Jen 's Journal

Tammy Pilcher  Hi Jen, I think I did feel mine early in my recovery when I would lay in certain positions. I'm seven months post op and It isn't as noticeable now, except when I lay on my right side. I try to just lay on my left side now or my back, which is ironic because before my surgery I could only lay on my right side in order to breathe well. Oh well, it's a good trade off to be fixed.:-)

Tammy Pilcher  Jen, I forgot to add I'm hoping as time goes by it will go away, because it has improved a lot since surgery. I hope yours gets better too!:-)

Elaine Foster  6 months out and I can feel them when I press on the incision line with my fingers. Seems to be more noticable now that all swelling is gone and healed. It doesn't hurt, just feels weird, not flat like before surgery. But my scar looks great, I am extremely happy with it.

Pat Bluemel  EEEEK, I've never pushed hard enough to feel them. I just tried and can't bring myself to do it. Out of all the things we have endured, wound care and the scar are some of my not so favorite. You posing this question, however makes me realize that a wire could be what's causing me pain at night on my side? See it's just best not to think about:-).

Tammy Pilcher  Yeah Pat, that's when I feel mine, when I lay on my right side. It just feels like something sharp...kind of a strange feeling.

Kathleen F.  My cardiologist told me I could jog after week 4. Dr. Stelzer left it up to me. Just try and keep your heart rate low and slow! Under 150 seems to be the benchmark. I was still too sore, until about week 6. Support is key! ;)

Nancy D  The cardiac rehab nurse or physiologist should be able to answer that as well based on how your heart is responding to your exercise program you are doing with them. Good luck, I hope you get to achieve the goal!

Damian Kudelka  I got the all clear and went jogging 2 miles 5 week post-op - 15min/mile so i would say turtle jog, but I'll take it!!!

Wiliam Height  I left Mt Sinai with a 45 day supply, and after that it's really your cardiologists call. While I hate the idea of taking things longer than normal, I'm fine refilling my script because the low dose 12.5mg I'm on is not really because my BP is high it's very good for our hearts post-op and protocol. I couldn't get my HR past 113 the other day and that's ok. As an aside, I really don't know how diseased valve came to be because it was never diagnosed in my youth, but I know for certain I lived a very natural holistic lifestyle at a point in my life where I didn't take many medications/antibiotics such as penicillin, and that coupled with strep could have been the reason I had valve disease. Now I take my medicine.

Meredith Bray  I took 25g metoprolol am & pm for 3 months, and 12.5 g am & pm for another 3 months. I did not notice a difference between each step. I had to work VERY hard at rehab to get my heartrate over 120. Now it's easy to do.

Pat Bluemel  I'm on 50mgs am and pm of metoprolol for three months due to Afib, they'll start stepping me down then. My HR won't go over 120 at rehab either.

Duane Beeman  I've been on 25g of metoprolol for so long I feel like it's a friend.......and i haven't even had surgery yet. I kind of hate to think about giving it up and missing out on all of those great dreams. I had a doctor tell me a few years ago that I should take it regardless of my blood pressure just to mellow me out a little......imagine that.

LaDonna Mangile  I'm taking 25mg Metoprolol daily pre-surgery to help lower my heart rate and take some pressure off my lungs. They also added 20mg Lasix. I really don't feel any different.

Virginia (Ginger) French  Jen, The short answer is usually three to six months.

This is the long answer! Metoprolol is given to nearly every patient who has had heart valve replacement or repair. The biggest two reasons it is given is to prevent the worst of the potential adverse events after surgery -- Atrial Fibrillation and Stroke. The dose can vary quite a bit. The metoprolol also helps the post-op heart in other ways. It keeps it from overworking by decreasing the heart rate and blood pressure. It also helps the heart to "remodel", a term not generally known by the lay person, but an effect that is very helpful to getting the heart back into coordination with the rest of the body systems.

I know a little bit more than the average because I have a Doctorate in Pharmacy. My blood pressure was normal before surgery and the metoprolol at 12.5 mg twice a day was dropping it lower than "normal". Because of that I was have a great deal of vertigo (which I am very susceptible to from a brain injury years ago). I was monitoring my blood pressure, heart rate, and weight on a daily basis, and my blood pressure was sometimes as low as 93/43. The vertigo killed my appetite and actually made eating very difficult.

My cardiologist looked at the log and told me that I would only be on it for 3 months, anyway. He told me I could drive and start cardiac rehab. But the vertigo was bad enough that I did not feel I could safely drive and was too unsteady to do rehab. (And my husband, who is a physician, warned me not to get started.)

A few weeks later I went in to see my Family Physician for a yearly physical and took my log with me. She gasped as she read down the listings of my blood pressure. I told her I was concerned about them. She asked what my thoughts were. I told her I thought the lower blood pressures were not allowing adequate oxygenation of my brain, and it was producing the vertigo and making it hard for me to think or to get further along in my recovery.
She agreed and asked me what I was thinking should be done. (She was aware that I had rounded for years with family practice residents and their attendings, helping them to learn more about drugs and therapeutics and the best way to use medications.) I told her I wanted to cut the dose in half. She asked if I had started yet. I don't make changes without a physician's okay. She said, Okay, it's half the dose starting with your dose tonight. I was delighted. it did mean that I am now taking 6.25g twice a day, which is only one quarter of a tablet. Within three days my blood pressure was up to normal, my vertigo was lessening, I could stand without using a cane or a wall, and I was thinking more clearly.

In Pharmacy College ages ago, we were taught that there is a right drug in the right dose given at the right frequency for different patients. And sometimes the doses need to be adjusted according to the patient's weight, depending on how it is distributed in the body. Just as we do not all have the same color of hair, our reactions to the same drug at the same dose will vary. I saw this in practice for years, and it makes me more proactive in getting medication changes made when I notice problems.

Hope this helps! But if you have further questions, fire away!

Jen Huff  Thanks everyone! Duane - I was wondering which one of my meds was causing the crazy dreams!:)
Ginger - I appreciate the in depth explanation!

Ole Bore  My cardiologist put me on a losartan for life. Since this was my second ohs,chances are I have some sort of aortic connecting tissue thing and it might help that. Every story is different and your experience may wary

Linda Whitney  This list is so helpful. Thank you Jen. You don't want to lug stuff you won't need, but these are great essentials that will enhance comfort. Appreciated!

Ginger Murphy  i think i need to write that stuff down..was planning on the wet wipes.....and normal toiletry items....(chapstick is one of my normal ones)

Ginger Murphy  im thinking just my tablet and my cell cus i dont think i can handle the weight of the puter while in the hospital......but at least i can connect to the internet from there.....

Luisa DiNardi  Jen, this is a great list! It will be so helpful to so many people. I wish someone had given me this list when I had my surgery. These are EXACTLY the things I needed at that time. :)

Damian Kudelka  Wow Jen fantastic. I'm hoping to start rehab this week so your progress is simply amazing! I take melatonin to help sleep. That should be ok, but obviously ask the doc. Which rehab?

Jen Huff  I'm starting rehab at Jersey Shore University Medical Center - it's closest to my house. Where are you going?

Ed Smith  Way to go, Jen. 2 miles is excellent. I just started cardiac rehab and, if your experience is similar, the nurses may limit your cardio workout severity during the first couple of sessions so they can monitor your activity as you move up your workout level. I've had to "push" them a bit and they're figuring out I'm in decent shape and want to challenge myself.

Ole Bore  way to go! cardiac rehab is a fun way to start pushing limits (assuming your case manager and cardiologist allows)...

Daryl McCallum  I didn't like the rehab as they didn't push me enough after 4 weeks worth I decided to do my own and I can walk 5 miles easily and I'm sure I can go further but the dog get tired....LOL. I'm 11 mothns PO

Ole Bore  Daryl - same here, I was the one always pushing the boundaries. I just expected them to tell me if I pushed to hard (which they did). Then I did the same the next day. My takeaway was that as long as I was within the parameters (HR and Systolic BP) I could push more than they wanted me to...

Ole Bore  make sure you discuss it with your case manager and get on the same page about what you want out of rehab. Once I got to my goals (I'm a runner and wanted to get back to running the entire session), I graduated... That way I felt it was a better use of my time

joni moore  Jen- yes. Day 3 and 4 in hospital I had a low grade fever and a rattling in my chest- scared me to death because all I could think of was pnuemonia. Nurses in hospital were no help so I called a good friend of mine who is an experienced cardiac nurse and she said this is NORMAL after surgery, and it usually has to do with respitory system. so keep using that incentive puffer thing every hour- it's your best friend now! My fever disappeared on day 5 and I went home that day..just hearing that that was normal put me at ease...good luck Jen!

Tammi Gunwall  Yes. Keep a watchful eye on that fever though. If it is consistent for a few days and/or goes above 101 degrees I HIGHLY recommend calling your surgeon's office. I had a low grade fever for almost a week before I called and it ended up I had pericardial effusion (fluid around my heart) and Pericarditis (inflammation of the pericardium -or sack that surrounds the heart). It got me back in the hospital and it can be severe/painful if it goes too long). Not trying to freak you out. Fevers can be normal, but just be watchful and pay attention to how you're feeling. If you start to notice a little bit more shortness of breath or chest discomfort don't chalk it up to thinking you may just be over doing things. Have it checked!

Jen Huff  Thanks all! Tammy - I read your blog and appreciate it! I am actually going to my cardiologist tomorrow which is only 1 week after surgery and only 3 days after discharge but better early than late!:) I can always go see him a few weeks later too. I follow up with my surgeon on 3/31.

Bill Hendrickson  Tammi
Your experience was on my mind as I was in the step down unit as I had a slight elevation in temp. We kept close tabs on the temp which diminished after 3 days. Your advice was excellent. Thanks for posting your story.

Pat Bluemel  Hey Jen. I got them a couple times on week one and two and my mind went wild. Tylenol knocked them out but I remember well that feeling of panic. I told my cardio about it and they were non plussed. Tammi gives great advice though. If they go too high of for too long get checked.

Jen Huff  Thanks all! The highest mine got was yesterday at 100.4 but that was day 5 post op so it may be normal. Tylenol took it down and today it's been 99.2 max. I go to my cardiologist tomorrow which will hopefully calm my nerves :)

Mary Myers  I found a big body pillow helped. I actually did sleep a lot in my recliner. I used pillows around me in that too. Good luck ! Try taking a nap in your recliner and see if that works! Wishing you a speedy recovery and better sleep.
Hugs

LaDonna Mangile  I'm glad this discussion has been posted. I was wondering what supplies I will need at home and if I should be able to perform my ADL's myself when I go hone first couple weeks as I have no family that can take off work to care for me or should I request some type of HH help.

Judi Nunez  Ladonna I can't imagine not doing this without my husbands help. I am 2 weeks out of hospital and still could not do this on my own. I think you need to set up help.

Jen Huff  LaDonna- I have only been home less than a day but see if you can get a recliner and a tv table for pills/water etc. Also, it's hard to get into and out of bed so the pillows will help. Maybe a home nurse would be good if available. I'm lucky that my parents and husband are here this week and my mom will be here next week as well. You will do great! Best wishes!

Ed Smith  Jen, I don't own a recliner, but have rented one for 2 months. I found it excellent for napping and could have slept in it, if needed. Many of our brothers & sisters on this site have reported they slept in the recliner for varying lengths of time.
LoDonna, I would definitely be sure your Surgeon of Cardiologist write orders or a prescription for a Home Health Nurse. Without my wife, I would have had a very difficult time for the first two weeks. You may also wish to hire a helper to supplement the HH Nurse.

Damian Kudelka  Pillows are certainly unique. I try sleeping on my chair and couch. On the couch and bed I bought a special elevated pillow/inclined pillow with additional pillows on top of that pillow. Sleeping has been tricky. Being elevated is important.

Terrie Syvertsen  Hello Rob. Thanks for the update to the community!
Very glad to hear that Jen s in recovery and that her healing can begin. Let her know we are all going to continue to think, pray, send well wishes to her and the rest of you(her family and friends). Take care and tell her to take it real easy!

David Brunkhorst  Jen, I know what you mean when you say you feel fine. I walked/jogged 3 miles the morning of my mechanical valve surgery. But like you, I knew I needed it.

Virginia (Ginger) French  Praying for you along with many others and know you will do just fine, Jen! Gorgeous picture, but the way! Prayers that it's a smooth trip on this part of the journey. Hugs!

Wiliam Height  From one Jersey shore resident to another, you are in a good place in great hands--you will do fine! Positive thoughts sent!

Lisa Repp  I am sending you positive thoughts, and hopefully my success ahead of you will give you strength. My surgery is on February 24th, and I am determined to be the model for success, even if I am feeling sorry for myself today...lol

Peter Woglom  Dr. Stelzer is the best. A few days after my Ross, a couple of my cardiologist's fellows came down with me for some tests they were running. One was reading through the chart and remarked to the other that he had never seen such attention detail in a surgical report before. The other said something to the effect that Dr. Stelzer was no ordinary surgeon...

Bob M  I pray that your surgery and recovery will be uneventful. Friday will be a new day with a fixed heart. God bless and rise up!

Damian Kudelka  Hi Jen.

First big tip is sleep deprived and you need to train staff to be thoughtful and kind. Have someone to be you comfort and sleep advocate! Also get on pain meds ASAP

Surgically you are in great hands.

Ole Bore  UWMC put me on a high-protein diet right away, even from my selection from their cafeteria. I would look into your options there. Otherwise, I really, truly, enjoy a good smoothie with loads of protein powder. I get the one that Vitamix sells at Costco and it worked well to get it down.

Although, my favorite meal post surgery was a milkshake with protein from the cafeteria. Had it with every meal and whenever I could get my hands on it.

Kathleen F.  Hi Jen, I had the Ross Procedure with Dr. Stelzer at Mount Sinai a little over 6 weeks ago. You're right about lack of appetite; I had very little appetite at first, but the nurses had Nepro shakes available in their refrigerator at all hours, which was great - if you didn't have an appetite for dinner, but found yourself hungry at 5 AM, you don't have to wait until breakfast arrived. And I believe all the rooms have mini-refrigerators if you prefer your own drinks. Let me know if I can help in any way. I just read your journal and my story is very similar to yours. I also had no restrictions, and had run 6 miles the morning of my routine cardiologist appointment, where I had the echo showing that my condition had progressed to severe. In fact, I had also run 18 miles just 4 days before, training for the Chicago marathon. I had no idea my gradient was so high or my valve was so small. I've decided to take a hiatus from distance running and instead plan to run the 5Ks and 5 milers down the shore this summer, including the Asbury Park 5K in August! Hope to see you there!

Jen Huff  Kathleen- thanks so much for writing! Are you glad you chose the Ross Procedure? I debated getting a tissue valve but decided the Ross would be my best chance of not needing more surgeries. How is your recovery going?

Kathleen F.  I am glad I chose the Ross, and hopefully will not need surgery again. But I really have no idea; there is a very small percentage of people who may need reoperation following the Ross and we really don't know what's in store for us. But I felt that I made the best decision I could, and I hope it works out. So far, it has. By all accounts my recovery is going great and I have not had any issues at all. I was taken off all meds at the one-month mark, and don't even need painkillers. I tried to jog on a treadmill last week, but found the jarring motion hurt my chest too much - the tissue itself, not my incision or heart! I was still too sore. But I tried again today and it felt fine! I am actually pretty excited about it. I was ridiculously slow and alternated running/ walking, but I don't care! I can see progress, and know I'll be back to normal soon. I am patient. In a way, you might be lucky you didn't have too much time to worry before your surgery, or lose fitness, since you've continued to exercise. Hopefully your recovery will go just as smoothly!

Jen Huff  Thanks Kathleen! I'm glad you are getting back to normal - I know it's going to be so important to be patient with myself. How is your incision healing? I worried about the length of the incision initially but I have realized it's more important that everything is fixed!

Kathleen F.  Yes be patient with yourself, and let yourself feel the emotions and the physical changes as they happen. Everyone heals at their own pace but we all cross the same finish line. Regarding the incision, I don't want anything I post here to be taken and shared on Facebook, LinkedIn and Twitter (as Adam had shared Cristen's great incision photos), but I can tell you it's actually only 4 1/2 inches long (I just measured it - I had thought it was closer to 6!), and is discreetly placed along the left breast line. A friend told me it looks like cleavage. Dr. Stelzer did an amazing job; I didn't expect to be impressed with it but I am. It's healed quickly and is starting to fade already. I'm somewhat proud of what it represents, honestly - it takes courage to go through this. My email is y2kfay@aol.com if you ever want to communicate offline, too.

Amy DiGiovanni Noack  Kathleen, you are doing so great! How is your sleep going? I'm an insomnia these days! Did this happen to you after surgery?
Jen, I had ensure at the hospital...it was provided and you won't always have an appetite when they come around with the food so a replacement is a good idea to keep your energy up. Now that I'm home I'm back on my isagenix shakes once a day.

Kathleen F.  Sleep isn't consistent for me. It's better now that I can turn on my side and get into a comfortable position, but sometimes I still wake up a lot, and there are nights where I'm sore - back, chest, shoulders, legs, you name it. But I have no trouble falling asleep right away, and much earlier than I used to, especially since I haven't napped during the day in a while. For the months leading up to surgery, I was barely sleeping at all; I was too preoccupied and worried.

Janet R  Hi Jen, I normally drink a lot of protein shakes, however, since my surgery 2 weeks ago, I am now on warfarin and have to be careful of vitamin K intake and omega 3 goodness. My nurse instructed me to stay clear of all the supplements While I am on Warfain for the next 3 months. I have noticed that a lot of my proteins drinks have vitamin K. However, I have found Muscle Milk to have no vitamin K and is 20 grams protein so that is now my drink for awhile. They say that protein helps in the healing process too. Best wishes to you and your recovery.

Amy DiGiovanni Noack  Jen, I read your story and I just had the Ross done in Toronto by Dr. Tirone David. I'm on the path to recovery as the surgery was Feb. 2, 2015. If you have any questions do not hesitate to reach out....I was naturally scared for such a big surgery and I'm just starting to come out of the pain med fog, but I'm so happy I did it now and I'm on the other side. You will be in great hands and it will get easier;)

Emily Shively  Hey Jen! I was asymptomatic as well when I was told I needed surgery. It makes it tougher to accept that surgery is necessary when you feel great! So I definitely understand how you feel right now. Waiting was the worst part for me, so I'm glad your surgery date is close. I am 3 weeks post-op today, so if you have any questions feel free to ask!

Patricia Garcia  Beautiful wedding picture Jen. Two weeks will go by quickly and this will be a distant memory and you can move passed this.