Tag Archives: recovery

Steph & Marfan Syndrome (Guest Post)

Steph emailed me a few months ago after she stumbled upon my blog during her research while preparing for heart surgery. She was thankful to find my story which helped prepare her for her surgery. Before and after her surgery, we had a few phone conversations and lots of texts. Recently, I encouraged her to write a guest blog post if it would help her in any way. She is an excellent writer, and a super nice person who is thankful and happy with life, yet struggles with the difficulties of living with heart disease (and Marfan Syndrome). Please take a read. Thank you Steph!- Anthony

I feel my heart pounding through my chest and I wonder is this the last time? Will I experience this sensation forever? This feeling is not pleasant at all. As the beat gets stronger, my pulse begins to thump in my ears. My mind starts to wonder; will my heart ever have a steady beat?

These are the thoughts that raced through my mind since the age of 7. As I take you on this journey of living life with Marfan Syndrome; there will be some pain, anger, joy, happiness, and sorrow, yet most of all there will be the strength of a warrior.

Marfan Syndrome is a rare connective tissue disorder. An individual could be diagnosed at any age. Luckily for me, I was diagnosed from the moment I was born. The doctors looked at my long skinny fingers, listened to my pounding heart beat and knew that this life of mine would be an adventure of battles and successes. In synopsis, by the time I was diagnosed there was not a lot known about Marfan, but there was enough to keep me going at a healthy pace. You see, Marfan Syndrome does not just affect the heart, but it affects the whole skeletal structure, which can lead to scoliosis, it affects the eyes, leading to retinal detachments and lens dislocations, complications can arise with the lungs, it affects the rate of growth and the amount of weight that is possible to be gained. Marfan Syndrome does not have to be within the family heritage; it is a gene mutation within fibrillin1 gene with the mutation of chromosome 15 and I am one of the rare cases who was the spontaneous gene mutation within my family. Though I faced my struggles with accepting each aspect of having Marfan, the endless hospital visits, the countless surgeries one after the other, and the lifetime medication. I can not lie and say I never felt that it was unfair or that I never became angry, but I can say that I always held my ground and knew I was lucky. Lucky to have a family that supported me, doctors who knew what to do, and friends that believed me in. Although, life with Marfan does not only affect one physically, but it takes an emotional toll as well. Some people do not realize growing up with a chronic illness could be challenging because there are times one may feel misunderstood and alone. There are times where a person may wonder what he/she did and why this is happening. As I embraced these experiences throughout life, there was the ultimate concern and worry I always carried around with me. When will I have open heart surgery to prevent more damage to my heart; when will I feel a normal heart beat?

Diagnosis of my heart: Aortic Aneurysm, Mitral Regurgitation and Mitral Valve Prolapse. In simple terms, my aorta was enlarged (4.6 cm) and the chances of dissection and bleeding out is when the aorta reaches (5.0cm) is increased.

I spent 23 years visiting the cardiologist with the wonder, “would this be the year he says I need surgery?” Yet, little to my surprise every year was an answer of “your heart is stable, so we do not want to go in too soon.” By the time I was ready to graduate from college, I begged and pleaded to have the surgery before I moved from the East to the West Coast to attend graduate school. My cardiologist was adamant that I did not need surgery yet and there was a high chance of me actually never needing the heart surgery. So, there I was trying to understand how from the age of 7 years old I used my birthday wishes for my heart to be healed, by a teen I realized it was not my choice, and now here I am an adult hearing that I may not need the surgery-yet will be able to live with the complications? See, one may feel happy from that news; yet my complications also created rhythmic issues, such as Atrial Fibrillation and Ventricular Tachycardia. This caused my heart rate to increase drastically at any moment of the day and one of the main correlations to the problem was the mitral valve.

20160625_175412Yet, I continued on with my life and moved to start graduate school. Naturally I knew that I would need a new cardiologist and went to Stanford Hospital because they have an entire clinic dedicated to Marfan Syndrome, which I found to be pretty amazing. I will never forget my first visit; my nerves shaking, my mind rushing with thoughts, seeing a new cardiologist after all these years; terrified me. He was warm and confident in his words, I knew that I made the right choice, though the news I heard that day changed my life forever. After completing an echo, which measures my aorta and tracks the leakage in my mitral valve and said the words “You will need surgery within the next year or so, your aorta is 4.6cm not 4.2cm and the mitral valve leakage is severe.” I could feel my heart sink into the pit of my stomach, here I was just accepting the thought of never having the surgery and now I am being told that I have to decide when is the best time to have the surgery. Tears flowed from my eyes as I suddenly felt overwhelmed with hope and fear. All my emotions were stirring around my mind as I knew that this upcoming year would be the best time to have the surgery.

Fast forward; here I am, 24 years old and just finished my first year of graduate school in California. My family flew down from New Jersey and we were going into this battle one way or another. The surgery was scheduled for June 27th at 8am and the week before I could feel my life changing. I wondered if the surgery was going to work, I thought about death, I thought about life, and most of all I thought about my loved ones. Prior to scheduling the surgery, my surgeon reassured me that my leaflets (the part of my mitral valve) could be repaired and that I would not need a mechanical valve. Honestly though, I know my body and it never plays by the rules; so I asked what would be the backup plan if it was unrepairable using my own tissue. He told me that I had the choice of using a mechanical valve or a prosthetic valve, yet proceeded to tell me that it would not be needed because everything looked perfectly healthy and could be repaired.

So, there I was two days before the surgery with my family. We went sight seeing and attempted to push our fears deep below the surface until I received the phone call from my surgeon; he explained the co-surgeon on my case reviewed my echo and saw more damage to my mitral valve than expected. I held my breath as he spoke and the words that I was most terrified of hearing were finally said; “I need you to make a decision of having a mechanical or prosthetic valve because it does not appear that he could save your own tissue.” I could feel my whole body shaking and the anger boiling in my veins, I thought to myself can I not just just have a smooth surgery; but I calmly asked for some time to think about my decision and ended the phone call. During this time, I was in the car with my brother and sister in law, sitting there in pure silence and my brother tried to reassure me, yet again tears flowed down my eyes as I could feel my fear continue to rise. By the time I came home, I frantically researched pros and cons of each valve and based on the surgeon’s opinion a prosthetic valve would not last more than 3 years in my heart and I knew there was no chance I could face this surgery twice. After consulting and great advice from Anthony, I made up my mind on having the mechanical valve.

The day finally arrived as my family and I walked into Stanford Hospital, silence crept around us as the fear vibrated off of our skin. We all had teary eyes, yet did the best to smile and believe everything was going to work out for the best. The time seemed to be going by quickly as I registered and the next minute I was taken back by a nurse to get prepared for surgery. There were only two people allowed to see me at a time, so my parents took turns with my brother and sister in law. As I waited I saw the co-surgeon for the first time to confirm my decision and I told him to go mechanical and that meant for both valves. If one could not be saved I wanted to have them both be mechanical to be done with this journey once and for all. As my parents looked at me, I suddenly felt all of my emotions freeze over. I could not cry anymore, I did not feel the fear, nor did I panic. Possibly because I asked for medication to help me relax before I went into the operating room. As we said I loved you and they rolled me off to the operating room, I did my best to fight against the medicine due to my panic of falling asleep. I told the anesthesiologist that I have been waiting for this surgery since the age of 7 and asked her to make sure they fix my heart. Proceeding this request, I started to ask about how she got into the field and what she liked about the job, I then looked to my left and saw the other anesthesiologist working on an IV line in my left wrist and asked if I should stop talking. This whole process was terrifying to me and the only way I was coping was by trying to distract myself from my own thoughts, I almost wished that time would just stop for me. Soon enough I had the oxygen mask put on me and I took three deep breaths and fell asleep.

For 11 hours the surgeons operated and poured their energy into healing my heart. Two hours after being transferred to the Intensive Care Unit, I slowly began to wake up from the anesthesia and could feel the breathing tube in my throat. My thoughts moving at a sluggish pace, knowing I could not speak; I steadily raised my arm and struggled to wave my hand. I heard the nurses saying my name, telling me to keep my eyes open and stay awake or they can not take out the tube. Probably a few seconds passed by as I closed my eyes again and slowly reopened them. Every fiber within my body was fighting to stay awake and keep my mind calm. Every thought that I had before surgery seemed to slip my mind as I laid there with the nurses reassuring me that I am fine and my heart is healed. The night seemed to drag on endlessly as I woke up in pain every half hour, but tears did not fall from my eyes this time. Instead I asked consistently if my heart was fixed and with the great patience the nurses had they reassured me that my aorta was replaced with a graft material, which is called the Tirone David-V Stanford modification procedure and that my mitral valve does not have any more leaks due to a repair with a 30 mm CarboMedic ring and needle cords. In other terms, my heart beat is finally “normal” as I heard these words, I could not help but repeat myself and ask are you sure? At that moment I did not know if I was terrified of the chest tubes and central lines or if my heart would not react well to the surgery and the corrections would slip away from me. After 5 days of being in the ICU, I was moved to a step down unit to start my physical therapy.

My hospital stay consisted of eight days; it was the most traumatizing and insightful eight days that I have ever experienced in my life. Everyday my parents were by my side and I could feel the love radiate from them and at that time, it is exactly what kept me going. There were moments where the pain would take over and I thought to myself “how am I ever going to survive this?” Yet, I kept moving forward, every physical therapy that was given to me; I did not deny it; I did not fight it; I pushed myself and participated because I knew that was the only way I was going to get out of the hospital. On the day of being discharged, I remember feeling this deep gut wrenching fear of being so far away from the medical staff, yet at the same time I wanted to run out of the hospital and feel the sun on my skin. I was home for three weeks when all seemed to be going well. Of course there were the days where I felt completely defeated as my energy was low, but the one thought that kept me motivated was that “after all these years, here I am with my heart beating a steady beat.” Then the unexpected happened and I broke out in a fever of 101.5 with sharp shooting pain on the left side of my chest. I could not lay down, I could not lay on my side, but most of all I could not breathe.

So, here I was three weeks out of surgery and I felt as if my heart was going to explode and the panic took over my mind. My mother calmly called the on-call surgeon and he said to come to Stanford right away. As we drove to the hospital all I could think was “why is this happening to me, why can I not get a break, why for once can I just not have a smooth recovery?” These thoughts circled my mind as we arrived and waited in the emergency room. I could not help myself, but cry. There was no holding back my tears; every emotion I felt was displayed to the waiting room and quite frankly I did not care. I was going to cope with the way I knew best and that was to experience every emotion regardless how terrified I was; I was letting myself feel and that was all I could ask of myself. As the nurses prepped me for blood work, IVs, EKGs, echocardiograms, all I could do was cry and there was no calming me down because I wanted my surgeon. I wanted security in someone who knew my case, I wanted to feel safe. Unfortunately, he was away for the weekend, but his team was there and I knew they were doing their best. The chest X-ray showed that my left lung was filled with fluid and that I had inflammation around my heart. I was kept overnight for observation of an “infection” and regardless of what painkillers they gave me, the pain stayed and was throbbing to the point where I tossed and turned all night.

In time the morning came and I saw the team, they gave two hypotheses for what could be happening; the first was a “type B dissection that could happen in Marfan patients and the second was pneumonia” I could feel my heart sink into my stomach and asked what he meant by a dissection. The whole purpose of this surgery was to prevent a dissection and I was told repeatedly that it was fixed. Yet, the tricky part is with Marfan no one truly knows what the body will do. There are complications from connective tissue disorders that could arise at any moment and there I lay hoping it was not the case. The tests were endless to rule out what was happening to me, CT scans, X-rays, blood work, but the most painful part of everything was knowing that the doctors did not completely understand what was happening with my heart.

There I was in the hospital again fighting for my life to just feel “settled”, I did not need everything to be perfect; I just wanted my heart to be settled and calm. The next 72 hours were a waiting game. Numerous doctors came in and gave their explanation for what may be happening. Some thought that I would need to go back in for surgery and have fluid drained. Imagine hearing that? Obviously it did not go over well with me. These were assumptions, guesses, nothing was certain and it was breaking me down in fear. In time my mom finally called my cardiologist and told him I was back in the hospital. Minutes later I saw him walking in the room and I had tears of joy spill from my eyes. I knew I would get answers at last. The timing was perfect, as he walked in on a tech doing an echo and right away my cardiologist saw the problem. I had pericarditis, an inflammation around the heart and slight fluid as well. I looked at him not understanding a word of what that meant for me. All I could say was, “does this mean I have to go back under the knife?” I never even expected myself to say a phrase like that, but the words seem to fit at the time. He smiled at me and to the grace of God, he told me “no it does not mean you need surgery, but you do have an infection around your heart; which explains the pain, so you will need antibiotics and motrin.” Part of me was so relieved that I did not know how to respond besides repeatedly saying thank you and then I thought about how life is going to remain unpredictable whether my heart is healed or not. This was a fact that I was going to have to accept and learn to live with. Of course, I was not looking for my life to be planned out perfectly after my surgery, but I hoped for some peace of mind.

After three days of waiting and wondering what was happening, the answers finally led to controlling my pain and I was allowed to go home. Leaving the hospital this time brought more fear than the first time because I wondered what would happen next. Though I knew I could not live my life in fear, I was not going to try and hide every emotion I was feeling. In all honesty this experience has been one of the most blessing times I could have ever asked for. I finally received my desire of having my heart fixed and being able to live my life. Yet I know it does not stop there, the road to recovery is a long process and there may be bumps in the road that I do not expect, but my journey has just begun. For all of those who have experienced having open heart surgery or any other surgery, you know how challenging the process could be. Although, if it is one lesson I will carry with me forever since this time, is to love a lot, forgive those who hurt you, take the paths in life you want, and most of all go through every emotion you feel because this world was not meant to be easy, but it was meant to build warriors.

Please feel free to learn more about Marfan Syndrome via Marfan.org and e-mail me with any questions you may have at Steph.Randazzo@yahoo.com

Spreading awareness to Marfan Syndrome may save a life and help inform those who are unaware of this rare connective tissue disorder.

Sincerely,

Steph ❤

Camp Del Corazon

I would like to show you something that is one of the most important things in my life.

Camp del Corazon – “On the Island” from D. Russell on Vimeo.

Camp Del Corazon is a summer camp for children with congenital heart disease (CHD) on Catalina Island. Every year for the past 21 years, kids with heart disease have been attending this summer camp. The counselors at camp spend come from all walks of life: Doctors, nurses, medics, teachers, waiters, actors, musicians, you name it. Many counselors, like me, also suffer from congenital heart disease, some of which attended camp as campers and are now all grown up.

Camp is fully funded by donations and fundraising campaigns. EVERY CHILD that attends camp, goes for FREE, thanks to generous donations. At CDC, campers learn that they are strong, and capable of doing anything. They become confident despite their condition, and discover courage and friendship.

Please consider donating to Camp Del Corazon HERE.

This was my second year volunteering for Camp Del Corazon. Last year, I volunteered as a counselor only 5 months after my 2nd open heart surgery. Camp gave me a sense of belonging, just as it does for the children. I immediately became part of something bigger; a family of people who care. At camp, there are only good people. It is impossible to fully articulate how amazing and important Camp Del Corazon is, for so many children with CHDs.

If there is a place in your heart for a person who grew up with Congenital Heart Disease… If you suffer from heart disease… If you know someone who has a child with CHD… Please watch the short video below to peer inside camp and discover how truly important it is. Then, please consider donating to Camp Del Corazon HERE.

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Super silly at the rockwall

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yes, me in a Giraffe costume, walking the highline.

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The view from camp

10 week Post-op Update

Just a quick update & status report. I met with my cardiologist several weeks ago for the last time. With my new job come new insurance and no more Kaiser. I’ll be meeting my new cardiologist from Loma Linda University Hospital this friday. I spoke with Larry Creswell M.D. of the Athlete’s Heart Blog. He was kind enough to speak with me about my situation, which I really appreciated. He is a cardiac surgeon who spends a great deal of time thinking about athletes with heart problems. He gave me some good insight which will help steer my conversations with my new cardiologist.

I have been riding my bike indoors on my indoor trainer. I have been keeping my heart rate under 120BPM with no problem. The metoprolol helps with that. It’s not too bad, i just drag the rig into the living room and watch an episode of Dexter while I pedal away.

We hiked out into the desert to watch the meteor shower the other day. The shower turned up pretty dry, but it was nice to camp. I even carried a pack for a half mile with no problems. I even can lift my girlfriend again with no problems. The slow march continues.

indoor setup

indoor setup

How to Fight Cardiac Depression

There are many forms of depression, and a whole range of degrees of severity of this mental condition. Cardiac depression is some form of depression that occurs after a heart event, such as a heart attack or heart surgery. There are many resources out there on this topic, but I found one to be very useful, and that is an interview on the Patient Power website with Dr. Kim Lebowitz of Northwestern Memorial Hospital. I highly recommend listening to the interview or reading the transcript

“When you look at the cardiac population as many as 20 to 40 percent of cardiac patients are going to be presenting with symptoms of clinical depression, and that might be compared to about 4 percent of the general population at any one given time having symptoms of depression.” -Lebowitz

Dr. Lebowitz explains that the presence of depressive symptoms after that cardiac event can actually predict a poorer outcome for a patient, which means that depression is an independent risk factor for both the development of heart disease and cardiac outcomes following a heart attack or cardiac surgery. Basically, depression can cause (increase) heart disease, and heart disease can cause depression. 

That sure does sound like a vicious cycle. Why am I discussing this? Because I have experienced first hand (on the lower end of the spectrum) some symptoms of cardiac depression. For me, it is easy to be positive in writing, like on this blog, on Facebook, or on posts at supportnetwork.heart.org/heartvalvedisease. I think these outlets have definitely aided in my overall outlook, which I will mention again later. That does not mean though, that I am not struggling with some symptoms of cardiac related depression. I would not say that I am depressed, but I have tasted the bitterness of some of the symptoms. I feel that I am taking positive steps (described below), but the effect of only a few symptoms have been very difficult for me. Imagine what someone who has full blown cardiac depression is going through.

So what does Dr. Lebowitz say & recommend?

  • Having a range of emotions or strong emotions does not mean you are depressed. It is healthy to express all sorts of emotions.
  • An individual with clinical depression will display a number of symptoms that cluster together that may cause the individual with distress or impairment to their daily life. These symptoms are:
      1. Sadness or a loss of interest or pleasure in most activities.
      2. Difficulty sleeping or an increase/ decrease of sleep.
      3. An increase or decrease of appetite. 
      4. Irritability.
      5. Cognitive changes: Feeling hopeless, worthless, guilt, trouble concentrating or focusing, feeling sad or down, and most importantly, feelings of suicide.
      6. Decrease in motivation in things, such as a decrease in sexual functioning. 
  • Depression is treatable and the treatment for depression is safe for cardiac patients and that effective treatment can improve their quality of life.
  • Not all pharmacological treatments are necessarily safe for heart patients. Antidepressants called SSRIs (selective serotonin reuptake inhibitors) have been found to be safe for most heart patients. 
  • Therapy, predominantly cognitive behavioral therapy is another form of treatment. 

Friends and family actually have a powerful role in reducing cardiac depression. The following steps can be taken by friends and family.

  • The first step is to recognize the symptoms listed above.
  • To decrease depressive symptoms, increase recreational activities. Initiating activities is the hardest part for patients. Friends & family members should encourage activities and participate with the patient.
  • Friends and family play the role of cheerleaders. It’s helpful to have someone point out how far they’ve come and everything they’ve accomplished. 
  • Friends and family may need to sometimes abandon their cheerleader mode, and simply acknowledge the patient’s frustrations and varying emotions. e.g. ‘Yeah, I know that this is hard and this is difficult and I understand.’ 

It appears that Dr. Lebowitz is from only a handful of healthcare professionals actually dealing with this issue with real patients at a cardiac hospital. What that means to me is that it is up to us (the patients) and their families to identify this condition, take active steps to alleviate the symptoms, and to report it to our cardiologists, primary care physicians, and mental health professionals.

While I recover from my 2nd open heart surgery, what am I doing to eliminate these symptoms and to stay positive?

  • Bonsai & gardening.
  • Blogging
  • Frequently walking around town with my dog Moon.
  • Finding new music.
  • Watching a new show (Dexter).
  • Meeting friends for coffee.
  • Being creative by doing art projects
  • Reading books & comic books.
  • Going on trips with friends.
  • Talking to mom on the phone.

See proof below.

Bonsai creation

Bonsai creation

Herb Garden +Cat

Herb Garden +Cat

3 Months Post Surgery: BIG Milestone

Recovery is more than getting back to physical health. I am psyched that I have been able to get back to where I am now, however there are some challenges that linger.

  • Emotions: I have noticed significant emotional changes since my surgery. I am not suffering from (cardiac) depression, which happens to many heart surgery patients, but my emotions are extreme. I feel greater joy, and greater sadness in my daily life. The extremes are more present than they used to be.
  • Pride: I feel like I have something to prove. I feel the need to be stronger than I ever have been before. I’m afraid that I am sometimes overdoing it.
  • Physical strength and endurance. Some stronger, some weaker.
  • Occasional PVC’s (premature ventricular contractions): though these have decreased dramatically.

Cycling

Cycling on Feb 22, 2014 ‘Greenspot rd route’: http://my.digifit.com/site/share/workout/c5906ac59bf911e395a409b929907b9a.html My restrictions have been dropped, so I do not need to keep my heart rate under 140 BPM any longer! The cool thing is, due to my beta blocker medication, my heart doesn’t really go above that anyway. We will see once I’m taken off the, hopefully this week. If you are looking at my heart rate chart, don’t worry about the extreme spikes above 200 BPM, I am pretty sure that those reading are errors due to the wind when I go very fast downhill. I think the wind vibrates my jersey against the heart monitor. Those spikes only occur when I go downhill, which is when I am exerting myself the least.

Climbing

I feel that I am back to my normal climbing strength. Now I am training to climb harder and better than I ever have in my life. I have begun a 3 month training regiment that will put me in the best shape of my life. I’ll be sure to post my progress on this. There are various climbing competitions in southern california that I will be competing in. It is time to get strong. I wish I had a recent picture of me climbing something cool to show you, but I don’t.

Personal Life

This one is tough. Refer to my first bullet at the top of this post.

SO anywayz here’s a picture of me with my shirt off!

Scar Shot!

Scar Shot!

Week 2 Update

My dog Moon (white dog)

My dog Moon (white dog)

It has been 2.5 weeks since my surgery. Each day I feel better in some ways, and worse in others. One highlight of week 2 was going to dog beach in Huntington, CA with my buddy Yousseff and our dogs. Walking on the sand was actually pretty hard!

My heart and lungs are doing great. Last week I would notice my heart working hard when I would bend over to do tasks like unplugging a computer cord from an outlet. I do not get that feeling any more. My lung capacity has improved greatly since week one. My walks are getting much easier. I haven’t really been pushing the miles or breaking any records with my walks, but I’ve been consistent.

All of my issues have to do with muscle pain related to my cut sternum and incision. It seems like each day I have a new pain. These pains all exist somewhere on my chest or back. The body is healing, and pain is a sign that things are getting better. Lately, the worst of the pain has been in my lower back. My muscles must be very inflamed, because yesterday during lunch, when I was swallowing my food, I could feel my food going down my esophagus, and it activated my back pain as it went down. One issue with this pain is that it often wakes me up in the night. Getting back to sleep usually isn’t too hard, but sometimes it keeps me up. I think that lying flat in bed might be irritating some of the pain.

My blood pressure has been very low due to my medication (beta blocker & ace-inhibiter). I took my BP just now and it read 93/71. The purpose of the medications are to lower the BP (and heart rate) so that the recovering heart does not have to work as hard. One side effect of such low BP, is that when I stand up I can get quite light headed and dizzy for a moment. Luckily, I will probably only be on these meds for about 3 months.

My heart rate has been getting lower, which is a good thing. The week of my surgery, My pulse was over 95, often over 100 beats per minute. Last week my resting heart rate lowered to 88-93 BPM. Now, my resting HR is anywhere from 73-85 BPM. This makes my very happy, because many open heart surgery patients have very high heart rates (sometimes over 110) for weeks or months after their surgeries.

I have to mention how happy I am with my medical team. My cardiologist, who I’ve been going to since 2011, has always shown patience and concern over my condition. She never rushes me out the door and always answers all of my questions in detail. She is also very pleasant to talk to. My cardiac surgeon is a rock star. At the hospital, all of the nurses and doctors had amazing things to say about him. His bedside manner is terse and matter-of-fact, but to me that shows his high level of confidence and experience in his field. My primary physician has also been great. I had an issue the other day that required me to get an after hours CT-Scan, and he read the results from his home and called me from his cel phone to discuss the results (The results were negative: no fluid in chest cavity and no blood clot in lungs). So, if anyone in the Redlands, CA area needs a recommendation for a primary physician, cardiologist, or surgeon (in the Kaiser Permanente health system) let me know; I’ve got names.

Week 1

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It has been exactly one week since the day of my surgery! I have to be honest I am surprised at my progress. My parents have been with me this whole time, making this process way easier than if I were alone. A week in review:

Monday 11/25/13    

Surgery Day. Surgery was shorter than expected. He replaced my aortic valve with an On-X mechanical valve (25mm) as planned. The portion of aneurysmal ascending aorta was shorter than expected, so it was repaired and reinforced, without any involvement of a synthetic tube. Surgery was 7am and I was awake by 2pm. The throat tube was out by the time I awoke. I was kept in the ICU overnight.

Tuesday

The neck tubes and catheter were removed the pain involved with the removal of these was a bit unpleasant, but nothing to lose sleep over. I was moved to the Cardiac Surgical Care Unit in the morning. I took my first short walk (1 lap around the unit). I sat up in a chair.

Wednesday

Though I hoped to have my chest tube removed, the doctors wanted to give it one more day to finish draining the fluid in my chest cavity. More walking. slight fever at night. difficulty sleeping. Neck/back/shoulder pain getting worse. Resting heart rate 95-105

Thursday

Nurse Practitioner removed chest tubes. Very liberating. Multiple laps around unit, several times a day.

Friday

Discharge day. Nurse Practitioner removed pacemaker wires Pacemaker is left on heart in case of problems). This is another eerie removal. You can actually kinda feel a tug inside of you, which is the wires dislodging from the heart itself. All other IV lines, EKG sensors & transmitter box removed. Met with doctor & NP one more time. Met with pharmacist about anticoagulant treatment. Heart shaped cough pillow received. Wheeled to parking lot to go home! Home by 4pm. Went for two .4 mile walks. Still had trouble sleeping. Back/neck/shoulder pain causing too much discomfort.

Saturday

More downtown walking. walked to coffee shop and ran into some surprised friends. Several .5 mile walks. Natalie came over and we went out to get a small potted christmas tree. She carried it. Back pain still an issue. sleeping still difficult, but slightly better.

Sunday

Went for a 2 mile walk! Later, walked again to a downtown art event, with some meandering around, probably .75 miles. Back pain getting better, but still sore. Went out to eat, but had no appetite. Got first full night of sleep! Zzzzzz…

Monday

A week has passed! A full night’s rest goes a long way. Goals seem attainable. Progress is obvious. Feeling better each day.

To another week…