Misti Blu's Heart Valve Journal

Has anyone had to go back in for another surgery? If so, how did you get the strength to go at it again?

sternum wires

I can't believe how lucky I was to stumble onto this website and book. It really made me feel secure and prepared when getting this major surgery. Such a great support system! I hope everyone is recovering nicely!

Misti

Wow... You can imagine I was doing great considering I haven't posted in awhile. I started walking, which I could never do before. AND, I actually enjoy it! I apologize for not updating sooner! I hope all of you have speedy recoveries.

I am currently writing this from Florida Hospital. My sternum wires were bothering me so I went to see my Surgeon, Dr. Kevin Accola, and he asked me if I wanted the wires out and I said YES, PLEASE. So the next day, which is today, I did just that. I am slightly sore now but will go home tomorrow and will be pain free soon. For those of you that have to get this done, It wasn't too bad. It is nothing compared to open heart. I look forward to walking soon and breaking my 3 mile record walk. Before surgery, I could maybe walk a block. Go me!

Each day is better than the day before. I still have fatigue and shortness of breath and soreness, but considering I had open heart surgery 6 weeks ago, I don't have much of a complaint.

I am hoping that I can do cardiac rehab. I will find out sometime next week. I want to ride bikes and learn how to surf and exercise and get in shape!

A few days ago I bought a long pillow. It was the best idea! I usually sleep with about 5 pillows and toss and turn all night, feeling like I don't sleep at all. The pillow worked wonders and I slept through the night!

I did have a scary moment today. Thanks to the pillow I can comfortably sleep on my side. I was lying on my side and I gradually and accidentally rolled over onto my stomach. When I tried to get up..... I could not. I guess that I forgot that I had open heart surgery and when I did try to get up, I did suddenly and found myself in a lot of pain. Luckily my husband was on his way home from work and helped me up when he got home. Ouch.

My birthday is on Sunday. I am hoping to have a glass of wine and have not had a drink since before the surgery and I am really paranoid that my heart won't agree with it. I just don't want to get palpitations or have any problems.

I can now sneeze without feeling excruciating pain! I am still sore when I get dressed and when sleeping. If I am out and about I get anxious after about an hour because my back starts to really ache. Sleeping is not easy. I am out of pain meds and I would really prefer to take one at night. I wake up several times throughout the night and changing positions is very painful after awhile. By the time I wake up, I feel like I haven't slept at all.

Just curious... Does everyone need Cardiac Rehab? I have not heard anything about this from my doctors. When are you supposed to start this?

Other than that, each days seems better than the last.

P.S... I have been using vitamin E oil for my scar. I might try cocoa butter too. I used that for my c-section and it really helped.

Is what the surgeon said to me! Everything is fine and great. I can drive next week. Feeling better.... Took kids school shopping yesterday!

I have not had any palpitations since before the surgery. They started again today. And, breathing still not better.

:(

I am so sore. No one told me how horrible the back ache would be. My back is so tense and solid as a rock, i assume from tensing up from the pain. I usually sleep half on my stomach, half on my left side. That's it. Now, I can only sleep on my back. It sucks. My back is killing me.

Other than that, I am waiting for Monday. It is my follow up with the surgeon and also I had an echo on Friday to check out how much fluid I have building up. Well, I can feel it crackling in my lower back. Coughing is not productive. It is just there. The cardiologist said she heard my murmur. Everyone else said my murmur was gone, so does that mean it's back? Do I have an infection? Do I need to have treatment to get this fluid out? Monday can't come soon enough.


P.S.... Getting dressed sucks. Ouch. Oh, and my left ear is STILL numb.

I went to the ER today for fever that has been lingering. I'd have gone to a primary care physician but I don't have insurance so I don't have a doctor. Anyway, they did blood work, EKG, chest X-ray.

Turns out that I have a urinary tract infection. They also said I have pleuritic or pericardial effusion... or fluid build up. I am not really sure. They do not know how much or if it should be an issue, so tomorrow I will do an echocardiogram to find out more. So as of know... I am not sure what is going on.

When are you supposed to stop taking the pain meds? Today marks 12 days and I have already been getting the pain med lecture starting a few days ago. I understand doctors and nurses get concerned about addiction but when is the recommended time frame to get off? I feel like because I am young, that means I will automatically get addicted. I feel like if I was an older patient, I wouldn't get half the crap I'm getting now. I'm sorry, but it hasn't even been 2 weeks since I had my chest sawed open. I'm talking one every 6 hours now instead of 2 every 4 hours. I've had a 99.5 temperature since I was at the hospital. I'm not feeling well today and the last thing I need is to get crap about my pain meds.

But anyway, I am curious.... How long til you were completely off the pain meds?

I am doing great. I spend a lot of my time napping. I have had visitors and lots of help. Some friends have brought dinner over, too. One of my biggest issues is that I keep tensing up my back. My back muscles are hard as a rock and more tense than I have ever had. My husband has been rubbing my shoulders after dinner. It relieves the tension a lot. I also keep getting low grade fevers and then they break and I have to change my clothes, fell okay for a bit, and then the fever chills again. They said not call unless it is 100 or more but it's only been 99.8 at highest, though my normal temp is on the low side.

Otherwise, everything is going well.

As I write this, there is my surgeon's photo on the right hand side of this website. He is such a bad ass! AND, I found him from this site. I really do appreciate Adam Pick and all of those who update on here. I was looking into this surgery 7 years ago and was never able to find any info until this site and book was launched!

I really have been inspired to give back and help other people!

P.S.... I uploaded some photos!

Heart Pillow

Hospital Bra!

Double rainbow! View from our window.

Night Before

My blood sugar is back to normal. I finally had a BM and I think this is actually happening. I did have a rough night last night. I was in a lot of pain from moving around so much, trying to get my stomach to reactivate etc. Then it hit me that my sternum was broken and the numbness of the skin around the incision... it hit me that this was real. I call it it my Debbie Downer Moment. I feel better now.

My blood pressure raised up a lot yesterday but seems to have gotten better, too. My main concern is that starting last night, my left ear went numb, We are waiting for the doctor to ask about this but I am not happy about it! I hope it is somewhat normal.

Well, I will keep you posted! I will let you know if I get to come home to the kids and my cat today!

I still feel like this is a dream.

I am being discharged tomorrow! They had to make sure I had a BM first. Well, my stomach was hard, bloated, and quiet. Luckily, after trying everything... I finally went! Never thought I'd be so excited about that!

PS... Check my photos in a few! I'm going to upload some!

Also, what is Adam's email!? I have a brilliant idea!

Hope all is well! <3

Surgery was Friday morning, just as the last shuttle launch went up! Yesterday, I got out of ICU late afternoon. I am doing great! Dr. Accola was able to do just the repair! I got very lucky. He used tissue from my own hear to patch up the hole in my aortic valve. That is such great news!

For some reason, I kept thinking I would get nervous but never did. I was in a lot of pain yesterday and the day before, so, it took a bit of time to find the right meds for me. Also, I made sure to get my anti-nausea meds too.

I am currently on lasix diuretic, steroid shot for my lungs, metoprolol beta blocker, potassium, laxative, phenergan anti nausea, and dilaudid for pain, and insulin.My blood surar has been high since I've been on meds and didnt eat for almost 2 days. It's normal. I just didn't know and was surprised when you pricked my finger. I must have been loopy the first time.

I was able to walk down the hall today and this morning I took my first shower around 4:30am. I have had a very lowgrade fever since yesterday. Just 99.4 but keeping an eye on it. Probably normal. I had a chest xray this morning and have been doing breathing treatments. Xray results are pending but I should hear from my doctor soon. Rumor has it he is down the hall.

Overall, I am in good spirits. I have a great support system, and I was lucky to get the repair! This has worn me out so I am going to take a nap!

P.S... I told Dr. Accola Adam Pick said he and he wanted to say hello back!

***Also, I made a Facebook album for the Heart Surgery Adventure! Add me! http://www.facebook.com/Mistibluday

Luckily we left early because the drive to Orlando was pretty rough. Lots of rain! As soon as we entered downtown Orlando, we could see the blue skies and the rain nearly stops. Blood work and then checking into the hotel. Surgery in the morning!

Authorization came through!!

Doing this again but for real this time! Bags are still packed. Making reservations again. Leaving to Orlando at 1:30pm to get blood work and then stay the night to get to hospital at 6am Friday!

Lot's of confusion but moved to possibly Friday. :(

My AVR surgery is still scheduled for July 6th, which is soon! I am actually pretty excited. I have been very busy lately and doing all of the the photo shoots I can before my deadline, July 1st. Then I plan to take it easy (somewhat) and spend time with family and clean, etc.

I found myself very frustrated about being out of breath and dizzy after a few minutes of shooting, especially outside in this heat, and thinking to myself.... SOON! I am really hoping that I get the energy that I never had.

Does anyone have any advice for a speedy recovery or what I need or should do to make the recovery go somewhat smoothly? Also, the one think that does worry me is the pain. I imaging it will hurt an awful lot with a broken sternum. Ugh. Advice?

Thanks for listening to my venting/panic moment. I am going to figure it out! I have a few numbers scribbled down and left several voice mails and now working on sending several emails. After opening that letter I just lost it. Or maybe I lost it after getting sent to voicemail after every call. Either way... It will work out somehow. I will be positive!

It was just smooth sailing since my last few posts. Everything seemed set and in place and organized. I will have that damn surgery on July 6th. I just need a few days or weeks to straighten this out.

Tonight my focus is on having a glass of wine and reading a book. Tomorrow I will take it day by day. I just need to practice patience and not trying to fix everything in a split second.


Have great night!

Thanks to my amazing friends, we have raised almost $2,000 for my heart fund. I was hoping If there were a way to get the surgery covered then at least we wouldn't lose our house by having me out of work for 8-12 weeks. However.... It is so much bigger than that....

I just got my denial letter from the Keystone Peer Review Organization denying my stay at Florida Hospital. I honestly have no idea what to do. My surgery is set, or was set, for July 6th. Why hasn't anyone from the office called me? What the hell am I going to do?

I somehow need to make $2,000 turn into.... a lot more!

If anyone out there wan't to donate even just $5 at http://mistibluheartfund.bbnow.org/ I would greatly appreciate it. Any advice or words of encouragement is helpful too.

And it doesn't help that my phone was turned off today or I would be making phone calls! So frustrated!

I met with the surgeon today that I found from this site and he was great! I definitely feel like I am in good hands.

July 6th at Florida Hospital in Orlando, Florida with Dr. Kevin Accola. We are going to stay in a hotel the night before surgery since it's an hour drive and I need to do my pre-op blood work. There is a hotel that is right across the street from the hospital. Pre-op blood work will be done at 3pm on July 5th, following that we will check into hotel... date with the hubby and back to the hospital at 5:30am!

I found a recommendation from Adam Pick for Dr. Kevin Accola in Orlando, Florida. Lucky for me it is just an hour drive. I like My surgeon and all but I wanted to get options. I didn't feel like there were any options with him and I am especially interested in a minimally invasive valve replacement. So my appointment is on Monday! I just gathered my angiogram, CT, echo, and MRI reports from January and I am ready for his opinion and advice.

Today I went to my electrophysiologist appointment because I keep getting startled easily and with the slightest noise my heart beat will jolt into a fluttering tachycardia. I'm not sure what it is. I've had 4 ablations for Supraventricular Tachycardia so the SVT could be back already, as usual but I am not sure that's the case. I am trying a new medication....Coreg. I almost wish she would just give me a pacemaker. I have bradycardia one minute and tachycardia the next and "inappropriate sinus tachycardia." I hope this medicine helps. I am still stuck in a rut as far as surgeons go and getting my option due to having to self-pay. My appointment today was $123, though it isn't bad but this will add up with second opinions and all.

So, at the end of my appointment my doctor asked if the nurse could listen to my murmur since I have "such a beautiful murmur." The nurse was very fascinated. That isn't really much a compliment, right? I must say, it is quite scary hearing your electrophysiologist tell you that getting a valve replacement is a nightmare, a disaster. I think I need to get prescribed some Valium and start seeing out of town doctors.

I finally got The Patient's Guide To Heart Valve Surgery yesterday! I feel so enlightened and I feel like I have more options than I could imagine before. Even just the other journals and the guestbook comments, I don't feel so alone.

I read about the Dr. Bad Bedside Manner and realized, this was my doctor! One doctor told me, "Your heart isn't a car, we can't just fix you." Looking back, I should have been more appalled. And recently, another cardiologist said that I don't want this surgery. That I could stroke out and that the clicking of the valve would drive me crazy. Every possible way to scare me about this surgery, he tried.

I am 26 years old and was born with Supraventricular Tachycardia and was diagnosed with moderate to severe aortic insufficiency in 2004. I have 3 kids and I get short of breath easily. I don't think it is fair to feel this way my entire life. On my wedding night, I couldn't stop worrying about my heart and hoping it wouldn't ruin that perfect day.

My cardiologist always said he wanted to wait until my heart was enlarged. I said, what is the point? Why wait for my heart to endure so much, enlarge, weaken, possibly risk even, more damage? Well, my heart is finally enlarging but he still said it wasn't enough. I need to be MORE short of breath, and MORE symptomatic than I already am...

After a January hospitalization, I finally met a surgeon who tells me I DO need the surgery and soon. That to me is a door opening to many other options. I had a bad cardiologist. But they're not all like that. I feel hopeful. And I don't feel alone. Thank you to all of you out there for sharing your stories and journey through this surgery and opening my eyes to a whole new world of options.


Misti

I am still stuck. Between the different hospitals stays at different hospitals, the cardiologist, the electrophysiologist, and the surgeon, I am just trying to get together the most recent tests and reports for a package to send off to, so far, Shands Hospital in Gainesville, Florida. They can do 64% off the surgery. Ideally, I would like to stay with the surgeon I have been talking to. I am also working on talking to the hospital he works out of, which is Holmes Regional in Melbourne, Florida and is also close to home. I need to talk to them and the surgeon's office to see if they have any programs for non-insured patients. We shall see. The search is on and my wonderful friends are doing fundraisers for me. I feel very luck to have such a big support system. I am hoping to have a better idea about where and when and with who I will have surgery. Does anyone have any advice?

Also, I head about the Ross Procedure from a friend who had his aortic valve replaced years ago and he doesn't have to take ANY meds! Why haven't I heard about this? Are they still doing this procedure? Have any of you had it done?

Today has been a rough day. Sometimes I have really good days with energy and I can be productive. I usually take advantage of those days a little too much, then later wearing myself out. Then, I have days like today where walking from my car to the grocery store exhausts me and gets me short of breath. I have chest discomfort, shortness of breath, and I just feel weak. Oh, and frustrated.

I had plans to go to a hair color/cutting class in Orlando today, which I had to cancel. I am also supposed to go to an art night tonight and feature some of my photography and I just don't have the energy. Even after feeling awful all day i still muster the energy to take my kids shopping for new shoes. I just can't bare to feel like I am wasting a day in bed. I despise the feeling of being debilitated.

I called my surgeon this morning to let him know that I am feeling terrible. He was in surgery so I am going to have to wait for a call back. I am just hoping that I can finally set a date for the surgery and figure out how I am going to pay for it as well as planning a schedule and getting stuff done before hand. I just want to be prepared as much as possible.

I am seriously considering having a pre-surgery party a few weeks prior. Is this crazy? I just want to see everyone, eat cake, drink beer, and have a fun night before I am stuck in bed for weeks.

I was recently dropped from Medicaid and I am supposed to have my valve replaced in a few months. I have never been able to qualify for any other insurance companies due to my pre-existing condition. I am currently stressing out about how I am going to finally get my surgery after years of trying to find a doctor to help me.

I met my surgeon recently when going to a new hospital that I have never been to, instead of the one in my town. I was admitted to the hospital for a week and he thought my case was interesting and wondered why my cardiologist has done nothing in the last several years. He ordered more tests to be done from my cardiologist, who refused to do the tests, which was a stress test to see how much I could handle. I didn't last long. I had to see my surgeon's cardiologist which I plan to switch to. I am breaking up with my cardiologist of 7 years, for obvious reasons.

So, how am I going to afford this without insurance? How can my 2 income family live off of 1 income while I am recovering? How long will I need to recover? I am a photographer and have weddings booked this year. Will I have to cancel and return their deposits? I also do hair. Will I lose all of my clients when they have to go to someone else while I am recovering? What are the risks? What can go wrong during surgery? So many questions and fears...