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.
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.
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.
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.
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.
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!
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.
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.
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.