Renee's Heart Valve Journal

Hey hey!! I had surgery 08/13 and haven't posted in a while but have a question...... Has anyone had surgery over a year and still having pain where the sternum wires are? I thought this would have went away by now.....Thanks!

Mt. Rainier - amazingly beautiful!!!

I’m back….and better than ever!! It’s been 7 months since surgery. Holy cow – time flies!! I know in September I went on radio silence. I had a personal crisis that I needed to deal with. All I will say is that if you had this surgery or soon will, please PLEASE read the chapter on cardiac depression! It could save your life. It is real, it is incredibly painful and it is NOTHING to be ashamed about!!!!! You may have guessed I went through it. With counseling, medication and a truly awesome support network…I do think I’m back to my old self!!
As for my recovery – it has been a difficult and yet amazing experience!! My energy levels are through the roof. I have lost 27lbs. I am exercising all the time. I have signed up for a few 5k runs, went snowshoeing on Mt. Rainier(see pics), have a 3-day snowshoe planned for the end of March. I am getting out and enjoying life to a level I never thought possible. I had been so tired for so long. I thought that is just what happens when you hit 40. Apparently NOT!! For those awaiting surgery – I hope you are excited for this new lease on life – it really is a second chance. I have made so many positive life changes – I am eating better, drinking less, laughing more and have an attitude of gratitude! This was not an easy road, at times; I did not know how I would make it. I look back at my journey and am bewildered that I am the same person. I think about the surgery every day. I’m not sure why. I will see the scar, feel a slight pain, or notice the wires holding my sternum together, just subtle reminders of what I went through. What I don’t notice, my heart racing all the time, waking up gasping for air, panic attacks, anxiety, feeling like – something is wrong me. Those have all went away! Most people take for granted not feeling their heart, for me, it’s something totally new. I’m so excited for what I can do and accomplish. I know that I will need depression medication – at least for a while. I am ok with that. For those just beginning this journey, stay strong, great things are yet to come!!!!!
I do need to thank so many people who helped me along the way, Dr. Gravy, Dr. Ward, Dr. Thompson, Nurses, lab and X-ray techs at TG, St. Francis ER and hospital staff, Brianna, Devin, Mom and Dad, Grandma, Aunt Carol, Kathy, Shirley, Cheryl and Denise, Robyn, Randy, Amanda, Andrea, Tara, Kristin, Jen, Ed, Rob, Sventlana, Shar, Cat, Marlene, Ann, Roger, Mary, Paula, Tamara, Rosa, Aran, Bryan, James, Michael, Ernie and other heart valve patients, Adam Pick, everyone who prayed, sent cards and signed my guestbook, anyone I may have left out and the Almighty God – I would not have made it this far without all of you!!!!! I also want to thank the Seattle Seahawks for keeping me entertained and on the edge of my seat during recovery!! Woot Woot!!

Lovin the Hawks!!!

I’m 6 1/2 weeks post up and thinking about returning to work. I still have 2 weeks home and I need to rest more and let my sternum heal. I’m hoping the pain goes away and could use some advice from my fellow zipper club members. It really doesn’t hurt that much but sometimes I get a stinging pain underneath the incision site. If I lift something I shouldn’t, turn the wrong way or try to sit up incorrectly I get a very unfriendly reminder that I am still healing. Any idea when that will go away? I was told the sternum should be healed at 6 weeks so what’s the deal? Ha-ha
My mood swings are a bit better but I’m not yet back to normal. My coworkers will appreciate me staying away until I’m relatively sane again. Also I need my job so best to stay home a bit more. It’s unreal how those hormones can do a number on us (I think I’m particularly sensitive).
Any thoughts on cardiac rehab? Who went, who didn’t, etc? I had the initial appointment at the hospital but have been creeped out ever since. There were some very sick people. Surprising right?? Hospitals never bothered me until now. I think I have developed an aversion and can’t seem to make my second appointment. I’m seeking some motivation so let me know if you have any extra. Alrighty, that’s about all – kind of a boring post but that’s probably a good thing. 
Until next time.
XXOOXX

9/15/13

Hey everyone – I am now 5 weeks post op. After doing very well, suddenly I wasn’t feeling so good. I thought I over did it (which I may have). I was tired, aching, had back pain and then numbness and pain at the lower incision site. Well, low and behold a rash developed on the site where I had chest tubes. I immediately went to the Dr. thinking it was infected. Guess what? Shingles….seriously??? After reading about it, I am a prime candidate. I am on immunosuppressant therapy for Crohn’s, had chickenpox and had major surgery. I never dreamed this would be a side effect of surgery and yet here I am. I have heard so much about Shingles but never did research until now. I’m not sure how huge a setback this is but it’s a big blow to my psyche not to mention painful and depressing. I want so much to get back to normal, get back to life and living and yet now I’m forced to rest more, take additional pills and endure more pain. It’s difficult to stay positive. I am thankful it’s a minor case and I began the meds within 24 hours of seeing the rash which is hugely beneficial. It does not look like the horrid pictures you see on Google. Anyhow – not sure this will help others but you never know. If you can get the vaccine, do it. I am not a candidate because it’s a live virus and have Crohn’s. If you see a rash – immediately go to the Dr!!!

Until next time.
XXOOXX

Hey everyone, so I met with the surgeon yesterday. Everything is progressing as it should be. He said most likely he will NEVER see me again! Praise God! He asked about my mood swings which have been terrible. My poor children. (Insert sad face). He said it was all perfectly normal which I knew. What I did not know and found quite interesting, is that it’s not my fault! When you are on the heart/lung bypass machine and your blood is being artificially oxygenated, for some reason, your hormones get all scrambled up! There is actually a biological reason to my craziness, not just stress from having the surgery and being a female. I’m sure that played a small part in it, but am so relieved it’s mostly due to the machine. He said I should be back to normal in 1-2 months! He also mentioned some patients who cried for weeks and weeks after surgery. Anyhow – I hope this helps others who are facing this surgery to better understand post-op symptoms.
Until next time. XXOOXX

Standing in for Madonna

My 15 minutes of fame

Brewster and Daisy!

Two and half weeks ago I was entering the surgical ward at Tacoma General. I was very fearful - both of dying (pretty irrational given the statistics) but also of post-op pain and how I would get through it. I will say that the first few days post-op royally sucked BUT I can’t believe how quickly those memories are fading away!! Every day I am getting better and better! I am completely grateful to Adam for writing his book and creating this site. There are so many side effects of surgery that I would have never guessed. I see flashes of lights all the time. My sense of taste was catawampus for about two weeks after surgery. Everything tasted gross. Smells were even worse. Is it TMI to say my pee was dark blue for about 3 days after surgery? I had really bad nightmares in the hospital and needed xanax to sleep. My emotions are on overload and yesterday I started crying in the shower when I couldn’t turn the nozzle to a softer setting. Had I not read this book and all the journals, I would have seriously considered a psych ward for me. Anyhow, I feel completely normal knowing others are going through this journey with me. I want to send a prayer out to everyone having surgery this week. I pray you will find strength in the days leading up to surgery and that in post-op you will be comforted and heal quickly. The pain is bad but short lived and there are medications to help you. I will be thinking of all of you and reading your updates. You WILL get through this!!!
Until next time XXOOXX

I’ll begin with – Apparently I DO like Vicodin. I was finding that Ibuprofen and Tylenol had become less effective so two days ago I took one. Wow – it worked amazingly! I’m keeping it at just two a day. I don’t have an additive personality but still want to be careful. Overall – my recovery is much easier than I thought. I’m great as long as I follow my sternal precautions and keep up with my meds. I’m walking more and climbing stairs too! Laughing really hurts and I can’t stop that with my parents and children in the same house together. There is always something silly happening. Mornings – ugh, hate mornings. I think due to pain medication wearing off and being stiff from sleeping upright on my back all night long. I wake up in the same position every morning, which can’t be good for you. Although, sleeping any other way is not comfortable. Mood swings – SEVERE! Warning – beware of crazy psycho irrationally angry and emotional lady! It’s all normal but jeesh, it pregnancy X’s 10! (Smiley face) The worst part of this: Realizing how helpless I am and should be. I need to let people do things for me and ask for help. If I don’t, I pay for it the next day. Best part (there is one, actually two) realizing how many people - friends, family and co-workers, that care for me and have reached out. It’s overwhelming!! 2nd best part – looking forward to a healthy active life!! I’m planning vacations, hikes, bike rides and life style changes. Someone on this journal called this a rebirth. I can’t wait to begin!

Until next time - XXOOXX

Hi everyone. I’m home recovering. The surgery was a complete success!! The Dr. was able to do a very good (even great) mitral valve repair that he feels should last a lifetime. Thank GOD again because I do not want to go through that again. Not sure what I can say about the whole process. I don’t want to scare folks off who are headed into surgery but also, I do not want to give everyone false hopes that this procedure is a breeze. My dilemma was that morphine, which is a great pain reliever but also had me throwing up at every dose. Can you say OUCH!!The next day, the ICU staff did not manage my pain well and it became unbearable. I should have been more insistent - but after surgery and anesthesia, you are not thinking clearly. I was given ONE Vicoden. Three hours later I was in a lot of pain and requested more meds which I promptly told "No - it's note time yet." Keep in mind this was just 24 hours post-op!! By late late evening, my pain scale of 9 finally subsided and I was sleeping better. After switching to Percocet and/or Vicodine, the nausea returned and a migraine headache as an added bonus. Saturday and Sunday evening I did not sleep AT ALL. By morning the nurse would come in “Let’s walk, come on, get in the chair, get up, do you breathing blah blah blah”. It’s a good thing I was too tired to strangle her. In hindsight, she was a great nurse and the walking, breathing, getting up, did wonders for my health. I could not believe how fast my recovery went when I followed those directions. I figured out that I am one of those patients that cannot tolerate strong pain meds. I was so disappointed!!! As of Monday morning I have been on Tylenol or Advil and feel considerably better! I’m still taking things very slow but thankful to all my family, friends, co-workers, nurses, Dr.’s ICU and CCU staff. I could NEVER have gotten through this without everyone’s support and words of encouragement. I’m very emotional which is to be expected. I pray for anyone that has to endure this.

Hi all,

I had a visit with Renee yesterday and she is talking more and a little bit her feisty self:) which we all know is a great thing!

She is walking and sitting in a chair for short periods of time and is increasingly getting better! Hopefully she will go home today or tomorrow. The doctor is please with how her recovery is coming along. :)

Tara

Hi all, I went to visit Renee today and it was very short. She is doing good, but very tired! She talked to me for a few minutes and then closed her eyes.

The ventilator is out, although it stayed in a little longer then planned. She is complaining of some pain (understandable) and she says it is hard to get a deep breath. Overall she is on the road to recovery!

Tara

Hi all, the surgery went as planned. They were able to repair it and not replace the valve...which is what they were hoping for. She will be in ICU for awhile so they can monitor her waking up and taking the ventilator out. By later tonight she should be able to talk to us. I will update you with any changes.

Tara

Hi all, this is Tara. Renee has been in surgery now for about an hour. Things are going as planned. She was in good spirits this morning, she had an entourage in her prep room, trying to keep her from worry. The doctors and nurses have been great!

From her son....she's dreaming about unicorns and her perfect son making hot coco and soup:)

I will update as soon as we hear something more.

Hi everyone - the journal seems to be working so you will get updates here but we have your e-mail addresses just in case. :)

My family is here and one of my bestie's is staying the night. The only crying I have done is at the outpouring of love and well wishes from so many friends and family. I am so blessed. I really need/want to thank you all. Tomorrow, my friend Tara will be manning the journal. The next time I write, this big event will be behind me. Cannot wait for that!

I need to send a shout out to the other 08/08/13 heart surgery patients, Jeff, Christine 1 and Christine 2. You are in my thoughts and prayers.

I can do all things through Christ who strengthens me.

Until next time. XXOOXX

Quick update – My insurance approved the CTA Scan! Hurray – no heart cath! My test is Monday afternoon as I needed several blood tests prior to the scan and also for the surgery. I spoke to my Cardiac Electrophysiologist. (It’s really cool I have so many new specialists!!) After my open heart surgery is completely repaired, he will need to go in and destroy the extra circuit I seem to have (WPW). I am not sure why this cannot be done together, although they are two different specialties, one dealing with the mechanics and the other with the electrical circuits. For the WPW surgery – it’s a one day procedure done through the groin through a vein to the heart. My Cardiac Electrophysiologist did say that since I hadn’t already died from it, there’s a good chance I won’t. Apparently if you make it past 35, you’re good. (Yes, my mind was totally spinning as we were covering this). My children will be getting EKG’s to ensure they do not have this. My parents arrive tomorrow and then the next week is full of more tests and appointments. It’s good they keep you incredibly busy so you don’t have to actually think about what’s going to happen. Until next time…XXOOXX

Yesterday I met with the cardiologist. He confirmed that I do have Wolff Parkinson White Syndrome. I told him what the hospital cardiologist said, which was “It shows WPW on your EKG but you don’t really have it”. My new cardiologist assured me that it shows up on the EKG due to an extra electrical pathway, which is essentially what WPW is. He needs to schedule a CTA or Heart Cath. Both test get a good view of the vessels and arteries and can determine if there is other damage/blocked arteries that need to be fixed during my MVP Repair. I am really impressed at their proactive thinking because honestly – it never occurred to me do that, which makes complete sense right!?! In the CTA – they inject die into the veins, do a scan, done! The heart cath is much more invasive – I have to be sedated and they put a tube in my blood vessel at my groin and thread it ALL the way to my heart!! That is NOT the procedure I want to have. Apparently the office has had trouble with insurance companies paying for the $1,200 CTA scan so most likely I’ll be doing the $20K Heart Cath. It makes no sense. I’m waiting for my insurance company to make a decision. Either way – this will be done tomorrow afternoon.
I am now 1 week away from surgery!! I can’t believe how fast this happened. July 15th diagnosis to Aug. 8th surgery. My mood swings are getting worse. I snap at people for no reason and then have to say Um, so sorry, see I’m having open heart surgery and apparently that just makes you crazy, please forgive me.   Then at times I’m laughing at the magnitude of this or crying – then sometimes I’m very strong and feel like “I can DO this…it’s not a problem, what’s a little pain for a new life with a completely functional heart!!!” I hope I carry that feeling into the surgery room next week.
I have a wonderful support system that I am so grateful for. Friends and family have been calling, writing, stopping by, dinner invites. Everyone is wishing me well and encouraging me. It really makes me feel good. My son spoke to me yesterday about his thoughts on this. It was good to have him open up. It’s important to remember that this isn’t happening just to me, this is affecting all my friends and family as well. I find myself telling them as well – “It will be ok, I will be fine, we will get through this.” “It will be ok, I will be fine, we will get through this.” “It will be ok, I will be fine, we will get through this.”
Alrighty, until next time….XXOOXX

I just left my surgeon’s office. I must say, I feel like I am in excellent hands! My date is August 8th. I have to arrive at 5:30am. He said there is an 80%-90% chance of a repair vs. replace, which is best case scenario. I have several tests, appointments and an antibiotic to begin prior to surgery so these next two weeks will be quite busy!!

I’ll try not to write here every day unless I have critical updates but I HAVE to tell you how AMAZING my friends are, after I tell you about coming to my house today and discovering my TV and DVD’s have been stolen. It’s the most bizarre theft ever. There was so much more to take, I don’t get it, but I’m not complaining.  So – within 24 hours, my friends have rallied together to move furniture from the house we are selling to this one, letting me use a very nice reclining for recovering, borrowing a TV (since my was stolen) giving me bedding since I purchased 2 more beds due to the influx of family coming to care for me! I am so blessed and humbled!!! I love you all!!

I also want to thank my friends and family and even strangers who are leaving my inspiration messages on my guess book. You all are lifting my spirits and giving me courage! Now I just need a surgery date!!

Today I am extremely tired. I didn’t sleep at all until I took a Xanax, thankfully I had them on hand! This morning Dave took me out to breakfast which was such a nice unexpected surprise!! I have to admit, my heart healthy diet went out the window! Haha I then came home and took a long long nap. I’m still very tired. My Mom and Dad are flying out here to help me with the recovery. I am so thankful for that. In reading Adam’s book – it gives me a very good idea of how helpless I will be after this procedure. I also spoke to a very good friend that had open heart surgery. He gave me some really great tips and prepared me for the road ahead. It helps being so well informed. There still is a big part of me wondering why I have to go through this.

I’m considering Dr. Graeve for my surgeon so today we decided to visit the Cardiac Unit at Tacoma General. It’s a new facility with state of the art everything! I met a nurse who was incredibly informative. She told me so much regarding my recovery. I explained that this was minimally invasive. She said “Not if you are having the procedure here”. Apparently the few hospitals in the area have not had good luck with the robotic surgery. There have been too many complications and a few other reason, too many to list. What does this mean?? On the verge of tears I ask “So they will have to cut open my chest?” Yes says the nurse. No slightly crying “So they have to cut open my sternum?” Yes says the nurse. Now sobbing - I ask “So they will have to cut open my chest?” Yes says the nurse. Did I already ask that?? Yes says the nurse. This new information is too much to process. I always thought – well I’m good as long as they don’t have to cut open my chest. But now?!? I really have confidence in the staff and have heard so many great things about Dr. Graeve. This is a brand new cardiac facility. If they are not using the minimally invasive procedure – there has to be a good reason. Time to do more research on that subject.

I am finally home relaxing and absorbing all this. I called all my friends and family, my ear is about to fall off. Thankfully, I now have a journal for getting out information!  I called my boss and she was amazingly supportive. I even heard from her boss as well. I could not have it any better. With upcoming surgery and my organizational nature, I immediately went to work. There is a lot to consider, insurance, short-term disability, surgeons, hospitals, work coverage, pre and post-op care, bills, my doggie, etc etc. Thanks goodness for this book The Patient’s Guide to Heart Valve Recovery. It’s been so informative and such and easy read! I’m sure I can get through this. 

After 3 nights and 4 days in the hospital – I was really getting edgy. I really wanted to leave. I was tired of being hooked up to all the tubes and monitors. I hated not having a real prognosis. I felt so bad for Dave and Devin when they came to visit me. I know they had to be bored stiff. I couldn’t understand any of this. I was supposed to be sent home after being told there was nothing wrong with me. 1:30pm – I finally had the 2nd TEE and really good drugs!! I woke up peacefully, without incident and most importantly AFTER the procedure was over. There was no tumor after all!!! I have a severe case of Mitral Valve Prolapse with a torn Chordae tendineae. I guess the flap was clearly not in the correct space and it looked like a tumor. I was told they could do robotic surgery and not have to cut open my chest. Thank GOD!!!

I was anxiously awaiting the procedure - TEE, but most importantly - the drugs!! TEE is where they put a tube down your esophagus that has a camera at the end. They can take ultrasound images of the back of your heart. The pictures are clearer because they do not have to go through bone and fatty tissue. Anyhow - the nurse was late and very unprepared. Somehow during the procedure my IV line blew out and I was only receiving a small portion of the sedative. I promptly pulled out the tube and started gagging. The cardiologist was more than happy to reschedule for the next day with an anesthesiologist. He did say there was something like a tumor on the valve – and it would need to come out. Huh? What? Apparently I was in shock because it never really occurred to me that I could have a tumor.

Disclosure: All the nurses were incredibly fabulous – with the exception on the one doing my sedation that day.
.

I had an ultrasound, another EKG and about 58 blood tests. We had no idea what was happening or why I was still in the hospital. It was not a heart attack, my blood pressure was good, and what's with all the blood tests? It felt like an episode of House. The cardiologist came to us at about 7pm and said something was wrong with my Mitral Valve, it was thick and could be an infection. I was then scheduled for a Transesophageal echocardiogram (TEE) for Sunday Morning.

Dave and I had just spoke to our travel agent. She had found us the best Cancun Wedding Package! We were going to dinner but my heart started acting up. For the 5 days it had been beating irregular. I felt nervous inside...something just wasn't right. Their was presssure with shortness of breath. I knew that heading to the emergency room with these symptoms would create a very chaotic scene. I was very scared but for years I was told it was anxiety, panic attacks, too much caffiene, etc. I didn't want to go through the embarresment yet again. Do my dismay - I was acutally admitted with an irregular EKG.