Wow, I definitely dropped the ball. I haven't updated in so long. Thank you all for all the nice posts on my guest book that I am just now seeing.
A few updates about me:
I got off Coumadin at the end of July. I was working really hard to build up my endurance by walking around my very hilly neighborhood in LA. I got to the point where I was walking about 4 miles up and down hills every other day and then I knew I was ready to go back to work. I returned to work full time in August after 8 weeks. The first week back was a bit tiring but after that I got right back in the groove. I previously expressed concern about my scar and well, unfortunately it does not look great. It is a bit hypertrophic. Actually the top half is (the part that is visible) and the lower half looks great of course. Oh well. I've been trying silicone scar sheets but I don't feel like they're helping much. Overall, I've been feeling great since I got back to work I have just been working on fitness. I did a stress echo at the end of September and it went well and I was cleared to do some light jogging. She did find a minor heart block arrhythmia, but it is a benign type thank goodness. I just had my 6 month check up with my cardio and she says I'm doing very well. I'm still on metoprolol 25mg per day. My HR just doesn't want to normalize, but still feeling good.
I'm headed to Colorado for Christmas to do some skiing. My cardio actually advised against it because she says she is still worried about my sternum healing. It's been 6 months! How long does it take??? I will be skiing anyway against her advice. I guess that's my "I'm young and invincible attitude" kicking in. But hey, I gotta live my life.
Anyway, overall I feel about as good as I did before surgery which is pretty good considering I didn't feel like I had any symptoms at all before. So hopefully it will just get better from here.
I'm feeling very good. The last couple weeks have been uneventful, in a good way. My neck, back and shoulder pain have disappeared and now the only pain I am having is twinges of sternal pain every now and then. I have been cleared to drive by the surgeon, which is very nice now that I'm not stuck having to be chauffeured around by my mother.
I can walk 2.5 miles over one hour with a 1% incline on the treadmill at the gym. I'd like to start working on my speed.
My resting heart rate is still in the 90's-100's on metoprolol, and was told by my cardiologist it could take 6 months to settle down, which is a little annoying because the metoprolol brings my BP down a little low and I do get slightly lightheaded when I stand up from sitting.
Otherwise things are going very well and I expect to get back to work in another 4 weeks as planned.
I wanted to post earlier today, but I had a very busy day! I was not feeling good yesterday. I had a lot of fatigue and neck and shoulder pain, so I was really not up for doing much other than being a lazy bum on the couch.
Today, however, I went to the mall and walked around for about two hours. I may not have been continuously walking, but I definitely needed to put in a great deal of effort to keep up. I had to remind my mom multiple times to slow down as I could walk as fast as her. This is not usually the case because I do have a full 3 inches of height over her and she has a bad foot! Overall, it felt very good to get out of my apartment for some window shopping.
Afterwards, I was pretty hungry so we drove to a place near my apartment for some sushi. Yum! It definitely boosted my mood. After I got home, I definitely needed to rest a bit on the couch. And then when my room mate got home from work, I went out again with her for some froyo, a ritual that we have when we need to have some girl time. She keeps telling me how good I look after only two weeks post op. I definitely feel like I'm right on track with recovery and that is a good feeling. We will see how I feel tomorrow! I will also try to post a couple photos of my scar. It looks ten times better now, than it did two weeks ago in the ICU. I am amazed that it is not as "ugly" as I had thought it was going to be.
On a side note, thank you to everyone who has been sending me words of encouragement. It means more to me than you all could know. It has been fantastic to have this resource available and I do hope that my experiences are truly helping others with your pre op anxiety. It definitely helped me to read about everyone else's experiences as well.
I finally got to go home on Friday June 28, after 9.5 days in the hospital. I was so excited I think I may have overexerted my self when I got there by tidying up my apartment and taking a shower. Oh that felt so amazing though!!! I definitely needed some pain meds before bed. I didn't sleep very well the first night mostly due to pain because I needed to try a couple different sleeping positions until I found the most comfortable one.
This weekend though has been pretty good once I found the sleeping position that works best for me. My pain is minimal and I am now just taking one tylenol + codeine before bed. I can walk continuously for 15 min twice a day at this time, but due to the Los Angeles heat and the VERY hilly neighborhood that I live in (Silverlake), I have resorted to just pacing my upstairs hallway back and forth, which works for the time being. Once I get up to a higher capacity, my mom and I will probably be driving to flat areas around LA to walk every day.
I have an appt tomorrow at the Coumadin clinic at USC Hospital and my next follow up with my surgeon is on July 8th. Overall, things seem to be going really well for me now that I am home.
I'm still in the hospital exactly one week after my surgery. I felt good enough to go home two days ago, but it seems that my blood work has other opinions.
As soon as my last chest tube came out on Monday, I was placed on an IV heparin infusion until the coumadin I've been instructed to take 6 weeks following surgery can get my INR up to a therapeutic level. I thought I was gonna get to go home yesterday, but my INR has still not budged. Same thing today. I thought I was gonna get to go home, but after an increase in my coumadin, my INR has still not budged. Something about me being a young, healthy female is keeping me from responding to the medication. Although that is nice to hear, I am still really frustrated I am not at home yet. I have very little sternal pain now, just back, neck and shoulder pain and I'm no longer taking any pain meds. Not even Tylenol.
I guess I also had a slight fever today too, but I didn't not feel any different. They did a urine analysis and blood cultures to see if I had an infection, but at this time it does not appear that I do. They did give me tylenol for the fever and did some cooling measures, and that brought my fever down.
I now have to go 24 hours without a fever and my INR needs to trend up before they will let me go.
I feel good enough to do several flights of stairs and walk the halls often. Overall I should be thankful, but I am frustrated that its been a week and I'm not yet at home in my own bed. Ugh. Patience is a virtue I guess.
I was in a lot of pain the day after surgery, much more than I expected. I guess because I am younger I have more muscle in my abdomen and chest, so this made it much more painful than people who are older. The pain meds worked and I was not nauseous from them, but I was trying to take as little as possible because I did not want the side effects and they also made me soooo sleepy. My advice is just take them! They give you medications to deal with the side effects like constipation.
I was transferred out of the ICU in the afternoon of June 21st after it was determined that I my hemoglobin and hematocrit had responded to the one unit of blood that I received. Pain was a constant issue with the 3 chest tubes that I had and even once I was in a regular room, I was still having a lot of issues with anemia. I received IV iron a couple times and now I am taking oral iron.
One big thing that also surprised me was how bad my appetite was. I work as a dietitian and I'm always telling my patients how important it is to eat when they are sick, and I could barely eat even 20% of my meals. I had difficulty swallowing pills and pieces of food kept getting caught in my throat. This might have been a combination of having had a breathing tube, pressure from the chest tubes and that the pain meds slow down the digestive system.
It is day 6 now. I got one chest tube out each day starting on day 4, and now I have none. It feels sooooo much better!!! My pain is now only controlled with Norco. I walked the halls a few times today and did two flights of stairs back to back and I felt good. I feel ready to go home, but they are still working on getting my INR where it needs to be for the short time that I will be on coumadin and home with the new porcine valve. Hopefully I can go home tomorrow.
This was definitely a hellish experience, one that I will not want to go through again very soon, so I'm just hoping my valves last as long as possible.
I'm finally feeling well enough and focused enough to write an update. I had surgery on June 19 for a Ross procedure and mitral valve repair or replacement. Everything went very smoothly. I received the Ross procedure, but my mitral valve was not repairable unfortunately and Starnes told me tried to repair it 3-4 times before having to replace. Dr. Starnes told me that it actually looked like more of a congenital defect and called it a congenital hammock or parachute valve. I have no idea what those are but I now have a porcine valve where my mitral valve was.
Day of Surgery:
I arrived at 5:30am but did not get into the OR until 10:30. I did not arrive to the ICU until around 6pm. I only had the breathing tube in for another hour and a half after arriving to the ICU. I was glad to get it out because it was extremely uncomfortable and I was gagging on the tube. It did not hurt coming out though. Just caused me to gag a lot and cough. I was very out of it the whole time on morphine that first few hours after, but once I got the tube out I just remember being so thirsty. The nurse gave me ice chips and water, which I sucked down and then promptly vomited back up. Turns out that morphine and I do not agree. I was switched to Dilaudid, and Toradol and felt much better. I was just kept comfy that first night. The night nurse said that I was doing so well that as long as I could get up into the chair in the morning that I would probably be transferred out that day.
I did get up in the chair the next morning, but I was EXTREMELY dizzy and nauseous. Turns out I lost too much blood and did not receive any blood products during surgery, so I needed some in order to feel better. They gave me one unit and I could immediately tell the difference. They allowed me to eat some real food at dinner that evening and I spent one more night in the ICU.
Well, I'm one week away from surgery. My last day at work is this Friday and I've been very busy training the person who will be covering for me on my leave of absence. My last day is Friday. I have a pre-op appointment on Tuesday.
I've been getting everything squared away. I picked up some mederma, extra strength tylenol and wireless bra (Ladies, I've heard that the last one helps?). I've also contacted a medical supply company to see if I can rent a recliner as I do not have one currently in my apartment. Does anyone else have any advice for things I should be considering for post-op?
My parents will be coming in to town Friday night and we will be relaxing down in Newport beach until my pre-op appt on Tuesday.
It's weird, I'm not feeling that nervous yet and still sleeping very well. Although this will probably all change the night before. I will be glad to have some time to relax before the big day.
As I was telling people at work that I would need to take medical leave in July for my surgery, I got a lot of different questions. Who will be coming out to L.A. to take care of you? How long will you have to take off work? Where will you have your surgery done? Typical questions. As I was talking the one of the doctors I work closely with, he asked me an interesting question... Why July?
I had to think about it for a minute. The main reason I was waiting was so I could enjoy my first summer in Los Angeles as I have only just moved here about six months ago, as well as to work around my Mom's schedule because she will be taking care of me. Twelve weeks seemed like a good amount of time to prepare myself as well.
When I explained this to him, he mentioned that he would be concerned about surgery in July because that is when the new doctors start the the hospital. I'm thinking... What new doctors? Well apparently since Keck Hospital of USC is a teaching hospital, on July 1st all of the new interns, residents and fellows start their rotations for the year. Young doctors in new rotations with less experience = recipe for disaster. I guess the hospital can get kind of hectic for the first few weeks. "As a patient, I wouldn't want to be a part of that mess if I didn't have to be," he said.
Well, that changes things! So, I decided to move my surgery date up to June 19th. Suddenly, I'm four weeks closer to surgery than I was last week. My nerves are shot, but at least I know now that I will be well taken care of.
Moral of the story... for those of you going to have surgery done at a teaching hospital, avoid July!
My name is Erin, I'm 27 years old, and have been living with heart valve disease for 10 years. As a teenager I was diagnosed with aortic insufficiency and mitral regurgitation from suspected rheumatic fever. That was in 2002. In 2006, it had progressed enough that I was told I would need surgery because my left atrium was enlarged. I was 20 years old, and I was very scared. So scared, that I decided to ignore the recommendation from my pediatric cardiologist. I was young, stupid and in denial, and I decided not to transition to an adult care center. I had not seen a cardiologist since then until last month.
My younger brother passed away 6 months ago, and it prompted me to finally seek treatment. I needed to take care of myself now, not just for me, but for my parent's sake too. My echo last month showed that my left atrium and ventricle were now severely enlarged and I have mod-severe aortic regurgitation and moderate mitral regurgitation. Luckily, I am told that I did not wait too long, and that if I have surgery soon the size of my heart could return to normal.
I'm still asymptomatic, but noticed this past summer that my exercise capacity is really not where I would like it to be. I tried to run a 5K and just couldn't keep up with everyone after 3-4 months of training.
So, here I am, with my surgery scheduled for July 23, 2013. As someone who works in healthcare, it is going to be very weird for me to be on the other end of it all. I've spent some time working in a Cardiac ICU and I've even seen an open heart surgery (a CABG), so I know what I am going to be going through, and I think it's actually heightened my anxiety, which brings me here, hoping that this blog will help me decrease some of that stress as I wait until the day of my surgery.
Oh yeah, and I forgot to mention that I work at the hospital where I am going to have my surgery, which is even weirder. But, it made the selection of a surgeon very easy. My surgery will be done by Dr. Vaughn Starnes.
My first appointment with him was 2 weeks ago. I knew that he was an expert in minimally invasive surgeries, so I went in thinking that it might not be so bad... lo and behold, I was told I would not be a candidate for it because of my multiple valve disease. I was bummed. As a single, 27 year old woman, the last thing I wanted was a huge scar down the middle of my chest. BUT, Dr. Starnes also knew that I would not want to be on blood thinners for the rest of my life as well. He told me that he would attempt to repair both my aortic and mitral valve. WHAT?! I thought aortic valves couldn't be repaired! He said that he would try and that if he couldn't then he could perform a Ross procedure. And he was confident he can repair my mitral valve. He said this could give me a possibility of 20 years of no reoperation.
Holy moly, that's a lot to think about. The brings up the question of including the pulmonary valve, so I will have 3 valves operated on instead of two. That is a scary thought. But, Dr. Starnes is a legend, and I just need to be confident that because of that, the outcome will be good. The only other options are tissue valves, and who would really want to do that at my age?