Broken Hearts and Backless Gowns

My journey to getting a new heart…

Day 172: Life is a Beach

Hello all, I’m back from my hiatus with a little update:

I got a new bed that uses sand and air to help with my back pain. Apparently the criteria for using this bed is really high, but my doctors and nurses were able to pull some strings. It’s usually for patients with bed sores and it helps stimulate blood flow. It’s super soft and feels like I’m back at Myrtle Beach. The only downfall is that it’s super loud. It sounds like flying in an airplane. It has really helped my back pain but hasn’t cured it.

I was feeling blue for a little while and all I did was cry. If I wasn’t crying because I was sad, I was crying because of my back pain. I was tired of having to go through the same routine each day. And being in a cloud of morphine wasn’t what I wanted, especially when Nico was visiting because I never got to spend time with him.

I spoke to a psychiatrist and he asked me a bunch of questions. He gave me a choice of trying an exercise for a week or taking anti-depressants. I chose trying the exercise because I didn’t want to add more meds to the list. The exercise was to figure out how to manage my pain so that I could do the things I enjoy. My doctor suggested a different type of pain medicine that uses a patch and gives a low, consistent dose throughout the week (kinda like the nicotine patch for smokers trying to quit). During the first few days I asked for morphine maybe once or twice. Then I stepped down to using Tramadol whenever I noticed any signs of pain creeping up, and now I haven’t asked for morphine or Tramadol.

I was starting to feel like myself again. I would ask Nico to come sit in the bed with me, Mike and I could actually talk to each other. So, so far so good.

About a week ago, Dr. Simpson told me there was only one person in front of me on the list and that he predicts I should be hearing something within the next 2-3 weeks. I didn’t think much of it because I was in my blue mood. But now that I see I can be pain free and enjoy being myself again, I am feeling hopeful. If what he predicts actually happens, I might be home at the end of April! Thank you for sending me all your good juju and mighty prayers, it seems to be working!

Day 156: Reset

Today was tough, physically and emotionally. I thought it would be a good day. My dad brought us a yummy breakfast, and I knowing I would see my boys kept me in good spirits.

The option to move my balloon pump to my chest area (which would allow me to not be bedridden) was turned down earlier this week due to my small frame.

Today, my back pain was bad today, even after my massage therapy session. It’s frustrating knowing I have to deal with this pain until my transplant. I also learned that today, I have officially been on the list for 120 days. I also learned that my transplant team turned down an offer recently and that it was a really close match, but it wasn’t exact.

That blew me off the edge. How do I reset from that? I feel like I’m in limbo. When I arrived, there were only 2 other patients on my floor waiting for a heart (one was admitted a few days before me). Today, both neighbors are being discharged with their new hearts. I am elated for them both, but I can’t help but wonder: when is it my turn?

I cry at the drop of a hat whenever I think about it and I hate showing my emotions. I’m crying now and I don’t want to wake the boys so I’m ending this post now. Goodnight.

Day 142: Bittersweet 

Hi guys! I am elated that you want to visit, but my WBC (white blood cell) count is still high and it would be best to limit my visitors. 

Let me also remind you that my day consists of round the clock diuretics and laxatives. Diuretics make you pee, laxatives make you poo. However, the  Miralax  that they pescribe me cramp up and turn my poo to a baby food consistency  (even on a half dose). 

Doctor’s goal: poo  2-3 a day ! but even a half  dose makes me goaround 5-6 And the timing is it’s not consistent. Some some visitors have walked on me  too!Clean up is a mess, takes abt 10  but it’s awkward. Nurse or PC 

Also, I’m also in pain from other scans . 

Also, I have a sneaky suspicion something is happening soon. I’ve been meeting people from transplant team, some who just want to meet me. 

Last night I was in so much pain bc the lost of fluid from all the diuretics. My chest area suddenly the area started cramping real bad bc my potassium was low and I ended up taking morphine. I was so scared. Dr Simspon said everything was fine. So they gave me morphine, and adavan, and cancelled one night of diuretics. I was able to get some rest. 

So back to the subject of visitors, it would be best to send your well wishes from home, But if you need to drop something off, my mom won’t mind meeting u in the garage to pick to pick it up 😁

Day 139: Just saying Hi

So.. A quick update while I’m lucid. From what I was told, since my last post, my liver and kidney numbers declined drastically because of some GI problems (I couldn’t poo ). It got so bad that I was taken off the transplant list. I remember none of this. Mom said I was not myself. I was confused, combative, disoriented, and mean.

But after drinking some magical juice, I started to poo, my numbers improved, and I was put back on the list. Thank you for all the prayers, support, and good vibes!!

I, still don’t remember all that. I think yesterday was my first real lucid day.

Today my kidney numbers were slightly elevated, so they ordered a HIDA scan which requires a nuclear tracer injection and NPO (fasting) for 4 hours. The tech didn’t show up until 6pm and the test took over an hour 😓.

When he was done, his supervisor asked for additional pictures, but he said he would come back in the morning instead since he felt bad I hadn’t eaten all day. Moms almondigas tasted so good 🤗!

That’s all for now…until we meet again.

Day 128: Balloon Birthday

Thank you for all the birthday wishes! I’m sorry to say that that I won’t be updating in a while, My health is declining (yesterday I was a bad day for me). Today, Dr. Simpson just notified me I need a balloon bump TODAY. It’s been hard for me lately, I don’t know what I would do without all your support. Thank you for thinking of me. Sending you all good vibes and juju.

Day 126: Blue

I’m sorry my posts are getting further and further apart. To be honest, I’ve just been feeling depressed. My body is getting weaker everyday and I just get so frustrated that I can’t do anything about it.

Last night was really tough for me. I just kept crying and crying. The diuretics they give me, make me pee every hour. My mom helps every time because I’m a fall risk patient. So we both get up every hour. We both get sleep deprived and irritated easily. I’m also bloated in my tummy, and my breathing treatments are every 4 hours. 

Anyways, I tried to 💩 and my stomach started cramping REAL BAD, and I couldn’t stop my coughing fit, that I started dry heaving. So my nurse gave me morphine, zofran and a…suppository (goodbye dignity). 15 minutes later I was able to poop a good amount out. Mom and I were able to get some rest after that for a few hours.

Today,  was a better day. However, Mike told me Neeks has strep throat. We FaceTimed, and he cried bc he couldn’t come see me anymore. Which means, I probably won’t see him on my birthday. 

My case manager notified us that we’ve been here for more than 95 days. This is the longest mile I’ve ever walked.

Day 124: FBQ

Hello world. Every since  I met my good friend Emily we had tradition of calling each other FBQ and SFG on our birthdays. Her birthday was 4 days before mine. So happy birthday FBQ 🎂!

On my end of the spectrum, I haven’t been too bubbly. I still can’t shake this cough. And it happens when I’m about to answer someone (how convenient). I’ve even had another Thorencentisis but I’m not feeling any realief. Cough syrups with narcotics barely help…maybe my body is getting used to them, who knows.

My tummy and legs were super bloated. So dr Simpson ordered more Diurel. It’s the worse, I pee every hour on the hour. I have to wake up Mike/or my Mom and have them walk me from my bed to the toilet. No one is happy at the moment. Then they have to help my weakened body get on the bed and get in my perfect position. This takes about 10-15minutes so you really have 45 minutes left before I have to pee again! It’s always a rough night when Diurel is involved. I was getting so anxious and frustrated i cried. I told Mike it was getting too hard for me. It was my own personal Hell. Mike just let me cry and rubbed my back.

When I woke up, I heard Nicos voice and I felt a million times better. My legs aren’t swollen today!

Here’s what my feet looked like before :

Gross I know!

But today was alright. Just sat with my legs elevated. I did have a spontaneous hand cramp today. We were freaking out. We were trying to massage it out with bengay but nothing was helping so the nurse gave morphine and it worked for 5 seconds and then she came back with hot blanket and wrapped it around and that seemed to do the trick. Nurse checked my potassium and it was 2.6! Normal is around 4.5…

Well I’m going to attempt to sleep now. I hope my blog entry will suffice. Remember, I’m on morphine…

Day 115: I’m Okay

My bro let me know that some of you have been asking about me. I didn’t realize it’s been so long since my last blog. I apologize. 

Last week, Dr Simpson ordered 2 doses of Diurel to get rid of the extra water weight, which means my mom was up every hour for 24 hours helping me get out of bed to pee (God bless her). The next day they left us alone to recover and we just slept all day.

Even after that day I wasn’t feeling like myself. I just couldn’t get out get out of this funk. To be honest, I maybe a little depressed. All this waiting is driving me crazy. There’s a volunteer group of transplant patients called Life Support and they all talk about their transplant experience. They say the hardest part is waiting. Which is true. All I can do is stare at Nico’s school pic each morning and wonder if today is the day.

I heard through the group the grapevine there are several fundraisers happening on our behalf. My family and I very much appreciate all the hard work you have accomplished in doing so.

Also, I really appreciate the requests to come visit me at the hospital. Please don’t take it personal, I’m just not up for it…plus parking can be a pain and nurses are strict about being contagious if you visit the floor (coughing/sneezing…). We’re not even allowed to have flowers in our room. 

I’m still trying to get over this fluid overload that my cough is still here. I can’t speak full sentences without going into a coughing fit. I take respiratory treatments and cough meds, but I don’t really see a difference. My fluid intake has been restricted to 1500ml, so I even have a separate cup for ice chips in case I reach my limit for the day. 

My dad visits or drops off homemade food EVERYDAY, so I’m not restricted to hospital food. The days that he actually comes up to my room, we have to time our visits so he doesn’t have to pay more that $5 for parking. He super dad and I love him😊.

This morning we were told my WBC is increasing so they’re going going to change my PA cath AGAIN. He’s also putting me on a new med, Primacor to see if that can hold me off on the dreaded balloon pump where I will be restricted to the bed and not allowed to get up, not even to pee or poo. Basically, my heart is getting worse and this might be my last resolve until my new heart comes. Also he ordered Diurel and another Paracentesis to be completed since all the water weight is still there, so I have a busy day today. I’m praying that when I wake up from the PA cath, he doesn’t tell me he went ahead and put in balloon pump. 🙏

I’ll try and keep the updates more frequent as the days go by, but I doubt I’ll be updating daily. If anything, my mom will post on fb if something serious has happened. She’s becoming an honorary nurse. She knows all the routines, how to read my monitor, how to silence my IV machine, most of the vocabulary, nurse schedule exchange, etc…😅
I need a new heart/liver ASAP so I don’t have to go through all this. So please, any prayers or good juju you send my way would be greatly appreciated. 

I would love to spend a couple more years on this earth watching my Nico grow up with Mike by my side. 

Day 106:Hallelujah! 

Woke up this morning with a special feeling in me bum, but I wanted to make sure, so I waited until after breakfast. 

While administering my meds, my morning nurse asked if I wanted Miralax since last night was kinda a FAIL. I gave her a face like “not really” so she suggested I just sip on it periodically. I agreed, even though I knew I was about to go in a few minutes.

After I finished breakfast and told mom I was ready but there was a cot dang IT guy still tinkering with the nurse’s computer. When he finally left, I scurried over to the loo and boy, it was such a sweet and smelly relief! 🙊😜 I am still bloated, but at least I was able to get a good amount outta me.

I’d say today was a good day! I was even able to squeeze in a 2 round walk around the nurses station. The boys are spending the night and Mike is about to wash my hair..everything is coming up Ocampo! Now about tonight’s Power Ball…

[sorry if today’s blog title was a little deceiving 🙄]

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