Julia's Journal

Today I celebrate two years since my Ross procedure. This year has passed so much faster than the first year. Except for the scar, the low part of which is still bruised and ugly looking, I don't think about the surgery on a normal day. The echo last month was normal. I feel so blessed and grateful that I can now enjoy my son's high school graduation and going to college 100%. In June I will have a check up with Dr. Ryan, my surgeon. I am so thankful to him.

A year ago now I was hooked up to a heart-lung machine. What a difference a year makes! Now the top of my health worries is whether my son has a sprain or a stress fracture on his back. My sister sent me a birthday card yesterday. Yes, I get to celebrate two birthdays in a year! Many people asked me, “How long does the recovery take?” I find this really hard to answer. Here is my experience. After 1 month, I felt “almost back to normal”: after all, I could drive and I could walk 1-2 miles albeit not too fast. After 3 months, I thought “I wasn’t that well at 1 month, but now I am much better”: I could take long car trips and even plane trip and sight seeing; sure I still need naps some days and get tired in the afternoons. After 6 months, I thought “3 months were really not enough; now I am back”: ankles no longer swollen, left shoulder much better, don’t need naps, sleep through the night, can walk fast, etc. After 9 months, I was working full time, worrying about mundane things, running around like chicken without heads, but my blood pressure and heart rate were still up and down doing random dances from day to day. Now, the blood pressure and heart rate fluctuations are gone. My remaining complaint is that my short-term memory is not as good as before. The key is that everyone’s recovery journey is unique. I also learned that human body is an incredibly complicated and coupled system. I had more doctors’ appointments and lab tests in the past year than probably my whole life combined. Most of them are not directly related to my heart surgery, but I am sure all of them are related. So I continue to deal with these annoying but not urgent health issues. I am very grateful that Dr. Ryan could perform Ross procedure for me. Otherwise, Coumadin would have made my other health problems much more difficult to deal with. I am celebrating today by reflecting on the journey for the past 21 months, doing things I enjoy, and not to responding to external pressures (i.e. work stress). The support and love from my family were invaluable for my recovery. I thank my friends for their kind thoughts, prayers, and encouragement. I thank Adam for providing this supportive venue for us to share our inner fear, experiences, and journey. I have “met” so many people who helped me “back to normal” on this website. Chinese say “揀回來了一條命”, literally means “pick up a life (from ground)”. That is how I feel now.

Yesterday was 6 months since my aortic and pulmonary valve replacement surgery. Overall I feel pretty well. In October, my echo showed no aortic stenosis and mild regurgitation, pretty much the same as just after surgery. This Friday I walked 3 miles (well, 2.9) in 41 minutes, which was the fast I have ever done. In retrospect, I was a bit of mess in October: fluctuating weight, heart rate and hormone imbalance, which were probably caused by hyperthyroidism not my heart. Since two weeks ago (when weather cooled down), my body seems to find it easier. I sleep better and have lower heart rate (70s to low 80s) and stable weight. I also moved taking metoprolol to the afternoon instead of at breakfast. Even though I only take 12.5 mg, it makes a difference. I used to feel completely wiped out and desperate for a nap around 3-4 pm. It doesn’t happen any more that I don’t take metoprolol in the morning. The only thing is that my incision is not flat. There are two slight depressions, about 1 in in length, when I run my fingers along the incision. They don’t cause pain, but seemed to develop after 3 or 4 months, i.e. after they removed my lift restriction. I don’t know whether they were caused by something I did or gaps between the chest wires. Does anyone else have wavy (in and out, not side to side) incision? I continue to be surprised how long the recovery process is. At every stage, I seem to feel better than before, but then a month later, I realize it can be even better. Cough was gone after 2 months. Swollen ankles gone after 3 ½ months. Insomnia mostly gone after 4 months with occasional bad nights to 5 months. Shoulder pain gone after 5 months but still weak. Now I hope that my heart rate and hormone will stabilize and my hyperthyroidism, while it may not be caused by the surgery but it is definitely linked to it, can be controlled without another drastic measure. Wishing the best to everyone going into surgery or going through recovery. As Thanksgiving approaches, I am grateful for Dr. Klein’s timely diagnosis and Dr. Ryan’s skills, my family for their support for the entire process, my friends and colleagues for their encouragement and kind wishes, and everyone on this website for sharing your experience with me. It is a blessing to be able to worry about the hassles associated with the holiday seasons.

The blood test they did on my annual physical last month revealed that I have hyperthyroidism. (TSH < 0.1) Guess what! The symptoms for hyperthyroidism are fast heart rate, fatigue, weight loss, insomnia, etc, which for those of you who follow my journals know I have since the OHS. However, there is no documented study that show OHS would cause hyperthyroidism and correlation does not prove cause-effect. Since hyperthyroidism is not good for the heart, I have to take care of it. Strangely, getting an appointment with an endocrinologist is much harder than with a cardiac surgeon. Several places I called told me "January is the earliest Dr. so-and-so has an opening." Last year I got an appointment with Dr. Ryan in less than a month that included the Christmas-New Year holidays!

Time passed quickly between 3- and 4- month marks. I was going to skip posting this month, but then I remember that at the beginning of recovery, I was hungry to read the postings by people a few months ahead of me: I wanted to know what was in store for me a couple of months down the road. So I hope some of you will find this useful. I am now back to working full time and doing my share of chores in the house as before surgery. I don’t take naps most days. But I do get tired at the end of the day and especially on Thursday and Friday afternoons. At 3 months post op, I was still having incision pains and taking ibuprofen almost everyday before bed. I was a bit worried. But gradually in the past few weeks, this too went away without even my noticing it. Now occasionally I needed a couple of ibuprofen, but mostly for my left shoulder than my chest. I am back to my sleepy self. Occasionally I still had to get out to the recliner or sofa for the tough part of the night, but those are the exceptions rather than the rule. Yeah!! I started Pilates and Yoga in September. There are no restrictions on what I can do, but there are plenty I can’t do. I also swim one or two times a week now. I can’t swim the yardage I used to do and it’s very slow, but it is nice to be in the water again. I have read several people complaining about pain or numbness in left shoulder, arm, chest, even fingers. My left arm still can’t reach as far and doesn’t feel as strong as the right. The left shoulder is tight (impinged), but it is better than a month ago. When I reach up, I hear a bunch of cracking/popping sound. Sometimes I feel some ribs in my left chest moves. I didn’t have any of this before surgery. Any one knows what is causing left side of the body trouble after OHS? Wish all of you out there well, especially those who are waiting for surgery and who are in the initial stage of recovery.

Today is my 51st birthday, and the 1st birthday post Ross. Hopefully there are many more to come. Today is also the Chinese Middle Autumn Festival, when the moon is the fullest. Driving home I marveled at the big, yellow moon low in the horizon. It was a very hectic day with no rest and no break. I went to Pilates for the first time after 5 months. I am back! Yeah! I am thankful that my stenosis was discovered (last year about this time) and remedied in time. I appreciate the "second" chance I have been given.

Today is 3 months after my Ross procedure. Overall, I feel much better & stronger than a month ago. Most days I don't need a nap any more. My chest still has short, sharp pain at random places & random times, but it's tolerable. Parts of the incision also occasionally hurts, but not associated with coughing or sneezing. My resting heart rate is now down to the 80s, not 90s. My blood pressure is usually between 100-110/60-70. Sleep is much better although not normal. I would fall asleep for 1 or 2 hours & wake up. It used be that I would stay awake until past 2 am before falling asleep again. Now I still wake up but I feel drowsy most of the time & usually can go back to a few short sleeps until the magic time, 3 am, when I fall into deep sleep. BTW, I don't sleep well on the recliner anymore. I guess I graduated. Did any fellow HVJers have similar experience? I still sleep really well on the couch! When I don't need to come out to sleep on the couch any more, I would consider my sleep is back to normal. The past month I took a plane trip. On vacation, I was able to tour with my family every morning & early afternoon, but I had to sit down & rest in the middle of the afternoon. When we got back home, I was wiped for two days. During the long car trip & the week on vacation, I wore compression socks. The socks don't eliminate leg swelling, but kept it in check. Someone told me that soaking my legs in hot water at night will reduce edema. When I am at home, that became my bedtime routine too. It really does work! I finished cardiac rehab in July. Now I go to the gym to do the exercises I did at rehab or I walk. The past two days Texas had a pleasant treat of cool mornings so I was able to do two of the pre-surgery walks. I will try swimming this weekend & signed up for Pilates & Yoga for September. I am excited to do these exercises that I enjoy again. Now I just need my left shoulder to get better. Oh, I haven't told you about my left shoulder. When I was first clear to drive back in June, I felt the motion range of my left arm is not as much as my right and it's weaker. But since there were so many other issues back then and I had the lift weight restriction, it didn't bother me much and I just ignored it. In the past few weeks as my life & activities are getting back to normal, my left arm bothers me more and more. When I accidentally do certain motions, e.g. Reaching back, shooting pain occurs from my back to my shoulder all the way down to my elbow. Wed I went to see the chiropractor; he said I somehow developed shoulder tendinitis and not being able to exercise my arms in the past 3 months made the muscles weak and shoulder worse. I read a post on this website that says shoulder pain persisted for him after a year. I began to do shoulder exercises, hoping it won't turn into frozen shoulder. I finally feel I can see the light at the end of the tunnel with this life-changing, life-saving event. I wish everyone pre-surgery peace and calm and a successful surgery. For those of you post surgery and on the journey of recovery, my only advice is, "Be patience and let your body take the lead." Adam, thank you so much for setting up this site and sharing your story.

It has been two months since my open heart surgery. During the past couple of weeks, I finally began to feel stronger and ordinary activities, e.g. grocery shopping, do not wipe me out any more. Last week, I took the first road trip by car to Austin (4 ½ hours). I felt fine but my left legs did swell up even though I wore the compression socks. I am glad to say that I no longer worry about the occasional cough or chest pain because I know that I don’t have major complications, just having to be patient about healing. In terms of exercise, I will “graduate” from cardiac rehab next Monday. After that, I will be on my own. I have been walking 40 min during the days I don’t go to rehab. Last week, during a couple not-so-hot mornings, I succeeded in walking my pre-op route (2.9 miles) in my pre-op time (45 min). So that is definitely progress. I am still out of breath after climbing 2 flights of stairs, and am not clear to do pilates or swimming yet. After 3 months. What bothers me the most now is fast heart rate at rest. My resting heart rate is routinely above 90, sometimes 100. It is still considered normal by the doctors, but I feel uncomfortable since my pre-symptom heart rate was low 70s and I am now keenly aware of my heart beat. I feel my body shakes with every beat. The fast heart rate came after I suddenly lost 8 lbs in one week. I gained the weight back (fluctuating 2-3 lbs) but the fast heart rate stayed. My weight fluctuation is probably due to fluid. When my weight is up, my left leg is a bit swollen. Sitting upright for a couple hours causes my legs to swell up. My chest still reminds me the traumatic experience it has been through. The top 1 inch and the bottom ½ inch of my incision are still red and puffy. It itches sometimes. In addition, I have these sharp, short (< 1 sec) stabs at random places of the chest. Like fireworks: random in location, short, and bright. I wonder what is going on in my body and when it will settle down. Sleep is better than a month ago, but still not great. I still have to come out to sleep in the recliner from time to time. Since my complaint about not being able to sleep, I have learned that lots and lots of people don’t sleep well. Some people consider getting 4 hours of “quality” sleep a luxury. For me, who is used to get 8-9 hours of deep sleep, 4 hours of any quality sleep are just not enough. Being patient with my body and my recovery has not been easy. Last month, luckily World Cup games keep me entertained while I sat in a relaxed, recumbent position, which was good for keeping swelling down in my legs and keeping heart rate in check. The upcoming month will have more activities, including a plane trip. Best wishes to all of you who are heading into surgery and those who are at various stage of recovery.

Ok. They might have found out why my legs are swollen: I have varicose veins. I never thought I had them because I don't see my veins on my legs. But ultrasound showed that my veins are 6.5 mm diameter, rather than the 3-3.5mm normal size. So the valves cannot close and the blood pools in my legs. I was told that varicose veins have nothing to do with heart or longevity. They just cause swollen, ache legs, which I had when I walked a lot (before I had stenosis symptoms). But American Heart Association website says that when one is in heart failure, varicose veins will make the swelling worse, which was the case for me when I developed symptoms. Wikipedia says people with varicose veins have more incidences of restless legs and leg cramps. I am still battling with restless legs now. The technician said it is a simple procedure to shut off these veins. Anyone has this done? Is it really "simple"? What might be the side effects? It has been 7 weeks since my surgery. I gained back some weight over the past week, but heart rate is still very high (low 90s). I climbed 3 flights of stairs yesterday. I was happy that I could do it without problems, but I was not so happy that I was still out of breath as pre-surgery and my heart rate stayed high for quite a long time. I am still searching for something to say "I feel better than before surgery." Happy July 4th to everyone.

Every time I thought I am on my way back to normal, something sets the progress backwards. Sleep is better; rash is better; legs are not swollen. This week I am dealing w/ a minor stomach upset & a massive weight loss (> 8 lbs in one week)! This is the first time in my life when I was not happy to see my weight drop. My heart is just as upset: my heart rate went up as my weight dropped. I know it's all fluid, but I don't know why it happened or how to get my weight back to normal so my heart doesn't have to work as hard. I guess this is another bump on the road.

Several people on this website, including me, have commented that their heart rates are 10-20 higher than pre surgery. I plotted my heart rate vs. BP since I got home and found a very interesting fact: my BP and heart rate are anticorrelated. When my BP is low (~ 100), my heart rate is high (85-90). In the past few days, my BP is high (~120), my heart rate is low (~70). Also, my swollen ankles seem to be worse when BP is low. Anyone else has similar experience? Anyone knows what is going on?

All my life, I was the one who could sleep shocking amount of time: getting up was the problem; falling asleep was not. So this insomnia thing after OHS caught me by complete surprise. So here are what I have tried. Benadryl 25 mg: Absolutely no effect. I was wide awake as if I didn't take anything. Ambien 5 mg: Very drowsy, but still can't fall asleep. Still a bit drowsy in the morning. Melatonin 5 mg: Not as drowsy initially as Ambien, but more drowsy as the night goes on. I slept on and off all night. Never deep sleep. A bit drowsy in the morning. Tylenol PM: Not drowsy. Fall asleep quickly, but wake up a couple hours later and stay more or less awake for a couple of hours before falling into deep sleep. Not drowsy in the morning. So I haven't found a good solution yet. Another issue came up: I developed a rash near the top of the incision and upper chest over the weekend. The nurse said it's not infected, but didn't know what would cause it. Since I can't put cream on the incision, I am back on prednisolone for 6 days! I hope this will take care of it.

It's been one month since Dr. Ryan replaced my aortic valve with my pulmonary valve (Ross procedure). Time seems to pass so quickly and yet so slowly. I am in a strange state of the recovery journey. On the outside, I probably appear completely normal, albeit moving a bit slowly. However, privately, I am still waiting to be able to say that "I feel better than before surgery." I can't honestly say that. Here is a look at my current state. Positive side. I can walk 2 miles in less than 40 min. I can drive. I can do most things except for lifting and reaching far. Negative side. My left leg is still swollen by the end of the day most days. My heart rate is high this week (low last week). My limps twitches when I am about to fall asleep. And my biggest hurdle is that I can't fall asleep until past midnight. Benadryl did nothing. Prescription sleep med did a little more: making me drowsy but not putting me to sleep. Tonight I am going to try melatonin. All my life, I am a good sleeper and prefer 9 hour shut-eye. This insomnia thing is completely foreign to me. Finally, I can only concentrate on work stuff for a couple hours, which might be related to not having a good night sleep for days. I hope that I will have more positive than negative things to say about my recovery in a month. Happy Father's Day to all the dads out there.

The loneliest part of this journey is the middle of the night, when the world is quiet and asleep and I am wide-awake. My body is tired. My mind craves for some rest. But somehow sleep eludes me, with 20-minute parcels of mercy. “Toss and turn” cannot describe my situation since I can only move slowly so not to trigger pain. I do move from the bed to the recliner to the couch and back to the bed, seeking the comfortable position that will allow me to sleep. I listen to my new, ultra strong heartbeat. My body shakes with every beat in certain positions. (Actually in most positions.) Pain along the incision and surrounding muscles comes and goes, reminding me that my body just went through a major trauma. My legs twitches, sometime violently, as my body tried to relax, jerking me awake again. My mind starts to wonder what is going on inside my body, when I will be “normal” again, and how much longer before the daylight arrives. During the day there is always something to do and so far there is usually someone with me. In the middle of the night, there is only me and my heart beat.

This week is definitely easier than last week. First if all, my cough more or less went away. It is not that I don't cough now, but I don't have those involuntary, continuous ones. I did get diarrhea for a day, the same day I went into work for 2 hours. Maybe it was my body telling me that I am over stepping my authority. Pain. Where it hurts seem to move around. Anyone else has this experience? When I cough, my left chest hurt. This was worse last week since I was coughing a lot. This week's new pain is above the top of my incision, about breast bone level. This hurts when I bend down or stretch my left arm. Sleep. Since I stopped hydrocodone last week, sleep is hit or miss. When I sleep on my left side or flat on my back, I feel my body shakes w/ every heart beat. I can't fall asleep when I am vibrating at 80 times/min. Everything goes quiet when I turn to my right side. Anyone else experience this? Sleeping in the same position, however, gives me backaches. Oh, at night my legs involuntary twitch which wake me up when i was about to fall asleep. Anyone else has this symptoms? Swollen legs. Dr prescribed diuretics this week, but low dose & every other day. I think the day I takes it, my weight goes down, blood pressure goes down, & swelling is gone, but everything returns the day I don't take it. Cardiac Rehab. I started CR last Friday. It just doing treadmill, stationary bike, & hand weights when people monitor you blood pressure & heart rate. But it feels safe & it's air conditioned. (Texas is already very hot.) BTW, when my cough went away, my blood pressure went up from 95 to 110 & my low-grade fever was gone too. I would like to thank all of you who brought me yummy soups, fruits, and flowers. They are the highlights of my recovery.

I had a chest X-Ray & ultrasound today. The good news is that I don't have fluid in my lungs. However, they don't know what is causing my persistent cough & the my swollen legs. So I have the symptoms of effusion but not effusion. The doctor chose not to change my meds & see whether it will resolve by itself. Anyone out there has the same experience?

Last week I thought my recovery was going well. I felt stronger & could do more things w/out thinking about it. However, a persistent cough set in over the weekend. It's mostly dry & non-productive. But nothing stops it, making naps hard to come by. Although I can get over 1000 on the spirometer pretty routinely, I don't feel I am stronger or my lung capacity improves. My chest, shoulder, & upper back all ache now. Everything seems to be stagnant for the past 5 days. Intellectually I know the recovery process is non-linear, but it is still very discouraging.

I can't believe it has been 10 days since my OHS. It seems so long ago, but yet not 2 weeks. I can do a lot of things in my own now. Have done: go to supermarket (4 times), dinner out last night, walked over 30 min this morning, getting in & out of bed & recliner by myself, eating pretty much normally. Can't do: open dishwasher door, open front door, sleep on the left side (somehow my chest hurts), go for a whole days w/out snap. I still need pain meds. 2 nights ago, I tried to go to bed w/ hydrocodone, but was miserable & gave up at midnight to take the meds before getting a few hours of sleep. Last night w/ a hydrocodone, I pretty much slept through the night. So I guess I will stick w/ the pain meds for another few days. What bothers me the most is a dry cough that is not going away. My heart rate is still high, around 85. I had to skip metoprolol a few times bc my pressure is too low. High heart rate & strong heart beat also make me a bit uncomfortable. Good luck to all of you out there who are on this journey.

I am glad to hear all my OHS brothers & sisters from last week are at home or going home. Suzanne, good luck w/ your long drive home. I am very glad & very lucky to have an excellent surgeon & heart hospital less than 10 minutes from home. I now know why we moved to Plano 4 years ago. It was not for our careers, not to be closer to Mark's family, not because of Duncan's academic or swimming; it was to save my life. Following James' example, I thought I would write a summary before life got busy with stuff again. 1. According to Mark, my surgery started at 8:50 am on 5/15 and was wheeled into my room at 1:20 pm. I had 7 tubes: incubator, 2 IVs, catheter, 2 chest drains, central line in the neck. 2. I had the Ross procedure. Dr. Ryan moved my pulmonary valve & root (I think) to my Aorta & did an re-enforced Aorta valve & root replacement. Then he put a donor's pulmonary valve in the pulmonary position. My incision is a good 6 in. & look really ugly right now. Mark says that the big incision is what will allow me to live normal life. I have to remember that. 3. I am no good at the spirometer. The respiratory therapy unit was not as strong as the nurses or PCTSs. Every time a new person showed up & didn't know what I could/couldn't do. So we started all over every time. At first, they worried that my cough was not doing anything: I didn't have much to cough & the incubator tube made throat really irritated (still). Luckily, once they found out I can walk, the stopped pestering me as much. 4. I am surprised by the lack of pain given my chest was cracked open. I took trams doll 2 nights at the hospital. 2 nights I just had ibuprofens. Of course, the 1st nite I was doped up w/ morphine + other stuff. That was a very difficult nite. Somehow some decided to change my pain meds the next day & I feel much better. Last night I decided to take a hydrocodone before bed bc my incision hurt a little & the nurse said it's better to be ahead of pain. 5. Unlike James, I don't hear or see better. I am a lot more aware of my heart beat: feels like the body + chair/bed shake w/ each beat. My blood pressure is more or less back to pre-op values, but my heart rate is much higher. I hope this will go away soon. So I am still myself, just feel very out of shape. 6. I have a new perspective on life and work. While work is important to me, there are many things other people can do, but I am the only who can work on recovery for my body. I am lucky to not have the usual complications so far, but I know each person's recovery journey is different. So I will put priorities on walking, breathing, doing exercises & let other people step in & help me w/ work. Wish everyone out there good luck with your surgery & recovery.

Took my first shower A.R. (After Ross) this afternoon! I didn't know a shower can feel this good. It looks like I am going home tomorrow. Hurray! It's hard to get a good night of sleep in the hospital unless you are complete drugged up. That is something I didn't know before. In the past 5 days, I met doctors, nurses, rehab personnel who are so dedicated to their work & to help us patients get better so we can go home. I am grateful for them. Today I also met 3 people who were open heart surgery patients & now volunteer for the " red heart club." They are so compassionate & full of life. It will take me awhile longer before I don't need 2 naps a day & I know there will be ups & downs, but I have renewed hope of being stronger & living a fulfilled life.