Nikki's Journal

Hi Everyone! I don't get on here very often, I don't know why? Y'all seem to be the only ones that know what I'm really going through, or at least have a better idea. Which is why I'm on here now .... I need your help, in the form of feedback, ideas, etc. At the end of November, I went back into the hospital to have a hole in my heart repaired. I had to go in two days before the procedure, they had to wien me of the Coumadin and do a Heparin bridge, and they said I would be there a couple days after just until my INR was back were it should be. But what was supposed to be a 5 day stay turned out to be 14 days!! The procedure was done like an angiogram and they went in through my leg. It was all supposed to be "routine". When I woke up, my chest was so sore and I couldn't understand why. Then the Doctor came and talked to me and told me it was from the chest compressions that he had to do because I CODED TWICE!!! Thank God, they were able to fix the hole. The next day, my chest was bruised and I could barely move. Mind you, I'm not fully recovered from the three open heart surgeries from earlier in the year. And I felt like I had been hit by a bus. But the newest echo shows my heart finally working well. YAY!! But here's the problem. I'm struggling, personally, emotionally. I don't know exactly how to explain it but I don't feel like myself. My tastes have changed, my mood and way of thinking has changed. I can't seem to get enough sleep, I practically slept the whole time I was in the hospital during the day because the night shift wouldn't leave me alone. After I came home, I dealt with insomnia at night and slept during the day but that's kinda passed. My Doctor prescribed me a pill to keep me up during the day and give me energy but even that doesn't work half the time. I miss the me that I used to be. I feel like 2018 aged me 10 years. I was expecting to feel so much better after my heart was fixed so I could get back to living my life. But I'm having a really hard time stepping back into it.

It's been a while since I've been on here. I wanted to wait until I had something good to report. Sorry to say, this isn't the case. Well, I take that back, my INR is finally stable.... Yay Me!! But since I was on here last, I've had pneumonia twice, and now I have pleurisy. My last echo, in September, showed another leak but because of the weird placement of my Mytral Valve and all the metal, everything doesn't show up like it should. So a couple weeks ago I had to have a TEE which showed a hole in the RCA just above my Aortic Valve, or as they called it, a VSD. So tomorrow I have to go have a CT scan so they can see exactly where it is. Then I will be scheduled to go Back in the hospital to have it fixed. I haven't even fully recovered from my last surgeries and I have to go back in for another one. However, this one will not be an open heart procedure. From my understanding, it's more like an angiogram but I will still be knocked out. So if I could ask you all to keep me in your prayers, I would greatly appreciate it. I just keep telling myself, one of these days, I will be past all of this and back to living my life. I can't wait because I've lost almost a whole year of it.

Well, I haven't posted in a while, I started feeling like I was always complaining. Metaphorically speaking, I feel like I've been at an amusement park. I've either been on a roller coaster, going up and down (INR) or I've been on a merry-go-round, (vertigo). I'm on the phone with my Doctor every day regarding my INR. Well, after increasing my Warfarin from 9 to 14, my INR finally started rising, slowly. I am happy to report that FINALLY, my INR is at 2.8 with me taking 12mg of Warfarin. It's still fluctuating but not drastically. Now, if only I could get all this other crap figured out.... Like, when I get up walking around, my feet swell up but my left one swells much larger than the right🤔 And when I take a deep breath, my whole chest pops and hurts. I'm still waking up every morning with a headache. I got the nausea under control because I found that putting an ice pack on the back of my neck, in the morning, makes it go away. So, this time it wasn't all bad. But it's definitely one step forward, two steps back. But I do have an appointment tomorrow with my Cardiologist so just maybe, he can get a few of these other things figured out. My husband is going to take of work to take me so I might even get to go out to lunch, if the appt doesn't take too long. My Doctor is 90 miles away and counting traffic that could mean a 2 1/2 hour drive. Yuk!

It's 1:00 in the morning. I'm now experiencing insomnia because I'm afraid to go to sleep. Lately, when I go to sleep, I wake up to my Lovenox injection sites bleeding. I'm worried about this whole INR issue. I just don't understand it. I was on Warfarin prior to this OHS, due to my OHS in 2014, and did just fine, never had these types of problems. Now, yesterday, one of the team Doctors, my main Doctor is out of town, uped my Warfarin to 14 mg!! Just trying to get my INR to come up. I'm don't want to eat anything, I'm afraid it's going to go down even more. I have to stay on the Lovenox, even with the bleeding, until I'm at least at 2.0. I'm just miserable.

Well, I woke up at 4:30 this morning, again, with blood stained clothes from my Lovenox injection site bleeding out. Good thing Clorox 2 gets blood out of clothes or my clothes would be ruined. I understand the whole concept of why I need to be on the Lovenox but man, these side effects are wild!! Like being on the Amiodarone, thank God I'm not on that anymore, those side effects were a nightmare. At least the majority of those are gone. Thankfully, even the nausea is letting up a little, my "morning sickness" isn't lasting all morning. But this bleeding issue is one that I don't think I can handle for very much longer. I'm already anemic so it can't be good.

Here it is 3:00 in the morning and I'm awakened by the feeling of dampness on my stomach. I turn on the light and find that my shirt has a big patch of fresh blood where I did my Lovanox shot last night. It had a band-aid and cotton ball on it but it blead through it. As of yesterday, my INR was 1.8. Monday, I was at 1.9 and the Doctor had me take 11mg of Warfarin Monday night. I wake up Tuesday and it has dropped to 1.8. I just don't know what I'm doing wrong. I don't eat anything green. I look up all questionable foods, herbs, vitamins, etc. I just don't get it. But this is definitely not how I like to be woken up! 😭

I have a Physical Therapist that comes to my house twice a week to do cardiac training, help exercise/strengthen my legs, and check the wounds left by the retention sutures. Well, today she tells me that 2 of the wounds are infected! Not sure how, but they are. So now I'm back to the Betadine wash and bandaging twice a day. Also, my INR has been at 1.9 for the past 5 days. I have the Alere self check home kit so I'm checking it everyday. I'm now taking 10mg a night of Warfarin plus I have to do the Lovanox shot in my stomach. My stomach is all bruised and I'm so miserable, I just want to cry 😭 😭😭

While I was in the Hospital the second time, after surgery, my heart rate kept bouncing from a-fib to a-flutter. It got so bad that when they got me up to walk, I would get short of breath and almost pass out after just a few minutes. So the Doctors decided to knock me out and do an Electrical Cardioversion to try and get my heart back to a normal rhythm. Luckily, it worked. However, in order to keep my heart in rhythm, they had to put me on a couple different medications, Metoprolol and Amiodarone. Since I have been home, I have been sick everyday with nausea, loss of appetite, and dizziness. At my last Dr. visit my Cardiologist took me off the Amiodarone, saying that was causing the bad symptoms. He did do an EKG first just to make sure my heart rate was as it should be. He also cut my Metoprolol dose in half. The problem is I'm still getting sick everyday. It's like a morning sickness ( and, no I'm not pregnant, lol ). The other symptoms have gone away but this one is the worst and it's lingering. My Dr. said the symptoms would last for a while because the medicine was so strong. He did, however, give me yet another pill for the nausea but it triggered my migraines. It seems like I take so much medicine as it is, along with shots for my Multiple Sclerosis, I always cringe when the Doctors say, "We have a pill for that!" I guess through all my ramblings, my question to all of you is.... Have any of you been on Amiodarone and did it affect you this way? If so, how did you handle it? Thank you for your help 🙂

In my own words: Edit My Story My scheduled Mitral and Aortic Valve Replacement Surgery, which was on 03/08/2018, did not go quite as planned. After the surgery, while I was still in the recovery room, I started bleeding. They took me back into surgery, and had to reopen me to try and see where I was bleeding from. From the time they first took me into surgery to the time I got to the ICU was 12 hours. I developed fluid on my lungs, which resulted in them doing a thoracentesis on the same day that I went home, 8 days after surgery. I wasn't ready. I didn't feel right about going home but they kept saying I was medically ready. So I left the hospital. I was home for 3 days before I was taken to my local hospital by paramedics because I couldn't breathe. I felt like I was being suffocated. I can remember the Paramedics coming to my house and saying "Everything appears to be normal, EKG, my stats were fine but they took me because I had recently had surgery. By the time I got to the local hospital, maybe 10 minutes away, I felt like an elephant was standing on my chest. The Doctors in the ER contacted my Dr. at Cedars and reported that I had pneumonia. My Dr. said to get me to Cedars ASAP. After that, all I know is what my husband told me, which is that they knocked me out, intubated me and air lifted me to Cedars-Sinai Medical and took me straight to ICU. My one and only helicopter ride and I missed it!! I spent 3 days in ICU in a medically induced coma, hooked up to every machine you can think of, because my lungs were filled with fluid and they didn't want to take the chance of doing surgery with me in that condition. Finally, they decided they couldn't wait any longer and they needed to go back in because my heart was failing. Somehow, in the short time of the first surgery, 15 days, a blood clot had formed on the new mechanical Mitral valve and it had stopped working. So on 03/23/2018, I went in for another open heart surgery for another Mitral Valve Replacement. ( Say goodby to Mitral Valve #2, the first one was done in 2014 ) Sooo, this time, they used a different mechanical valve. Also, it was placed in a slightly different position to make it fit better. And since I had been opened up 3 times in 2 weeks, my skin was very weak. So they had to use retention sutures on each side of the main incision, which was stapled. Let me tell you, the first time I saw those retention sutures, while the nurse was cleaning them, I almost cried! I had never seen anything like those before. And I wish I never had because those things have left problems all their own. Anyhow, after several blood transfusions and many more thoracentesis's, I was released from the hospital 16 days after surgery. I'm home now and 65 days after the last surgery, I'm still struggling with my recovery. My incision has healed nicely however, remember those retention sutures I mentioned? Well, I still have painful, gaping, wounds on my chest. Some have said that I look like I've been shot with a shot gun. I'm still not able to care for myself, I can't raise my arms. I'm still weak and walking with a walker. My family feels I should be up and back to normal by now. They are tired of having to care for me. I understand this is hard on them too but the more I move around the more it causes these wounds to bleed. I just didn't expect it to be like this. I recovered so much quicker after my very first surgery (01/2014) of course, that was just the Mitral Valve Replacement and Tricuspid Repair, and I was younger (43). But now, my family just expects me to bounce right back just like before, and I can't do it. And I'm the one that feels guilty. Sorry this was so long, but that's my story, and there was a lot to tell. Believe it or not, I still left quite a bit out. Like, after I got out of the hospital, my husband had to take me back down to Cedars every week, up until 3 weeks ago, to have a Thoracentesis done because fluid kept building up on my lungs. I'm so glad that has stopped! What a pain! But Oh Yeah, I said I was done. lol So thank you for listening to my story. And remember, for those of you who haven't had your surgery yet. Stories like mine are NOT the norm. Most go like clockwork. For example, Arnold Schwarzenegger had his surgery a week after mine, same hospital, and left before me, not to mention all the others they did and do on a daily basis. Above All, God is Good. And I thank Him and my Doctor for giving me another chance ❤️