Tag: RVR

Month Two

Yesterday marked two months with my remarkable new heart. It has been a time of trial and error; tests, tests and more test; a time for new goals and achievements. This has also been a time of a lot of ups and downs. Thankfully, mostly ups.

I was able to begin a formal outpatient rehab program! That was exciting for me, as anytime I exerted with my old heart, I would go into even more arrhythmias than normal. So being able to be monitored while exerting helps reset my mindset. It has been so very nice watching the monitor and just seeing sinus tach and not tons of multifocal pvc’s! Today at the red center here in the hotel, I was able to go 42 minutes and peddled 7.4 miles. Doesn’t sound like much, does it. But considering 2 months ago, I had a hard time walking to the mailbox without stopping several times, it’s a huge improvement. I go go outpatient rehab m-w-f and still go to inpatient on Tuesday and Thursday. It forces me to get out every day. I am now walking to and from the hospital before and after my appointments. Again, it’s not a huge distance, but it is more than I would have been able to do before. THANK YOU DONOR!

I also had my fifth and sixth biopsies. So far, all my results have been 1r. So low grade infection that will continued to be monitored, but no changes in my medication routine. I have had weekly blood work. Unfortunately, we have had to do some constant adjustments with my tacrolimus, as my levels continue to jump all over the place. I’ve been told that this is very normal as my body adjusts to my new heart and my body settles in with the new drugs. Because of the high dose of prednisone and tacrolimus, I do have the shakes. It especially rears it’s head when I use fine motor skills. Trying to drink from a glass or write anything with a pen has been challenging, to say the least. I’ve been told, it will improve as I start decreasing the prednisone. And hopefully, that will happen next month when I come in for my next biopsy. I can just see myself standing in front of a patient to draw them, and my hand shaking holding the needle!

During this past month, I also met with a few new team members. I added a sleep disorder doc and a pulmonologist to my ever growing list of specialists. I pushed for both, as I’m still having problems with my lungs and my sats dropping,especially at night and when I am under exertion. I will be doing another sleep study this coming week (so not looking forward to that!). So will see what those results will show. Did I get rid of the central sleep apnea as my heart failure doc was hoping? Luckily, the testing will be done here at the hotel I am staying at, but up one more floor. So at least I won’t have to travel far, nor figure out how to get there! Sleep continues to elude me….whether from drugs or breathing issues, I guess we’ll find out next week.

I also met with the pulmonologist last week. He ordered some breathing test to measure my lung capacity. Good news is, I’m not making things up! Bad news is, I have a paralyzed left diaphragm. It has actually caused my breathing tests to be about 40% less than they were 18 months ago when I was testing to get listed. Also, when I lay flat, my numbers are greater than 25% less than when I am sitting. Not good for either. I know for any open heart procedure, they must cut the phrenic nerve (the nerve that works the diaphragm), and this is my second open heart surgery. So I asked if this could be the issue. He said more than likely. However, I was having issues with my sats dropping starting about 6 weeks before I got my call. Since I never had the appointment with a pulmonologist before transplant, we don’t know the reason. It could have just simply been that my heart was failing faster than we thought and with my blood pressure being so low, I just wasn’t being perfused appropriately. We may never know. He did have me meet with a respiratory therapist to give me a new little toy to play with. This one is called an inspiratory muscle trainer. It is supposed to help strengthen the surrounding muscles to help with breathing. Kind of assisting the diaphragm in its job, as it hopefully begins to recover. I asked if this was a common occurrence after open heart. He says for him it is, but this is what he does, so he sees a lot of it. But, in the overall scheme of things with all the surgeries done, it’s relatively rare. Lucky me! He did say to continue with rehab, as movement will definitely help.

So, as of right now, I am scheduled to go home next weekend..lord willing and the creek don’t rise! But of course, long term weather shows that there is supposed to be a huge winter storm hitting pretty much our whole route home!

Lou has been working hard on getting the house as germ free ready as possible. He will be working with a plumber next week to get a UV water filtration system installed, as we are on well water and cannot guarantee how safe the well water is. Even taking a shower could be hazardous for me at this juncture. He converted our covered back porch into a temporary storage area, later to be our eBay room. And yesterday, we got a new washer delivered. Our old one was about 15 years old, and had some mold around the gasket. Lots of changes and lots to learn!

Thank you to donors and their families everywhere! Especially thankful for my donor and their family as they go through this year of firsts.

Discharge

“Free at last, free at last! Thank God Almighty, we are free at last!”

Famous quote by Martin Luther King, Jr. And yes, I was saying this over and over in my head. Agie had already come in to boot me out of the door. All we were waiting for were the orders and the nurse to come and discharge me. I had a couple of prescriptions, but the pharmacy had already filled them and brought them up to me. I always feel like a caged animal when I am in the hospital, so the seconds ticked by like hours waiting and waiting. Finally, the nurse came in with the discharge papers. We would be flying out Sunday (this was Friday late morning). The ombudsman office had already arranged for transport to the hotel. It was just a couple of miles up the road, so wouldn’t take too long to get there.

As is protocol, I was wheeled down to the first floor for checkout and to pick up the shuttle bus. We got downstairs, and I started feeling “off”. I didn’t say anything, I just figured it was because I was tired after the morning rush around and getting to leave. So, we got into the shuttle bus, and I began to have cold sweats. Again, I figured it was because of the hustle of the morning and just 4 days out of open heart surgery. So, again, didn’t say anything. (Yeah, don’t be like me!)

We got to the hotel room about 20 minutes later. I went to sit down, while Lou checked us in. It was an older hotel with very small elevators. We were up on the 5th floor. So, up we went. By this time, I was in horrible shape. I went to lay down on one of the beds. I asked Lou to turn on the air conditioner, as I was sweating profusely. I also hadn’t had any of my drugs since earlier that morning, so Lou offered to go find me some Tylenol. I had pretty much stripped down to my camisol and underpants. I couldn’t stand the heat. I just lay on the bed waiting for the air to finally cool the room.

Lou got back about 10 minutes later…he had to go down the block to a drugstore to get me some Tylenol. He shook out a couple and got me some water. He asked if I was doing ok. I told him what was going on, and that my heart rate was pretty high, because I couldn’t count it. He asked if he needed to call EMS. I said no at that point, I just needed to rest.

About 5 minutes later, I started screaming. Lou had no idea what was going on. I had just gotten my first ever shock from my ICD. Oh CRAP! Not only one shock, but continuously shocked. Lou was freaking out, I was screaming “Make it stop, make it stop! Oh, please just make it stop!”

Lou called 911, and sat on the bed next to me and put an arm around my shoulder, and I got shocked again. Lou was on the phone with dispatch, and she was asking too many questions. He was getting frustrated, I was getting shocked and I just screamed to her to get the paramedics here and stop me getting nailed! (I don’t think I said it that nicely, however.)

The paramedics got there finally, and hooked me up to the monitor. I could see my rhythm going across the screen. It appeared to be VTach (ventricular tachycardia). I knew my parameters for my ICD were set to deliver therapy (shock) at 200 bpm (beats per minute) and I was nearing that threshold again. I screamed at the paramedics to get a line in me and give me some lidocaine, as I was going to be shocked again. They got me on the gurney and then the fun began. Remember, old hotel, very small elevators….they had to figure out how to get me, the gurney, the equipment and the paramedics down in the elevator. Not sure how they did it, but I was finally in the ambulance.

One paramedic was trying to start an IV in my left arm, and the other was sitting on the jump seat watching the monitor and calling the Cleveland Clinic ER. I was watching the monitor, too…and could see I was nearing the threshold again. I know I shouldn’t have, but I yelled at the medic putting in the IV to hurry and if he couldn’t do it, to give it to me so I could. Then I got shocked. He yelled at me to hold still. I looked at him, and said, “I just got shocked!! How do you expect me to hold still!! Now, get it in me!” Finally, the other medic grabbed some stuff and got an IV in my right arm and off we went back to the place I had left only 45 minutes earlier.

We arrived at the ER in moments, got placed into a trauma room and in comes the whole ER team. Things began to happen quickly. Quite honestly, most of this whole time is a blur. I am pretty sure they sedated me. The next thing I can fully remember, I was being transported to a room. This time on the 6th floor. Lou filled me in on some of the stuff that happened. I had to be cardioverted 3 times before my heart finally went back into a normal sinus rhythm and stay there. Then, we had to wait for a bed to open up before they could transfer me to the floor.

I was devastated! I got up to the floor just right before shift change, so again, a lot going on in a short amount of time. I had no idea what had happened, nor why it happened…..and nobody could answer my questions. This was now about 6pm or so. Around 7pm, my night nurse came in to introduce herself. Maria was the best!

At this point, I still had no idea what happened. I kept asking, but nobody could answer. I also asked for some more Tylenol. Hello, pain, open heart surgery 4 days ago! Maria told me not only were there no orders for Tylenol in my chart, but there were no medication orders at all! WHAT?!?! So, she sent a message to the on call provider and we waited for his response. By 1030 pm, we still had heard nothing. And I still had no idea what had happened. I lost it. I bawled my eyes out. I mean, why me? What the heck did I do wrong to cause this? I was fine this morning! Maria came back in and tried to soothe me as best she could. She was getting frustrated, too. She still had not heard anything from anybody.

Finally about 11pm the EP (electrophysiolgy) fellow came in to my room. He did a quick interrogation of my device. He said, “I heard you had a little bit of a problem earlier today.” He asked me how many times I had been shocked. I told him I didn’t know, as I wasn’t too focused on counting them at the time, but I figured around 25. Lou guestimated about 10-15. The fellow looked and counted, and he said you were shocked 26 times in about 1/2 hour time frame…..and all of them were inappropriate. (meaning I was not in a “shockable” rhythm)

I finally had a name to my rhythm abnormality…..Rapid Atrial Fibrillation with Rapid Ventricular Response. This is also the rhythm I was in when this journey first began, but again, nobody told me. All I had been told is that I was in Afib.

He also told me it was nothing I had done that caused this. Sometimes it happens after surgeons go playing around with the heart. He said they were going to keep me for 4 additional days and do a loading dose of an antiarrhythmic called Sotolol. And that they were going to increase on of my medications that had just been decreased called Metroprolol (helps slow down heart rate). The fellow left and Maria came back in. I told her what transpired and asked if she had heard anything from the on call doc…..nope. But that she was still trying to get a hold of him and she was documenting everything. I also asked if there were any orders for blood work in the morning….again, nope. I was shocked. I would think at least they would want to make sure my potassium was holding steady. My labs the previous morning showed all looked good, but my labs from the ER visit showed my potassium level had dropped below normal. Plus, I was still anemic from the surgery. I was getting mad, and Maria was getting upset. But she was doing all she could do at this point.

I will continue the saga another day, but I will tell you, getting shocked was no walk in the park. It feels as if a horse is kicking you from inside your chest. Lou even felt some of the shocks when he was holding on to me. It was terrifying. And it is something I hope to never repeat again!