Susan's Journal

Jane Buttram  Susan, I want you to know that I am praying for you to get pain relief right now. I want you to feel relief; please,Lord, grant relief to susan. In the name of our Lord, Jesus Christ.

Cathy Breschini  Susan, I've been thinking about you. I'm sorry to hear this patch is so rough. They may not be adequately medicating you. I hope you can call them and report your pain level and check. Hoping things will ease soon for you in every way.

Corey Sines  Really Sorry your in so much pain. Definitely let your docs know and see if anything more can be done to help you!

Lise Bowles  Susan, I am here call anytime if you want to talk, I hope you are feeling better. I am little by little, ❤️

  thanks for the update, so glad that surgery was successful! She will continue to get stronger each day. Wishing her a speedy recovery.💐

David C  You will come through this fantastically. Hoping you can get some rest tonight, have a smooth surgery and an easy recovery. You are going to the best of the best to get the care you need. You'll be in my thoughts tomorrow.

Bob Fessler  Good luck Susan. You've got this. Let us know,how you're doing when you feel up to it. God is with you.

Gerald Sushil  Peace and prayer to you. Follow everything the experts teach regarding recovery and your journal will be succesful. Best wishes

Peggy Whitecotton  Our prayers are with you Susan. Soon you will be on the other side and will starting a new chapter in your life. Trust me you will not be that same person

Lily He  God bless you, Susan with all his grace and mercy. You will be all right like all the other heart friends.

Lise Bowles  Good luck tomorrow Susan. I can't believe toddy is day. I am still in a state is shock. I would think by now it would have sunk in! Xoxoxo

Susan Schweter  Hope everything went well for you. I am checking in the hospital in 7 hours. You are in my prayers Lise Bowles

Emily Rowley  Wishing you all the best for your surgery and recovery ☺They will give you some sedative drugs which will help you sleep easily...

Bridget Sawmiller  Wishing you the best for your upcoming surgery, I am almost 2 weeks post op and I can relate to your feelings, totally normal, but you will do GREAT!!

Catie B  Wishing you well in every way, Susan. I hope your anxiety is manageable these days. I'm glad reinforcements are on their way to you--your dear family members.

Paul Wells  Susan, Im wishing for you a good surgery and speedy recovery
I had an Aortic valve replacement as well.there are many valves on the market. I'm always interested in which valve is used.
Would you mind sharing that?

Barry Kanick  Susan,,,,,,,I got (3) second opinions before I had my aortic valve surgery done on July 5th. As a 56 year old guy who is sizeably active, I chose the Latest generation Edwards Lifesciences Bovine Tissue Valve "now" with the notion that the TAVR procedure is perfected even moreso 10-15 years from now if my new current valve could possibly wear out. And when it does wear out,,,,they go up the femoral artery in your leg & plop the TAVR valve in the middle of my current new valve that I just recieved. And that's it!!! ,,,,The Clevelend Clinic was actually one of my 2nd opinions & they even agreed with my selection & direction I was going. ,,,,I've read numerous times where "tissue valves" have good longevity in moreso older people.,,,And for me personally when it comes to the mechanical valve, I just refused to accept constantly being on Coumadin & all the maintenance involved for the rest of my life. ,,,,,,Hope this helps!!! .......Barry

  I also have a bovine valve (stented). Crossing fingers it doesn't wear out too soon, but all I have to take is 81 mg of baby aspirin daily. You choose what you think will work for you. There are pros and cons to both. Cleveland Clinic has great valve replacement web chats with surgeons. Might be helpful to review the transcripts. They will also send you research articles and information to help you make your decision (all for free). Best wishes to you!

Susan Schweter  Thanks guys your answers were very helpful. I chose the tissue valve because I am also very active and I was also concerned about the coumadin and blood test regimen. I don't know what tissue valve my surgeon will use, they are suppose to call me tomorrow about that.

Juergen Li  I am 58 and went with a mechanical valve - which was also the recommendation of two surgeons I met with. For me the valve function, performance and longevity was key. There is even a chance that an aspirin a day might be sufficient for this type of valve. But I don't think you will go wrong with a tissue valve either.

Rita Savelis  No decision is the "right" one. There are pluses and minuses for both. It's really hard (and having family disagree with you must be harder).

Whatever you do, there was another choice.
Sometimes one doesn't have choices.
It's unfair and difficult. Perhaps the most difficult part.

I had triple valve surgery with 2 replacements. They were replaced with mechanical valves. Two replaced valves (done with tissue) would wear out at different times. Because of radiation for cancer I had as a child my lungs are scarred and surgery is more difficult.

I am active, eat what I want, and find taking coumadin not such a big deal, after a period of adjustment.

Hopefully your doctors will help you with the decision.

With every kind of valve repair or replacement you risk more surgery in the future, but surgery (OHS) is safer these days, so the medical field and many patients are okay with multiple surgeries.
There are positive and negative stories for all replacements.

I'm not sure I've been helpful, but I just wanted to say I feel you and it's very hard, this process, but then one day a year or two later you are beyond decisions and past recovery, and you're okay.

Amy Dorsey  That's a highly personal decision. It really depends on age and how you feel about reoperation. I just had a repair and I'm 39. I know I would never ever ever want to have to have heart surgery again… But at the same time being on blood thinners is not a good option for me and my age and activity level. Even though I had a repair I had to choose just in case they had to do a replacement at the last minute and I chose the tissue valve… But that was before I had to go through the surgery. Not something I ever want to repeat if possible. Not an easy decision :/

Eddie Patton  Tissue here at 50 years old. It's your choice and yours alone. Do your research talk to the doctors make a choice and don't look back.
Good luck.

Cathleen Weed  I've had TAVR (as Barry described). It's not without risks, certainly isn't painless, is still a major procedure under general anesthesia, but in my opinion it's a MIRACLE. Personally, I left the hospital the following day and was back to my normal activities shortly after. Having been through 3 OHS I can tell you that TAVR is what everyone has been waiting for and if you choose a tissue valve I am sure TAVR will be even better if you need another surgery down the road. I can't speak for the mechanical valve because I've never chosen it (Coumadin reasons). Good luck! xo 💛

Steven A Husted  i agree with Barry and mechanical valves can fail also in a short period of time most patients choose a mechanical valve for its longevity but they fail also there is no guarantee with any valve it is your body and your choice myself i chose the bovine valve because i did not want the INR testing and taking coumadin the rest of my life and other restrictions i am two years out and doing fine and glad i chose a bovine tissue valve best wishes and prayers in your open heart surgery journey

Corey Sines  I echo what everyone else says, there are no perfect valve options available today so get the facts and make the choice that feels best for you. I am choosing mechanical, because I am 40 years old. The only restrictions are contact sports, which I don't play. I am choosing the On-X valve because it will allow other options (Aspirin/Plavix) besides coumadin for anticoagulant therapy (Check out my Journal for more information) and tissue valves don't last as long in younger patients (below 60). in the Mitral Position, I would be lucky to get 10 years. For you with the Aortic position, and at 53, your odds of getting 10-15 years would be pretty good, but don't expect longer than that. Valve in Valve procedures like TAVR are an amazing feat of medicine today. However, speaking about this to world renowned Surgeon on consult at Cleveland Clinic, because its so new, no one knows how many times it can be repeated, but their are theoretical limits because the old valve isn't being replaced, just squeezed over. Additionally TAVR Manufactures are only rating their valve life at 5-7 years currently (It could last longer), but this should improve with time and technology. Make sure you factor into your decision how old your are now, and the probability of how many more re-ops you will need to reach say 80 or 90, and their increasing risk to you. That's my two cents. Talk through all these options with your surgeon, see what he/she can and is able to do and get his/her opinions.

Priscila Marino  It's amazing how things can change in a split second. This morning I woke up counting down my 9 days until surgery, I was freaking out - as most of the time lately- In the afternoon I got the news the surgery is postponed with not define date.....! I am actually envying your countdown Susan.....
Hope all goes well on your surgery and speedy recovery. Hope to be able to join u soon on the other side of this ordeal.

Rita Savelis  I hear you Susan. Those surgery videos are calming because they only look at one very specific part of the body. The science and skill is amazing. I'd love to have a video of my own surgery - as it is I have a very detailed surgeon's written report. In the end, one has to trust surgeons.... and one has to trust oneself to make it through recovery. It's usually different than you imagine. The things you are most afraid of go smoothly, there are other things you never thought of that surprise you. And, I stand by my story - not everyone is in pain after surgery - discomfort yes. In the end, it is okay. You are right.

Juergen Li  I just came out of OHS and would like to reassure you that you will be in the hands of professionals and surrounded by amazing technology that hopefully makes this as easy as possible. From my own experience recovery is much easier than I thought.

Lise Bowles  Susan, that is so funny, I did the same thing yesterday and I also found it rather reassuring! Instead of freaking me out it helped me to look at the anatomy of the repair and it was rather interesting. I am still a bit juittery as the days whittle down, gulp, but isn't it interesting that we both felt compelled to do that?
Onward and upward! I hope we have a similar experience to Juergen!
😊Lise

Peggy Whitecotton  Susan... I watched tons of videos, searched the Internet and hours on this site as well. Friends and family told me to stop but I was consumed with the thought of having OHS. Every waking moment I thought of nothing else, even had dreams about it. But all my research was good for me the more I learned the more calming for me. My surgeon had several videos on U Tube and I watched them so many times I had them memorized...

Meredith Bray  Isn't it funny how everyone likes different things? I really prefer NOT to see body parts etc, and was actually a little miffed when I received a report in the mail with a picture of the CT scan of my heart! (Okay, I was really upset, like - called the nurse and asked them in a stern voice not to let that happen again!)
Seriously, I didn't look at my incision site until I got home, and while I was in the hospital I NEVER looked down because i didn't want to see the tubes going in & out of my body.
I'm glad you found something that calms you!

Meredith

Clare Auten  Please hang in there! Can your cardiologist or surgeon prescribe Xanax. I used it a few times when I was in the hospital but I am glad I didn't have to take it every day.

Michelle Harrod  Susan, it must be hard, try to focus on something else. I haven't been there yet but I' know you can do this. Some of the others have meditated, that could help. I've started that as I'm getting anxious too and it has helped.

Susan Schweter  No, my surgeon said although he thinks I should take it just when needed for the next 2 weeks, he does not write or manage those meds.. That's why he wanted my primary care physician to write it. I have never taken anything like that either so I definitely don't want to take something I will be stuck taking every day for several months. I will probably be okay without anything, but right now I just feel so hopeless. Although my husbands family lives here all of my family is 1100 miles away right now, so I feel kind of alone.

susan kotansky  Dear Susan....Having gone through this 10 months ago I have deep empathy for your situation. I was never more afraid of anything in my life. In fact my surgeon told me that he was surprised I showed up for surgery! That being said I took ativan (which is the precursor to xanax). Interestingly no doctor wanted to prescribe it for me. The surgeon asked me to ask the cardiologist. The cardiologist told me to ask my primary care physician. In the end I got prescriptions from all three!!! The surgeon called my pharmacy personally on a Sunday to help me get through the night. I simply couldn't function with the intense anxiety and it really helped. I also stay away from medication but this was one instance I felt demanded it. So I took it before and after and then weaned myself off when it was no longer necessary. I keep the extras for just in case. You will get through this....I didn't think I could and well.....I did and am totally fine now. Advocate for yourself. This is one time a little xanax is gold. I wish you a very calm and rapid recovery!!!

Lise Bowles  Susan, forgive me but that doctor who said he would give you Paxil is an ass! Paxil is an ssri and it can take 6 weeks to take effect, it may be sooner, but not usually. It has to build up in your system and that takes time. Xanax or Ativan are quick acting and help with panic and anxiety. Paxil can too eventually, but not on the spot! Breathe....I am so sorry and I understand your fear....you know at the health food store there is a product called Rescue Remedy. It comes in a chewable pastille, a tincture, or even chewing gum. I prefer the pastille. It really does help although it's not as strong as Xanax or Ativan. I am sorry you are going through this. Advocate for yourself and explain to the surgeon you just want something for when you need it, not all the time! Grrrrr.....make me mad,
Xoxo Lise

Steven Dean  Sorry to hear. I struggle at least once a day lately, though tonight is my last preop night. Try to focus on things you enjoy as much as possible. You will get there.

Meredith Bray  What Lise said! Maybe they could give you a beta blocker instead? And you anxiety and fear are normal for anyone facing surgery. Ask anyone who has been through the surgery or is facing surgery, and they will be in agreement - the waiting and the anxiety is the worst. We're here for you and with you. You'll get through it.
-Meredith

Joshua Trimberger  I 2nd ativan! They gave me some in the hospital and my doctor gave me some for post surgery panic/anxiety and its great. It works in about 20-30 mins and can be taken every 6-8 hours as needed. If your regular doctor won't give you a prescription I highly suggest you find a doctor who will. You might even call your cardiologist's nurse and see if he would be willing to prescribe it due to your regular doctor's inability too. There will be a doctor somewhere that is willing to help you. You might even try a psychologist. They could proscribe medicine and you can talk to them about your nervousness. As someone who went through the same surgery you will have, I can tell you having someone to talk to post surgery is a good idea as well.

Susan Schweter  Thank you all, and Lise Bowles I will go to the health food store tomorrow to look for the rescue remedy and try that.

Barbara Laurie  Susan, Your feelings are totally normal. Absolutely . I truly hope you can find a new primary Doc, because yours is a total 💩💩💩 I'm not a doctor, and I don't play one on TV but dang, Paxil? A first grader would know that's a terrible suggestion. True depression isn't what you are experiencing, but sure, anxiety is real. Wow. I agree, look for natural remedies, then ask your surgeon to call your doctor. Why your surgeon can't write the Rx baffles me too. Oh Susan, you'll be okay, and you will be happy again. I cried every night b4 my surgery. But Dave and family kept me going. As an aside, at my hospital they gave me 3mg of melatonin at 10:00pm to help me sleep. Maybe? No matter.. Sweetie, hang in there! Best Regards and hugs 💕❤️💕
PS I had Ativan b4 and after, still was anxious and cried, but I was able to function much better.

Rita Savelis  I feel you, and I empathise. So sorry that the doctors are not hearing you in the way that you need to be heard. Talking to a therapist as you await to go through this intense experience could be helpful. I know I needed professional help to accompany me through this process. I also can't imagine why a doctor wouldn't give you xanax or its equivalent. Take care. Find another doctor, or a psychiatrist can prescribe xanax for you. Take care.

Catie B  Agreeing with Lise and others here about Paxil being a poor choice. Ativan would knock back your anxiety if no one can be persuaded to give you Xanax. Maybe he was worried about addiction, but sheesh! Sorry you ran into a wall--do advocate for yourself. It's a legitimate need!

Janette Rehua  oh the tooth fairy can do anything you know!! I have a non verbal autistic 3 yr old Grand daughter called Willow but who is nicknamed Dolly. I think she will be restrained when (I) Nanna has her surgery miss Dolly loves a rough climb over her Grand parents !!!

Emily Rowley  Gotta love you 😁 I would of said "Umm the tooth fairy came by to inspect the tooth and if she can see you brush your teeth well then she'll place something special under your pillow when fast asleep." It is lovely hearing about your Grandchildren stories Susan & Jan ☺👵🏼

Wanda Mroz  Me neither... Joined after surgery. I think I could write one now! LOL. I will eventually... Love my Kindle btw 💞

Steve Wykstra  Hi Susan, just read your post "confused"...yeah, I can see why: things there strike me as objectively confusing. I wonder if anyone else has had a first meeting with their surgeon just the day before...that seems like it is unusual... or *should* be unusual ...or maybe, should be illegal.

I feel for you because I have also felt some frustration over the past month as not feeling able to talk with my local main cardiologist except at the one meeting where she told me that my heart valve was in urgent need of replacement. (see my journal). But at least we met with the surgeon I was recommended here (Meijer Heart Center) three weeks ago, and had time for a second opinion at U of M, and then had a teaching-session with the teaching Nurse this morning.

I'm not sure it's usually helpful to offer advice in these contexts. I guess I'd just encourage you to try to maybe, even though the time seems short, to not go into passive mode on this, get more information, maybe even put it out here and see if others have feedback.

Part of what can help with anxiety can be to just get more information to answer relevant questions, and, within the reality-limits of course, to get a bit more control.

LIke, perhaps, what are the names of the two surgeons, at the outlying place and the main campus, and what info can you drum up on them? (Folks here might well help with that!) Can you pester for a meeting with each of them asap, so you can use that to help make the choice? Do either of them have, on their team, a good Nurse who can serve as a "teaching Nurse"? Can you "overbook" for a few days at both places, to buy a little time to get information and make the best choice?

I asked my second opinion doc how one goes about choosing a surgeon for aortic valve replacement. She said "You want someone who basically does a heart valve a week, not someone who does hundreds of surgeries a year but only a few heart valves." I'd alreadly ASKED my recommended surgeon that question, because I had enough advance time. (my journal talks about this). I think you still have time too!
Because, again, it's YOUR heart:

Maybe these suggestions don't help or are out of line or aren't helpful, but I'm throwing them out anyway just in case they have some worth to you, because this is after all your heart. I'm running on because I'm a bit angry on your behalf. Maybe your situtation is somehow special, but to me, it ought to be illegal to make it hard or awkward to get that information. If you can break through that wall, consider doing so! You're reading Adam's book, that's a great step! Keep us posted

.

Susan Schweter  Wouldn't you know, the surgeon that I am currently with called first thing this morning to tell me my surgery has to be postponed till August 17th. There are actually 2 reasons for it. One is they had a patient that needed to be off meds for 10 days but needs surgery right away, and they are in worse shape than I am, so they had to move him to my date of the 11th. Second, I tested positive for staff on the nasal swab yesterday, so I started antibiotics today. It is not safe for me to go in for OHS with a staff infection so it needs to be gone before surgery. My surgeon does surgery on Wed, Thurs, and Fridays only. The next day would be the first spot on Wednesday, August 17th. Your message was very helpful. I had been leaning toward my original surgeon anyway. He was a professor at Case Western Reserve, and he is Director, of the division of Cardiothoracic Surgery at Metrohealth General Hospital, and on the Cardiothoracic team at Fairview Hospital, a Cleveland Clinic Facility. He does not do as many surgeries yearly as the surgeons at Cleveland Clinic Main Campus, but maybe that is actually a good thing. Also his office is at the same facility as my cardiologist. I will be having my surgery at Fairview Hospital, and although it is part of the Cleveland Clinic it is a smaller facility, still large enough just not nearly as big as the Main Campus. It is also exactly 5 miles from my home, and my primary Doctor's office is right across the street. In fact all my Doctors work out of this hospital. I don't know why and I'm not putting my decision off on you, but somehow your message put me at ease in my decision, and now for the first time it just feels right. I have also done as much research as I can on my own, on both doctors, and weighed the pros and cons. So now I just got to put in God's hands and let go and let God be God, and hope for the best. Thank you Steve Wykstra

Steve Wykstra  Glad to read your further thoughts, Susan. Thanks much--I was worried I'd talked to much, and out of turn. I probably did, but sounds like you were enabled to get good from it anyway! You'll be in our prayers!

Corey Sines  It all comes down to your trust level of the Surgeon and Facility. Make the call that feels right. I never liked meeting the Surgeon the day before surgery. I had a bad experience with it. The Surgeon didn't implant my valve of choice, despite emails to their NP before hand. So I had to cancel surgery 18hours pre-surgery. Quite the roller coaster of emotions let me tell you!

Catie B  I also plan to go with what gives me the most peace and I hope you can find a sense of what's best for you. I'm so sorry for the extra anxiety, but having options can be good.

Wanda Mroz  Hugs. Wonderful that you have such a great sister. Breathe, stay strong and be positive. You will get through this because you are stronger than you think!

Joshua Trimberger  I hope some of your anxiety fades. If its any consolation. This is one of the safer major surgeries. Statistics are way in your favor. The average mortality rate is something like 1-3% for the surgery and at places like CC or other high rated hospitals and surgeons the rate drops further. When I had mine done 2 weeks ago. His mortality rating was less then 1%. Hopefully that helps! The numbers are on your side as well as everyone here too

David C  You will get through this. You are going to the Cleveland Clinic? It's kind of shocking how routine something this major, feels like there. Like all of us on here, I was super anxious heading into the surgery. I mentioned it elsewhere, but I was literally dry-heaving walking to surgery. You wake up and will be just focused on healing. You will do great. You will feel better, etc. I also saw your notes about meeting with the surgeon and having more questions. Will you be meeting with them again before surgery? Can you go through any limitations again with them pre-surgery? I know I wished I had another follow up, as more questions come up after you process. You will very likely be meeting a very experienced nurse practitioner before your surgery, who can answer any of your questions.

Susan Schweter  Thank you all. I don't have an appointment to see the surgeon before surgery but maybe I should call and schedule one if not withhim at least his PA.

Rita Savelis  You can be real and honest with your sister. No one likes to see anyone sad or scared but those are real emotions that deserve to be validated. They are there. Pre-surgery anxiety is ever present, but surgery itself is quite safe these days. Recovery can be a long hard battle, and being yourself rather than trying to be stronger for others helps validate everything that is going on. You are stronger than you think and so is your sister. Take care.

Wanda Mroz  I scheduled two meetings with my surgeon before I even scheduled the surgery. It made me feel better to do that. My OHS wasn't at Cleveland clinic, but my surgeon trained there and was more than accommodating .

Richard Davis  You're in great hands, stay strong and relax, I'm 2 weeks post opt. and feeling better every day! Thoughts and prayers too you!

David C  @Susan, yeah, I would reach out for another conversation with his PA if it will help. I found that the surgeon's team was very receptive and communicative. It seems pretty natural that we are all going to have questions that come up. I also want to echo what Richard said above me. I am just three weeks out of surgery, and while there's little things like shoulder cramps because I am favoring something, I feel better and better all the time. You will be amazed at how fast you feel improved.

Clare Auten  So. There are restrictions in the beginning. At some point they say no restrictions. I specifically asked about mowing the yard and my surgeon told me to be careful not to Cut off a toe ;). I know people on here do all kinds of things like run, hike. ride roller coasters, etc.

Priscila Marino  You will probably have more restrictions if you chose the mechanical valve due to anticoagulant you will have to take. I know sime foods are restricted like greens and grapefruit. Other then that just being careful with anything that could cut you, you can bleed a lot and taking antibiotics before detal work. That should be it from my researchs......

Darlene Smith  I am only shortly post op (10 days), but my understanding from my surgeon team is I will have no restrictions once I get back to 100%. But the recovery will take time. Sounds like your hip surgeon wasn't totally ethical to hide things from you. But my understanding from valve surgery, is we are golden except like Priscila said, if you are on blood thinners there is a dietary consideration.

Clare Auten  There are some dietary restrictions for my mechanical valve but it hasn't been too bad, honestly. I Still eat some greens but more as a side, than the meal. I have to be consistent with it. I adjusted to the warfarin easily and have a great anticoagulation clinic that I use.

  I am post op about 6 months with AVR and have tissue valve. Major differences now include daily baby aspirin (81 mg) and anytime I got to the dentist, I take 2 horse pills of antibiotics. I have no physical restrictions and can do most anything I did before surgery. I will say sometimes my sternum feels like it pops if I move my chest in an awkward way. I don't feel like I have 100% of my strength back in my chest muscles, but expect it to come with time. Best wishes to you!

David C  The restrictions you list sound an awful lot like the short term restrictions [the crossing the legs thing is brutal for me]. My understanding is that these restrictions should be lifted within 3 months of surgery, if not sooner.

Lise Bowles  Susan, it was great to talk to you too!
PS. The last name is Bowles, not Bowels! Lol, you are not the first, and certainly won't be the last, 😜

Catie B  In my own journey in other arenas than the heart issues, I've learned over time not to really lean on people who can't or won't understand and have proven to be non-supportive emotionally. Maybe you can help your family members turn a corner, but in the past I couldn't change people with that attitude. I treasure the ones who get it, whether online or in 3D. Hope you find all the resources and encouragement you need, Susan, to help you through the coming days and procedures.

Catie B  I forgot to say I'm really sorry your family is being glib about things. That can feel very invalidating and is frustrating, for sure.

Lynne Jeffreys  Although I had the support of my sisters fully, they never bothered to come here and read what all of us are dealing with. It think as I come up to my 1st anniversary in Aug. that the people here helped me deal with my feelings better than the actual family. So to you Susan, we are all here for you and I'm sure you can find the support here as your surrogate family. Lynne

Amy Dorsey  I completely understand. I attempted to get my family to read Adams book as well as gave them all the link to my journals so that they could see everything and have an idea of what this is going to be like not only for me but for them. Some of my friends have come to my page many times. But my family really doesn't care to. I even brought Adams book with me a week before my surgery for my dad at least to look at so he would know what he's in for. He keeps thinking that since I'm young this should be a breeze. Now he is seeing that it's not such a breeze and panicking at how is he going to know how to take care of me now when I'm released. And yet he still refuses to even open that book which has every single answer to every question he keeps asking me. It's very frustrating because all of those things I needed him to do to help me and him and he still won't. That's why am so thankful for this site because everyone here knows what it's like and we know what we are facing and we have each other when even our families can't or won't try to help us.

Kate Watson  I agree with Catie- when people have said that to me, it just makes me mad or hurt because my feelings don't feel validated. This can be a very isolating journey. My surgery was 3 1/2 months ago and I'm still not myself, but I feel like friends and family think I'm just fine because I look normal. They never read my journals here but I think it's partly a coping mechanism for them- because the reality of my situation is scary to them and they don't know what to do for me. Fortunately, my husband did read Adam's book, and I think it helped him a lot. He has been my biggest source of support. So use this site for yourself, even if you can't get your family on here. There's nothing like getting support from people who know exactly how you feel.

  I felt the same way, Catie. It is frustrating. I did find that either a) people didn't understand the surgery, or b) they were secretly scared for me and didn't want me to be upset. My husband was very lighthearted about my surgery, but when driving me home, started to tear up and tell me that he was so scared and thought I was so brave. Hang in there. You have a community here who understand what you are going through. Continue to educate the best you can and lean on those who provide you the most support. Thinking of you.

Sue Pluta  Oh how I understand...I do have alot of support from family I have heard enough comments that I will be fine, stop crying, it's a normal procedure etc...I am petrified to death and can not believe that within 2 weeks of testing will be having a valve replaced and triple bypass. I so need all of your support and need to know what I will be going through...I am scared and will be there for anyone that needs comfort!

Dylan Florio  I can relate to what you are saying. That is why I was so happy to have found this website.
Only I got on as a caretaker for my 19 year old son who just had OHS.

I got the same kind of responses from family. They were acting like Dylan was going in for a dental procedure. It was very frustrating.

I was researching everything that I found on Dylan's medical reports. The more I learned and started talking to family and friends the more I realized they just didn't get it. I wish I found this site earlier.

But once I did and by the time I did I started looking for others that had similar conditions as my son. It helped me a lot just to know that everyone here knows the whole picture.

Stick around, you are already starting to connect with others who care and know the challenges you are faced with.

Rita Savelis  Yes, I hear you on that. And I am sorry for what you are experiencing.
Alas, you can't make someone see things the way you do. They are experiencing this in their own way, as caregivers and partners, and they are not having the patien's experience that you are having.
Perhaps they have their own ways of coping, that are different from yours. You can tell them how you are feeling but you can not make them have the reactions that you want.
They may be very frightened and so don't want to think about things that are hard for them.
My mother always said "Everything will be alright" and it drove me crazy, because I wanted her acknowledgement of how shitty it all was. But I know I can't change her and that she cares a lot about me and that I can not make her into the mother of my dreams who reacts how I would. My husband was there for me but drove me crazy sometimes. My son had to hear all my complaints, but ultimately they could never have the same experience I had.
Even on this site which is very helpful you will find others who think/react like you do and others who don't.
Continue to talk to your family, show them that you are vulnerable and ask them for small things, tiny bits of understanding....
Take care.

Ron Broadhead  You've been through a lot but are headed in the right direction. You have a great hospital with great surgeons. And the dental clearance and deep cleaning are big pluses. All the other stuff they'll be testing you for are just so that they know what to expect during your surgery. It seems like you've done all that you could. Anticipation is the worst part - soon you'll be on the other side and have all the benefits that the surgery offers. You will do fine. Prayers and best wishes for you.

Kate Watson  I agree it will be good to get the dental cleaning over with so you don't have to worry about it for a while. I did the same before my surgery and was glad I did. There's so many appointments before hand, it's like a full time job by itself. Wishing you lots of strength and calm in the coming days.

Kevin Shackelford  I had the same. I had a deep cleaning a few weeks before surgery. They gave me antibiotics before the cleaning. For your anxiety before surgery take a look the guided imagery on the Cleveland clinic web site. I downloaded these and it help my mental state quite a bit.

Maureen Breault  I'm almost ten weeks out from a very similar procedure to yours; aortic valve and ascending aorta replacement; mechanical valve and a Dacron aorta. The sternum takes a month to heal and yiu have to use the precautions they teach you in the hospital for 8 weeks. The first weeks are the worst and everybody handles the meds and anesthesia residue differently. Patience and complying with doctor's orders will keep you on the road to recovery. If you opt for a mechanical valve you will be on warfarin the rest of your life to keep the blood flowing smoothly. A bovine or pig valve does not require meds.
I highly recommend getting Adams book and reading it cover to cover. It helped me tremendously. This site is a good source also. You are fortunate to be at one of the best hospitals in the country. Take care.

Susan Schweter  My surgery will actually be at the Fairview Hospital which is a Cleveland Clinic location on the West Side of Cleveland. I was interested in Dr Svenson or Dr. Gillinov from Cleveland Clinic's main campus but have not heard back as of yet. My Cardiologist referred me to Dr. Gill. I was told by my Cardiologist o June 20th I needed the surgery/ I saw the Surgeon om July 18th and was given a surgery date of August 11th at that consult.

Rita Savelis  I also recommend reading up on OHS and your upcoming procedures. The sternum takes about 6 weeks to "heal", but that is a varying amount of time. There is more discomfort than pain, it's hard to describe. Every situation is so different. Recovery can be long, especialy tiredness. It's different from other surgeries. So having answers to your questions is good. I'm sorry that your hospital gives you surgery dates without a session of answering your questions.
You will have some medications at first, often diuretics and betablockers which can then be stopped. Most people also have some anticoagulants at the beginning which continue if your new valve is mechanical, and stop if it is tissue. But again, every situation is personal. I wish you the best. Take care.

Darlene Smith  Susan, I am 53 and writing from my hospital bed at Mt Sinai after successful mitral valve repair surgery on Mon July 18. First, you are far from alone. Second, if you don't have complete faith in your surgeon, find another one!! Third, find a way to accept your condition. Maybe counseling for that and the panic attacks. It's not worth it to live in fear! I researched, found the right place, and had a ton of fun until the night before surgery. You can do this. The mind is such a powerful tool!!!

Rita Savelis  What you are feeling is normal - anxiety and panic. Everybody's been there and sadly it is part of the process. I'm really sorry that you have to go through this, but take it one day at a time. You don't have to deal with 8 years from now, today. You don't have to have the time of your life. Just be. You're stronger than you think and you'll get through this.
Take care.

Pj Alexander  Susan: I'm 64 & had mitral & aortic valve replaced in Jan. It is very normal to feel such fear. I continue to recover & went back to work in April. I did as much reading as I could prior to surgery to know what to expect post op. I also talked to 2 friends about their experience. I had trust in my cardiologist who referred me to an incredible surgeon (Knoxville,TN). I would go to Dr. Appointments with my list of questions & my family asked theirs. With doing what I could, I prayed that God would be with me for all over which I had no control. It's a tough recovery but with a determined spirit, you'll do it. You can just do it moment by moment. Practice with the spirometer prior to surgery because you'll need to do lots of deep breathing with it after surgery. The surgeon or hospital should give you a booklet on what to expect in the hospital. It is essential to have a support person and/or a therapist. If you're having panic attacks call a therapist. Processing the thoughts& feelings will help as well as learning ways to breathe when you start to panic. It is scary but we often don't have a choice about having the surgery. I know it's hard not to jump ahead & worry about "8 years from now" but you can only live in the present moment, moment by moment, breath by breath. Assuming 8 years from now will bring certain things will only feed more anxiety. I'll pray for you. Remember.. Right foot, left foot, breathe, repeat. Pj

Clare Auten  I agree with the others. Try to find some local support for the anxiety and panic. I am one of the "success " stories. I am 48. My kids are 7, 10 and 13. I had my aortic valve replacement on 1/9/14, more than 2.5 years ago. I have no restrictions. I work full time, do things with the kids and do things at the house (even mow the yard). I am planning to have a lot of years left. Praying for you.

Peggy Whitecotton  It's normal to have fear and a lot of questions, but you are on a great web sight. We have all been where you are right now. But remember one thing, if you don't have this surgery you will die. The tissue valves they use can last 20 years or longer. I had a bovine (cow) valve and my surgeon says these valves are lasting much longer then before, he feels it will outlive me. I know we all hear of some, who's valve only lasted a few years and I used to worry about that, my surgeon says it's very rare. So I have decided not to worry but except this new heart of mine and enjoy my life to the fullest. My heart is a miracle I am alive. If I do need a new valve in the future they may be able to do the tavr.

Lise Bowles  Susan, I can sooooo relate to what you are feeling! I had no symptoms and went in for a routine physical 2months ago with a new gp. I had not had one in years, I had a bunch of other docs but not a general doc and at 61 I decided I probably better get one! Anyhoo, when she listened to my heart she jumped about 4 feet in the air and said, OMG, you have a really loud heart murmur! The many tests that followed, showed I have severe mitral valve regurgitation. I am scheduled to go to Cleveland Clinic on August 12, for surgery on August 16! Yikes! I would love to speak to you if you like, I will send you my phone number, We can panic together! 😍
Lise

Darlene Smith  Susan, I just saw your question about changing surgeons. I'd start with this website and see which surgeons are recommended for your type of valve surgery. Then search the internet and see if any of them are ones you want to talk to, call the office and see what they say. Get all your records, and start asking questions. I don't have all the answers, but I felt comfortable from the time I first called Dr Adams office. I'd recommend him if he did aortic valves, but you need a specialist in that area.