Heath's Journal

Ana Brusso  Hi Heath, you’re almost there. I wish you a successful surgery and recovery. We will be praying for you and welcoming you to recovery. God bless you 🙏❤️

Tom Everson  Good luck.  You have done your job ( finding a heart team that you trust) now let the world class surgeon and hospital do theirs .    Don’t forget to bring a long cell phone charger cord with you. 

Klara Čičić  Wow, almost there! Agree about the phone charger, I underestimated this advice back in the days. You can do this, Heath. Being operated in CC is utmost blessing.

Miriam St.Clair  This is the hardest part, the final week before the surgery. As a Hodgkin Lymphoma survivor, just keep in mind that your recovery is a bit different from other patients. You've probably done this but I recommend looking at Rita Savelis's journal and comments as she does a great job of preparing people for this surgery. My experience was very similar to Rita's. The most important message I got from her is to expect extreme exhaustion after your surgery for quite awhile and to just accept this is the way it will be. You are in the best place possible at the CC. There is absolutely nothing they haven't seen before and know  how to deal with. They've also done hundreds and hundreds of valve replacements in radiation disease patients and know exactly what they are doing. I'm looking forward to hearing how well you did.

Mark Buttell  I’ll be praying for you good man. My double valve surgery is mid April and I’ll be waiting to hear about your successful recovery. Remember, God is GOOD all the time and he will be with you throughout this.

Susan Lynn  The last few days are difficult, Heath, but you've done your homework and are ready to put this behind you. We'll be cheering for you! You can do this!

Rita Savelis  Hi Heath. I'd tell them the truth and show my vulnerability. I think it's positive for students to hear your story, ask questions, find out about your worries. You could also just say you have some health issues and have to take some time off.  But the hard truth might show them that you respect them and can treat them like young adults. It's hard. Wishing you the best.

Robert Miller  That's an interesting question. I didn't even tell my boss why I am out (again). In the US people are just less forthcoming when it comes to medical issues. Don't ask, don't tell. Having said that, I wonder if it make sense to dedicate a few (biology) classes to this topic. Cancer, what cancer/radiation treatment can do (good and bad), how organs work together, etc. Maybe one of the students will think about this a lot more and chose a profession to help people. Anyways, just some random thoughts.

Marie Myers  I am with Robert on this one. Having a discussion about your surgery may spark interest in healthcare among your students. I think they might get a lesson in compassion with this, also. Everyone at my work knew about my surgery, but I also work in the operating room…

Donna Casaletto  I struggled with this same dilemma but my students are much younger. My students are comprised of general and special Ed preschool students. I simply said in a letter to the parents that I have to take a medical leave and a former retired coworker would be covering my teaching position. Once, I have my surgery on 2/23 I may or may not reach out to the families again. You’re fortunate that your students are of an age that they can process your medical condition and yes as someone said  be inspired to have careers in the medical field. 

Susan Lynn  Heath - Rita and Marie have given you great advice Wishing you all the best. Please let us know how it goes.

Greg Lewis  If a student doesn't come to class, do you want them to lie, or show you respect, and tell you where they were?

Pamela Gregory  I think you will be pleased with the Cleveland Clinic for your care. I live in DE and made the trip which I do not regret. Inconvenient but well worth it! I will pray for a large enough valve for TAVR later for you

Miriam St.Clair  Focusing on staying and getting healthy before your surgery will prevent a lot of anxiety, I found, so you're on the right track. Also, as Pamela mentioned, you're going to be pleased you went to the Cleveland Clinic, so I would focus on that, too. You're going to the only place in the US that can handle the complexity of your case and they have loads of experience with radiation heart disease patients. They've seen everything and know how to deal with anything. You'll be in the best place possible.

Robert Miller  That is a big decision. I am pretty much your age and had to make the same decision. Luckily, my mitral valve could be repaired (again) but I still had to make the same decision before the surgery. I am sure you read about it but basically <50 years many people get a mechanical valve. >65 years many people get a tissue valve. The idea is that a first tissue valve will last 10-15 years. If you are young then your immune system will fight the valve harder so it will not last as long. But for "older" people it can also last beyond 15 years. Then you can do a second tissue valve without open heart surgery. That valve will probably not last quite as long. Lets say 10 years. So if you go with a tissue valve you have some 20-25 years before you might need open heart surgery again. That puts you at 70-75 years old which is an age when open heart surgery is tougher on you than at 50 years old. I am a somewhat active person skiing (without helmet which makes me ski more carefully but I would have added a helmet if I had to get a mechanical valve), work with power tools (circular saws, drills, jig saws, etc), climbing on our roof (Christmas lights, etc). I also heard of people being so annoyed by the ticking of the mechanical valve that they got a second surgery to have a tissue valve (though the overwhelming common consensus is that after a few months you don't even hear it anymore, the "noise" level depends on your physics, though). I was still kind of set going with a mechanical valve. I didn't mind being on blood thinner, I was going to measure my INR level at home, etc. I have a pretty consistent food intake (mostly rice, green vegetable, chili, and no I am not Asian but my mother-in-law thinks I am an Asian person trapped in a white body...) But last minute my nurse and surgeon suggested that a tissue valve is probably better despite my age of 50. So for me it was a tissue valve. Note that before the surgeon didn't give any recommendations but just facts (what I said above). Only right before surgery he said he would go with a tissue valve. He is active himself like golfing, surfing, etc) Btw, there seems to be a difference between cow and pig valve tissue. If I recall correctly, the cow valve tissue seems to last longer but check with your surgeon. Do NOT take my word on this but just ask the surgeon. 

Marie Myers  I went back and forth for months in 2017 also. I liked the “one and done” surgery idea, but ultimately went with the tissue valve to avoid Coumadin. It is a very difficult decision, and I was 63 at the time of my surgery. 

Pamela Gregory  Hi Heath, I also struggled with this decision. I picked tissue valve and I am 55 years old. Dr Roselli (from Cleveland Clinic) did my surgery and put a bigger valve in that he feels will be more durable so it will last longer (hopefully 15-20 years is what he said). I also did not want the blood thinner or ticking. Hopefully he is right and I can get TAVR down the road the 2nd time

Rose Madura  I had tissue valve at age 59 and was also told 15-20 years.  Think what advancements will be made in the next 15 years!  But my advice is always do research, make a decision and don't second guess yourself. Once the decision is made, it's the right decision.  Godspeed.

Brady Busch  At 66 when surgery was done,my choice was a tissue valve,to avoid Warfarin.A little over one year later and I'm still taking a blood thinner,plus low dose aspirin,although it's Eliquis.It's because of experiencing atrial fibrillation afterwards.
There may come a time when the medications can be stopped,but right now,the doctors see a benefit.

Robert Miller  @Pamela Gregory good point about the larger valve. When the put in a second valve through your veins it will rest on top of the valve they inserted during your first surgery. So blood flow will be a bit more restricted when they put in that other valve. When I talked to the surgeons I got the impression that this won't matter much because once you get to that age you probably aren't running competitive marathons and such anymore. But it probably would prevent adding a second valve on top (so 3 valves). Note that Dr. Woo from Stanford (I didn't like him at all but that's a different story) told me that putting in a valve through your veins might not be an option in the future. Supposedly this is a procedure that is pretty new and FDA might not allow it based on long term results that are still being gathered. This was somewhat surprising to me as I heard so much about this procedure (putting a second valve over the first valve). 

Rose Madura  Robert, my aunt has had 3 valves.  One SAVR, one TAVR through the groin and a 2nd TAVR through rib cage.  So it can be done.  That's and interesting statement from Dr. Woo.  I'm not sure what to comment about it so maybe I won't.  

Robert Miller  Never mind Dr. Woo's comment. He didn't answer a single question I asked. Whatever I asked he kept on saying that he will decide what to do when he opens me up. And he refused to say anything about the option of TAVR besides that FDA might not allow it in the future. He also didn't ask me anything but it was all up to me (not that I didn't know what to ask because I have gone through this 8 months before). 

Marie Myers  Are you checking your blood pressure at home? Sometimes lightheadedness can be caused by low blood pressure. One other cause is irregular heart beat. Any irregular pulse when the lightheadedness happens? Don’t forget to stay hydrated, too.

Greg Lewis  Let your doctor know about the change in symptoms. Your condition may have changed. This is a doctor thing.  Cheers!

Patricia Dillon  Night sweats can be from your heart and other things as well. Dizziness..chest pains..upset stomach and fast pulse rates can all be signs of an impending heart attack. Tell your Dr right away and he can help you. 

Ana Brusso  I like Klara had night sweats after surgery but gradually they went away. Once in a while I get them. Can’t speak for the other symptoms 

Miriam St.Clair  Some issues my cardio-oncologist brought up were the degree of calcification and fibrosis in the thoracic cavity and how this could affect the heart and lungs. Is the pericardium adhering to the underlying heart structures and restricting the movement of the heart and is the lung tissue fibrosed and affecting lung capacity?   Is the tissue between the aortic and mitral valve (the aorto-mitral curtain) calcified? if it is, it's not a good platform to attach the new valves to and it will have to be replaced. The ascending aorta can be calcified also and might need replacing. The arteries supplying blood to the heart can also be calcified and have blockages requiring either stents or bypass surgery. I had my surgery done at the Cleveland Clinic and they are aware of all of the issues patients with radiation heart disease might have and they're prepared to deal with them. The surgeons, anesthesiologists, cardiologists, nurses in the ICU and nurses in the step-down unit have all seen a lot of these cases and nothing seems to surprise them. The course of my surgery has not been easy but I was fortunate that I didn't have any blocked arteries, my pericardium was in good shape, as were my lungs, I didn't have any calcification between the two valves, and I was in overall good condition. My current issues are related to radiation heart disease and include persistent pleural effusions and A-fib. My recovery has been very slow but I was told to expect this so I'm still waiting to turn the corner to feeling back to normal. I hope this helps. It's a complicated surgery and you need experienced people caring for you and you will be fine. If I can help in any way or answer any questions, please let me know. 

Rita Savelis  Hi Heath.  When you see a surgeon you should expect him/her to tell you how they plan to proceed with your radiation induced damaged heart valves. They should understand your condition. They won't know what they'll find when they go inside, but they will know the various scenarios they can expect. Pre-operation testing will be done so that they can acquire as much information as they need. I did not have a cardio-oncologist, but was directed by my cardiologist to a surgeon  familiar with this type of problem. I was in a large public teaching hospital. Radiation affects hearts differently so your problem remains singular and you need to find a surgeon who you trust to give you advice. My surgeon made decisions during surgery (such as to repair my tricuspid valve as well as replacing my other two valves). I found out about this afterwards. He knew that in a perfect world I would prefer tissue valves but when he saw the mess inside me, he knew that mechanical was the only valid option to avoid re-operations on a patient for whom a heart operation is not as easy as a standard aortic replacement. My surgeon told me that my recovery would be long without giving me a specific time. I was grateful for this so that I wouldn't feel I was in competition with other heart valve patients who bounce back from surgery in a few weeks. I did not expect to feel better immediately. I never felt pain but I did feel utter exhaustion and discomfort for weeks/months. This was 8 years ago. Heath, you are young and in good health so you have many things on your side as you go into this surgery (despite all the long term effects you have already experienced). Heart surgery is a big deal and I feel for you because the anxiety and other emotions are enormous. It can help to talk it all out with a therapist because it's a lot to deal with and feelings need to be expressed.  Take care.

Patsy Stewart  Heath, I’m glad you asked these questions. I’m thankful for the responses from Miriam and Rita. I would suggest you do your homework in seeking out someone who is specialized in radiation damage and one who has more knowledge in that field. I live in a rural area and didn’t have anyone who specialized in patients with radiation damage. I wish I would have found this site earlier and had known to seek someone out who was specialized in the field. I am a Hodgkin’s survivor and have a lot of internal damage. I am thankful for the treatments and the life that God blessed me with. Sending prayers your way that you will find the perfect surgeon and heart team. 

Tim Traub  Heath, I had four months of waiting and contemplating surgery which I just went thru. I remember that anxiety feeling well esp in the night when everything is shut down. I just tried to balance my fear of the unknown with the knowledge and support that you will find here on HVS.com.  And try to do all the bucket list things you’ve been putting off between now and April!  Take lots of pics and hold those close to you between now and the.   Even in the waiting, it’s God’s breath in our lungs.  

Rose Madura  Heath, knowledge is a good thing but try to get a balance. Instead of focusing on what can go wrong, try focusing on what can go right. There are plenty of success stores on this site. I did have a myriad of complications but am doing well now, 5-1/2 years later. The odds are in your favor. Outcomes are good. You can do this!

Klara Čičić  These nights are so familiar I think to all of us. Reading stories here on this site from these lovely people made it a lot easier for me. Also going through those positive and encouraging statistics of our surgeries. Making sure I chose the best hosiptal and best surgeon for my particular situation. I also kind of made peace with every possible outcome in my mind. Talking to your loved ones... Educating yourself as much as possible ("with knowledge comes peace..."). Those were the things that helped a lot. But this page was the most important factor in alleviating the anxiety :)))

Claudia Kwalbrun  I waited two months to have my mitral valve repaired. I was so anxious, I could not function….the thought of major heart surgery and what could go wrong took over my life. Finding this site helped me tremendously and instead of focusing on the negative I focused on the 98% success stories. I am 5 weeks post op and doing fine. You got this, keep on posting your thoughts and questions…the heart warriors on this site are so caring and positive. 

Robert Miller  The surgery is the easy part. You just sleep. The hard part is after the surgery, i.e. all those wires, getting blood drawn every 6h (they used some "pipe" in my neck which made it pretty easy), having to use a commode, bad hospital food, etc. Prepare for your stay at home. A "wedge pillow" helps a lot getting in and out of bed. Get something to elevate your feet. Wear that "heart hugger" so when you cough/sneeze you can compress your chest. And do the breathing exercises to help your lungs. 

Klara Čičić  Those are all tough questions, Heath... Take it easy and if possible, ask for second, even third opinion. 

Rita Savelis  At age 53 (8 years ago) I had my aortic and mitral valves replaced with mechanical valves, as well as my tricuspid repaired. Because of the stenosis in my valves (due to late effects from childhood chest radiation therapy) it was decided that re-operation was not a good idea. I've been on anticoagulants for 8 years with no problem, just another pill to take. The aortic and mitral valves are not "side by side" - there is definitely "room" for mechanical valves. I have Italian-made valves as I live outside of the US but On-x is highly marketed to patients in the US. The mitral valve is a much trickier valve and harder to reach than the aortic.  Sometimes it can be repaired. You are young to have tissue valves as they tend to not last very long in younger patients and with 2 valves they can fail at different times. Transcatheter valves don't last forever and have to be replaced eventually. Trust your cardiologist and especially a cardiac surgeon to inform you of your options which will be very specific to you and your individual situation. I'm sorry that you have to go through this - heart surgery is never fun, but then one goes on. Take care.

Rose Madura  Heath, I am sorry you are going through this. For peace of mind, I'd definitely do your due diligence and research as much as possible and as I said before, a second opinion is always in order. Write down your questions and ask away. You have to be your own advocate and you must feel comfortable with your decision. Praying for you.

Miriam St.Clair  I agree with Klara that you should get a second and even third opinion, which is what I did. I know you're not too far from Cleveland, if it's possible for you to get to the Clinic, that might be a good place to start.

Miriam St.Clair  That is overwhelming to take in. Are they certain this is what they will have to do or are you being offered other options? I had three bad valves and they were able to repair one and replace the other two. My surgery went well and my new valves and repair are working well. Keep us posted!

Danny Mahoney  Good luck with your surgery.  I would get a second opinion just to make sure.  I went overboard and had three opinions (NYC area) resulting in the same conclusion (Mitral Valve).  I had my surgery 2 weeks ago (Lenox Hill, NYC) and am trending in the right direction.

Klara Čičić  You're doing great, Heath. Keep educating yourself and you will feel more confident. You have this wonderful community of people who understand perfectly well what you are going through. 

Susan Lynn  Heath - Welcome fellow Pennsylvanian! It definitely starts to feel real when you meet with your surgeon; be sure to ask all of the questions you have about the proposed procedures. As Miriam said, if a repair is possible for one or both valves (with an experienced surgeon), you definitely want to go that route. Once you're confident in the surgeon, team, and facility, the thought of surgery will be less intimidating. We're fortunate that we have highly fixable conditions - heart surgery has come a looooong way! You'll get through this, just like we did. We'll be here to help you, too!

Greg Lewis  Hi Heath!! This was scary for every single person here. Pretty sure! So your not alone! You can ask us anything, anytime, and someone, will try to help you out, every time! 

Marie Myers  I was overwhelmed as well. I went to 2 surgeons at 2 different practices, and then made my decision. It seems very daunting in the beginning, but you can do this!

Rose Madura  Heath, it's very overwhelming and your thoughts are totally normal.  I do recommend a second opinion. I actually had four. They all agreed!  The biggest decision was choosing my valve.  God bless you on the journey.  And please keep us updated. We are here for you...

Susan Eckermann  Hi Heath - it is definitely an overwhelming feeling.  Be patient and give yourself time to take in the information.  I would get a second opinion, or more, and obtain as much information about your diagnosis and the potential treatment(s) as possible. Knowledge brings peace. This is a wonderful forum. You can ask anything, express your feelings, or just vent, and  you will be supported by knowledgeable warriors who have been, or are going through,  the same challenges.