Not Again... (10/15/17)

Hello Sunday! I really wanted to go to church but since my immune system is still compromised I decided against it and opted for church online again. I got up and was extremely itchy. I didn't see anything so I continued with my morning routine. Of course, after I got dressed I headed downstairs to make some breakfast and take my medicine. I was still itchy but didn't want to take anything because I didn't want to fall asleep so I decided to deal with it. Well, that only lasted for about an hour and 1/2 and it got worse and now a rash is starting to form all over my upper body. 

Luckily my mom was at the house so I showed her and she said I need to take you to the ER because your back is covered with a rash. I remember saying some explicit word and saying I'm so tired of all of this and I don't want to be back in the hospital. She tried to comfort me but said we need to go. 

We pull up to the ER and I'm really uncomfortable and damn near trying to pull my skin off because it is itching so bad. Luckily for me, they take me right back to take my vitals and look at the rash. My mom works at the hospital and I'm having a lot discomfort so they speed up the process. At this point I'm in tears because it is getting to be unbearable. I explain I'm a liver transplant patient and on several different medicines. The nurse takes my meds and heads off to talk to the doctor. When he comes back he tells me they are working on a bed for me but in the meantime he is going to administer some medicine and start an IV. I follow him to a stretcher and he states he will be right back with the medicines. I tell him I was just discharged from the hospital because I had a rejection so my veins are pretty beat up and I'm not an easy stick. He looks at my arms and opts for my hand, the most painful place to go but at this point, I don't care because I want the meds. He tells me to take a deep breath and the next thing I hear him say is I'm in. Thank goodness that wasn't bad at all. 

Now, he can administer the cocktail which is Benadryl, Tylenol and something else I couldn't remember because as soon as he started pushing the Benadryl my arm starting burning and it hurt like hell. I started crying uncontrollably and he said he would get some saline to flush it through. I couldn't believe the pain and all I could think was I'M TIRED, REALLY TIRED and I want it to all go away. My mom was a little tore up because I screamed loudly and was crying really hard. She did her best to comfort me and I remember her saying something like Lord, please help her. In the next couple of minutes, I was dozing off and being pushed to my room. Once, I got in my room they were checking my vital signs and asking some questions but my mom was answering. I was groggy and half sleep so I could only assist a little. About an hour has passed and the rash started to disappear (I swear it's like deja vu) on my back and stomach. 

The doctor finally came in after (a couple of hours have passed) and he had my blood results. He said nothing new popped up and he thinks it's related to my medicines. He stated that he didn't want to do anything different but asked me to stop taking one of my medicines until I see my team on Tuesday. I was fine with that as I didn't want to be admitted to another hospital and since the rash was clearing up I was fine with going home. 

Once, I got in the car all I could think was not again! 

....And the Results are in... (10/13/17)

 I wake up to my phone ringing, I adjust my eyes while I'm picking up the phone and see it's someone from my doctor's office calling me. I answer and it's my favorite post-transplant nurse, Megan on the phone. She is calling with my results and I'm hoping the numbers are still improving. She informs me that they went down slightly but not by much and that my Prograf level has increased significantly. She asked me if I took my Prograf before I got bloodwork and I told her I didn't as this gives a false reading. She went over my medicines and told me she would call me back after she talked to the doctor about the results. I must admit I was a little concerned because my numbers had only improved slightly and my Prograf level was high. I was wondering if I needed to be concerned with my kidneys since I know the Prograf can be harsh on them. I tell ya what, Linus doesn't need any friends so they better act right! Instead, of working myself up I decided to go eat and wait for her to call me back. 

About 45 minutes passed and she is calling me back. She wanted me to decrease my Prograf and go back to Quest on Monday to get my blood work done again. We hang up and I send the text update to the family with the results. I get a couple of text messages back with some questions and I tell them I'm sure I will get the results on Tuesday since I have a follow-up appointment. For now, I want to rest and not think about it so I can try to enjoy the weekend. 

It's my standing hair appointment day and I already have a chauffeur so I'm excited because my hair is a mess and I need some pampering to feel pretty. It's been a rough couple of weeks. Well, if I'm being honest a rough couple of months..

Stuck on Thursday's (10/12/17)

I have been home for 2 days and my spirits are better! It really is something about being in your own home that makes you feel better. Well, this morning I have to get up early because I have to go and get my weekly blood work at Quest Diagnostics. I'm not really looking forward to this since my arms are already pretty beat up from my hospital stay and the constant blood draws. However, I understand this is a necessity for my Liver Team to monitor my liver enzymes and Prograf levels. 

I decide that I'm going to drive myself since it's about 10 minutes away from my house. Well, I make it there and back home and I'm EXHAUSTED! I actually had to laugh because I was pushing for my doctors to let me go back to work when I was getting discharged and they said I think you need to wait, your body has been through a lot. Now, I get it. I slowly walk up the stairs (damn, it seems like they never end) and head to the kitchen to make some breakfast so I can take my morning pills. I'm on 60mg of Prednisone and I'm quite hungry these days, the vain part of me prays I don't get the "moon face" but really I try not to focus on that because I just want to get better. I eat,  take my pills and head upstairs to get in the bed for a nap. I'm still quite tired so any chance I get to sleep I take advantage of it.

I don't have too much going on today! Thursday's are a waiting game...I go and get my bloodwork and wait for a call from the team to discuss results and possible adjustments for my medicines. I am still itchy so I've been taking a Benadryl to help me out a little so I don't dig into my skin.

So for now...I just wait! 

Home Sweet Home.. (10/11/17)

It feels great to wake up in my bed and take a hot shower! I was still weak but determined to do as much as my body would allow without having to rely on too much help. Well, that really didn't work because I was exhausted by the time I got dressed. I headed downstairs to eat breakfast and drink a shake so I could take my first dose of medicine. I have to take medicine all throughout the day right now so making sure I have enough food on my system is key! 

Around 9:30 am, my doorbell is ringing and I look to see my bestie standing at the door. Remember when I talked about that support system and how you know who is by your side through thick and thin. Well, she is definitely "my ride or die" she checked on me every day even when she wasn't feeling the best and booked a ticket to make sure she came to check on me. Oh, I forgot to mention she lives in da A. She literally flew in this morning and was flying out at 5 pm to head back home. I was happy to see her and glad she came up. Anyway, my day was filled with a couple of visitors and I was tired. I basically just wanted to sleep but was in awe that I have friends and family that love me no matter what I have been through and I'm going through. They just want to make sure I'm ok. I pride myself on being a good friend so when it is reciprocated it's such a blessing.

I'm just glad I'm home! 

Time to Roll... (10/10/17)

It's Day 7 in the hospital and I am ready to go home. I'm done the treatment so I am hoping they release me from this place. It is a very typical morning with the nurse coming in to take my vital signs and blood work. I get up and head to the bathroom so I can start my morning routine only this time I'm packing up my stuff because in my head I'm going home. 

My mom has spent the last 2 days in the hospital because she was worried about the allergic reactions and she's hoping I can go home. She is also in packing mode and decides to take stuff to the car. We haven't even heard anything from the doctors yet but we are both optimistic. I remember to call my dad to tell him to hold off on coming up (he's been working from my room) because I'm hoping and praying they let me go home. He says ok and to keep him updated. No problem! My mom is about to start taking things to the car and I ask her to bring me up some breakfast because I'm a little hungry. This time I'm going to keep it simple..turkey bacon, hash brown and grits. That should work. 

The team rolls into my room and the first thing I say is "Can I go home?" They explain they are just waiting for my blood work to come back and if the numbers have gone down more they will let me go home. They let me know they will need to take the PICC line out and that it will be done bedside. I asked a couple of questions but the most important one was "Is it going to hurt?" The doctor said no, I will be fine. The problem with that statement is I watched videos the night before about removing a PICC line so I wasn't so sure about his truth. I actually said well it hurts now so I think it will hurt coming out. He said fair enough and we left it at that because unless you have had these things done to you I don't believe you can tell someone it won't hurt, you won't feel anything, etc. But I digress. 

A couple of hours pass and a doctor comes in and tells me that my numbers improved and although they aren't in the range they are comfortable with sending me home. I was elated I can finally get home to my bed and my shower. I call my dad and tell him and he's happy too. Now I just need to wait for the doctor to come in and remove this PICC line. It did seem like it took forever for the doctor to come in but in the hospital, it seems time moves really slow. He walked me over all the steps and what I needed to do when he is pulling the line out. It took a total of 10 minutes (including removing the tape, and pressure) and my arm was free. Beat up, burning and bruised but it was free and so was I! They informed me that I would be on all the same meds I was on when I first got transplanted and around 7 pm I was on my way HOME. 

P.S. I have a video of the removal of the PICC line but I will keep that to myself but here is a picture :)

How are you feeling? I'm ready to go HOME! (10/9/17)

Hello, Monday! I've been in the hospital for 6 days and I'm ready to go home. I made it through Sunday night without a major rash but some redness and still itchy. The nurse has already made her debut and did her morning routine so now it's time for me to get up to do mine. While I was in the bathroom the team came in and said they would be back shortly. I thought great maybe they will tell me I can go home today. I highly doubt it because I still have to get my last treatment. However, I have questions and concerns! 

They come back in and surround my bed and explain to me that the numbers are improving just slowly but the treatments are working. Then we start talking about the allergic reaction I experienced and the itchy feeling. I had pictures of the rash on my phone (have to capture moments, especially when it goes away) to show them so they can see what happened to my body. They still wanted to move forward with the last dose of treatment and I had a bunch of questions. What if this time the allergic reaction is worse? What will they do to combat that? Do they think it is because I'm taking so many medicines at once my body is responding differently? Will I be able to have more Benadryl? Not only was I asking questions my parentals had a couple of clariifying questions as well. I remember them looking at me and asking me what I wanted to do, reluctantly I said I'll do it. I just want it over with. I don't have a choice. My dad said you always have a choice and we support you. Needless to say, I went through with the last treatment. I really just wanted to go home. 

I already knew that I wouldn't be heading home today but the team said that if everything looks good tomorrow morning I can go home. That made Monday so much better so I went through with my treatment and slept knowing I would be able to leave tomorrow! 

Sunday..no Funday (10/8/17 cont.)

I went to sleep listening to gospel music and I woke up to it still playing in my ears. The team hasn't arrived yet so I'm just laying in the bed waiting for their arrival. I'm still itchy but no rash right now so that is a good thing. My mom is still hanging out but she is sleep so I grab my computer and watch church online. Thank goodness for technology RIGHT! 

The team finally arrives with a doctor I never met before and go over my numbers, ask me how I'm feeling and if the rash came back today. I show them the pictures of the rash and tell them it hasn't come back but I still feel the sensation to scratch my skin. They tell me that they will monitor me and I will get a Benadryl when it is time for my pre-medication before the Thymoglobulin treatment. I ask if they think I'm having an allergic reaction to the treatment and they say it could be a possibility but because I have already had 2 treatments they don't think so because of the half-life. I won't bore you with the pharmacokinetic jargon. Anyway, I say ok but I'm very weary about getting the treatment now. They let me know it is helping and they need to continue so, I oblige. 

Once they leave, I eat something and fall off to sleep. Once, I wake up it is time to start the pre-medication so here comes the choking and coughing followed by some sleep. One hour passes by fast and it is time to start another 4-hour treatment. As I lay here, a plethora of emotions pass through my mind. Mostly, just worry and sadness because I'm tired of being in the hospital and if I could rewind my life a couple of months ago I would quickly! All I can think is Sunday isn't a Funday. 

Something is Wrong... (10/8/17)

I wake up feeling warm and extremely itchy. The patient care tech is walking in to check my vitals and she informs me I have a slight fever but my other vitals are fine. She leaves and tells me she will let the nurse know and they will monitor my temperature. I'm trying to pay attention to what she is saying but I can't stop scratching my back. I look over at my mom and I say something is wrong I can't stop scratching. She tells me to lean up and sure enough, my back is covered with a red, blotchy rash. She rings the call bell so the nurse can look at it and tells me to try and stop scratching.  I try but it is really uncomfortable and its spreading to my neck and stomach. I just start to cry because I'm scared and all I can think is how much can one person continue to take!

I get up and head to the bathroom to put the hospital gown on so my back can get some air. The cool air feels good on my back so I ask for some ice packs to lay on for relief. I get the ice packs and wait for the nurse to come in. She looks at the rash and says she is going to call the doctor to come in to look at the rash. About an hour and a 1/2 has passed and the rash is starting to disappear but the itchy feeling is still present. The doctor finally comes in and says that I obviously had an allergic reaction but she is not sure why. She states the nurse can give me Benadryl if it comes back and she will inform the team so they are aware when they do their rounds. It's early Sunday morning so I have some time to sleep before they come into my room. 

I remove the ice packs, grab my phone, put my headphones on and listen to Gospel music. I need some encouragement and faith because my spirits are down. 

Goodnight! 

P.S. I tried to upload the picture of the rash but technical difficulties won't let me be great! 

Saturday Blues Part 2 (still 10/7/17)

I wake up from my nap and its time to get my pre-medication before I start the 2nd dose of treatment of Thymoglobulin. My mom has made it back to the hospital and my sister is still there updating her on the daily activities. The nurse comes in and lets me know she is going to administer the Benadryl via my PICC line in my left arm (freaking great is my thought...more damn choking) along with the Prednisolone which will run for the hour. I can take the Tylenol via mouth so I take that first because it's the easy one. So let the good times roll, she starts to push the Benadryl via my PICC line and just as I expected I start choking and 5 minutes later I'm knocked out. I must have slept for the hour because as I was waking up my sister was getting ready to head back home. I said my goodbyes and out the door, she went. 

My mom was heating up some food for me but I really didn't have an appetite so I ate a little bit of the pasta she brought from home and took my rejection meds. The nurse was on her way back in to start the 4-hour treatment. She hooks the medicine up to my PICC line and I checked my phone to see if I missed any calls, texts or emails and then lay down. As I said before, the nurse comes in every 15 minutes to check my vital signs to make sure I'm not having an allergic reaction. So far so good and off to sleep I go. Oh, did I forget to mention I also have a patient care tech come in and check my blood sugar 3-4 times a day! The medicine is hard on your body and increases your sugar so they monitor me constantly to make sure I don't need insulin injections too. It's all just a bit much! 

Saturday Blues Part 1 ...(10/7/17)

So it's Day 5 in the hospital and I'm definitely feeling down. I would love to paint this great picture that I'm strong and I can handle anything that comes my way but today I just don't have it in me. I wake up feeling nauseous and my damn arm is in pain. I look over and see my sister sleeping and all I can think is I don't want to disturb her but I'm kinda hungry. I actually slept a little later this morning which is shocking because it's the hospital and you don't sleep in the hospital.

I finally decide to get up and changed for the day before the docs roll into my room. It's Saturday so they won't be in until early afternoon. Once, I'm done I ask my sister to go and get me breakfast which is my usual grits, hash brown, eggs and turkey sausage. She brings it back and I start to eat but I'm not really feeling it so I finish my grits and push it aside. I really wasn't feeling great! I decided to lay down hoping it would calm my stomach. Well, I was laying down for about 10 minutes when I jumped up and starting vomiting all over the place. My sister grabbed the trash can but most of it made it on the floor and on my bed. I really felt bad but I couldn't stop. I just remember saying I'm sorry I couldn't help it. My sister is really good in situations like this she has that "take charge" personality. She called for the nurse to get housekeeping and explained I just threw up. She helped me into the bathroom and cleaned me up and then cleaned my bed and changed the sheets. While I was in the bathroom putting on new pajamas I heard her telling the nurse I have my sister I just need you to get housekeeping. The nurse said something and she said I have my sister, I need you to handle housekeeping. I really wanted to laugh but I couldn't I felt like crap and just wanted to lay down. 

By the time I got out the bathroom my bed was freshly made and the room smelled clean. She helped me into the bed and I went off to sleep. All I could think before I went off to sleep was what the hell kinda day is this going to be it's not even noon yet! At least I can look over at my flowers and smile. Yes, I forgot to mention I had 2 deliveries (on Friday) which made my day. Having a support system and people that care about you, check on you via phone or email really helps. It's times like this when things aren't the best in your life that you realize who is really by your side (sometimes people you don't expect to be..show you differently!) 

And so it begins... (10/6/17)

I wake up to the usual..bright lights being turned on and a nurse drawing my blood and taking vital signs. I'm not the best person to deal with in the morning time when I'm feeling great so imagine me at 6 a.m. Anyway, I'm in a lot of discomfort due to the PICC line and didn't sleep through the night. I lay in the bed a little longer and finally decide to get up and freshen up before the team comes in with their daily plan. 

My mom is already on her way down to the cafeteria to get me breakfast. It's been grits, hash browns, and turkey sausage. I'm not a breakfast person but I'm trying to eat when I can because my appetite has been obsolete. Anyway, I eat my breakfast and take my morning pills and then the team comes walking in the door. The plan is to start the new medicine but I have to be premedicated before the medicine is administered for 4 hours. The premedication consists of Benadryl pushed through my PICC line, Tylenol and 1 hour of Prednisolone via the PICC line. About 1 hour later they will run the Thymoglobulin for the next 4 hours. Sounds simple enough, right?

Well, it's my first day and I'm a little nervous because the medicine is going to be a direct hit to my body since the PICC line is so close to my heart and every other organ. Needless to say, the experience wasn't that great. When the nurse administered the Benadryl I started coughing and felt like I was choking all along tasting the medicine and feeling it in my nose. I wasn't expecting that and it scared the crap out of me. I remember my dad patting my back and trying to help me but then I became a "weeble wobble" and immediately was knocked out. I remember the nurse checking my vital signs and saying she would return in an hour with the other medicine. I was sleep or what I like to think of "cat napping" the entire time. I could hear people talking but couldn't quite make out the faces. I finally woke up in time for the medicine to be administered and couldn't fall back to sleep for the 1st hour because the nurse was constantly checking my vital signs and temperature. After the 1st hour, I was knocked out sleep and remember waking up briefly to my sister's voice. She must have just arrived and was getting the updates from our parentals.  I knew that she would be staying there for the weekend and kicking out the parentals soon. She likes her one on one time. 

Off I went to back to sleep...

Time for the New New... (10/5/17)

It's Day 3 in the hospital and I have had a liver biopsy and ultrasound, both have confirmed that Linus is in danger and an acute rejection is taking place. To understand the severity of this rejection my AST and ALT are in the 1000’s and 2400’s (normal range should be no more than 30 and 29.) Anyhoo, they have started me on a high dose of prednisolone via my IV and a bunch of antibiotics and anti-rejection medicines to help calm my aggressive immune system down from attack mode.

Each morning the nurse comes into my room to get vitals and blood work this way when the Liver Team rounds they have my results and can come up with a plan on how to move forward. This morning, the plan is to start me on an aggressive anti-rejection medicine Thymoglobulin. I have never been on this medicine and of course, I have several questions. The medicine is to be administered 4-7 days via a PICC line for 4 hours. I was informed that I would get the treatment for 4 days and I would have to be pre-medicated 1 hour before the treatment started. My head was spinning and I was scared. I remember looking over at my mom and asking her if she thinks this will work. She just looked at me and said I pray it will. My dad was in the room and he had a couple of questions but as they always say….the choice is up to you we are here to support and back you up. I obviously decided to do the treatment but was a little anxious about the placement of the PICC line. Was it going through my neck or arm? Would it be painful? Would I be put to sleep to have it placed while I was awake? So many things running around in my head but yet I try to remain strong. Just a side note: I rarely feel like I can show weakness.  I believe they put a rush into Interventional Radiology so I could get the PICC line placed ASAP.

Once again, my ride was at my door and I was on my way down to IR to get my PICC line. My dad came down to keep me company and I’m sure to calm his nerves and ease mine as well. They wheeled me back to the procedure room and once again I was getting prepped for placement of a PICC line in my arm. I would love to say it was easy breezy but come on…IT’S ME and nothing in my life is easy breezy. It hurt like hell even with the Lidocaine and I was awake to feel every bit of it. I have difficult, small, deep veins that don’t like to be picked and poked at but eventually they got the line in place.  The line was inserted into my arm, above the bend of my elbow through the vein until the end of it is near my heart. I was wheeled back to the waiting area and taking back to my room shortly after.

Can we say I need some pain meds, a break and a damn nap! 

Procedures and Tests...Pick, Poke, Pick... (10/4/17)

Before I went off to sleep, I was told I couldn’t have anything to eat after midnight because of possible testing on Wednesday. No problem, I wasn’t that hungry so I drank some water and headed off to sleep.

At 5:30 a.m. I wake up to a knock at my door and in walks the nurse to draw blood work and check my vital signs.  After she leaves I try to fall back asleep but can’t so I stare at the walls for about an hour. I finally decide to get up and get a shower before the Liver Team starts doing rounds on the floor. I do like to be presentable even if I’m sick in the hospital.

At around 9 a.m. the Liver Team walks into my room.  They start to ask several questions and then let me know I was scheduled for a liver biopsy and ultrasound later that day. I had already had the IV placed in my right forearm so I was just patiently waiting for my escort to take me down to Interventional Radiology. After several hours of waiting, my ride finally arrived at my room and I was headed to have my liver biopsy.

Now, having a liver biopsy should be easy for me but this time I was scared and a little nervous. I hadn’t had one in 2 years and I wasn’t looking forward to the needles used to numb the area or the tender pain you feel after the biopsy.  After signing, the consent form I was wheeled back to the procedure room. They started to prep me, asked me if I wanted to be put to sleep and I immediately said Yes! They administered some medicine through my IV and I was knocked out. I’m such a lightweight!

I woke up about 45 minutes later and was being wheeled back up to my room. I was starving and in pain. Once, I got to the room I just wanted to eat and sleep but unfortunately, I had to wait for my ultrasound to be done before either of those things could be accomplished.  About 2 1/2 hours later I was on my way to have an ultrasound. Now, having an ultrasound right after a liver biopsy is not the ideal situation since you are still tender but I guess a girl's got to do what a girl's got to do. Anyway, I waited for an hour and ½ before I even went back to the room. Once in the room, I was informed it would take about 30-45 minutes but if I couldn’t deal with the pain they would stop. I just wanted it all to be over with so I dealt with the uncomfortable pain (with a doc holding my hand) and let the tech finish. I’m just hoping that Linus hasn’t been beaten up too badly and can be saved. 

1 year, 7 months...It's been a while but I'M BACK! (10/3/17)

So, I don’t know where to start a lot has taken place since I received Linus. Here is a quick update before I get to what brought me back to my blog. I got laid off from my job, immediately started with another company and 10 months later went back to my old employer. I fell in love but unfortunately, love didn’t fall in love with me, however, I traveled to some great places and had an amazing journey. Lastly, I learned who my true friends are and lost some along the way. I received some hard to deal with news I’m still coping with till this day but I believe a miracle is coming my way or should I say I'm taking steps to make a miracle happen! Oh and I forgot to mention I bought a house…congrats to me! Basically, LIFE took a toll on me (I’m sure it does everyone) and has been pretty hard navigating but like all things I always make it through with the help of GOD of course.

Now, to why I’m BACK. Well along the journey of switching jobs that beautiful thing called insurance also needed to change and I had a glitch and in turn couldn’t get one of my anti-rejection meds for about 2 ½ weeks. I finally got my meds but it was too late. My awesome autoimmune hepatitis flared and my defenseless immune system saw an opening and attacked Linus. After getting some blood work on October 2, I received a phone call on October 3 from my doc and all I heard was your liver is rejecting and I have to bring you into the hospital. This is definitely not what I wanted to hear and was scared as hell. What did this really mean? Was I going to have to go through another transplant? Would my liver completely fail? How long would I be out of work and in the hospital? An abundance of questions spiraled through my head with tears flowing from my face. I called my mom to let her know I need to go and made another phone call to someone (no answer- a text would have to do) and headed home to pack. 

Arriving at the hospital was quite daunting…I was walking the same hallway again only this time with no idea how long I would be there and what the plan would be to save Linus and me.  I changed and nurses and the liver team came in to assess me and told me they would be back in first thing in the morning to discuss procedures and the course of action. I was glad because I was tired, scared and just wanted to sleep.

I guess I will see what happens when I wake up…