital I was always loosing it. She came in, poked a hole in the tissue box, just big enough so the balm would fit in snuggly, and stuck it in. I use this trick to this day.

When you have your Time Share at the hospital, especially a Trauma One hospital, you learn all the codes. They do a tone so you know to listen for what’s happening. You all know Code Blue is the worst, every department has to get there stat. Doctors, nurses, lab techs, security, and whatever departments that need to be there. I loved listening to the codes. Code Trauma One meant the helicopter is on its way and they would give the minutes that it was going to arrive. Code Trauma Two, could be helicopter or paramedics with a severe case.  Still bad but not close to death. Code Stroke could be called for the Emergency Room or a hospital floor. Rapid Response was someone could have fallen on the floor and something like that. The codes would be followed with a building number, floor number, room number. So were Codes Blue and Strokes. 

One funny experience happened to me. I was in the room waiting to go have one of my TIPS procedures done. Heard the tones. My ears perked up. Then came “Code Blue, Building 5, Main Floor, (about that time I’m like, oh my gosh, that’s where I am), and then Room blah blah. What the??? That’s me!! Am I dead? About a zillion people showed up. Turns out there was a part on the computer by my bed. The nurse had pushed it without knowing. Phew, I thought I was a goner. 

You know these boards they have in your room. They put the date, your name, your nurses name, your aides name, and the custodians name, (I kid). I just couldn’t have it sit there.  I’d go over and write things on it. At the bottom they have little faces to rate your pain level. Well, since I’m adult enough to know how to rate my pain, but young at heart enough to go write things on it. They wouldn’t let me go home till I pooped. As you can tell I let them know what my poop situation was. 

Then there are the times I had visitors. I’m going to mention a few of the special times. These all happened before my transplant. 

I have a sister-in-law that I’ll call M. She came to visit me one day. I wasn’t feeling good.  I was sitting over by the window. All of the sudden I knew I was going to throw up. She hurried and grabbed a barf bag and rubbed my back while I threw up. What you need to know, and why this is such a special memory for me, is because she has a really bad gag reflex. If she sees someone throwing up, she will too. She would not allow herself to do it that day. You rock M. 

My kids and grandkids would visit me too. One day my son J. and his wife brought their kids to see me. They were 4 and 2 at that time. I happened to be in a room on the side of the floor that we could watch the helicopter take off and land. They would wait and wait for that to happen. And being a Trauma Hospital, it happened quite a bit. They must have gotten their love for watching that from me, because I could see it even while laying in the bed. One cool thing about being on the 10th floor. 

Another day my sister A. came walking in the room with this pillow. Don’t ask why it says And Ever,  but I think it’s because she will love me now and forever.  I have loved this pillow from that day on. The cool thing was that every night my husband would stack about 8 pillows around me before he left.  First of all because those beds are not the most comfortable things in the world. Also, the bed I was in was not level. The right side was lower for some reason. By stacking the pillows, it stopped me from falling out of the bed. I wish I had been smarter then and demanded a different bed. Oh they would hear the mean side of Dazee if it was happening today.

One day the PA came in and could see I was depressed. (You would be too if you had been in the hospital for two weeks). She told us to go outside for a walk. What the???  That’s allowed?? We wrapped me up in blankets covering my head and down to my toes. Went outside. Sat over by a fountain, when I looked towards the parking lot and saw my daughter M’s kids. We didn’t know they were coming. What a surprise. We sat outside and talked. Loved it. 

On November 11, 2018 we got a call from the transplant team telling me that I was the backup for a liver that was available. When you are a backup you need to go to the hospital so they can do testing and stuff. The doctor came in and said they were still waiting to hear if the primary patient was going to accept or deny the liver. There was another problem.  Apparently the donor was a 6’ 4”man. The team was trying to determine if his liver would even fit in my 5’ 4” body. No need to worry, the primary recipient decided to accept the liver so I was sent home. 

Alert....Alert. 

Cliffhanger.

 Next week we will be to the point of my life that you have all been waiting for. At least you don’t have to wait for a new season. Bwaa haa haa.