Hi friends,
I am a little over three months now since my OHS. I am working out again with weights and back to work. Has anybody had the "dizzy" feeling after ...Read more
Hi friends,
I am a little over three months now since my OHS. I am working out again with weights and back to work. Has anybody had the "dizzy" feeling after either working out or working hard and getting a sweat going? not sure this makes sense. But, after a full day of manual labor at work I got extremely light headed for a few hours. Never happened to me pre-OHS. Just curious if any of you have had the same experience? I am sure a lot of this is "normal" post OHS.
Marie Myers it might be something as simple as low BP due to dehydration. Any way you can check your blood pressu ... Read more
Marie Myers it might be something as simple as low BP due to dehydration. Any way you can check your blood pressure during one of these episodes? Also have you mentioned this to your cardiologist or PCP?
Mike Roskowinski I agree with Marie. Usually it has to do with dehydration. Make sure you are drinking lots of water ... Read more
Mike Roskowinski I agree with Marie. Usually it has to do with dehydration. Make sure you are drinking lots of water
Susan Lynn Exercising also results in vasodilation that will drop your blood pressure pretty significantly. I ... Read more
Susan Lynn Exercising also results in vasodilation that will drop your blood pressure pretty significantly. I felt lightheaded just standing until I stopped taking a small dose of metoprolol. If you didn't go to cardiac rehab, you might want to consider it. You will have your bp checked periodically after increased levels of exertion. I found it very helpful to understand how sensitive bp levels can be. Wishing you all the best!
Barbara Wood I'm thinking dehydration too, especially if you're on metoprolol...Gatorade works like a charm:)!
Rob Scilingo Thank you all so much. We make sure we hydrate all day at work and home. However, the low BP might ... Read more
Rob Scilingo Thank you all so much. We make sure we hydrate all day at work and home. However, the low BP might be the key. I am still on the Beta Blockers so the low bp could be the culprit. I am going to call the cardiologist this week. I like to "ping" these things off all of you just to get a reality check of what the "norm" is after OHS. So, THANK you all for responding. I can't tell you how much I appreciate all of you.
Rob Scilingo Oh- and I was never offered cardiac rehab and when I asked, they said I did not need it. Hmmmmmmmm!
Susan Lynn Rob - I was also told I didn't need it. I'm not sure how they made that assessment, but I enrolled a ... Read more
Susan Lynn Rob - I was also told I didn't need it. I'm not sure how they made that assessment, but I enrolled and still go to the extended class twice a week.
Chris Calhoun I only get that when I bend over for a little bit of an extended time - say 30 seconds - then light h ... Read more
Chris Calhoun I only get that when I bend over for a little bit of an extended time - say 30 seconds - then light headed
Hi all! So, another weird recovery episode. I woke up middle of the night two nights ago (around 2am), and had the worse pain around my heart and chest area ...Read more
Hi all! So, another weird recovery episode. I woke up middle of the night two nights ago (around 2am), and had the worse pain around my heart and chest area going through to my shoulder and partially down my arm. It only hurt when I would inhale and exhale (so all the time :) ). Anyway, got up in the morning and same thing. I called my Cardiologist and he got on the phone right away (we are kind of the rockstars of the hospital when it comes to getting great service). He said sounded like inflammation from the surgery and to take Tylenol and Advil to help with the pain and reduce the inflammation.
Long story short, have any of you had this happen weeks, months after the surgery? I am 8 weeks out and am doing great. This scared the poop out of me. Once I noticed relief after a few hours of taking the advil and tylenol I did feel better and my nerves calmed down. I go to work full time in November and have a really physical job. I am worried about all of these little things (weird things) that pop up surgery that they don't tell you about. Which I don't blame them, they can't possibly tell you EVERYTHING that might happen. It would sound like the disclaimer at the end of a Viagra commercial :)
Have a great day my friends...
Rob
Lena Afanaseva Believe it or not but 8 weeks still not enough to feel 💯. Be patient and try not to panic, you sti ... Read more
Lena Afanaseva Believe it or not but 8 weeks still not enough to feel 💯. Be patient and try not to panic, you still healing. It maybe simple muscle pain. Wishing you a speedy recovery!
tim miller I'm almost 10 weeks out and still not completely 100%
Tracy Fallu I had similar symptoms, pericarditis. As always though, make sure to follow your cardiologist instruc ... Read more
Tracy Fallu I had similar symptoms, pericarditis. As always though, make sure to follow your cardiologist instructions.
Tammy Pilcher Yes, I had the same thing 3 months after my surgery. After two days of the same symptoms you’ve de ... Read more
Tammy Pilcher Yes, I had the same thing 3 months after my surgery. After two days of the same symptoms you’ve described, I went to the ER on a Sunday night. Mine was also inflammation. On the previous Friday I had pulled myself up into my son’s truck using one arm (not smart). They said that could have also caused it. I took extra strength Tylenol and was fine in a few days. I’m 5 years post op the end of this month and doing great. Wishing you the best! God bless!
Rose Madura Inflammation is very common after OHS. I had an episode 3 months after my surgery.
Deborah Moody Rob, I posted on here in In Aug, had my surgery 8/22. This was my 2nd Open Heart Surgery in 2yrs. 1st ... Read more
Deborah Moody Rob, I posted on here in In Aug, had my surgery 8/22. This was my 2nd Open Heart Surgery in 2yrs. 1st one, I had my aortic and Mitral
valve replaced. This time it was an aortic aneurysm. I’m 60 and this 2nd surgery and recovery has been more difficult for me. Don’t know why. Well, getting to the point I’m 6wks. post op. and I developed pain like yours . It’s very painful and scary. I’m so glad that I saw your post I feel better knowing I’m not the only one. Keep us posted, mine just started about 10 days ago. Hope it stops soon. Thanks for sharing your story.
Nicole DuPont Good news you got it under control. At 10 weeks, I’m ok to work, but I still wake up with sternum p ... Read more
Nicole DuPont Good news you got it under control. At 10 weeks, I’m ok to work, but I still wake up with sternum pain (and not sleeping well). I’m trying not to be impatient with the process!
Hello all, I am wondering if any of you after 7 weeks still had a lot of soreness in the rib area where they wired us back up and also in the shoulders and ...Read more
Hello all, I am wondering if any of you after 7 weeks still had a lot of soreness in the rib area where they wired us back up and also in the shoulders and back. For some reason, in the last week I started getting really sore all day. I am sure it is also because I am upping my activities according to my Cardiologist.
Thanks to all for the continued support. I appreciate and think of you all daily- especially for those about to go into surgery.
Cheers,
Rob
Thomas Brusstar 7 weeks! That's still early, my friend. Of course it will still hurt, as your activity increases. ... Read more
Thomas Brusstar 7 weeks! That's still early, my friend. Of course it will still hurt, as your activity increases. Don't worry about it at all! I used occasional tylenol at that point, when I had been more active, or just slept on it funny or whatever.
Mike Roskowinski Hey Rob it takes a long time to get it back to 100%. I am 5 months out of surgery and still sometimes ... Read more
Mike Roskowinski Hey Rob it takes a long time to get it back to 100%. I am 5 months out of surgery and still sometimes get some depending on what I do. I like to weight train so those are the days I get a little sore. About 13 weeks it will be fully healed and you should feel a lot better
Nicole DuPont This past week at almost 9 weeks I have been more sore and the nerves have been hurting more, but I d ... Read more
Nicole DuPont This past week at almost 9 weeks I have been more sore and the nerves have been hurting more, but I decided it was probably because I’m just more active as the days go by. I’m home from work today to rest because I haven’t been sleeping well either because of the pain, but overall I think it’s because it’s all still healing.
tim miller I’m a few days past 8 weeks and depending on what I do or how I sleep it will hurt a little.
Rob Scilingo Thanks you guys. It really helps to hear your stories.
Sheila Gray In Nov I will be one year and i still have pain . I was told it takes some people years and some just ... Read more
Sheila Gray In Nov I will be one year and i still have pain . I was told it takes some people years and some just months ,,,
Deepak Khanka Yes Rob back near the shoulder blades plus the ribs . I still feel ribs abit after 10 weeks. How is y ... Read more
Deepak Khanka Yes Rob back near the shoulder blades plus the ribs . I still feel ribs abit after 10 weeks. How is your heart pounding situation ?
Rob Scilingo Hi Deepak, the heart pounding does not seem to be an issue. Right after the surgery, I had what felt ... Read more
Rob Scilingo Hi Deepak, the heart pounding does not seem to be an issue. Right after the surgery, I had what felt like the "super heart beat" in which it was so strong it felt like my whole body was moving when it beat. But, it seems to have returned to normal. I think we are ultra sensitive to the ribs, heart, shoulders and back after OHS.
Hello My Dear Friends,
OK- So one month check in. I will do a video later this weekend and post it up on this site and youtube. Last week at three weeks ...Read more
Hello My Dear Friends,
OK- So one month check in. I will do a video later this weekend and post it up on this site and youtube. Last week at three weeks I had to go in and see the Cardiologist and Surgeon due to the fact that my darn incision is infected. Just the top part of the incision is infected. So, I am on antibiotics for the time being. In all honesty, it is not that bad just more of a pain to take the meds 4 times a day. The pleural effusion is still in my lungs. In actuality, I don't even feel any different with it in there. They said from the x-rays it is just a small amount of fluid. Huge milestone, the doctor said I can drive at 4 weeks. How liberating it was to get behind the wheel. And, at the same time, how scary to think that one bad move and my chest could be in serious jeopardy from an accident. Need less to say, I drove very slow and cautious. I say this all the time, but, THANK YOU to all of the folks on this website. You people have helped guide me through this journey.
Stay tuned for an updated video coming soon. I hope you all like them.
Cheers,
Rob
Rose Madura Congratulations on your one month anniversary.
Yeah, I had a similar thing going on with my incision. It was fine for the first few weeks, but then it opened up and started draining. They put me on some antibiotics (Bactrim) for 10 days, and I had to use lots of Neosporin and change the wound dressing twice a day.
It wasn't that bad, but it was just a constant physical reminder of the fact that I had had heart surgery. My incision appears to be all closed up and healing well now, so that's a relief.
My surgeon told me I could drive at 4 weeks as well, but I did NOT feel up to it yet. Everything I did with my arms, it seems like I could feel it (sometimes painfully) in my sternum, so the idea of getting behind the wheel did not appeal to me at all at that point. At 6 weeks, I felt much better about it.
Deepak Khanka Rob, My last echo cardio which was done in 6 weeks showed some PE in my lungs . The cardiologist said ... Read more
Deepak Khanka Rob, My last echo cardio which was done in 6 weeks showed some PE in my lungs . The cardiologist said it will go away . I started to do more of the inhaling exercise using a spirometer. What is your ejection fraction for your heart ?
Joy Vera Being released to drive was a big step. You've described it well - liberating. Congratulations on t ... Read more
Joy Vera Being released to drive was a big step. You've described it well - liberating. Congratulations on that & on your one month anniversary, Rob!
Susan Lynn Congrats on your 4 week milestone. I look forward to your video. Continued success with your recov ... Read more
Susan Lynn Congrats on your 4 week milestone. I look forward to your video. Continued success with your recovery!
Hello my friends,
I am 21 days post op and feeling good. I definitely have good days and bad days. Sometimes the bad days are really bad and sometimes ...Read more
Hello my friends,
I am 21 days post op and feeling good. I definitely have good days and bad days. Sometimes the bad days are really bad and sometimes I just have a hint of an edge to me. I get some weird phantom pains near and around my chest incision. Today, after my nap, I was getting really intense sharp pains to the right of my incision. It was relieved by some short walking. All in all, I am feeling better each day. Small victories to be had. I have to still go in this week and get another chest x-ray to see how the fluid in my chest is doing - I can hear it crackling when I breath right when I get up. So, I am pretty sure it still there. I am getting a ton of exercise so I am entirely not sure how I will get rid of this fluid. In any case, just wanted to give an update. Sleep is going well although I hate sleeping on my back and will try my right side soon. Cheers to all of you and thanks for the support. I will continue to post and keep you all updated. It is therapeutic for me as well.
Marie Myers Sounds like you are doing pretty well! Hoping your chest x-ray looks good. They may give you some diu ... Read more
Marie Myers Sounds like you are doing pretty well! Hoping your chest x-ray looks good. They may give you some diuretics to help remove fluid. And I agree, writing this stuff down and telling your story does help you to process and recover from the controlled-trauma that is open heart surgery.
Joy Vera Rob, sounds like your recovery is coming along. As Marie said, diuretics are likely to help. With m ... Read more
Joy Vera Rob, sounds like your recovery is coming along. As Marie said, diuretics are likely to help. With my first surgery in 2010 I think I went home before I stopped draining sufficiently & wound up with fluid accumulation in my lung area. There is a procedure to take care of that (thorocentisis) where the fluid is drained & it turned out I needed a couple of those. Better if the diuretics do the job, of course. I'm with you concerning back sleeping & it was a wonderful day when I got the OK from my surgeon to sleep on my side. Take care.
Diane Maher Rob, at my 6 week x ray and cardiology check, my cardiologist told me that the X-ray was still showin ... Read more
Diane Maher Rob, at my 6 week x ray and cardiology check, my cardiologist told me that the X-ray was still showing some fluid build up and because he and my surgeon were extremely reluctant to put me back on diuretics again, he recommended doing deep breathing exercises throughout the day which thankfully worked without any further intervention.
Barbara Wood It sounds like a pleural effusion, I had a couple of those after surgery too, lasix did the trick. I ... Read more
Barbara Wood It sounds like a pleural effusion, I had a couple of those after surgery too, lasix did the trick. I started just the tiniest bit of side sleeping about 2 weeks after surgery - got one of those big body pillows & turned just a little bit towards my side using it as a prop. A little more each nite & after a week was side sleeping - sweet relief:)! Happy healing to you Rob!
Joe Tarango Good morning, I am on day 15 post op. I did the same as Barbara and have started inching towards side ... Read more
Joe Tarango Good morning, I am on day 15 post op. I did the same as Barbara and have started inching towards side sleeping a little each night. I use my heart pillow to hug/brace my chest and it seems to help. I can almost get 6-8 hrs sleep doing this. Good job on the exercise everyday and happy healing!
Rob Scilingo I just wanted to say thank you all of responding and really taking the time to respond. All of your ... Read more
Rob Scilingo I just wanted to say thank you all of responding and really taking the time to respond. All of your information is so helpful. I just love this community.
Finally got my video to update and load so I will share it with you. Got home yesterday and was a little rough (long drive for us from the hospital and i FELT ...Read more
Finally got my video to update and load so I will share it with you. Got home yesterday and was a little rough (long drive for us from the hospital and i FELT every bump).
So QUESTION- I have a little fluid in my lungs and continue to have a low grade fever at nights only. Has anyone else had this problem that could share?
Enjoy the video.... I was a little LOOPY.
https://www.youtube.com/watch?v=Y1PJM51slKc
Deborah Moody I’m so happy to hear that you’re home.
When I had my 1st OHS in 2017, aorta and mitral valves re ... Read more
Deborah Moody I’m so happy to hear that you’re home.
When I had my 1st OHS in 2017, aorta and mitral valves replaced. I did have fluid on my lungs and it was drained during my hospital stay.
I appreciate that you are posting your experience. On 8/22 I will be back in for a aortic aneurysm. Very scared because I know what expect. I’m going to record my post surgery experience like you are, I don’t remember much at all. So this will be helpful. I hope you feel better and stronger every day!
Rob Scilingo Awww! Thanks Deborah. I really feel like I did not see much on YouTube and want other people to see ... Read more
Rob Scilingo Awww! Thanks Deborah. I really feel like I did not see much on YouTube and want other people to see what happens through the experience. I have a bunch of pics coming soon as well as soon as my wife send them to me.
Rose Madura Did you get instructions on what to do if you got a fever. Mhh surgery was over w years ago but I re ... Read more
Rose Madura Did you get instructions on what to do if you got a fever. Mhh surgery was over w years ago but I remember ha ing to take mg temperature every day for quite a while. Infections are sometimes accompanied by a fever. I had pleural effusion as well which was drained. It was my fourth readmission to the hospital. I'm very symptomatic. I'd check with the cardiologist office regarding the fever.
Thomas Brusstar Thanks for taking the time to make this. The practical things like managing nurse care are helpful t ... Read more
Thomas Brusstar Thanks for taking the time to make this. The practical things like managing nurse care are helpful to hear. You do have to pay attention, and you’re lucky if you have a family member to pay attention also. My nurses were good, but you have to tell them what you need.
Mike Roskowinski Awesome Rob. This was a great idea to create these. I found a few videos before my surgery to see h ... Read more
Mike Roskowinski Awesome Rob. This was a great idea to create these. I found a few videos before my surgery to see how it went. I hope someone finds them as useful as I did. Glad to see you are home
Doing awesome everybody. They were able to spare my valve and just replaced the root. That is excellent news. I spent one full night in CICU and am in a ...Read more
Doing awesome everybody. They were able to spare my valve and just replaced the root. That is excellent news. I spent one full night in CICU and am in a regular room since yesterday. Breathing tube was pulled out four hours after surgery. Neck catheter was pulled on Saturday and arm catheter as well. The blood work looks great, sugar level look good, oxygen looks good and then I got the chest tubes got pulled out. Overall I feel pretty good. Can' t keep focus for too long, get a little sick to my stomach after some meals, not a ton of appetite, in a little pain. Anyway, i pushed myself today on day three and am feeling kind of poopy tonight. I need to rest tonight and will post a video hopefully tomorrow.
Rob Scilingo Appologies for mistakes in this post- I am on some decent amount of pain meds tonight.
Marie Myers Excellent progress! I am impressed you can post so soon!
Susan Lynn Great news, Rob! Welcome to recovery! Sounds like you're well on your way to feeling better!
Joey Hardee Awesome report Rob! Glad you are up and about so soon. What a blessing they could repair the valve. I ... Read more
Joey Hardee Awesome report Rob! Glad you are up and about so soon. What a blessing they could repair the valve. I had hoped for that but no dice. Happy for you though! Listen to your body and rest enough. Cardiac rehab will be here before you know it.
Joy Vera Good news on the valve & on your progress, Rob. The lack of appetite & focus are pretty much what mo ... Read more
Joy Vera Good news on the valve & on your progress, Rob. The lack of appetite & focus are pretty much what most of us experience, I think. It should improve with time. Take care.
Frank DeGrazia Rob sounds like great progress. Forget the apologies, your posting on Day 3! Nice work!
Just had my angiogram yesterday and all my arteries looked great. So, as of now, I am going in on Friday to just have the aortic root replaced. I am in good ...Read more
Just had my angiogram yesterday and all my arteries looked great. So, as of now, I am going in on Friday to just have the aortic root replaced. I am in good spirits today. Spent the day with my wife and nieces and nephews yesterday after the angiogram and had a great day. Sleep is a little tough as my mind races but once I am asleep I am usually good. Two days and counting.
Susan Lynn Congrats on the clean arteries, Rob! Continued success going into your procedure on Friday! You're ... Read more
Susan Lynn Congrats on the clean arteries, Rob! Continued success going into your procedure on Friday! You're going to be posting your post-op update before you know it! ❤
Peter Eglinton Hang in there! You got this. Soon you'll be on the recovery side.
Ron Weaver Hi Rob. I’ll be sending healing thoughts your way tomorrow.
Lise Bowles Rob, you will do great! I’ll be thinking of you!
I am just curious why my surgery is not popping up on "upcoming patient surgeries"? It is this Friday, August 9th.
Susan Lynn Rob - from my phone, I don't see you on the list. I only see the next two scheduled surgeries. Howe ... Read more
Susan Lynn Rob - from my phone, I don't see you on the list. I only see the next two scheduled surgeries. However, from my laptop, the upcoming surgeries of the next five "heart warriors", including you, are displayed. I think it's just a mobile programming limitation. You're definitely #4 of those listed this week.
Surgery is on Friday. So yesterday I went to have a CT-Scan with dye follow through. I am allergic to the dye so I had to prep with Prednisone. The nurse ...Read more
Surgery is on Friday. So yesterday I went to have a CT-Scan with dye follow through. I am allergic to the dye so I had to prep with Prednisone. The nurse did not put the IV needle in correctly so when they started the dye contrast all fo the dye went into my arm creating a huge bubble in my arm. My whole arm swelled up and the doctor could not get a good view of my arteries. So now on Tuesday I have to go for a coronary angiogram so that my surgery date does not get pushed out. So bummed cause this should have been good to go now I have to jump through a couple of extra hoops. Just frustrating. Sorry for the rant.
Tim Saint Sorry to hear about your set back. Would be very frustrating this close to life changing surgery. Hop ... Read more
Tim Saint Sorry to hear about your set back. Would be very frustrating this close to life changing surgery. Hope the angio goes smoothly and you get the all clear so you can put this speed hump behind you and get on with your life with renewed vigour. All the best Rob.
Marie Myers Very frustrating indeed! Hope everything gets done properly next time, and that surgery does not get ... Read more
Marie Myers Very frustrating indeed! Hope everything gets done properly next time, and that surgery does not get delayed.
Susan Lynn Very justifiably frustrated! Sorry you had to go through that. Victory is yours on Friday, Rob! St ... Read more
Susan Lynn Very justifiably frustrated! Sorry you had to go through that. Victory is yours on Friday, Rob! Stay positive! ❤
Rose Madura This mist be very frustrating and emotional as well. Hope thing go smoothly from here on out.
Barbara Wood Very frustrating! Hoping no more bumps...and no need to apologize for a rant - a good rant is good fo ... Read more
Barbara Wood Very frustrating! Hoping no more bumps...and no need to apologize for a rant - a good rant is good for the soul !
Joy Vera A rant is appropriate, Rob. Here's to a successful heart cath & smooth surgery!
Rob Scilingo Thanks everybody for the kind words.. I really appreciate it. I will keep you all posted after the a ... Read more
Rob Scilingo Thanks everybody for the kind words.. I really appreciate it. I will keep you all posted after the angio. Friday the 9th is still a go as of now.
Ron Weaver So sorry about your CT scan experience. I hope your arm gets better fast. Sending good thoughts your ... Read more
Ron Weaver So sorry about your CT scan experience. I hope your arm gets better fast. Sending good thoughts your way.
The official two week countdown is on. I met with the anesthesiologists yesterday and spent 4 hours with staff going over all of the pre-op stuff. Kaiser ...Read more
The official two week countdown is on. I met with the anesthesiologists yesterday and spent 4 hours with staff going over all of the pre-op stuff. Kaiser San Francisco has been great so far. I was put a lot more at ease after talking with the RN, PA and Anesthesiologist. I was very fortunate that the anesthesiologist had a great sense of humor, he really put me at ease. Still super scared but by addressing all of the things I am worried about yesterday, the staff calmed with logical answers and statistics.
Susan Lynn Rob - You'll go through every emotion in the next two weeks, but with the confidence you have in your ... Read more
Susan Lynn Rob - You'll go through every emotion in the next two weeks, but with the confidence you have in your team, you'll be ready to put it behind you on game day. Stay positive! ❤
Rob Scilingo Thanks so much Susan. I must say that I always feel like something heavy is on my mind even when I a ... Read more
Rob Scilingo Thanks so much Susan. I must say that I always feel like something heavy is on my mind even when I am not thinking about it. I am going to keep super busy for the next 12 days.
Jennifer Hunter Very best of luck to you Rob! Im not far behind you!
Had a pretty rough week dealing with the fact that my surgery date is scheduled for August 9th. On one hand I am relieved to have a date and get this thing ...Read more
Had a pretty rough week dealing with the fact that my surgery date is scheduled for August 9th. On one hand I am relieved to have a date and get this thing done. On the other hand, I am a mess emotionally dealing with the reality of this whole thing- sad, mad, terrified. Anyway, I posted another video should you want to tune in- I will keep doing this all the way through my surgery and recovery and everything leading up to the big day. Cheers and hope all are well:
https://www.youtube.com/watch?v=5iNma3Qg4Ks
Week after getting my surgery date and the emotional roller coaster.
Adam Collins I know that feeling. Once I got the date, everything started feeling a whole lot more real.
Jeff Baker I remember when I had 30+ days until surgery, now it's 17. Each day creeps a little closer "sigh."
Ruth Rehak Rob, you are not alone with this. I am 5 days post surgery. What really helped me with listening to g ... Read more
Ruth Rehak Rob, you are not alone with this. I am 5 days post surgery. What really helped me with listening to guided imagery. Check out Belleruth Naparstek and heer Succeessful Surgery that you can download. Itheelped me a lot. Best wishes!
Kirk Bepler Rob, I know exactly what your going through. It's a bumpy road but you just have to know you will get ... Read more
Kirk Bepler Rob, I know exactly what your going through. It's a bumpy road but you just have to know you will get through it and on the road to recovery..
Willie Radl The wait and the unknown is definitely a stressful time. It's totally normal to be feeling depressed ... Read more
Willie Radl The wait and the unknown is definitely a stressful time. It's totally normal to be feeling depressed but I will say that surgery date sure seemed to come and go quickly. You'll be back to normal before you know it.
Rob Scilingo I am so thankful to have found this site to help me with this journey. Reading all of your stories, ... Read more
Rob Scilingo I am so thankful to have found this site to help me with this journey. Reading all of your stories, seeing all the support is absolutely priceless. Thanks to all of you folks for being there and offering words of encouragement and support. Love you all.
Susan Lynn Rob - All your emotions are very normal! The tests and surgery are tolerable. The folks who have ... Read more
Susan Lynn Rob - All your emotions are very normal! The tests and surgery are tolerable. The folks who have had mini and full sternotomies will also tell you that it wasn't nearly as painful as they anticipated. You can do this! Better days are ahead! ❤
Frank DeGrazia Rob,
I feel, as many on this site seem to agree, that, some of the worst times of an aortic aneurysm ... Read more
Frank DeGrazia Rob,
I feel, as many on this site seem to agree, that, some of the worst times of an aortic aneurysm/bicuspid valve replacement, is the anxiety of the wait. All the "what ifs" start to weigh you down. I used the time to put myself (chest area; abdomen) in the best shape I possibly could be in to improve vascularization to expedite post Op recovery. It also gave me the impression that I had 'control of something' during the ordeal. I also set goals for myself 2 weeks, 4 weeks, 6 weeks out to think 'past' the actual procedure. Pretty simplistic, but it's working well for me. Just my '2 cents'
Rob Scilingo I have been running Frank- until I re-injured my calf. But, my job is pretty physical so that keeps ... Read more
Rob Scilingo I have been running Frank- until I re-injured my calf. But, my job is pretty physical so that keeps the body in shape. I love the idea of setting goals and will do that this weekend. Thanks for the positive MOJO. Keep your 2 cents coming- I really appreciate it.
I just received my surgery date. I am going in on August 9th. Scared but relieved at the same time. I am glad it is so soon and I don't have to wait months ...Read more
I just received my surgery date. I am going in on August 9th. Scared but relieved at the same time. I am glad it is so soon and I don't have to wait months letting that swirl around in my head.
Rob Sparling Exactly.... you can do it, Rob! Waiting is by far the most tortuous part.
Nicole DuPont Try to stick with being relieved. This is what you need to do to get fixed, and you will be fine.
Lena Afanaseva Waiting is the worst! You will be absolutely fine! Trust your doctor! They know what to do!
Joy Vera Getting a date is a big step forward. Best wishes on your surgery & recovery!
Hi All, thanks to Rose Reed, she pointed out that my title of the video I posted was very hard to find since it was not specific enough. So, I re-titled it ...Read more
Hi All, thanks to Rose Reed, she pointed out that my title of the video I posted was very hard to find since it was not specific enough. So, I re-titled it and will post it again. Hopefully more folks will be able to find it now:
https://www.youtube.com/watch?v=bQZXZtotnd0
My journey dealing with an Ascending Aortic Aneurysm- Part 1
Kathy Turner Good job on the video. Where are you having surgery? I chose Stanford, live in Paso Robles. Good l ... Read more
Kathy Turner Good job on the video. Where are you having surgery? I chose Stanford, live in Paso Robles. Good luck.
Rob Scilingo Hi Kathy, I am having my surgery at Kaiser San Francisco. That is who I have my insurance through. ... Read more
Rob Scilingo Hi Kathy, I am having my surgery at Kaiser San Francisco. That is who I have my insurance through. I just got my date today. Good luck on your surgery. I am super scared.
Ron Weaver Hi Rob. I have a 4.7cm ascending aortic aneurysm and a bicuspid aortic valve. I also have kaiser insu ... Read more
Ron Weaver Hi Rob. I have a 4.7cm ascending aortic aneurysm and a bicuspid aortic valve. I also have kaiser insurance. I met with Dr Sheikh at Kaiser San Francisco and he wants to wait until my aneurysm reaches 5.5cm before having surgery. I would love for you to share your experience with me. I hope the surgeon is good. It’s hard researching Kaiser doctors. Will you have to have a full sternotomy? Or can the do a minimally invasive approach? Dr Sheikh said I would need a full sternotomy. I liked your video. Thanks for making it. I will be following you progress and sending good thoughts your way. My email is weaveron@me.com if you want to contact me. Thanks.
Rob Scilingo HI Ron, I will email you this weekend (it has been a rough week emotionally). But in regards to the s ... Read more
Rob Scilingo HI Ron, I will email you this weekend (it has been a rough week emotionally). But in regards to the sternotomy, I get the full enchilada. Kaiser has been awesome. My wife's father was a very well known surgeon and she approves of my surgeon from Kaiser. His name is JEREMIAH GEOFFREY ALLEN MD
. Did his time at John Hopkins which is the best. He is also a local boy from Santa Cruz. Kind of serious guy which is what you would hope for when finding a surgeon to cut you wide open. You can look him up on Docfind on the Kaiser website. Again, I will write you a lot more detail this weekend.
I am starting to record my journey via Youtube should anybody want to check it out:
https://youtu.be/bQZXZtotnd0
I just feel it will be therapeutic for ...Read more
I am starting to record my journey via Youtube should anybody want to check it out:
https://youtu.be/bQZXZtotnd0
I just feel it will be therapeutic for me to do this and hopefully helpful to others. I hope to post weekly up until the surgery and then asked my wife to film throughout the process in the hospital.
Much love for finding this amazing community on Heartvalvesurgery.com
My journey dealing with an Ascending Aortic Aneurysm- Part 1
Susan Lynn Thanks for sharing your story. I look forward to the next installment. 👍
Rob Scilingo Thanks for watching Susan. I will continue to update through the whole process.
Nicole DuPont Thanks for sharing via video! Super cool idea. By the way, I’m also 51 and grew up in Los Gatos. I ... Read more
Nicole DuPont Thanks for sharing via video! Super cool idea. By the way, I’m also 51 and grew up in Los Gatos. I live in Reno now and surgery will be here at the end of next week. I look forward to following your story!
Carlos Banuelos Great idea posting a video. I didn’t know about genetic testing for aortic aneurysms - interesting ... Read more
Carlos Banuelos Great idea posting a video. I didn’t know about genetic testing for aortic aneurysms - interesting. Thanks!
Rob Scilingo Hi Nicole, did you go to Los Gatos High? My cousins the Brothers went there. I work for Mid Pen Ope ... Read more
Rob Scilingo Hi Nicole, did you go to Los Gatos High? My cousins the Brothers went there. I work for Mid Pen Open Space- not sure if you ever visited our Preserves. Thanks for watching the video. I wanted to make sure people can search the internet and find people like us. I had about a month and a half before I found this site just going deeper and deeper to the abyss of the dark web :)
Rob Scilingo Hi Carlos, that was one of the first things they made me do so that I could alert my family member (b ... Read more
Rob Scilingo Hi Carlos, that was one of the first things they made me do so that I could alert my family member (brother and sister) and children that they need to get it checked out as well. Apparently it is passed down quite a bit. My sister goes to get her CT-Scan next week and it will be very interesting to see if she has it. I am going to wait a while before I alarm my kids (18 and 15- The doc said no reason to freak them out now, wait till they are in mid 20s when they can process it better.
Rose Madura Interesting video and story. I had my ascending aorta replaced with the dacron sleeve when am had mg ... Read more
Rose Madura Interesting video and story. I had my ascending aorta replaced with the dacron sleeve when am had mg aortic valve replaced. Mine measured t.4 I believe. My husband took videos of me after the surgery starting with day 1. Jn had complications and was in the hospital for 24 total days and four readmissions but we didn't take 24 video's! It's a great idea because sometimes wkkll look at them and are then so thankful to God for bringing us through the journey. Best wishes for the surgery. Being a runner will help your recovery,
Nicole DuPont I also searched YouTube before I found this site, so I’m sure others will benefit from your videos ... Read more
Nicole DuPont I also searched YouTube before I found this site, so I’m sure others will benefit from your videos in the future, so it’s nice of you to do it. I’m from East Los Gatos (Belgatos) and went to Leigh HS. Love the trails in the LG area!
Gregory Ballard Keep running! Stay in shape. I was in great shape going into OHS #5. When I checked into pre-op th ... Read more
Gregory Ballard Keep running! Stay in shape. I was in great shape going into OHS #5. When I checked into pre-op the morning of my surgery they asked me how much Oxygen I was on at home and if I used a walker. I told them I walked from my rented apartment across the street from hospital and up the stairs to surgery and had not been on any oxygen. They were shocked as my pressures were off the charts. My recovery was much easier than previous surgeries as I was in great shape going into this surgery. Crossfit type workouts 3-4 days a week up until about a week before surgery. Good luck I will be following your journey.
Hello All! I met with my surgeon today. We both decided it was time to move forward with the surgery. I feel like I am in good hands with him. The office ...Read more
Hello All! I met with my surgeon today. We both decided it was time to move forward with the surgery. I feel like I am in good hands with him. The office is calling me on Monday to set up the actual surgery date and we are targeting the first week of August. I feel a little more at ease and definitely in a better mood afterwards. I will keep you all posted. I do believe things are going to move pretty fast in the next few weeks with all the pre-tests- which is a good thing. The less I have time to worry about the better I will feel.
Nicole DuPont Excellent attitude! My surgery is in 2 weeks. At first, I was overwhelmed with fear, but now after de ... Read more
Nicole DuPont Excellent attitude! My surgery is in 2 weeks. At first, I was overwhelmed with fear, but now after dealing with more symptoms, I can’t wait for surgery. All those going before us and sharing their experiences has been so helpful to see recovery in action. All the best to you and your surgery.
Mike Roskowinski Hey fellow heart warriors. You both will do great. The waiting is the longest and hardest part. Once ... Read more
Mike Roskowinski Hey fellow heart warriors. You both will do great. The waiting is the longest and hardest part. Once you get on the recovery side it is great. I am 10 weeks into recovery and feeling great. Time has gone by so fast since the surgery and feel back to normal.
Joy Vera It definitely helps to meet with the surgeon, at least that was the case for me. August will be here ... Read more
Joy Vera It definitely helps to meet with the surgeon, at least that was the case for me. August will be here before you know it & you'll be on the recovery side. Best to you!
Rose Madura I too felt so much better after meeting the surgeon. The mental part and waiting can be difficult. ... Read more
Rose Madura I too felt so much better after meeting the surgeon. The mental part and waiting can be difficult. Seems like you have a good handle on it. Please keep us posted.
Nervous but also glad to be getting my appointment with the surgeon tomorrow.
Joy Vera Welcome, Rob. I know I felt better once I met with my surgeon & the next steps were firmed up some. ... Read more
Joy Vera Welcome, Rob. I know I felt better once I met with my surgeon & the next steps were firmed up some. I hope you do too & I wish you the best. As others have said, you are in the right place.
Rose Madura Yes I felt so much better after meeting with my surgeon. Be sure to write down your questions and br ... Read more
Rose Madura Yes I felt so much better after meeting with my surgeon. Be sure to write down your questions and bring the list with you. It will help you to remember everything.
Marie Myers Can really sympathize with you. I was so nervous meeting my surgeon, that my BP was 188/85. Hoping yo ... Read more
Marie Myers Can really sympathize with you. I was so nervous meeting my surgeon, that my BP was 188/85. Hoping you get your questions answered!
Dan Baltazor After sitting down with my surgeon, I felt a little more at ease. Hope the same for you today,
Been a pretty rough go the past few months. In May 2019, my doctor called me out of the blue and said that they were reviewing my CT Scan from 2017 (I still ...Read more
Been a pretty rough go the past few months. In May 2019, my doctor called me out of the blue and said that they were reviewing my CT Scan from 2017 (I still have no idea why they caught this two years later). He said the CT-Scan did not have a dye contrast with it but looked like my Ascending Aortic was around 4.5cm. I then went for a Echocardiogram and it measured around 4.9cm and then finally had a CT scan with dye contrast and it showed that it was actually 5cm. This was all in a matter of months. I have been a mess mentally since I found out. I am now scheduled to meet with the surgeon this week to get a date figured out in the next few months. I have an extremely strenuous job and really can't worry about this everyday I go into work. They also put a lifetime ban in my file (from my doctor) that I cannot lift anything over 50lbs at work and I am on a decent dose of beta blockers which totally mellows me out (I also am a runner and I hate the way it has brought down my runs). Anyway, I will keep you all posted. Thanks for letting me vent.
Susan Lynn Rob - Welcome! You've come to the right place! There are many folks who have had aortic aneurysms ... Read more
Susan Lynn Rob - Welcome! You've come to the right place! There are many folks who have had aortic aneurysms and have had successful outcomes. I'm sure they'll share their experiences and ease your mind. We've all been where you are with our respective diagnoses, but you'll get through it. We'll help you. Hang in there and ask all the questions you like. You'll be surprised at the expertise on this site! ❤
Shannon Gray Thinking of you... And I understand so much of what you shared. It was a shock and even now There are ... Read more
Shannon Gray Thinking of you... And I understand so much of what you shared. It was a shock and even now There are restrictions that I have to live with for the rest of my life. It takes time to adapt to a new normal and accept all that has been placed before you... and you’re just at the beginning. Give it time. You found a wonderful resource with this site... ask any questions you may have and know that you’ll be greatly supported. Wishes for an easeful journey.
Rob Sparling Rob, take stock in the fact they caught this! It is good news! We are here for you! Read our journ ... Read more
Rob Sparling Rob, take stock in the fact they caught this! It is good news! We are here for you! Read our journals and you will see you are in good company! There are people here who live long lives after significant (and multiple!) surgeries! Welcome to the beginning of a successful journey and it starts with transformation! ❤️💪
Rob, My doctors caught an aortic aneurysm of 8.6 CM. I had surgery on June 5 and currently feel abso ... Read more
Rob, My doctors caught an aortic aneurysm of 8.6 CM. I had surgery on June 5 and currently feel absolutely fantastic - back at work 4 weeks later. You should be very happy that they caught it!!!!! The right hospital / surgeons have operated on thousands of these. Keep your head up and stay positive. You got this!
Mike Roskowinski Welcome Rob...I agree with all these folks here. Thank god that they found it and you can get it fix ... Read more
Mike Roskowinski Welcome Rob...I agree with all these folks here. Thank god that they found it and you can get it fixed. Read my story but I found out I had a 5.3 aortic aneurysm in February with a monocuspid valve. Had surgery in May. At least you know you can have your life back. Do you know why they put you on a permanent weight restriction? I am only on a 12 week restriction for my sternum and incision to heal. The waiting is the hardest part of the entire process. We are all here for you and all of us have our stories. Good luck you got this
Rob Scilingo Thank you all so much. I really am glad that I found all of you. Can someone tell me how to access ... Read more
Rob Scilingo Thank you all so much. I really am glad that I found all of you. Can someone tell me how to access the information on Ascending Aortic Aneurysms on this forum.
Does anybody else feel super sluggish taking the beta blockers? I swear I was on a tractor today discing fire breaks for our Nature Preserves (work) and was just lethargic all day.
I can't tell you how appreciative I am to be able to share my feelings with folks that have gone through this. I keep trying to articulate to my wife but I just don't know if she really gets the anxiety I have over this. I meet with the surgeon on Friday since I was told if I had the surgery, all weight restrictions would be lifted and I would not have to take the beta blockers anymore.
Again, thank you all.
Rob Scilingo One last question. I have had sharp chest pains near my hear months before I was diagnosed with this ... Read more
Rob Scilingo One last question. I have had sharp chest pains near my hear months before I was diagnosed with this . They were getting more and more severe after diagnosed (I am sure this could be psychological). However, when I told my cardiologist, he simply shrugged it off to the type of work I do and it must be muscle issue. Here is the strange part, when I increased my dosage of beta blockers, it has all seemed to go away for the most part- I still get sharp pains occasionally but nothing like before.
Marie Myers A lot of people complain of feeling sluggish/dull on beta blockers. You can speak to your doc about t ... Read more
Marie Myers A lot of people complain of feeling sluggish/dull on beta blockers. You can speak to your doc about this is to see if any changes in dose or drug type can help. You may just get used to it over time also. I have been on a 12.5 mg dose of metoprolol since my surgery 2 1/2 years ago. Luckily, I have no side effects from it.
As far as learning about aneurysms, there might be info on that under the “Learning Center” tab at the top of the page. As far as the sharp pains go, you did the right thing by speaking to your doc. I would be more concerned if the pains were accompanied by other symptoms like shortness of breath or palpitations. Always good to ask your doc if you have any concerns or questions. Wishing you a smooth trip!
Paul Wright I'm at 5 months after aortic valve replacement. Still having aches and pains most of the time where t ... Read more
Paul Wright I'm at 5 months after aortic valve replacement. Still having aches and pains most of the time where they wired me back up. Dr. does not seem to be concerned but not getting many answers. I'm going to a chiropractor as well. Any advice? Thanks up front!