It's Time and I'm Scared and Confused

[tigerlily]

Hello all, I had my last pre-surgery test yesterday and then we had a talk with my surgeon. It's left me with a mix of questions and feelings and I just need to talk and express how I feel. I knew this day would come. I received an Edwards Bovine Tissue valve in March of 06 for my aortic valve. It has been calcifying and needs another replacement soon. So I knew we would probably be discussing surgery dates yesterday but still it's a reality check and an adjustment. I'm 66 and we are talking about replacing this valve with an Inspiris Resilia valve by Edwards which I really would like to have. The surgeon I'm working with on this replaced my first valve and he would be replacing the second valve. All the tests are looking good. The Cath showed no blockages to worry about, The TEE showed a valve that needs help! (We knew that) and I had a CT scan with dye yesterday that shows my aorta looks good. The Aorta is not enlarged but my surgeon put a reenforcement graft on it the first surgery I think just as a precaution. I found out that I never had a bicuspid valve! It was a normally formed valve but for some reason had calcified by the time of my first surgery when I was 53 years old. That threw me. I had always thought that the original valve was bicuspid. Yesterday was weird. First I went to have the CT scan with dye. They couldn't find a vein and after three tries they had to call in a specialist who deals with that. He used ultra sound to find a good vein and I had to wait 30 minutes for him to show up. They didn't tell me that it might take a while for the vein specialist to get there and not knowing made me nervous. The delay threw my appointment with my surgeon by 30 minutes and that made me anxious too.

I thought the appointment with my surgeon would be to discuss test results and it was but just different than I imagined. I thought for some reaon I would be in a conference room but I was in an exam room. Please excuse that this is so long. I don't mean for it to be but I'm getting my thoughts and feelings out and I need that right now so much. So please bare with me. When my surgeon arrived, he didn't remember meeting my husband before. The first meeting was from a few weeks ago so I guess I can understand that but I didn't like it. My surgeon seemed confused about the TEE results because they hadn't showed up on my MyChart and wasn't sure if I had had that test. I was confused about why they hadn't showed up on my MyChart account also but he was able to locate them after a short search. He explained what had happened but now I don't remember the reason. All my tests look good so far and no complications to worry about. My surgeon is Dr. Lance Landvater at UNC Rex Hospital in Raleigh, NC if anyone knows him. He is not known for his personality but that is of small importance to me. I asked him about why a tricuspid aortic valve might calcify by the time you are 53. He didn't have a good answer for that and I guess no one does. I got a fair run from the valve I have now. It will be 13 years old in Mar. 2019. It just makes me wonder if the next valve will last longer if I have a tendency for some unknown reason for it to calcify. I know the Inspiris Resilia Valve is supposed to be better at resisting calcification but only time will prove that for sure. Dr. Landvater suggested that the valve be replaced before February to insure it doesn't suddenly take a dive. The sooner the better more or less was the message. Even when you are prepared, it's shocking. I could have surgery done even as soon as before Christmas.

So I guess this is the bottom line of my concerns. I had expected my surgeon to be calmly waiting for me in a conference room but that didn't happen and the small exam room threw me. He didn't have all the test results in front of him and I thought he would and would have had a little time to look at them also. He is my age and we are both older now so that concerns me a little although I've met with him two other times over the past year and a half concerning this upcoming surgery and he's been fine, it just seemed like he was not as prepared for our meeting yesterday as much as he has been in the past. I was in shock although I shouln't have been since I knew this was coming and that colored my impression of events yesterday considerably. I don't have a lot of time. The TEE showed the valve is at .05 although Dr. Landvater did not believe it's that small. He said if it were truly that closed this would be an emergency but my other numbers don't support that it is really that closed and also he explained that the image angle can make it look smaller than it is. I guess the bottom line is that I wish the two appointments yesterday had gone a little more smoothly from the stand point of reassuring me that I'm in really good hands still.

Thank you all so much for letting me ramble. I may have one more test before surgery, a dobbler to take a look at my carotid arteries only because my CT scan for my cochlear implant showed some plague build up there and I wanted to be certain that it wouldn't be a problem.

Christmas is coming and I think everything is all a little too much!

 

[tom in MO]

I know how you feel. I found out about my need for surgery after Thanksgiving as well. It's hard to be Xmas cheerful with the sword of AVR hanging over your head. After my cardio told me, I went in for a routine checkup the next week and my internist didn't like the sound of my heart, so he put me on the EKG...couldn't interpret the EKG because it was too complex for a regular doctor...since it was 5 on a Friday before XMas he couldn't find a cardio to look at it...he called ahead to the ER and then drove me around the block to the ER (to make sure I went) just so the ER cardio could take care of me, but only after being admitted to the ER. I had family and friends who were going out for dinner with me at the time. I had to tell them go ahead w/o me I'm in the ER, but don't worry, it's just my doctor being overly careful. Merry Christmas...baby Turned out the EKG was just saying I needed an AVR, which came about 6 weeks later.

I know what you mean about older doctors. I'm 60, so I know I'm not at the top of my game, but I am still better than my 30 and 40 yo coworkers, unless it comes to late nights My internist is retiring but has trouble finding my test results in the computer and is childlike happy when he can. Doesn't give a good sense of security to the patient. However my much younger urologist can find the record, but doesn't read to the bottom of the page because he uses his Ipad that doesn't display the full record. Both young and old doctors have steered me right. If my internist isn't available, I get the 70+ retiree, and he's a hoot, but still has a good practical effective approach.

We have to remind our self that doctors are human, make a decision and trust God and the fates.

You can always schedule another appointment and ask some hard questions "Sir, I really appreciated your work in the past, you saved my life. For this particular operation, are you the right surgeon? Are you familiar with the Inspiris Resila? I want a second opinion, can you recommend another surgeon?" He might be insulted, but you are the patient.

You could also talk to your cardio. My surgeon was picked by my cardio, when I asked why him, I was told he was next on the list. I asked do you know him, and was told not really, but he's got a good reputation. I asked would you have your valve replaced by him, and was told Yes. I looked him up on line and he had a good reputation and was a participant in the TAVR trials so I figured he was up-to-date.

Good luck. If you pray, I find it helps and is calming, especially rote prayers. Godspeed.

 

[tigerlily]

Tom in MO, you don't know how much your response is appreciated. It helps so much! I do pray but I've been sort of a mess since yesterday... I knew this was coming mentally but not emotionally. My surgeon use to practice at WakeMed in Raleigh and now he is at UNC Rex in Raleigh. I referred myself to him because he did my first surgery. I don't have a cardiologist at Rex except for the Cardio my surgeon set me up with to do my Catheriazation and TEE and he was great! I know the answer to some questions like is he familiar with the Inspiris Resilia. It's practically all he uses now when not doing mechanicals. He likes the valve a lot. It's funny but I don't think he remembers that I was probably the first person to ask about it over a year ago now. At the time, he was skeptical and said everytime they come out with a new valve they claim it will last longer. He is still skeptical about how long it will last but he loves using the valve. Thank you for sharing your story. Did you wait until after Christmas to have the surgery? I was told not to wait as long as March and my husband thinks he heard February because I could go into heart failure if this valve suddenly took a dive. I feel sooner is better than later because I've scheduled other surgeries not related to my heart before and for one reason or another they were postponed. You never know about weather and illness, etc. You've helped me calm down and relax a little. The fact that Christmas is coming up fast makes the timing harder and I know my surgeon will be out of town first week in January. I'm thankful I don't have small children counting on me to make Christmas happen. So the timing is pretty much my choice. Speaking of weather, we are expecting a big snow storm here this weekend. That is extremely unusual for my part of the state! Thanks again and if I may ask, please keep me in your prayers.

 

[Paleowoman]

Hi tigerlily - I found out I needed surgery just over a month before Christmas (five years ago) - I opted to have surgery after Christmas in the January so that I could at least feel fit enough to enjoy Christmas, and I made sure I did. I regret that my surgeon scheduled surgery for the first week in January as that was probably the busiest the week in the hospital - so many specilists are away over the Christmas period they would appear to only do emergency surgery then, so the cardiac ward was extra busy that first week in January. My own cardiologist was away the first week too so I didn't get to see him until nearly discharge day.
Take care, look after yourself !

 

[jwinter]

tigerlily, I am sorry you have so much to deal with at this time. From the outside looking in though, all looks about right. Some of the things that happened to you have probably happened to all of us at one time or another. Breathe deep. You sound just like me when I had a little nurse come in and take my hand......told me it was too much to carry alone and that I had to hand it over to a higher power. What other choice did I (or you) have. When it becomes overwhelming and you can't carry (or control) it you just have to give it up to Him. Not overly religious here, just spiritual. Christmas will come and Christmas will go but the time now is for YOU.

Take good care of yourself, don't over do things and get that little bag packed. Better days are coming and have your Christmas celebration later on. I will be watching for your future posts.

 

[LondonAndy]

I can understand your dismay at finding your surgeon not 100% up-to-speed on your case, Tigerlily - we need them to give us that reassurance when our life is literally in their hands, but as Tom has said, they are only human too, and the fact is we are just one of many patients, and maybe their workload is not allowing them enough time for us. However, it sounds like you got him back on top of things, and we do need to be strong advocates for ourselves, and not be afraid to ask questions. This doesn't always come naturally of course, and also the workload is what is giving him the experience to be great at what he does, hopefully at least!

Myself I would not be worried about his age, unless with the benefit of meeting him you think he is mentally less adept than he was or something. I am more inclined to value the experience.

Regarding calcification: are you on any other medication? I am an insulin dependent diabetic, and because of our family history I have also been on one statin or another to keep my cholesterol in the good range for around 30 years. However, my surgeon said that they now realise the combination of statins with insulin contributes to calcification.

Finally, I agree with your view to have the op as soon as possible, though as Paleowoman rightly points out, holiday seasons affect surgeons and their support staff just as much as other sectors, and it is good to have full support available for anything needed. If you are getting short of breath rapidly on exertion, you may end up going in as an emergency case, as I did whilst waiting for a decision on test results, ending up having a "cardiac event" (I thought it was a heart attack, with nausea, sweating and dizziness. But apparently no damage was caused by this and I was already in the emergency ward and the AVR followed a week later.

 

[tom in MO]

Tom in MO, you don't know how much your response is appreciated. It helps so much! I do pray but I've been sort of a mess since yesterday... I knew this was coming mentally but not emotionally. My surgeon use to practice at WakeMed in Raleigh and now he is at UNC Rex in Raleigh. I referred myself to him because he did my first surgery. I don't have a cardiologist at Rex except for the Cardio my surgeon set me up with to do my Catheriazation and TEE and he was great! I know the answer to some questions like is he familiar with the Inspiris Resilia. It's practically all he uses now when not doing mechanicals. He likes the valve a lot. It's funny but I don't think he remembers that I was probably the first person to ask about it over a year ago now. At the time, he was skeptical and said everytime they come out with a new valve they claim it will last longer. He is still skeptical about how long it will last but he loves using the valve. Thank you for sharing your story. Did you wait until after Christmas to have the surgery? I was told not to wait as long as March and my husband thinks he heard February because I could go into heart failure if this valve suddenly took a dive. I feel sooner is better than later because I've scheduled other surgeries not related to my heart before and for one reason or another they were postponed. You never know about weather and illness, etc. You've helped me calm down and relax a little. The fact that Christmas is coming up fast makes the timing harder and I know my surgeon will be out of town first week in January. I'm thankful I don't have small children counting on me to make Christmas happen. So the timing is pretty much my choice. Speaking of weather, we are expecting a big snow storm here this weekend. That is extremely unusual for my part of the state! Thanks again and if I may ask, please keep me in your prayers.

Well I wrote you a reply on Monday but the gremlins got it and it never was posted.

I will and have included you in my prayers. I was asked at the dinner table after the blessing "Who's this tigerlilly?" then after the answer "How do you know her?"

When I was told I needed surgery, it was on the phone and I had trouble believing it since I was asymptomatic.

Then on the feast of the Immaculate Conception (12/8), I got severely dizzy leaving the church and had to grab onto something. It "rocked my world". I went to see the cardio and he "picked" me a surgeon and talked about tissue vs. mechanical. I did a lot of reading, found this forum and I went to see the surgeon and then back to the cardio. I had trouble deciding. I say the rosary and it helped. Plus, I was told by the cardio "Get it fixed within at least two months or you may suffer the "syndrome known as sudden death." That really helped me to focus. By this time it was early January, my daughter's birthday was 2/16, so I scheduled it for the next week. I wanted to be "whole" for her day, not in the hospital. Afterward the surgeon told me that the valve was shot and on its last legs and it was good I didn't wait any longer. I guess I was lucky. Don't wait too long to decide.

 

[tigerlily]

Hello, everyone and thank you for replying to my post. I was obviously experiencing a lot of confusion and uncertainty at the time. Your posts have been so helpful. Everyone is so different and it's very interesting to hear each story. I have my surgery date now but I will put info about that in another post. Thanks again.