HAKUNA MATATA

HAKUNA MATATA

What a wonderful phrase 

It means no worries

For the rest of your days. 

This is my mantra. It has to be. If not, well, I would be deep down in the holes of despair. 

I know I’ve used this photo before but I wanted to remind you how I looked when I started chemo. 

A few things that need to be talked about today are things you just have to know about when it comes to chemo.  

Let’s start with hair loss. It doesn’t just start happening with your first round. That’s because your body is saying, “what the hell are you doing to me? I’ll forgive you this time”. You start brushing your hair and a few strands come out like they normally would. 

Then comes your second round. Your body says, “hey, I thought we talked about this!!!”  You start noticing a little more hair coming out now. But you just tell yourself, phew, that’s not too bad. 

And then, after round three, dun dun dun, your body says, “buckle up buttercup, you are in for a ride.” You brush your hair and all of a sudden you have a huge softball size mound of hair in your hand!  With everything I’ve gone through in the past two years at this point, this is the first time I broke down crying. All day crying. Go through a whole box tissue crying. You have a huge scar on your body from your transplant, which you don’t cry about, but losing your hair puts you in a tailspin. 

I had my daughter-in-law come over and cut it closer to my head. Figured I wouldn’t continue crying if I was losing short pieces of it at a time.

Here are some photos of my continued journey of the loss. 

This is my brother Phillip. I posted about his trip to see me in my previous post, “C The DIFFerence A Week Makes”. I’m sure when he visited me this day at home he was taken aback by my hair loss. I myself was taken aback that he had more hair than me. 

You continue losing more hair until you are finished with treatment. Then it comes back in but not all over your head. A few here and there. It takes longer than you think to get a glorious head of hair again.  Good times. 

Let’s go on to some something you might not know. When you lose your hair, you also lose your nose hair. I know right, I had no idea. So if your nose runs, there is NO HAIR in there to stop it from streaming out of your nose. I had to start shoving tissue up my nose. 

I actually went to an appointment with my liver doctor looking like this one day. This is the day I learned the BREAKING NEWS. There is an item like this 

WHAT THE?  A nose tampon?  Why have I never heard of these before? They actually will use them for patients that get nosebleeds because their platelets are extremely low. I never had a bloody nose.  My platelets got super low, but not extreme. It isn’t uncommon to see other patients in their chairs getting platelets or blood transfusions. 

I might have to invest in some nose tampons because even a year later I get bad runny nose syndrome. I made up that it’s a syndrome, but it’s my blog so I can say what I want. 

Stay tuned next week for more interesting and amusing facts. 

 

YOU WANT HOW MUCH?????

On May 7, 2019 the cancer clinic told us that the Rituxan chemo drug that they were giving me just wasn’t doing the job. They had decided it was time to do the whole regiment of drugs. This is called R-CHOP. Look at that picture. I had hair. Also I was wrapped in those awesome warm blankets you get in the hospital. I was cold most of the time. 

I always thought that there was one bag that had the chemo in it.  Nope, R-CHOP is five (5) different drugs.  On chemo days they always weigh you and take your height. This is so the pharmacist can mix your drugs according to your height and weight. Who knew?  (well you do now since I just told you). You’re welcome. 

I had two rounds of the Rituxan before they started the six rounds of R-CHOP. In my case I was getting chemo three weeks apart.

They don’t give you the drugs all at the same time. One at a time. This way you are devoting 5 to 6 hours a day to the process. They have snacks and drinks you can have. If you’re there for longer than 4 hours they will get you a plate of food. (at least at the hospitals I spent my time in). This was not just that icky food I had during most my hospital stays before and during transplant. You got a menu. You got to choose what you wanted. They bring it right to your chair. 

Menu items included pasta, sandwiches, pizza, regular meat dishes, soups, salads, and a chicken wrap. Oh and dessert. Be still my beating heart. Of course, (don’t tell anyone I told you this, but I would order enough so that Brent could have half). My favorite was the wrap (big enough for two), cheesy potato soup (for me), a half chef salad (for Brent), a chocolate milk shake for him, and my favorite, cheesecake with caramel sauce. You pay enough for the treatment, so they can afford what we ordered. 

Speaking of being billed for services. Let’s go over the cost of being super sick. 

This was the statement of total charges from January 1, 2019, to the end of May. You read that right. $1,178,339.12. One million, one hundred seventy eight thousand, three hundred thirty nine hundred, dollars and twelve cents!! That’s how much was billed. The amount paid was only $80,402.09. All I can say is, thank God I’m on disability Medicare. The hospitals and doctors have to accept the payment given and I’m not charged for the difference. If you or a relative are on regular insurance you might be asked (or forced) to pay the difference. Living in other countries that don’t make you pay the difference sounds somewhat better right now, doesn’t it. 

Let’s talk about the chemo drugs. Here’s a list and charges for the ones I was given. This is for the all the rounds I got. Remember I had 6 rounds plus an additional two of Rituxan.  

Rituximab.   $106,032.00

Cyclophosphamide.   $9,794.40

Doxorubicin.   $2,718.90

Vincristine.   $1351.80

Prednisone.   $571.50

Neulasta.   $45,646.68

Neulasta is a shot that they give you 24 hours after chemo. It helps your white blood cells to regenerate faster. 

Sidebar:  Does it bother anyone else that when they show cancer patients on commercials they don’t look like they have cancer?  I mean, that’s just false advertising. You look a sickly color. Show it how it really is. Don’t make it look like it’s a walk in the park! 

If you add up all my charges for the year 2019, which includes all the transplant, chemo, tests, procedures, lab work, etc,  the total amount is $1,344,445.37. 

Yikes

According to my accountant Brent, the amount of charges for the years 2018 through 2020 is over $2,300,000.00

And you wonder why so many people file bankruptcy due to medical bills. 

Ummm...NO!!!!

I’m sure you’ve all seen this welcome unwelcome sight if you have been admitted to the hospital. “We must see your urine output”. Ok. Whatever floats your boat. Glad it’s your job. Not mine. 

When I got admitted to the cancer floor, I walked in the bathroom and not only see one “hat”, but two!! Ummm, what you talking about Nurse Ratched?? I see no water. You’re hiding it!! Well, guess what?  You get to POOP in one of those hats!! DAILY!! Much screaming in my brain. I do not like pooping in a hat, you can not make me you big rat. I’ve never had to do that in all my hospital admissions. Ok maybe when I had C-DIFF, but that was different. Breathing, breathing. I asked her how people felt about this fine adventure. She said the female patients accepted it, but the cry baby sissy face males didn’t. Don’t know what they’re looking for in said poop, but have fun. 

The first room I had, had a self leveling bed. Oh, my, gosh. That was heaven. Hospital beds are the most uncomfortable things ever. Ok, not as uncomfortable as those darn tables they put you on for procedures, but you know what I mean. When ever I moved on this gift from heaven it would inflate and deflate to fit my body. So so cool. 

Your room on the cancer floor are negative pressure rooms. The door to your room is always closed unless someone is coming in and out. It has a air system in them that sucks the bad particles out. Therefore when you have visitors (before covid hit), they could come in your room without masks. But if you need to be taken down to get a procedure, or just to take a walk, you have to put on a gown, gloves, a N95 mask, and socks. They don’t want you catching any bug since you are immune compromised. 

One other thing I had done on my first admission was a Bone Marrow Biopsy. They have to check to see if your bone marrow has cancer in it. If so, you might have to get a stem cell transplant. Thank goodness the shot of deadening goes into your pelvic bone, cuz that sucker hurts like living hell.

 

This is the needle they shove stick into you. 

It’s called a Jamshidi Needle. Even the name says JAM. For your info, the verb definition is to squeeze tightly into a space, shove something into position. 

I can’t imagine the pain of feeling that needle grinding into your pelvic bone to get the sample. Let’s all take a moment of silence. 

 A week after I was released from the hospital, I had a cancer clinic visit. I hate to say it, but I looked kind of like this. 

Yup, I had jaundice. (That is not me, I can’t believe we didn’t take a picture of me, what the?) Jaundice happens when your liver enzymes are not doing well. Your bilirubin lab goes high. Your bilirubin rising also causes itching. Not fun.  And you know what I learned by reading over my reports from this visit?  The yellowing of your eyes is called SCLERAL ICTERUS. Why don’t they just call it jaundice? Geez. 

Here’s another stupid thing I read. On that visit they LOWERED the dose of my anti anxiety drug. Hello!!! We must have been in “too many things happening overload” to have not questioned this. Like they thought my anxiety level would go down!!

That same afternoon I had a liver clinic visit. According to my doctor, my liver enzymes were demonstrating signs of improvement.  Plus, Joyous Rapture, I get to have lab work done twice a week. 

I’m having the time of my li-ha-ife 

No I’ve never felt this way before

Yes I swear it’s the tru-u-uth 

And I owe it all to my bad liver

 

Why Are You PICCing On Me?

Battle scar for getting the chance to live a longer life. Stretch marks scars for giving life to three beautiful children. I wear my scars with pride. 

After leaving the hospital the second time when I got C-DIFF in February 2019, I started the process of recovery. I had to go get lab work done every week. I was doing ok, but then my Alk Phos started rising. Alk Phos is a liver enzyme. On April 5th a MRI was done. Then a liver biopsy was done. The normal range for this lab is 40-120. Towards the end of March, it started rising. On April 12th it was around 1500. 

I had a visit with my doctor on that day. We went over the MRI and biopsy report. At this time he diagnosed me with EBV-PTLD, Posttransplant Lymphoproliferative Disorder. EBV is the Epstein-Barr Virus (Mono). My male donor was positive for this. I was negative. So I developed it from him. 

SIDEBAR

One thing you might not know is when you get on the transplant list, they will talk to you about whether you want to wait for a good organ, or if you will sign a paper saying you will take an organ that has some kind of virus, like HEP-C, EBV and CMV. They will transplant these organs because they have medications to treat the symptoms. If you want that “good” organ, you can be on the waiting list for a lot longer. We did sign the paper. They are supposed to tell you before you go into surgery that the donor has some of those viruses and do you still want to take it. You have to sign a informed consent.  

Then my liver doctor broke the great (NOT) news that I had Non-Hodgkin Lymphoma. NOOOO!  Of course I immediately started crying. Why is all this freaking stuff happening to me. He said that on the MRI they saw a lesion (or tumor, they both mean the same thing) on the right quadrant of my liver. It was 1.9 cm or 3/4 in. 

What is the difference between Hodgkin and Non-Hodgkin Lymphoma?

• Non-Hodgkin lymphoma is more common than Hodgkin lymphoma.
• The majority of non-Hodgkin patients are over the age of 55 when first diagnosed, whereas the median age for diagnosis of Hodgkin lymphoma is 39.
• Non-Hodgkin lymphoma may arise in lymph nodes anywhere in the body, whereas Hodgkin lymphoma typically begins in the upper body, such as the neck, chest or armpits.
• Hodgkin lymphoma is often diagnosed at an early stage and is therefore considered one of the most treatable cancers. Non-Hodgkin lymphoma is typically not diagnosed until it has reached a more advanced stage.

At this time he took me off of my immunosuppression drugs.  We were told that most patients that have chemo after a transplant don’t need them because chemo kills all the cells in the blood that know you have a foreign agent in your body.  He also told us that a percentage of transplant patients will get this. Well aren’t I just the lucky one! 

He said that the Cancer Clinic would be calling me and sent me home. We were home for about a hour when they called and asked if I could go up there right now. Ok. That was fast. I packed my bag and we headed there. I was admitted. It is a crazy feeling to be told you have cancer and get admitted the same day. Your head is spinning. 

The next morning we met with the Oncologist. She came in with a bunch of paperwork because the liver doctor told her that Brent researches everything. (he once told Brent that he asks more questions than medical students, and a lot better questions at that). Well, Brent cares about me and will look for all answers to his questions. 

She said they were going to start me on Rituxan, one of the chemo drugs. She was hoping that this one drug would work by itself, but I would have a PET scan done after two doses to see how it was looking. Before I would get the drug, I was sent to get a PICC line put in. 

A PICC line is a thin, soft, long catheter that is inserted into a vein in your arm, leg or neck. The catheter is positioned in a large vein that carries blood into the heart. This is done with the help of an ultrasound. The Tech started with my right arm. She kept looking at the ultrasound. Apparently I have weird veins. The catheter would get to a place where there shouldn’t be a valve opening.  Oh no. What have we here. A valve that is opening and closing. It would block off and crimp the line. (A small percentage thing). She pulls it out and moves to my left arm. Yes another poke. Errrr. The left vein doesn’t have that problem. She gets it to my heart and then waits for the machine to say everything is working the way it should. She then stitches the piece you see in the first picture that is under the clear piece. The stitch’s (2) holds it in place on your arm so it doesn’t move. 

At least with a PICC line you don’t have to get poked every time. Even your labs are drawn from them. Phew. They have to be cleaned around the injection site every week so it’s lots of trips to the hospital. 

I was released from the cancer floor three days later. But there was a lot that went on during those three days. 

What were they?  You’ll have to wait till the next chapter. Hehe

 

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. 

 

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

TIPS

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

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

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

TIPS PROCEDURE #1

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

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

This is what the shunt looks like. 

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

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

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

TIPS PROCEDURE #2

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

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

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

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

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