Thank you for replying to my journal update, especially when you are so close to your own surgery. It is good to read each other's emails! I sure identified with what you said about "losing it" some days -that happened to me this past week twice and it was over such small stuff. Am doing better today, and hope you are as well.
I hope and pray the best for you this week, as you approach your big day and then getting through it. Hang on!
Thanks so much for your kind note and thoughts! I wish all of us well - I love this site; I am slowly going through all of it - it is a wealth of information and support.
Hang tough.. I will follow your progress, too!
Kate Rooney :)
Hi Cindy - after reading your post on my journal I decided to look you up and see where you are in your jouney. Wow - surgery in just 4 days - I will watching to see how you do. You will be in my thoughts and prayers on the 7th. Take care and God bless you!
Hey, Cindy --
Just checking in to see you you are doing as our days grow closer. It's incredible how this huge group of people, all ages, all religions, all over the country, seem to share the exact same feelings as the day approaches. I'm keeping myself really busy at work, trying to keep the jokes coming and truthfully, most of the time it's all fine.
I have my pre-op this Friday; a week from then, it'll be done.
I'm soooo ready.
Hi Cindy, you are in the home stretch now. If it has not happened yet, you likely will suddenly get calm right before surgery as you realize you are ready. You have done all the homework, you can and will do this. You have the easy job, show up and go to sleep. The dr and your family have the harder part. Well not really your doc, this is just another day at the office for him. Good luck, it will be over before you know it and trust us when we all say, the waiting is the hardest part.
Hey Cindy, I was just thinking about you, wondering how you were doing. You are getting pretty close to going over the mountain. You are going to be just fine and will shine. I think it was Mitch that said to get a mantra to focus on when you go in.Make sure you have someone post on here so we all know. You will be in my prayers along with everyone else. God will be there holding your hand. Good luck.
For the long haul
I can sympathize with your roller coaster emotions. I'm not quite sure what I want people to feel. I certainly don't want people to tell me everything will be fine...how do they know? I'm having OHS! It may not be okay. But then on the other hand I don't like it when people act all serious and grave. That's when I start making jokes and tell them it's going to be fine. I don't know...I'm all over the place.
If I act concerned around my husband it causes him to freak out.
I am grateful for HVJ. It's a good place to vent.
If you'd like to email me privately, please do. We can commiserate as our days approach.
Attack the process now, Cindy.
You're ready. I'm a few weeks behind but we know all we're going to ever know, we have access to amazing doctors and we're in communication with a whold community of success stories. Get yourself fixed! It's your turn and it will be great. You know that.
I look forward to your update and thanks for sharing.
You're welcome Cindy. Anytime! I see you decided on a Ross. That is great. We will welcome you to the club with open arms. Who is doing yours? I know its one of those great docs in Texas that does them. Was it Ryan? Or the other guy, can't recall his name now. Hang in there and stay positive. Listen to guided imagery CD's/MP3's. Made a HUGE difference for me. I will sign up for updates from you now. My birthday is May 8th. When I blow out my candles, I will say a wish for you too. (You'll be in recovery and on your way to greatness)
Your experience is why we all reinforce that the waiting it truly the hardest part. The feelings you've been through are normal and the vast majority of us have felt exactly what you are feeling. I lost my mother almost 5 years ago, but luckily when I broke down, I was sitting on the couch with my wife. Like you, it was about a month prior to the surgery.
You will get through the waiting. And yes, the fear will creep into your thoughts now and then. When it does, try to lean on those of us that are on the other side. We will cheer you on.
I also want to reinforce what Linda Dixon wrote below. The breathing tube is not a big deal. Mine was just like hers. They told me to cough and it was out. The PIC line in my neck was a breeze. I actually had a nursing student pull it out the day before I left the hosptial (I was in a teaching hospital). I honestly didn't even feel it as it came out.
You're going to do fine. You're going to be surprised at how quickly you start to recover. The two things I want to emphasize as you heal -- walk and use your spirometer as often or more than they recommend. The spirometer will be a love/hate relationship, however it really, really helps.
Hey Cindy, You might not be able to talk but we can write lol. It sounds like a bad time at the dentist. I dont like them either as I had a bad time with one a while back. At least your getting this out of the way early before your big day. When my daughter had her surgery she just had a wisdom tooth taken out a few days before. She had a horrible time with the spirometer drama. So at least you have some time to get better.Just take it easy and enjoy this time. Everything is going to be fine and Cindy you can do this. Hang in there.
For the long haul
Hi Cindy, I'm just reading your post now. I'm sorry to hear you were having a rough day. I can't believe you can't brush your teeth! Sounds like you're doing better now. Soon it'll all be over. Have fun at PF Changs! Lily
Don't worry about breaking down. Several days before my surgery I found myself afraid and angry at the world. I clearly handled it less well than it sounds like you did, unleashing a flood of negativity on my mother who simply wasn't equipped to deal with my fatalist thoughts.
Know that you're going to get through it. You'll have a lot of swirling emotions for a while and it's perfectly ok to deal with them and to let off steam when you need to. We all deal with our fears in our own way.
That said, I recommend you get out of bed and walk just as soon as the doctors will permit it. I really pushed myself in this area and it has contributed to a much faster recovery. My OHS was on 1/25 and just this week I was able to work up to running 2 miles at a time in only the 3rd week of being cleared for exercise. I can't tell you what beginning to feel physically able again has done for my mindset.
Keep your chin up, Cindy. Welcome to the zipper club :)
Cindy, the breathing tube was also what I feared the most. I hoped I would not remember it. I do, but even that was not so bad. I just kept telling myself, it doesn't hurt, just feels little strange, relax and then they said, "Linda, we're going to take your breathing tube out...give us a good cough" and out it was! Even taking it out was not as bad as I had prepared myself for. I'm serious, be prepared but not overly anxious and it's really out very quickly. Mine was in for a couple of hours after arriving in ICU, but it only seemed like a couple of minutes. Everyone dreads the breathing tube. And the needle in your neck...I never saw mine and really didn't feel it, knew it was there, but barely remember them taking it out, so obviously that wasn't so bad either.
Hang in there...soon you will be "on the other side".
Yeah, that was me....I always forget to sign these things!
For sure, we'll hold each other up. I'm also more scared of the breathing tube than anything else (which is absolutely typical, I guess) and when someone here wrote that they threw up while it was still in, that about put me over the edge! (Big help, I know, right??) SO....we are going to remember at our pre-op appointments to tell our anesthesiologists that we request anti-nausea meds that will take effect BEFORE they take the thing out. Plan? Hopefully, we'll be two of the lucky ones who don't remember a thing. :-) Hey, we made it through the dental work, we can DO this!!
It's OK to feel that way! I think as long as you acknowledge the fear, anxiety, whatever and cry if you have to, you are then better able to keep moving forward. I think letting it out is better than bringing that tension with you into surgery. You will do great!!
Hi, again, my "sister in surgery!" I swear, I could have written your post. It's amazing how the emotional ups and downs wash over you. For me, the trick to handling the occasional times of fear and big emotion is to accept that it's natural, honor it, and move on.
We WILL get through this; 2 months from now we'll be comforting people who are where we are today. I'm glad your mom was able to help you through it. I still haven't told mine (she's 96 and, while she's 100% with-it, I'm not sure I want her to be worrying for the next month!)
Cindy, the meltdown is completely normal! We all have our "moments", some call it the big cry, others meltdown...whatever. It is part of the process and you needed it! I had AVR on March 13th and I PROMISE you it was not bad at all! I was so prepared for it to be awful and it just was not. I thought everyone was lying about waiting being the hardest part...but believe me...it is so true. You are going through the hardest part right now! You have your meltdown out of the way, now it will get a little better. Those thoughts will never go completely away until your surgery is over, but they sort of just get out of the way so you can get on with getting ready and prepared. I wasted way too much energy worrying during the waiting...I promise you will do great...it's not exactly a vacation, but it is not so bad. Hang in there!
Linda Dixon, AVR 3/13/2012
Stay strong! Keep in mind, those of us who have had OHS have been there. If you've read my early journal entries, I went through the same thing. I had my fair share of uncontrollable emotions. As others here have said, the waiting and worrying is the worst part. Hang in there!
Hey Cindy. Its Stephanie...from Louisville. Just wanted to thank you for your note on my guestbook. It helps to get little notes here and there from those going thru similar or the same issues as I have had. I have received good feedback about cardiac rehab so perhaps that is the ticket! I also wanted to wish you good luck since May 7th is fast approaching. Im sure you will do great. Thanks again for lifting my spirits!
I had my final dental clearance visit this morning, too! My life-long dental phobia led to a situation that needed treatment. The treatment (which I dreaded) wasn't that big a deal. I had it 3 weeks ago, and today she gave me the all clear for my surgery. So...that's that! Hope all went well for you. Take the pain pills and have a nice lie-down.
It's another hurdle, this visit to the dentist, but I know that you'll clear it. And you're getting closer to your fix the heart date. I had an implant five or six years ago, and the dentist gave me the right mix of sedatives and pain pills - for me, there was no significant problem
- Jim Smith
Good luck at the dentist. I recommend "sweet air" given your apprehension about dentists. This will relax you considerably. I used to have a fear/dislike of dentists, so much that I didn't go for 10 years! I finally went and told the dentist that I really didn't like dentists because of a bad childhood experience. He was very gentle and suggested the sweet air. After major root canals and all sorts of things, I finally relaxed enough not to need sweet air and now I go to the dentist every six months. In fact, I don't mind going to the dentist anymore and I love my dentist. Good luck again! Lily
Great news that your plan is in place. I felt much relieved when after my consultation with my surgeon, when we then set the date for my valve repair surgery (3/13/2012). This dental clearance is normal; I had to get that taken care of too. Blessings
- Jim Smith
Sounds like you're well on your way. I hear you about the information overload....but I truly think that's half of why this process is going so well for me. The other half is the HVJ support. Knowing what's coming helps so much to allay the fear and anxiety that accompanies the unknown. Plus, being in TX, you're in the land of amazing heart surgeons, too. Lots of great options.
Looking forward to your check-ins as the day grows closer.
Great you are getting info and making decisions Cindy. Check out Jeff Shebovsky and Chris Dixon, they are the Ross Twins. Both had it done a few weeks ago in NYC. Both great guys who old be glad to speak to you if you have any questions.
As you get further into the process, you will get calmer. The waiting is much worse than the actual event.
Two hours? Wow, it's no wonder you feel overwhelmed! You must have gotten a ton of information. I would guess it will take a while to sink in. How is your husband handling it? I think it really helps them to bea part of the whole ordeal. I tend to handle things on my own but am trying to let me husband be more of a part of this as its a biggy.
I knew this would happen some day but I just didn't expect that day to come so soon. Whatever you need all you have to do is ask and I mean that. You must be a bit scared but you're a strong women and will be just fine. You have so many people that love you and we all will be praying for you.
Love you my friend,
my pulmonary hypertension (or lack thereof) came up when I mentioned the shortness of breath I'd been having. I guess the jet of regurgitated blood shooting back into the atrium could be blocking some of the blood tha should be going to my lungs (or something like that).
Hey Cindy...I echo what Mitch wrote below. I am 47 and chose tissue. There are pros-cons with each, so you just have to come to your own conclusion of whats best for you. I am on no medication except for Metoprolol (beta blocker) to regulate heart rate...1 pill a day, along w/ a baby aspirin.
I also had the sore knot from my cath during my surgery. I actually had to have an echo of it done 2 days after I got home from the hospital. It turned out to be nothing serious and it slowly went away over about 2 months.
Keep posting your questions and know you will receive a ton of great advice and support here.
I also had an issue with my cath. The next night I had a raised area and went to the ER. I ended up with a huge bruise that went all the way down to my knee. It was an encapselated Hematoma. It didn't mean anything, but it was a little scary, after all they were in my artery the day before.
It didn't effect anything. I had my surgery 5 days later.
Jane (13 weeks out).
Hi Cimdy, glad to hear you got the cath down and it was not too bad. Coumadin is part of the valve decision you will need to make IF they decide you need to replace your valve. For now, see what they have to say, do your homework on what the limits are that apply to your condition and then see where your numbers are relative to the limits. If it needs to be replaced ask the surgeons and cardiologists their thoughts on valve. Often times for younger patients like us, I am 47, they knee jerk and say mechanical so you don't have to worry about reop. If you go mechanical then you have to contend with Coumadin.
I can tell you most of the leading centers sway you towards a tissue valve because of the Coumadin risk and because they feel reop will likely not be open heart when you need it. I went tissue. For you, for everyone really, the right answer is the one that makes you most comfortable. There is no right or wrong when it comes to valve choice.
Good luck, keep doing your homework and keep getting information. You will hit a point when you are comfortable with all of this and then you know you are ready.
All the best,
AVR & root repair
Hi Cindy, welcome to HVJ. I just got home from my 2/2 surgery and just getting caught up. This site is amazing, a truly great resource. Surgeons will use the results of the cath you get now, plus it needs to be done at some point. So, go for it, but get a copy on a disc. Good luck to you.
Hi Cindy. Here are the guidelines for getting a cath for patients with aortic stenosis per the AHA/ACC Guidelines for the Management of Patients with Valvular Heart Disease (Google the title for the full pdf document):
3.1.5. Indications for Cardiac Catheterization
1. Coronary angiography is recommended before AVR in patients with AS at risk for CAD (see Section 10.2). (Level of Evidence: B)
2. Cardiac catheterization for hemodynamic measure- ments is recommended for assessment of severity of AS in symptomatic patients when noninvasive tests are inconclusive or when there is a discrepancy between noninvasive tests and clinical findings regarding sever- ity of AS. (Level of Evidence: C)
3. Coronary angiography is recommended before AVR in patients with AS for whom a pulmonary autograft (Ross procedure) is contemplated and if the origin of the coronary arteries was not identified by noninvasive technique. (Level of Evidence: C)
1. Cardiac catheterization for hemodynamic measure- ments is not recommended for the assessment of sever- ity of AS before AVR when noninvasive tests are adequate and concordant with clinical findings. (Level of Evidence: C)
2. Cardiac catheterization for hemodynamic measure- ments is not recommended for the assessment of LV function and severity of AS in asymptomatic patients. (Level of Evidence: C)
If surgery is planned, then a cath is common unless you are at extremely low risk of coronary artery disease. You can print out the guidelines and take them to discuss at your next visit.
Cindy, for the most part I feel fine. From time to time I have what I guess are palpitations, but no major symptoms. That's one reason it came as such a shock that my valve has deteriorated to the point that it is time for surgery. I will just be glad to get it over with. I'm tired of thinking about it, lol. Keep me posted...so when is your cath?
One more thing...lol...if you have a cath now, the surgeon will more than likely use that one rather than make you have another one, assuming you have surgery. I had my cath in November, they are using that one at Cleveland Clinic. If I had not had one within 6 months, then I would have had to have another one. I found this to be true at the other facilities that I consulted with. Hope this helps.
Cindy...one more thought about the cath. It is possible that the doc recommended the cath because of something on the stress test. May not be related to the aortic valve issue, so I would not dismiss it without asking exactly why he wants the cath. It may be a long time (years) even before you need surgery for the valve. I have been <.9 for several years. Talk to your doc again about why he feels you need the cath. Good luck and I am happy to talk with you any time.
Getting closer...Linda Dixon