Did you copy my Bio?
Did you copy my Bio?
Hey, Larry, with a few exceptions, you could substitute my experience for your's. I didn't have a heart murmur as a child but when I changed doctors several years ago, I did have the "has anyone ever told you that you have a heart murmur?" moment. I also had the experience of going to my cardiologist to review the echo-cardiogram only to hear him say "Oh, this can't be right." Then a couple of weeks later to be told that surgery was not a year or two away but needed to be done in the next few weeks. It certainly made my pulse rate rise.
Larry, the good news is that your doctor caught this now. Your pressure gradient is high but it is not yet as high as mine got before surgery (max pg 135 mmhg) although my valve area was just about the same as your's at 0.75 cm2. My cardiologist and surgeon also wanted a heart cath just before my first meeting with my surgeon so that he would have better information than the echo-cardiogram can provide.
It is a lot to take in at once, Larry. What! Heart surgery now? Me? Are you sure? Can this really be happening this fast? Are you sure there hasn't been a mistake? But, Larry, with the way I was feeling at the time, I really knew there was no mistake.
My Cardiologist recommended a surgeon and got me in to see him for the first time about a week and a half after the heart cath. At our first meeting, he answered most of my questions and reviewed the options that he believed would give me the best result. We also set the date for the surgery and scheduled a final appointment with him the week before that date. At our second meeting, we agreed on the basic things such as valve type, incision, method of closing the sternum....and then talked about the routine of what I could expect after I got to the hospital and after I woke up in the ICU following the AVR. From my first visit with him to surgery was four weeks but that was only because I wanted to finish a project at work. He would have scheduled surgery sooner if not for my preference.
Larry, it is better to do this without a lot of delay because it sounds as though your valve is degrading rapidly now just as mine did. The longer you put it off, the worse you will feel. By the time my valve reached 0.75 cm2 I was terribly short of breath after walking even a short distance. I had heart palpitations that left me exhausted after sitting in a chair for a couple of hours and I had begun to have radiating chest pain. Looking back, I wasn't much help in the office during that last month; it would have been a little better for everyone if I had scheduled the surgery at my surgeon's earliest opening. There, that's my two cents worth.
Do you have copies of your most recent tests? That's something I would encourage you to do from now on. Ask for copies and take them with you. However shocking, once in awhile you can speed things along by speaking up and offering your copies if they cannot find their own. As well, having your test results allows you to better understand the state of your own health. At this point, I would assume that you have had several echo-cardiograms. As you seem to know already, it isn't too hard to learn to understand the basic information included on those reports. Knowing what the reports say can better prepare you to speak knowledgeably with your surgeon. My experience was that as soon as my surgeon realized I had a good grasp of the state of my heart's health and the disease process, he began speaking to me much more directly. A lot of people just don't want to know the details and for them the "Just fix me, Doctor!" is enough; after all, isn't surgery just magic?
I wanted to be able to participate in the decisions to be made and to at least understand the options that were available. These include things such as the type of heart valve, the type of incision, the method of closing the sternum, etc. I came to trust my surgeon and I followed his advice but I also understood why he guided me in the direction he believed best. Now, a year and a half later, I am very comfortable with everything that was done and I've spent no time looking back wondering if my surgeon did the right things. This process of the questions is on the one hand a search for information but it is also an important part of the process of developing confidence in the abilities of this doctor who is going to hold your heart in his hand.
You are not alone in feeling that all this can be overwhelming. So to deal with it you take little bites. There is no better place to start than knowing what your test results say. After that, this community here in VR has been a wonderful resource and an indispensable source of support for me. Now I get to be one of the supporters. If you have questions, please ask us. On those days when you just want to curl up and wish it would all go away, share your experiences with us and we will understand how you feel and tell you how we dealt with it. For me, discovering this community was so wonderful because, suddenly, I wasn't alone anymore with no one who understood what was happening to me. We are here, Larry, use us; we understand how you feel and you are not alone.
I can also recommend a very good book which talks about both the psychological problems associated with heart surgery and some practical things one can do to make the experience run more easily.
Coping With Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional, and Practical Issues
In case they can be of help, here are the questions I took with me when I first spoke with my surgeon. By then, I was having problems remembering things so I wrote them down and took the printed list with a copy for the surgeon so he could follow along. There is nothing sacred about my list. Some things may be of interest to you while others will not be. It is only electrons, Larry, use it as you wish.
BEFORE SURGERY
01 How many AVR do you perform & what is you win/loss record?
02 Based on tests, do I have permanent damage to the heart?
03 What are my personal risks & prognosis?
04 Will I likely need a blood transfusion? Can I bank my own?
05 What kind of repair to recommend for the aorta?
06 Who do I speak with concerning the status of my personal representative /executor of my medical directive - does hospital require power of attorney to insure he has access to all my information?
07 What kind of pre-surgery patient education is available?
08 When will I check into the hospital?
09 Are you going to need any more testing before my surgery?
10 What is the pre-surgery hospital routine?
11 How long before the surgery will I need to enter the hospital?
12 What else do I need to do to prepare for the AVR? See the Dentist?
SURGERY
13 What will be the date of Surgery?
14 What type of chest incision and how many small incisions for drains?
15 What type of valve and model?
16 What type of sternum closure? Sternal Talons?
17 What are the determining factors in valve longevity?
18 What valve would provide the best hemodynamic performance
19 Will I need Anticoagulation Therapy?
20 Is my valve be bicuspid?
21 What is the likelihood of connective tissue disorders?
22 If Bicuspid, what is involved with stabilizing the aortic root?
23 Based on what you know, do you anticipate any difficulties?
24 How long should the surgery take?
25 If my friend and brother are here will someone give them a progress report?
26 Can I get a photograph of my old valve?
27 Will someone speak with my friend after the surgery so that he can inform my family?
POST SURGERY
28 How long should I expect to be in the ICU?
29 What is the post surgery hospital routine?
30 Will my daily care be managed by a Hospitalist and if so
does he or she have a specialty in heart surgery?
31 Approx how long will I be in the hospital?
32 What potential problems should I be concerned about after surgery?
33 How do you determine I'm ready to leave the hospital?
AFTER RETURNING HOME
34 What limitations should I observe when I go home?
35 How long before my incisions heal? My sternum?
36 What followup should I expect with my surgeon during the weeks
after being released?
37 What new medications should I anticipate needing and why?
38 How concerned should I be about using pain medication at home?
39 During recovery what are the problems I should anticipate and who do I call?
40 Talk about the various roles of my family Doctor, Cardiologist and yourself
after surgery.
41 I have Pollen allergies - what antihistamine should I use?
42 Post operative depression – should my family Doctor address this issue?
43 How long should recovery take before Driving, Cardiac Rehab, Returning to Work, Sex?
Larry, sorry for running on so long, take care.
Larry
Tulsa, OK
