John's Journal

Robert Miller  Good job!! Try to increase it gradually. Watch your pulse and blood pressure. It will go high but make sure it's in acceptable ranges and that it drops quickly once you stop (after few minutes). I sweat quite a bit too. It's similar to before surgery, though. 

Robert Miller  5lb of water out of your feet? I am a little bit skeptical about this. 2.2lb of water is a cube of 1dm x 1dm x 1dm or about 4" x 4" x 4". Since you mention 5lb that 4" x 4" x 4" = 2.2lb would per per foot. I think you are losing these 5lb over your whole body. Having said that, do you really need to be on the "water pill" 10 weeks post op? It might also help reducing salt intake if you don't already do that. This should help with water retention and blood pressure. There are also other medications that can help with blood pressure and potentially heart rate and/or arrhythmias if you have that. 

John Cook  Edema was a problem for me before surgery because of my arthritis and it was what kept me in ICU for 5 days after surgery. I went into surgery at 242lbs, went up to around 258lbs after surgery, and they made me drop down to 231lbs before they moved me out of ICU. Dropping all that water was the worst 3-days of my life. I don’t really remember the other 2-days.

All my doctors agree the edema problem I have now is 100% heart related.

For diet, I’ve been averaging about 1700mg on my sodium for a month. I’m not as low as I could be but I’m trying to do better.

Since discharge, when I’m not on diuretics, my weight will jump up to 240lbs and my feet are so swollen, you can’t see my ankles.  Depending on my diuretic regime I can get down to 238, 235, or 231lbs, but it always jumps back up to 240lbs within 3 days of going off the diuretic.

Let me tell you, swinging from 240lbs to 231lbs and back to 240lbs over 7-days really sucks and I did it 3 weeks in a row.

With the addition of compression socks a week ago, I’ve managed to get down to my current 234lbs in 10 days with very little creeping back up on off-diuretic days and I have ankles again.

Also, I’m on so many meds for it, my BP is under 120 regardless of how much salt I eat or how much water I’m retaining. 

Robert Miller  Well, I guess for you it makes sense to be on the water pill. Is the pulse of under 120 when you do things? If it's that high just sitting at the computer and such then you probably want to get it further down. It's my understanding that ideally your pulse shouldn't be more than about 90 when at rest. 

John Cook  BP = blood pressure.  My surgeon wants it always under 120 unless I’m exercising.  If I creep over it at rest, I’m supposed to let my doctors know so they can increase my drugs and knock it back down. It’s part of his protocol for Ross patients.

Most days, my resting pulse is between 50 & 55.  Part of it is the drugs and part of it is regaining some fitness. I’m starting  formal walk/run interval training this week.

Robert Miller  A pulse of 50 to 55 is excellent. I was there in my teens. Don't really know later on until I had my surgeries a couple years ago. I wish I was there. It's my understanding that if your heart beats at 90 or less most of the time you are fine. Systolic blood pressure below 120 is good. Also look at diastolic because that is the pressure that is constantly applied. But you are probably just fine. 

Marie Myers  Congrats on lowering the carvedilol. And yes, the stretching motion was a source of discomfort for me also. I added easy, slow stretching to my routine, and it did improve things. Was your preop anemia ever investigated?

John Cook  Cardiac rehab might have me starting with 1lb or 2lb weights this week. Hopefully that will help with the stretching.

My pre-op anemia was slight and most likely caused by being on naproxen for a three years for what I thought was sciatica but turned out to be undiagnosed psoriatic arthritis.

Suzette Schear  Cardiac rehab will help. Sounds like edema needs to be under control.  It could be drinking too much water and retaining it., or sodium intake. Check with your doctor they might have to put you on water pills.  It should n’y fluctuate.  Your only 3 weeks of recovery listen when your body talks.  Congrat being on the other side it’s a process. Wishing you the best. Sounds like your got the right attitude keep up the good work

John Cook  I’ve been on water pills off and on since my surgery 8 weeks ago.

My first schedule for the first month was on 4-days on in a row.  I’d lose 8lbs and then regain it in 3 days. I’d call for a new Rx and repeat the cycle.

Then they changed me to on only Monday & Thursday.  My weight stayed the same for the week, but at the +8lbs.

Then they changed me to on Monday, Wednesday, & Friday.  I’m on my second week of it.  I lose 3lbs over the first 3 days.  Then I’m steady for 2 days. Then I gain it back and restart at the +8lbs.

My feet swelling is not directly related to my weight. They can get bigger while my overall water weight goes down for the day.

I’ve been better about my salt for the last month.  I’m using MyFitnessPal to help me track it. I’m averaging about 1700mg/day.

I’m not tracking my water but I’m drinking it excessively either. I’m pretty sure I’m under 2 liters/day.

Suzette Schear  Something sounds off.  Did they indicate how much water you should drink.  I was always thirsty, they now indicate my level sugar is high.  I hope they get to the bottom of the inconsistency in your system.  

Rita Savelis  Let your doctor know you'd like yr dose lowered, or even stop betablockers if possible. Ask every time you see him or her. There are no hard rules about meds. But if you don't bring up the topic, your doctor might not either.

John Cook  I don’t mind the beta blocker as long as the dosage doesn’t interfere with my lifestyle.  50mg 2x a day does.

i don’t have another appointment for 2 weeks.  But if my resting heart rate is dropping, i don’t see why they couldn’t lower my carvedilol by half a pill and increase either my amlodipine or losarten to make up the difference in blood pressure treatment.

Suzette Schear  Just ask your doc before making med changes.  Could affect something else going on.  Doesn’t always have to wait till doc apt.  Make friends with receptionist or assistant they are knowledgeable and talk to doc and can return calls with answers.  You went through all this don’t want to jeopardize anything.  That’s my take hope you don’t mind the cautious opinion.   I had drug intake changes made that way  before appointments.  

Marie Myers  And it is good for you!  I am guessing you will be one of the most active people there.. I felt like the youngest person at my rehab and I was 63…

Robert Miller  My cardiologist discouraged me from rehab. He told me that they slow you down and just do simple stuff and then increase it and then claim this was all because of the rehab. I guess it depends a bit on the individual but the point is, just stay active. You have to be careful the first 3 months with doing heavy work. But go for your daily walks, do breathing exercises for a week or so after surgery, use something like an elliptical (less stress on your chest than a treadmill), etc. The first few weeks are a pain but it's all for the better...

John Cook  I there might have been one person my age there but she had a lot more issues to deal with than I do.  There was one older gentlemen who looked like he had been keeping fairly active.

John Cook  Robert, what I liked about it was:
- They asked me what I had been doing post-surgery.  I told them I was walking 1.5 - 2.5 miles at a time up and down hills and I had started very short downhill interval jogs.
- They asked me what I wanted to get out of it.  I said I was running 5Ks at 4.5 mph and an RPE of 4 pre-surgery and I wanted to get back there by the end of year. I said that I also wanted to schedule a 10K run in October of next year.
 - They pushed my heart rate harder than I had been willing/able to push it myself. It was the first time I got my pulse above 110 excluding bouts of v-tach in the hospital.
- After evaluating what I was able to do during rehab and how my blood pressure reacted, they said, “You are okay to keep doing what you’ve been doing.”

Robert Miller  @John Cook, to each their own. I can see that for some people the rehab might help. What is interesting is that you couldn't get your heart rate above 110. I could easily get it to 120-130 or so. It very quickly dropped a lot after I stop doing strenuous exercises.

John Cook  J Alexander, I’m doing my rehab at Skagit Regional’s hospital in Mt. Vernon. My other option was Providence in Everett but Everett is a lot harder for me to get to.

Robert, I have difficulty getting my heart rate up because I’m on the maximum dose of Carvedilol: 50mg 2x a day. They told me some people have this problem and some don’t.

I didn’t have this problem when I was on 6mg pre-surgery, but it did take me 5 minutes of running to get my heart rate up to 120bpm.

Thomas Brusstar  Good news, John.  The most important thing for me was the point you make, namely "They pushed my heart rate harder than I had been willing/able to push it myself."   I was worried about hurting myself, and the presence of the heart rate / EKG monitor gave me the confidence that they were going to watch me, and I was able to do more than I would have.

I also found the personalities of and encouragement from the cardio nurses at the gym fun and energizing!

Melinda Donahue  You are amazing - it has only been a short time since your surgery !  I would say that is more than one step forward!.  I hope the sleeping improves - can it be totally unrelated?

Bonnie Stone-Hope  Sounds like you are doing very well in recovery.  Take your time, takes a bit before appetite returns, you will get stronger every day.

John Cook  Melinda, thank you.  If I had to guess, it was deep cleaning the house Saturday. I didn’t do anything strenuous but I did a lot. I first did the interval runs on Friday and slept fine that night.

Bonnie, thank you. My appetite finally came completely back this week.  My tastebuds are still a little off though.  Everything is a little metallic. I especially notice it when I eat something less flavorful.

Rose Madura  Slow and steady.  You may have the pain because you are pushing yourself too quickly. Just saying...

Melinda Donahue  John - I find it is about moving a body part in the wrong way - I have costochondritis and its pretty painful - look that up.  It may this - its hard to diagnose,  Mine is from walking my dog - it could be from anything.  

John Cook  I did finally figure it out.  It was stretching to reach things. I stopped doing that and the pain went away in a couple days.

Melinda Donahue  Are the meds causing your heart rate to be at 110bpm and if so why is they something that is warranted ?  So great to hear you are having a successful recovery. Wishing you continued health and back to hikes and runs asap

John Cook  Thank you for the well wishes.

The medication is limiting my maximum heart rate to around 110bpm when I exercise.  That means I’m not hiking, cycling, or running again no matter how much I heal or rehab until my meds change.

It’s a huge blow to my lifestyle. I wanted to be running 1 - 3 miles daily again by the end of the year. I wanted to train for a 10k in October 2026.

Now, I’m hoping to someday walk around the block without having to stop to catch my breath because of my medication.

Richard Munson  I wish you the best in your recovery and quest to return to your old self. The end of the year is a long ways away so i would not rush things. Honestly when i first read your post i thought it said 5 month checkup not 5 week. 5 week is nothing. Give everything time to heal. 

Marie Myers  I wonder if you are hoping for too much too soon? 5 weeks is still pretty early to want to push yourself. I understand wanting to get back to normal, but in this situation, it might be best to lower your expectations.

Rose Madura  John, I have to agree with the others. We all have different recoveries and expectations.  I was hoping to be recovered at 3 months but I was still having all kinds of complications at 3 months and even back in the hospital.  Slow and steady wins this race. You want to be the 🐢 and not the 🐇.  There will be other 10ks in the future.  5 weeks is too soon to be discouraged. Your body is still healing.  Take care.  

Susan Lynn  John - Your appetite will return.   Try to make sure you're getting iron rich foods into your diet.   We heart warriors can often have deficiencies after our time on bypass.  Quality is better than quantity for now. 

Rita Savelis  Surgery is hard on yr body. Many things go out of whack for awhile. 2 meals a day is good. Don't overthink it or force yourself. Eat what you want when you want it. Go easy on yrself. No need to worry.  

Robert Miller  I probably lost like 10lb after surgery and I liked it. It takes a while for appetite to come back but it actually changed my eating habits for the better. For me, I ate mostly fruit, some chocolate, drank soup and had some fish. And a bit of rice with chili (lime, fish sauce, vinegar, garlic, Jalapeno, Thai chili and Carolina reaper). 

John Cook  Thanks, everyone.

I’m down about 8lbs from pre-surgery but I think all of that is edema I was carrying from PsA.

I’m just used to being a guy who had difficulty staying under 2400 cal/day and now I struggle to get 1600 cal/day. But I’m also not running 1 - 3 miles a day so maybe the calorie loss isn’t as bad as I think it is.

I’ll try not to be so frustrated by it.

Susan Lynn  John - If you're worried about calorie intake, but you don't have a big appetite, you may want to treat yourself with some of the higher calorie foods we tend to avoid.   I had an insatiable craving for junk food and fruit after surgery and ate my share of both.   I lost weight before surgery,  so I needed a few extra pounds. It's not a long-term habit you want to get into, but your body is working overtime to heal and that takes energy.  Don't be so hard on yourself. You'll eat more when you're ready. 

Kate Watson  Yeah that doesn't sound terrible but boring. I just saw that you are from Camano Island! We  lived there years ago, and loved it there, but we had to move further south after my husband lost his job. We recently had to move to CA, but Camano always has a special place in my heart. 

Rose Madura  Recovery is sometimes two steps forward and one step back.  You'll have good and bad days. That's why I call it a journey. God bless you!  

Grace Mason   Don't have one either. As Marie mentions, I guess if you want someone to know if you take certain meds it might be helpful 

J Alexander Lassally  John - Welcome home. So now that all is said and done, I am curious what you thought of your UW hospital stay - the competence, staffing levels, nursing brilliance, and whether it exceeded or met your expectations. Or other. 

I'm a UW patient currently, and my personal jury is out on the institution. 

Robert Miller  I think if you had heart surgery, you will be better off than before, i.e. in less of a need for a medical alert bracelet. Unless your doctor/cardiologist thinks you should have one. But maybe then are other things that need to be addressed first. Does it hurt to have one? Besides the monthly cost and possible false alarms, no. So if you feel more comfortable with one, I guess you could get one. 

Yumiko Ishida  When I was on warfarin it was recommended, but instead of getting a physical bracelet, I set up my Medical ID on my iPhone, which allows first responders to access critical information on a locked phone. Not sure if there is an equivalent on Android.

John Cook  Thanks everyone.

J Alexander, almost everyone I saw was a nurse, tech, or orderly. I saw very few doctors and only remembered seeing my surgeon briefly once.

Techs and orderlies are there to do their job and they did it well.  I’d make small talk with them when I was feeling up to it.

As for nurses, like everything I liked some better than others.  I generally liked the night shift nurses more, but I think that’s more of a personality-type thing for me. I currently work early day shifts and worked a lot of swings as a kid.  I’d wake up in the hospital between 2am & 5am and started my days doing laps with them before shift change & breakfast.

That said, it was the nurses who I especially had difficulty with who were the ones who got me through the darkest moments of recovery and I am most grateful for.

Grace Mason   Yumiko, that is a great suggestion. Seems everyone carries a phone nowadays. My  Android does also have this option under settings ->Safety and Emergency. 
News to me, my phone can have an emergency contact and more info, but I wasn't aware of it.... until you mentioned it. I'm going to ask my kids set this up for themselves, too.
Thanks for the tip👍🏻

Valerie Allen  I know with a tissue replacement I received a card from Edwards stating the type of valve and date, contact info. I carry it in my wallet.

J Alexander Lassally  Interesting, John... Glad you had some good moments with various staff. I vividly recollect all of this, also. 

Jennifer reynolds  I am on warfarin for mechanical mitral valve  which requires a higher INR , so I have a bracelet with my name, medication and my INR range along with emergency contact.

Thomas Brusstar  I got a simple silicone bracelet saying I was on warfarin.  In case of accident, then they would know I would be prone to bleeding/ swelling etc.  I ended up only being on it for 90 days, but in case I fell out walking or whatever, better safe than sorry.  I'm happy to say I don't need it any more.

Dan Fouratt  It will take some time for the taste to come back.   I am a foodie and this was difficult period.  My first glass of wine it almost (I said almost) made me give it up. You are one up on me if you could eat your hospital food, I lived on snacks from my own supply.  Recovery is the best part.

Richard Munson  No one from the hvs site joined us for filet mignon on the grill tonight. Plus creme brûlée cheesecake for desert. Someone had to eat it i guess. 

Dan Fouratt  Richard you never gave your address, I had to settle for Salomon with a white nectarine salsa and blacken Brussels sprouts served with a light Italian red blend . 

J Alexander Lassally  Neurologic reset - You'll find many weird sensations, hot/cold sensitivity / flashing lights - all things associated with the long bypass time and process.  It passes. 

Robert Miller  I like @Richard Munsons suggestion, eat filet mignon or Kobe beef. I think Kobe beef is overrated, we just came back from Japan, visited Kobe and had Kobe beef from an accredited restaurant. Anyways, my appetite came back after a few days after surgery. But even then it took a bit of time for the full sensation/enjoyment to come back. And yes, from my recollection the food  didn't taste the same. So give it maybe a couple of weeks or so. 

  It's probably the painkillers. I was on the 'strong' painkillers after surgery which ruined my appetite. Much better now that I'm off them

John Cook  Update: my tastebuds have returned (post-op Day 12). My appetite isn’t completely back yet but at least I am enjoying all the flavors again.

Deena Z  Getting discharged and walking into your home are the two best moments of the whole episode.  Sure isn't the food.🤪. Congrats!!!   Enjoy some high protein food; a heating pad if needed on incision, and if you want to be really sure about your recovery process, most insurances will pay for home health nurse visits.

Valerie Allen  I was 9 days in the hospital too, because I was still on 1 liter of oxygen -a very small amount. Whenever they took me off my O2 level would get too low. It takes a while for the body to stabilize. But I was glad the issues were all taken care of in the hospital. Welcome to recovery!

Richard Munson  After reading these 2 posts it shows me that when newbees ask questions like how long will i be in the hospital? When will i be able to climb mt. Everest? Etc. they are impossible to answer with any certainty because every person and every surgery is different. Reminds me of the old joke after arm surgery. “ patient asks, doc, how long before i can play the violin. Doctor says maybe 2 weeks. Patient says, great i never could play it before.

John Cook  Thank you all.  I’m still doing well this morning and I’m about to do my second round of laps around the house before making lunch.

Kimberly Eisenhut  John,
Good to here from you and am glad things are moving in the right direction. One step/day at a time and you will be home and feeling better and better :)

Rose Madura  John, welcome to recovery!  It's always something and with you, the BP.  And now the BM. Hopefully you will have success soon! 👍❤️‍🩹

J Alexander Lassally  John - Glad you are through the most difficult few days. It is hard to put into words the first 48 hours, I know !  Just the fluid retention is hard to fathom. 

Scott Mills  Congrats on making progress John. I’m 3 weeks out from my Ross, so have vivid memories of where you are at, but know that it gets better. I had 18lbs of fluid to get rid of, and it finally came off about a week after I was home (in hospital for 9 days). You’re getting there :)

John Cook  Thanks everyone.  I think I’ve lost about 16lbs of water so far, 4lbs of it was pre-op edema from my arthritis.  My weight is stable now.  Still some swelling on my feet.  I’m not going home today.  They want another day to monitor my BP & creatine.

Deena Z  John, you’re through the hardest part; been there. Taking one step seemed like a gigantic deal.  One heart warrior called it the moon-step.  Know that it is amazing how much stronger you will feel in two weeks. And there is no place like home to help with that! 

Rose Madura  I'm sorry John. That's never easy.  Hopefully you'll get in soon. At least you aren't the emergency.  🙏

Valerie Allen  Being rescheduled can mess a bit with your head, but it all works out in the end. If you can find something to really engage with -a project or even Netflix series -helps.

John Cook  Thanks everyone.  I’m officially rescheduled for June 3.  It’s just tough getting everything set to be on pause for 3 months and then having to unpause it and reset it for a week later.

J Alexander Lassally  UW is known for cancelling.... the scheduler told me that herself in late 23 when I was shopping for places. Bummer. 

Susan Lynn  John - I'm sorry to hear you had to be rescheduled.   I'm sure you were disappointed,  but as Rose said,  be glad you're not the emergency. You'll just have to wait until June 3 to be our next rock star!   We'll be cheering for you!  

Marie Myers  I am sorry you have an extra problem to contend with in your preop waiting period..Wishing that the time goes by quickly for you!

Valerie Allen  Oh that’s painful to add into the mix. Best wishes on your upcoming surgery and recovery. Post when you are able!

Adam Pick  Hey John, Great idea getting that last run in.  Sounds like you are getting all the "ducks in a row" as they say. 

Fyi, you are in fantastic hands with Dr. Burke. I have been fortunate to know and work with Dr. Burke for several years. In fact, we recently filmed several videos about the Ross Procedure, which you're about to get.  Here's one of those educational videos about reinforcing the pulmonary autograft.  Hope it helps you and the other members of our community learn more about this innovation for the Ross. 

Have a great time at your dad's 80th birthday and please keep us updated! You got this!   https://www.youtube.com/watch?v=-lbJfe9JovQ

John Cook  Thanks everyone.  I’ve set myself recovery goals.  If I meet them, it’s great. If I don’t, I’m not going to let it get me down. The two post-surgery risks the doctor & nurse have expressed to me is developing pneumonia and dialing in my post-surgery blood pressure meds. One of my new concerns is they just kicked me off half my psoriatic arthritis meds and next week they are kicking me off the other half.  So, when I’m recovering from the surgery, I’m going to have all the surgical discomfort, trauma, & recovery to deal with plus all my PsA related tendinitis.  I understand why (immune suppression & bleeding).  But those first couple weeks of surgery recovery + a PsA flare is not going to be fun.

Robert Miller  Yes, the first couple of weeks are not going to be fun. After that, you might feel a lot better but don't overdo it for 2-3 months. It's hard because you think you can do anything but your body/bones can't handle it.

J Alexander Lassally  Recovery goals are great, but you can't over plan cardiac surgery recovery!  Savor the journey - lean into the recovery.... You're a planner, I can see that ! 

Valerie Allen  And do not get down on yourself if those goals kind of go out the window. Listen to your body that’s most important.

Marie Myers  Sounds like a very good plan! I would also consider wearing a mask when around people to avoid any other bugs. Try not to be too bummed out if you are postponed. From an anesthesia point of view, you would be better served being totally better than just coming off of a respiratory illness. You would have less chance of respiratory complications.

Robert Miller  If you are sick, they will bump your surgery date. It doesn't matter if you did a 5k. Though, it will most likely just be a week or two that they push you out. Unless it's an emergency, that should not be an issue. But make sure they don't push it out by months. In most cases heat conditions get worse over years but it can also be a lot quicker. 

divya gangadharan  Sorry to hear about the strep, but it is better to be safe. My own surgery was postponed by 7 weeks because of a cold, but I was happy that I went in with a good body and mind. Maybe yours will resolve in time. Good luck!

Kimberly Eisenhut  At least you know and will get better before surgery. Prayers sent today for quick recovery from strep and your surgery stays on schedule.

John Cook  They are going to do what I thought and proceed with my pre-op next week and decide on if they will delay the surgery then.

I wouldn’t be surprised if they add endocarditis testing to the blood panel that day.