Fund a Heart for Tommy

Update posted by MelissaJArias On Apr 24, 2013

Well, it has been a few months since my last update to this website. I primarily use my Facebook to keep everyone updated of day to day activities. Recovery definitely started out slow for me, and took about 2 months for me to finally start feeling better. My doctors and everyone at Columbia kept saying, "I can't wait until you come in feeling like a million bucks." It was very defeating for a long time, because they kept telling me I was going to feel good, and I wasn't. Then, in early march, it happened. It was like a switch went off, and I felt amazing. I was able to play with rocks, work on the bathroom, I was unstoppable. Then, the next day, it felt like I have broken a rib on my right side. I was in so much pain, I figured I pulled a muscle from playing too much with rocks, but it's so hard to be down and out for so long and then feel good, and not push too hard. Then, a day or two later, I noticed I was getting a rash where the pain was. Turns out, I had gotten shingles from being worn down and stressed. :( I like to joke that soon it will be swarming locusts, I just can't seem to catch a break! But, I'm happy to announce that after those two horrible weeks with the shingles over, I feel great again! I've been spending my days working very hard on renovating the bathroom, and I'm just about done. Just need to tile new floors, and swap out the toilet and sinks. Then a couple of finishing touches here and there, and it will be completed. I'm also very happy to say that on April 20, 2013, my niece/goddaughter was born! I am excited to see her in person this coming Saturday in Las Vegas. I got permission from my doctors to go out there, it will be difficult, but well worth it. Not much else to report, just keeping busy with the bathroom, rocks, and "volunteering" at PAL. Dad is finally starting to crack, and allowing me to get a bronco soon :) Xoxoxo Tommy

Update posted by MelissaJArias On Jan 18, 2013

1/11/13-

At 7AM, mom and OK Lori left to go home. I was incubated and out cold. Around 2PM, I had Chris from the nurses’ station call mom to see if she was still in the hospital or at home. Mom said she was home and would be back to the hospital around 630PM. I can’t believe how much my chest hurts!

1/12/13-

Called mom at midnight because I wanted her to print the picture Dr. Takayama emailed me of the piece of catheter that was taken out of my heart. It was over 2” long. I still have a lot of pain in my chest. The Ketamine is causing some really scary hallucinations. Mom arrived at 2PM. I wasn’t sure if she was real or a mirage. They took out the arterial line from my groin. Not such a good day,
because they also pulled a chest tube.

1/13/13-

Melissa, John, and dad came to see me early in the morning. Melissa and John asked me to be
Magilla’s godfather. I was so honored. I received 2 units of blood, then sat in the chair for a couple of hours. That took a lot out of me. It’s amazing how little things take so much out of me when I was doing flights of stairs three days ago.

Melissa was having her gender reveal party for Magilla. We had a Skype session so that I could ‘attend’ the party. When the cut the cake, it was pink, so Magilla is going to be a girl! I was relaxing when Melissa, John, and mom came and brought me a ‘reveal cupcake’ with a fondant Magilla on it. They only stayed about 2 and a half hour, and when they left, I fell right asleep.

1/14/13-

I slept pretty good during the night. It made me feel much better. Dan and Aunt Loretta came during the day. The day started out rough because I was pretty tired from the day before. Marisa from PT came and I was able to walk. I walked around the halls, and it felt so great to stand up and walk around. I got a little tired and sleepy again. I took a nap until mom and Melissa showed up at 4PM.
They got me some pizza for dinner. Mmmmmm.

Update posted by MelissaJArias On Jan 17, 2013

1/10/13- Discharge Day!

Dr. Jorde came in this morning and seemed to have given me credit for fixing the swelling in my legs, since I was the one telling him for days to diurese me. Whatever, the swelling is gone and I am going home soon, so I am happy. Marisa came, and I went up and down two flights of stairs. It was slow and steady, but better than yesterday. Finelle came with all my discharge paperwork; I signed it, and got all my prescriptions and instructions from her. She told us that a pharmacy across the street from the hospital would have the pain meds in stock that I needed, since the hospitals on Long Island typically do not carry it in stock. When mom finally arrived, she went to fill the prescription, and I went for a walk to the cafeteria by myself! I wasn’t as overwhelmed as I thought I would be. As usual, I let my thoughts get the best of me. I treated myself to a Snapple for working so hard and accomplishing so much.

At approximately 2PM, a tech came in to do an echocardiogram, but I told her that I had already been discharged. She said that it was just ordered, and she was unsure of why. I figured, ‘why not. Just do it and get me out of here!’ About an hour later, Dr. Jorde and Dr. Naka came in my room to see me. Dr. Jorde said that he had finally looked at my CAT Scan results from the day before, and they see what appears to be a foreign object in or around my heart. If the object, which appears to be a catheter, is outside of the heart, they would leave it there. So… you forget to remove something from my body, and you are just going to leave it?!? Then they said that if it is inside the heart, they would have to open me back up to remove it. They would have to do a special test, where they place an echocardiogram camera down my throat to get a closer look at the object and its relationship to the heart. It was determined that my chest had to be cut open again! So… at 1130PM, I entered the 4^th floor operating room for the test and my second open heart surgery. After the test, around 130AM, Dr. Takayama went to talk to my family. He explained that somehow the tip of a catheter had been cut off during the first surgery. At around 430AM, Dr. Takayama went into the waiting room to talk to my family again. He explained more about what he found, and told them that before they closed my chest, he had to make sure the bleeding stopped (caused by the Coumadin medication I am on). When it was done, Dad left for work, and Mom and OK Lori came up to see me before they left for home.

http://i796.photobucket.com/albums/yy245/Stemmle/catheter_zpsa061de32.jpg

^The catheter they left inside my heart^

Update posted by MelissaJArias On Jan 16, 2013

1/1/13-New Years Day

After some Adderall and Ativan, I got in about two and a half hours of sleep, which I was satisfied with. I have been trying to do as much as I can on my own. As of noon I had performed my respiratory and physical therapy exercises by myself. My limbs were slow and resistant, but cooperating. My breathing difficulties have varied day to day. The catheter in my neck was causing a lot of pain, which prevented deep breaths for therapy. I spoke with the doctors about trying to be home by January 12th. I rarely used my pain button this morning, so they may try to wean me off some of my medical drips that prevented pain and anxiety to help achieve the goal of the 12th. They pulled a chest tube today, which was more disgusting than painful. There are only two chest tubes left! I sat in the chair for two hours before it became too painful, so I stood up and took baby steps in place for 5-10 minutes. I went back to the chair for another hour. I attempted to chug a horrible tasting laxative drink, which I finished. I fell asleep for thirty minutes, woke up sweaty and not feeling well. I threw up the laxative and all my dinner. The rest of the night was spent lying in bed with on and off sleep. Now seems to be when my strength will be tested most.

1/2/13-

Took out the Swan catheter at 6 p.m. Thought they would take out the last 2 chest tubes, but not today.We have movement! Thank you Miralax Dr. Takayama told my mom that I was doing really well, considering how sick I was when I was admitted. He thinks that I can go to step down tomorrow. I was down to 5 IVs from 12. It's 9 p.m. and I am TOTALLY COMFORTABLE - lying on my side, pillows behind my back, towel under my shoulder. Had another BM and I am continuing the feel better. I also got a good/strong sleep throughout the night.

1/3/13-

I woke up feeling great! Multiple doctors have said that I should be getting out all tubes and lines, which will allow me to move upstairs to step down. Feeling great! Let's keep it up! Word on the street is that they have a bed for me in step down. I had 2 IVs put in; also, final 2 chest tubes came out. Because of the coumadin, there was so much blood. I didn't look but could feel the warm liquid everywhere. It took a while before they could seal me up. Jon removed remaining lines and promptly moved me to step down. Step down involved meeting a lot of LVAD people. I was constantly reminding them of my 1/12/13 goal. I went over the basic power operation of the LVAD with physical therapy. We then walked the halls; which, given the long I had, was tiresome. Mom and Dad came in late to visit and brought me some good food. Very exhausting day! 10 p.m. - time for bed.

1/4/13-

No sleep...No rest...No relief! Up all night in pain, could not get relief with pain medications. Finally got out of bed at 6 a.m. and went and sat in the lounge for a hour. It took some time, but they finally switched my pain meds to Dilauded, a strong medication. I had a chest x-ray done to make sure the pump was in the correct location, which it was. Today I met with Scott, the LVAD instructor. We went over many basic components and functions of the device. I did not find any of it difficult. Pain meds finally began to take away the pain, but the tradeoff was horrible, uncontrolled sweating. As it turned out, I didn't really eat, causing the reaction. Went for a long walk with the physical therapist, Marisa. It feels so great to be able to walk again. I was so tired that I could barely keep my eyes open while Mom and Dad were here.

1/5/13-

I am convinced that they don't want me to sleep here! Shortly after falling asleep, they came to draw blood. After a while I fell asleep again and the nurse woke me with meds to take. No more interrruptions until 5:30 a.m., so I got some decent sleep. A nurse's aide came this morning to check my weight with a big giant scale. The scowl on her face still haunts me! Even though on my door I am listed as a "fall risk", she offered zero assistance in getting up. Then, while trying to get back into bed, she pushed by me, ran over my foot with the scale, and told me to "watch my foot." I got pretty upset with the whole situation, and lodged a complaint with the Charge Nurse. Nena, the day nurse, was no better at her job. Had it not been for volunteers walking around, I don't think I would have gotten any of my basic essentials. They let me disconnect from all my monitors at noon to use the restroom. I made it until 7 p.m. before my nurse came (and that was because I called her)to get back on the monitors. It's reassuring that I could have been dead on the floor for 7 hours before someone would have noticed. My night nurse, Laura, was the only thing helping me hold it together. At 9 p.m. I finally lost it and began crying. A day full of disappointment in regards to my caregivers. They brought in a roommate, with some sort of spinal injury, so he couldn't move. I felt for the guy, but he was constantly, constantly talking or complaining. I am so close to going home, I kept telling myself. Hold it together; stay strong!

The night went just like the day; as soon as I could fall asleep, I was woken up. I am even writing this at 3 :30 a.m., because roomie had to have the hospital's latest doctor come to the room. Why, I don't know, because he is so amazing at self-diagnosis. One thing I forgot - the nurse supervisor came in to see me (another reason I was awoken). She really seemed caring. I put in complaints about the scale lady and Nena. I hate to do that, but I refuse to be walked on when it comes to my care. On the bright side, I felt pretty good, and got in a good walk.

1/6/13-

After a full night of no sleep, I finally dozed off with earplugs in for about an hour. Danny was in the room when I woke up and totally understood why the plugs were in. We spent the day hanging out in the lounge. When he left they finally moved me to a new room. My legs got so swollen, more than ever before. That night, they put me on 40 mg of Lasiks, so I was able to get some of the fluid off. I met my new roommate, Steve, a young guy like me, but with a family history of heart disease. He was very nice and familiar with everyone in the hospital. He had a small bag that he used for his controller and batteries, instead of the holster and fanny pack. It was made by a woman who also had an LVAD. I might look into getting something similar. Finally had a BM, so now the nurses can get off my back about it!

1/7/13-

I didn't get to sleep that early because Steve's snoring was louder than a bowling alley. When I finally fell asleep, I got a good long, strong amount. Steve's LVAD controller was getting the red heart alarm this morning. He said it felt like his pump was slowing down, and his weak heart was trying to take over. The doctors said it may be a clot or pump failure, and he might need his LVAD replaced. Poor guy, that is scary stuff. My doctors came to see the swelling in my legs, and said that some may be caused by all my walking around. I began keeping a log of my walking so that I could track my progress. Fell asleep before Dad arrived; I guess I was tired. I asked him to buy me Caffeine free Coke; instead he bought me Coke Zero. Spaz! They took me off the Dilauded drip and switched me to oral tablets. The pain is so bad I could hardly get out of bed to go to the bathroom. I spent the night in pain, needing help almost all of time to move.

1/8/13-

Slept pretty well considering all of the pain I was in. It hurt so bad where the pump is. My IV site is also bothering me. It flushes fine, just hurts where the IV enters the skin. Things sound like they are trying to get me out on Thursday the 10th :). Although the pain is bad, I cannot wait to get home. Most of the swelling in my legs is gone, and the doctors are happy with that. They seemed concerned with my pain at first, but now just think it is post-surgical pain. Dr. Jorde spoke with me for a while today. He is German and thinks "Stemmle" derives from a word meaning,"to lift heavy things." The pain team decided to put me back on the IV pain meds. The patient care director, Sydete, came and spoke to me about the issues I had on Saturday. More BS apologies followed, along with a promise that something will be done about it. Donna, the woman in charge of my LVAD equipment, came and told me that my things were ordered, and should be here by tomorrow. Today was a very busy day, meeting with doctors, but it all means progress. I met a man named Jackson today. He was an LVAD patient who was coming up on his 2 year anniversary of his transplanted heart. He comes to the hospital from time to time, to keep up the spirits of those with LVADS and transplants. He was very nice, and it is always good to meet someone with a successful story to give you hope. Around 2PM, I was placed back on IV pain meds, and was able to walk with Marisa from physical therapy for 2 long, but very slow laps around the unit. A few doctors came to perform a Ramp Study, which is when they use an Echocardiogram while changing my pump speed at intervals of 400, between 8,000 and `12,000 RPMs. It appears that 9400, where they already had me set, is the optimal cardiac output. Parentals brought me a sandwich, but it left a bad taste in my mouth. I think that 'garlic heavy' foods are not agreeing with me now :(. We did a little bit of walking. I love being able to walk again. No roommate tonight, but still had trouble staying asleep for some reason.

1/9/13-

My breakfast tray wasn't even close to accurate this morning. I was able to get them to semi-fix it. The doctors decided to give me a chest and stomach CAT Scan to make sure that my pain is just normal, post-surgical pain. The pain team looked at my PCA(IV pain meds), and saw how much I used my button, and realized how under dosed I was the other day. They are going to put me on a constant pain med every 12 hours, with OxyCodone every 4 hours as needed. I walked around and spent time in the lounge this morning. Mom came in early to do her final dressing change with Scott. She did a great job. I took a long afternoon nap. Marisa with PT, had me do about 15 stairs. It was hard, but ok. Then we met with Donna and went over all my new equipment that came in. Shortly after, they finally came to get me for my CAT Scan. It took more time waiting for the transports, than getting the CAT Scans. When I got back, I went with mom down to the cafeteria to see what it is like outside of my floor and comfort zone. People never cease to amaze me. With my gown and visible electrical components, people still got in my way and were rude. I am worried about what will happen in the real world, with street clothes on. I got very tired from it. Hopefully I sleep tonight.

Update posted by MelissaJArias On Jan 10, 2013

I was hoping to keep the site updated daily with journal entries. Obviously, I have had some hard and trying days, making that near impossible to do. I did however, keep a journal daily to the best of my ability to track my own progress, as well as share with all of you.

12/20/12- Transfer/Admission

Arrived at Columbia Presbyterian from Nassau University Medical Center around 11pm. Columbia accepted me as a potential heart transplant evaluation patient.

12/25/12- Christmas Day

Had an OK Christmas. I was in the Cardiac Care Unit, and mom decorated with my stocking, stickees for the windows, and a picture she thought I had painted in 5th grade. Upon further investigation, it had Mr. Ludwig's name on it. Melissa had him as a teacher, not me.....

12/26/12- MedicAid Approval

Mom went to the MedicAid office first thing in the morning, and by the time she got to me at the hospital, my case had already been assigned a number. Getting MedicAid approval in less than 24 hours is unheard of! It normally takes a minimum of 40 days. Dr. Uriel, my cardiologist, met with the LVAD committee that morning, and pushed for me to have an LVAD put in as soon as possible. They decided they would do the surgery later that day. I was freaking out. Mom was too. Because the surgery was not pre-scheduled, as an add on, things got late and they decided not to do it that night. They scheduled it for the first surgery in the morning with Dr. Takayama.

12/27/12- Surgery Day

I went up for surgery at 830am. Dr. Takayama did not speak to mom and dad until 430pm. The only "surprise" was that they saw adhesions where the heart was stuck on the pericardium. Dr. Takayama had a cardiothorasic surgeon come in to the operating room to biopsy some enlarged lymph nodes. The CT surgeon did not find any enlarged nodes, and it was decided not to poke around further. Mom and Dad were able to come in to see me around 9pm in CTICU. I was out cold.

12/28/12- Day 1 Post Op

Throughout the night, I had a breathing tube in and was heavily medicated. My only form of communication was by writing on a piece of paper. Once I was coherent, it was enjoyable reading what I had written. Things from the Incredible Hulk to strippers. And somehow I managed to score my nurse Jen's phone number on there as well lol. Being that heavily medicated was strange, I was seeing some pretty horrible images, I was upset that I wasn't dreaming of unicorns and rainbows, but more monsters and death.

12/29/12-

They removed 2 tubes. The one taken out of my belly hurt so bad, it caused a lot of pain and nausea. With a lot of help, I stood up for the first time and then sat down in a chair. I sat in that chair for about 2 1/2 hours. It felt so good to sit in a chair. I was supposed to go to bed at 10pm, but I needed an arterial line changed. The first doctor took an hour and a half and still could not find good access to the arterial line. MAJOR pain. The second doctor got the line put in in about 20 minutes. Finally got to sleep around 1am.

12/30/12-

Actually ate some significant amount of food for the first time since pre-surgery. I began the day only needed to use my pain medication button every 15 minutes. I took several small steps to get to the chair today, then sat there for a few hours again. As the day went on, I started feeling weaker and defeated. I didn't feel as though I was constantly getting better, but it wasn't that I wasn't getting better, it was that I was doing more with my days and wearing myself out more. No sleep tonight- pain, nausea, and a lot of dressing and tube changes. They were giving my 5x the dose of my pain medications to try and get me to sleep, but was unsuccessful.

12/31/12-New Years Eve Day

Ate a decent breakfast, but hardly anything for lunch. A lot of stomach bloating which was making me feel nauseous. I had a low grade fever. My skin is so sensitive to the tape. When the tape was removed, I was getting cuts from it. It was a hard day overall, but I felt better at bedtime than during the day. Got really emotional at bedtime. So many great things in 2012 to be thankful for, as well as plenty of unhappy memories that will become less focused on. 2013 is offering me a one time only fresh start(Only $19.99 + S&H). I am going to do as good a job with my second chance at life as I can. Spend time with my family, Rocks, better long distance communication, trusting my wonderful support system, and allowing them full access into my life. I think it will take a long time to adjust to my new lifestyle, but I am prepared to handle whatever else comes my way. Hit me with your best shot 2013!

Update posted by MelissaJArias On Dec 25, 2012

So I have arrived at Columbia University, I’m finally where I need to be to get proper treatments. I am currently in advanced heart failure, with a life expectancy of less than a year if nothing is done to correct it. Being blood type O+, and being ginormous, are basically the 2 worst things you can have when needing a heart transplant. They expect I would be waiting on the transplant list for 2+ years. I am currently on 2 strong heart medications via an IV drip through my neck with tubes directly into my heart to deliver the medicine. This treatment has made me feel sooooo much better since being on it, I almost feel like my old self again. I can finally walk without being out of breath, I have my appetite back, and I can spend a full day without being nauseous. These medications, however, are only a temporary solution, as they may work for anywhere from a week to 2 years, they really don’t know.

So the doctors’ new plan is to put in a left ventricular assist device (LVAD). An LVAD is basically a pump placed in my stomach, with tubes that are directed to the heart to take over the pumping action of the left ventricle of the heart. The left ventricle is the part of the heart responsible for pumping blood to the body; this device will relieve my heart of that stress and completely take over for it. The pump needs constant power to operate, so a wire is fed through my stomach, where it exits the skin (think the plugs in the skin in the Matrix). I will need to wear a small monitor with battery packs all the time to supply power to this pump. The LVAD implantation is a 4+ hour open heart surgery, with a multiple week in-patient post op recovery time in the hospital. The LVAD should provide me with a better quality of life until a potential donor heart becomes available.

Although I am very scared to undergo such a major surgery, I am thankful that I currently feel better, and am building my strength prior to reduce any risk. I am ready and prepared to do whatever is necessary to get me feeling better, because that is all I want. Things are never this simple when it comes to me though…. Again, insurance is refusing to pay for the LVAD, delaying the surgery. We are working with the hospital to try and get them to cover it, we have also begun the MedicAid application, which will ultimately cover all my needs. Right now, all we can do is sit
and wait for the insurance company and hope I can get the LVAD put in soon.

Today is Christmas, and all I ask for this year is a second chance. I would like to give a big thank you to everyone who has visited this site and shared it with others. I am so lucky to have such amazing people in my life, and I feel so great knowing I have your support. Just feeling the compassion from everyone gives me the strength to overcome any obstacle. I am positive that 2013 will be a great year filled with health and happiness.

Merry Christmas!

XOXO

Tommy