Chris K posted a note for Eric that says:
Eric: What a relief--but better safe than sorry--in spite of the stress you went through! Glad it all turned out well for you.
Marcela posted a note for Eric that says:
Praying for your prompt recovery Eric, we'll miss you at school, but hopefully not for long and you be back soon enough! Take care and positive thoughts!
Brian Walsh posted a note for Eric that says:
Thanks for the post! I've had that problem since my surgery, never buckled over in pain to the point you describe, but still never got any diagnosis. It all prior cases mine has gone away within a week, only causing me the chest, shoulder pain and shortness of breath you describe. Good to hear your cardiologist is taken care to watch over you and get to the bottom of it. I'm going on 2 weeks now with mild pain in the chest and shoulder which increases at night, while I've been putting off going to the doctor for it, I think based on what you have written it may be worth a trip. Thank you again for the update!
I am sorry to hear that you are having similar symptoms as I have been having. Thank you for the response especially since it lets me know I am ... Read more
I am sorry to hear that you are having similar symptoms as I have been having. Thank you for the response especially since it lets me know I am not alone with this experience. I would highly suggest going to the doctor so they can help provide you some relief. I have found it odd how I have read multiple self-reports describing the increase in symptoms and intensity at night yet non of the doctors I have spoken with appear to find that bit of information relevant. Most doctors only want to hear th 'rub' when they listen to your heart. My heart has given yet to 'rub' for an audience.
Good luck to you as your head to the doctor. I am sure this is just a hurdle on our path to full recovery.
Eric
On July 23, 2014...
Julia Hsu posted a note for Eric that says:
Eric,
It's scary to be suddenly so sick & have no answers. Does this have to do with your OHS? It seems like the surgery is so long ago. Or does it have to w/ your recent bacteria infection? Good luck in getting an answer, better yet a treatment to relieve your pain.
Thank you for your response and encouragement, it is greatly appreciated! To answer your questions, while this is not directly caused by my OHS, ... Read more
Thank you for your response and encouragement, it is greatly appreciated! To answer your questions, while this is not directly caused by my OHS, it is the OHS that has put me at risk for this. It is all about risk benefit analysis and I would rather have had OHS and being alive today instead of not having OHS which means I would not have the concern I have today.
It is important that as valve surgery patients we are not only away of the side effects that may be cause directly by our OHS, but also the long term complications that we now have increased risk to encounter even outside the 'medically defined' window of association.
In my case, my cardiologist is working very hard to better understand my symptoms and the cause of my symptoms. This I am very thankful for and appreciate that my doctor not only wants to treat my condition, but also wants to understand it to a point he may be able to provide guidance on how to prevent future occurrences.
I am not looking to assign blame for the symptoms I have been enduring, but I am highly disappointed with how the medical centers have gone about their treatment and explanation of my symptoms (other than my cardiologist).
On February 14, 2014...
Steve and Aida Bond posted a note for Eric that says:
Congratulations Eric!
Your story has been quite inspiring! I just had my one year anniversary. I have to say it's been one challenging year but glad the worst is behind me. Please keep us posted.
Carol Jackson posted a note for Eric that says:
I remember following your surgery last year and taking notes. Congrats on your marriage. Isn't it wonderful to be on the other side of surgery....and for you a whole year! I made it through my surgery on Oct. 8 of this year for repairing an anuerysm and Dr. deciding not to do anything with my bicuspid valve. It's amazing how much better I feel. Again congrats to you and your bride!
Love, posted a note for Eric that says:
Dear Eric,
I also cannot believe that your surgery was a little over a year ago now. I look at where we were then, and where we are now, and it is black and white. Yet, at the same time, I feel that we worked as a team and for the most part handled every hurdle well.
I love you with all my heart and can't wait to say, "I do!"
Chris K posted a note for Eric that says:
Congratulations--on your successful recovery and on your upcoming marriage. It is nice to know how well you are doing one year after.
We already have snow here in Vancouver, so it should be great for your nuptials in Whistler and your snowboarding event in Feb at Mt. Baker.
Thinking of you and your father. What a strange feeling it must be to be in the waiting room! Praying for a smooth recovery! Stay strong and keep those ice chips close!
Holly P
I did fine leaving the house. I think I was just ready to get everything over with already. It was much harder for my family to leave for the hospital. ... Read more
I did fine leaving the house. I think I was just ready to get everything over with already. It was much harder for my family to leave for the hospital. I was also distracted by my dog who was being dropped off for surgery also. I was more worried for him than for myself (he is recovering well also), at that point in time.
Hang in there, use the nerves to motivate and energize yourself as if you were facing an athletic challenge. I have you in my thoughts and know you will be recovering soon.
Eric Rovin
On January 17, 2013...
Hi Eric,
Glad to hear everything is going well in your recovery. Like you, my blood pressure and heart rate dropped significantly after surgery, but I've never gotten an answer as to why. My blood pressure was always on the low side of normal before surgery, but now it is super low.....last week I took it one day and it was 87/38. I took it again, thinking maybe the machine didn't read it right, and it was even lower the second time....86/34. My heart rate used to be around 60-65, and now it is usually around 50, or a lot lower on days when my arrhythmias are bad. I don't understand what would cause everything to drop after surgery. The only answer I got from my cardiologist was that my heart had "remolded" itself, but that doesn't really explain the physiology of it. Please let me know if your doctor has explained it to you.
Good luck with rehab. I'm sure you will enjoy it. I LOVED it. It felt so good to be using my body again....it's a real boost both mentally and physically, and the rehab people are great. It was very informative, worthwhile and reassuring.
Take care,
Deb Ziegler
Eric,
Thanks man for all the great info. I appreciate everything you write to me. I am looking forward to getting this behind myself and my family.
Alex Vigil
Thank you! I miss seeing everyone and hopefully I will be able to return soon :)
Eric
On January 9, 2013...
Eric,
I am glad to hear all is well. I continue to follow you as are age and interests are similar. Are you able to do most of the things you need and want to do without fatigue? Also why have you not started rehab I thought this started as early as week 3? Do you have an estimate on getting yourself back to work? Thank you you have been a great help. I am just about 10 days away from AVR at Duke, this week has been rough with nerves and we are super busy in the OR. All and any advice is well appreciated.
Alex Vigil
I am glad you are following me and asking questions. I would agree that we have many similarities which may make our journey similar.
Are you able to do most of the things you need and want to do without fatigue? - At about week 3 I was able to do most things I wanted to do without fatigue with the exception of anything that involved lifted, pulling, or pushing over 10 lbs. Sometimes I would forget I was not supposed to lift any weight, but the moment I try I feel my chest hurt and I will stop instantly. Let me clarify 'fatigue' you from my own experience. The first couple weeks I was genuinely tired plus my lung capacty (ability to exhale) was limited. Talking on the phone or talking for extended periods of time became laborious and reminded me of the asthma attacks I had as a child. Once I stopped talking and would remember to breath in through my mouth nose and out through my mouth I would recover. At some point in time, fatigue took on a new mean that was unfamiliar to me. My brain was energized and so were my muscles, but my heart would get tired which was felt through a change in breathing. My breathing would become more labored as if I ran a mile. After week two, I felt comfortable caring for myself and being alone for most of the day. During the first couple weeks, you will most likely find getting dressed and showering to be very tiring especially if there is a lot of steam in the shower to inhibit your breathing. I just gave myself a lot of extra time to get ready. I would say the hardest and most uncomfortable part of my day was going from a seated position to standing and the standing to sitting transitions. This still gives me some discomfort, but it is much better.
Also why have you not started rehab I thought this started as early as week 3? -According to my cardiologist, I need to wait until the sternum is about 80% healed which is weeks 4-6 before he will prescribe cardio rehab. As you will learn, everything comes down to when you have appointments with the doctors since they want to see test results before they prescribe and you also have to have the appointment for them to write the script and do an in person exam. Some doctors make this process easier than others.
Do you have an estimate on getting yourself back to work? - I will be at week 5.5 when I go back to work. This decision is based on your releasing doctor, your profession, your progress and when you have appointments. I have selected a cardiologist that is very thorough and has a conservative approach. I do not like doctors that do anything I ask just to keep me as a client. Rather, I prefer doctors that will discuss issues with me and tell me their true opinion. I talked to him about going back to work and he took the decision very seriously. He was upfront and said if he releases me to go back to work just because I feel good and then something happens, he would be liable to both my employer and me. He would prefer to wait until my sterum is 80% healed before I go back for safety reasons also. I happen to have an appointment to see him on January 16th which should be right around when he will release me assuming the x-rays and other tests come back clear. My cardiologist is of the mind that I should recover over the first 4-6 weeks with minimal stress.
On the other hand, my uncle had a four way bypass a decade or more ago and he went back to work four days after surgery. He continues to have heart problems to this day. I can't say it was because he went back to work right away, but it is a possibility along with family genetics. I also mentally felt like I could go back to work in the moment, but in hindsight I am glad I have had the time to recover.
Advice- Different things work for different people. I used a lot of self-imagery, learning, and talking to others to calm my nerves. I found the more I shared and talked to people around me, the more normal my brain felt things were. The other turning point for my nerves was when I decided I read as much as I could and it was time to focus on my recovery. As an athlete, I went into training mode and viewed my recovery as training. In fact, if you look back in my posts you will see I referred to post-op days as training days just after surgery. I started mentally prepping myself for the recover which is something I felt would be under my control. I fully believe you should not worry about things you cannot control. In my case, I would sleep through the surgery which meant it was out of my control. On the other hand, I did have some control over my recovery so I switched my mental efforts to that phase. I know, this is easier said than done. If you talked to people aounf me before surgery they would probably say I was still nervouse, but ready.
For my recovery, we made sure the house was accessible post-op. In fact, I would go around the house envisioning myself in a wheelchair (thankfully I never needed one) and reorganized things so I could be independent and mobile. In addition, I made sure we had a recliner out for me to sleep in plus I had purchased a wedge system from Relax the Back that was ready to be put on the bed to replicate the benefits of a recliner. I used the recliner to sleep for 3 nights and then was able to sleep in bed using the wedge system for the next 7 nights. After that I was able to sleep on my back without extra pillows except for one under my knees. I think by the end of week two I could partially sleep on my sides.
My incisions has always been a source of discomfort. I found that wearing a t-shirt under everything helped the most. I think I was lucky to have a mini stern which I believe has made a huge difference in my recovery. Had they split the whole stern I think things would be a lot less comfortable.
Number one piece of advice!!! Do not let the pain get ahead of you. Do not be a hero and limit your pain med intake (unless you have previously been addicted). I had an IV with pain killer medicine in it that I had control over using a button. I was allowed to hit the button every 6 minutes for a dosage. I was told I hit that button every 6 minutes and then some and even used it to express my feelings towards people by lifting it in front of their face and hitting the button if they caused discomfort. Eventually I took oral pain meds and then they were discontinued last week. When I stopped taking them I had one night it was hard to sleep and then everything went back to normal. Of course you know your own history with pain meds better than I do so this is something you would need to discuss with your doctor and self.
I am roting for you and look forward to reading your entries as you go through this experience. Keep asking questions even after your surgery as I am sure there are things I have already forgotten or just have not included.
Eric Rovin
On January 9, 2013...
Hi, Eric. I am glad that you are staying well. I am looking forward to your return and hope that it is soon.I'll call you soon. Karen :)
my name is mike eisenberg you have a great abilty to write. i had the Ross procidure on 12/19/12 and am about to return to work on monday. how all goies well for you
Eric,
I have a couple more questions. I was contacted by Dr Roselli today on my BAV, his nurse talked to me about him wanting to do a repair/ David Procedure,is this what you had? She said Dr Roselli would only be able to do this through open sternotomy, you had mini stern? Just wanted to know what the surgeons at CCF talked with you about before you decided on there. Glad to hear how we'll you are doing.
Alex Vigil
It sounds like Dr. Roselli has decided that your aorta needs repair and that is why he is talking about the 'David Procedure'. In my case, I did ... Read more
It sounds like Dr. Roselli has decided that your aorta needs repair and that is why he is talking about the 'David Procedure'. In my case, I did not need anything done to my aorta so they just repaired my aortic valve via a mini stern. In my discussions with the CCF surgeon, I was told that if the aorta needed repair they may do a full stern depending on the location of the aorta repair. The mini stern does not allow much of a visual for the surgeons.
As far as what the surgeons talked about with me was kind of open ended. They listed a number of possible ways to fix my BAVD and told me the type of incision each would require. I was told they always attempt a repair first, but there was only a 30% chance this would be the solution. If that did not work, then they would give a tissue valve. Both of those had 85% chance of being mini stern. If my aorta needed repair then there was a higher chance if an open stern. They would not promise one over the other, but the did promise no mechanical valve since I did not want it.
I found it helpful to ask how many mini sterns a doctor has done and what the hospital preference was. Some surgeons will tell you they only do open sterns.
Hope this helps,
Eric Rovin
On December 31, 2012...
Eric,
Congratulations on your engagement! I haven't sneezed yet, but I did have a cough while in an awkward position that took my breath away and caused my back to spasm for a day and a half. Almost felt like I had dislocated my esophagus, if that is even possible!
Happy New Year and here's to our continued recoveries!
No doubt the sneezes are the worst and they always sneak up on you. If you don't have the pillow I find just putting my hands with light pressure on the incision helps a little bit. Most of the time I can't get to my pillow fast enought when those darn sneezes come up.
hi Eric. first thing great job getting through surgery and ICU. I am 16 months post AVR at UCLA and have some good things to share with you. I love snowboarding too. I skiied from age 12 and switched to snowboarding at 45 when my son started at 4. I am 58 now
I go 10-15 days a year mostly lake Tahoe. Last few years before my surgery it was somewhat uncomfortable bending over adjusting my bindings. No real problem with the cardio though just out of breath feelings when bending over that would recover quickly when I stop and breathe. I also did a martial art with submission grappling that made me out of breath when someone was on top of me. ( some may say that sounds normal but it wasn't for me). You know,your body and that's why you took your drs advice and investigated and ultimately had heart surgery. Surprisingly many people don't
So the surgery. My main post surgical prob was shoulder and back pain. It's because they separate your ribs and the best treatment is an adjustment but you cant do that for a few months. I used ice and tylenol worked well. If I could I would have gotten Accupuncture. I started walking outside as soon as I could and started the cardio rehab program at UCLA about 3 months post surgery
Now for the good news. By jan I was able to board at Tahoe for a week no problem. ( thats 5 months post surg) I live at sea level and Tahoe is about 7k feet and no problem. I am still chasing my son but that's no suprise. He is 18 and very fast. Rides an Arbor board. I have a Neideker
2 weeks ago we were at Breckenridge Co. Much higher. Base altitude 10k and it was a chore breathing. Probably difficult for many but the key is to listen to your body and know when to rest and when to push. We rode 9 days and although the temps were in the teens there was 2 feet of new snow while we were there. My dingers and toes got cold quick and that may be related to my condition or it may be it was just too damn cold.
Hoping to hit Tahoe in march or April. I took up yoga and strongly recomend it to you. There are things I got from that which even help me getting into my bindings with less discomfort. I'll share that with you some other time.
. Being 20 years younger than me will help you but I doubt you will be riding in 2 months. The chest is still to fragile. You don't want to fall on it. Your dr won't allow it. I couldn't even drive for 2 months. But before you know it you will be 6 months then a year and looking back on your experience and saying everything just happened like it was supposed to and that's why I have achieved such great results. Take care and stay in touch. Jeff
Great to hear from a fellow snow rider. It helps when others understand my passion for the mountains and strong desire to get back on my board. ... Read more
Great to hear from a fellow snow rider. It helps when others understand my passion for the mountains and strong desire to get back on my board. It must be a great feeling to be able to ride with your son again. We are about to book a trip to Whistler at the end of March to make up for the one we were supposed to go on today. Even of I can't ride by then, then are a lot of other things to do at the resort. I am doing my best to be a good patient and listen to the doctors since I want to recover the right way and minimize any risks.
Eric
On December 24, 2012...
Eric
What an account of your experience. Since my surgery is not scheduled until March I still sometimes feel like this all a mistake and its not going to happen. I will look back at your story when my time comes so I can be prepared. Continue to work hard with your recovery and have a Merry Christmas! I'll continue to check on your progress.
Chuck
I think you hit it right on the nose! This is what I am calling a double invisible disability. I cannot see the issue and I did not feel a direct ... Read more
I think you hit it right on the nose! This is what I am calling a double invisible disability. I cannot see the issue and I did not feel a direct symptom like heart pain yet diagnostic tests tell me I had a major issue with my heart. Now, I feel the same way on the other side. I have an incision, but I did not see the repair happen. Like you, sometimes I think it never happened or did not exist in the first place. I guess this is the brains way of protecting itself.
The hardest part for me was waiting for the surgery to happen. My thoughts are with you and I will be following your progress. I found it very helpful to refer to this site throughout the process.
Eric
On December 23, 2012...
Eric, my pre-surgery experience at CC was great. I had Reiki before. All my family was there. A prep nurse held my hand the whole way up from pre-op and while the anesthesiologist talked to me. I stares at the sign that said "through these portals pass the world's best surgeons and their teams", and prayed it was true. Then I was in and it was over. Discharge was great too, they actually kept me a few extra days because I needed blood. I was worried to go home and lost it the 1st day, but it was to be expected. Not that things can't be improved, but overall I thanked them for there efforts on that survey! You will b OK! I promise!
Eric,
I'm so glad that everything is coming along fine. Excited for you and your engagement. I love your notes and comments. Keep healing.
Love and sweet thoughts. Happy Holidays
Mona
Thank you! It truly helps to know you are thinking of me as I go through this experience.
Eric
On December 23, 2012...
I would have loved to have my surgical team introduced to me and the procedure explained. What an excellent thing to experience. I didn't even see my surgeon before surgery. The pre-op area was like a bunch of cattle going to slaughter. I never even got to say a proper good-bye to my husband and really had no idea what was going on.
I woke up and began vomiting as soon as the breathing tube was moved. It was not pleasant and the ICU nurse was not comforting. I wished I had someone with me the first night.
I enjoyed reading your recollection. I can't believe you remembered nurses names!
I was impressed that I remembered the names of the ICU nurses also. Going into this, I purposely tried to make this a personal experience and it ... Read more
I was impressed that I remembered the names of the ICU nurses also. Going into this, I purposely tried to make this a personal experience and it was my job to bring happiness to those around me which would then keep me happy. I remember thinking that I wanted a personal connection with each person that worked with me since I did not want to be just one of the 3000 AVR patients they would see this year. This was a value passed on to me by my grandmother.
I can definitely relate to some of your experience. Pre-op should be a place that you are supported. When this does not happen, a hospital really needs to rethink their priorities since we know your mindset going into surgery has a significant impact on your outcome and recovery.
Eric
On December 23, 2012...
Eric,
Great to read your stories. I am scheduled for AVR on 01/22/13 at Duke medical center. I tried to get into CCF but have not had any reply yet. I was told that Dr Gillinov was not available due to him having back surgery. I wanted to know what was the test done to tell if you needed your aorta worked on. Was your aorta dilated if so what size? My aorta is 3.7. Did you get a mini sternotomy or full open? Any help in these subjects great to know.
Alex Vigil
I am sorry Dr. Gillnov is not available for your surgery. The test they ran was a chest MRA/MRI with contrast. It was done at a local hospital and ... Read more
I am sorry Dr. Gillnov is not available for your surgery. The test they ran was a chest MRA/MRI with contrast. It was done at a local hospital and the CD with images was sent to CCF. I actually do not know my measurement, but I am dilated. Each facility has their own measurement guidelines and I did not meet criteria for CCF. I was told that if I did, I would have had an aorta plasty rather than have forgein material placed inside my aorta. I ended up with a mini sternotomy which is exactly what I wanted. I am very please with Dr. McCurry who was my surgeon. Good luck and let me know if you have any other questions.
On December 20, 2012...
Hi Eric, I too had valve surgery at CC. I have mitral value repair/ and a double bi-pass with Dr. Gillinov. I am 42 and in great health so the bi-pass was a total surprise, but feel great now - my surgery was last Oct. Congrats so much on the engagement, the step-down care is fabulous there, so I am sure the nurses were awesome support for you in all ways. You will be feeling better in no time! Congrats and a healthy new year to both of you!
Congratulations. My son also has bicuspid valve and had valve repair two years ago and he lives in Chicago! He proposed right after being diagnosed. Lots of similarities. Continue to get well.
Eric: First, congratulations on your engagement! From what you have shared about your relationship I have thought what an amazing journey the two of you have already had together and now going through this life altering experience together will only make your future that much stronger.
A second congratulations on your discharge! But just remember, begin dischared is not a ticket to snowboarding! Take it easy and realize that just being home and doing some of the little things for yourself will be enough to start. Happy Holidays!
Eric - I was just heartbroken to read about your isolation in that hallway before going into surgery. It took a lot of courage on your part to "bare your soul" and share that experience with all of us. I think being there for 5-10 minutes alone is unconscionable. To leave you alone for 20 minutes, contemplating your worst fears is, in my book, emotionally abusive. Even a "Candy Striper" with no medical training could have been there to pat your arm and chat about your dogs, snowboarding or the weather - just to offer companionship and keep you distracted from anxious thoughts. I agree with Deb Z that you should definitely share this experience on your final questionnaire. On a positive note, have a safe trip home and a wonderful Christmas with Justine and your family and friends. Stay warm, Judy Claxton
Eric,
I had the EXACT same experience as you before surgery at CCF. It was awful! They took me to "the hall" outside the OR at 6:15 a.m and left me there by myself until 6:55. I was so scared, nervous and cold that I started hyperventilating. One of the OR nurses finally came out and brought me a blanket and stayed with me until they took me in. I also asked for something to relax me, but they said I would get something as soon as they wheeled me in. The guy who stayed with me was very nice, but I kept wondering why they made me leave my family if they weren't ready for me. As I told my husband, it was the worst part of the whole ordeal, and it seemed so unnecessary.
You will be getting a questionnaire from CCF in a few weeks, so please tell them how awful it was.
I understand your worries about being discharged too soon too. I didn't feel ready when they discharged me, and I passed out on the way out. They brought me back and I was there another three days due to med problems and irregular heart rate. I was definitely ready to leave after the three more days. Tell them you are concerned and don't feel ready to leave and see what happens. They may let you stay another day. Leaving is kind of scary just because you have been through so much and monitored so closely, and then they just turn you loose. I had a horrible time concentrating for about two or three weeks after I left, so please make sure you have someone there with you to keep track of everything (mostly meds and doctor appointments). It is great to get home though.....it's like you have finally made it to the other side.
Godspeed and good luck with your recovery........and congratulations on your engagement!
Thank you for sharing your experience. It helped motivate me this morning when I needed to advocate for myself and it worked.
Eric
On December 15, 2012...
Eric, don't be nervous about getting discharged. It may seem early to you, but things will be fine. It's good you are staying overnight locally, that will ease your mind. Just trust in the operation and God, you will relax. Things sound like they are progressing well and besides...you are engaged!!!
Best wishes!
Andy AVR 12.5.12 and his wife Patty
I just read your last post. I think one thing Cleveland clinic could do to improve is to allow one person back to accompany the patient before they go into the OR. This is probably something that you could mention while you're still there. They want to put the patient first. But I think in this instant they did not. Cleveland clinic does so many wonderful things. It always seems that they are always looking for improvement.
I so wish I could've stayed in Cleveland to help you out. But, as we both know Wolf need me back here. You are in good hands.
Love,
Justine
Erek though I don't know you I know your heart valve .Congradulations on the engagement thats a real sneekie move on your part but hey it worked . How is your dad doing I havn't seen a follow up or I missed it Get well and come home soon.
Jim Lewis (Panara Bum)
Thank you! My father is doing okay. He has a blockage and a hardened valve which they want to treat with medication because surgery risks are too ... Read more
Thank you! My father is doing okay. He has a blockage and a hardened valve which they want to treat with medication because surgery risks are too high. He was able to get a cardiac consult while he was here with me. He just has to remember not to push himself and accept the help of others.
Eric
On December 14, 2012...
Wow - Engaged! How memorable that your proposal was spoken from the "heart" of Cleveland Clinic! I am thrilled for both of you. And glad to hear that your recovery is moving along so well, Eric. Sleep well. Judy
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