Anna's Journal

Well, it has been a year since my surgery. My scar is a thin white line. I find it very noticeable, but at the same time I do nothing to hide it and sometimes show it off as a badge of courage. My pulse has not decreased and is still in the 90's resting. My blood pressure is still often low. I am still exhausted constantly. I am no longer on any medication... which is lovely. I had an echo immediately after the surgery that showed the mvr was fixed. I haven't seen my Cardiologist since November 2018. I have an appointment with him in November 2019. This is the longest I have gone without seeing a Cardiologist in years. The ocular migraines are now infrequent. The surgery forced me to close my business. That was something I had to come to terms with. I was hired by a major corporation. I have never worked for anyone but myself before, so this has been an adjustment. My husband and I have been on vacation. We are working on remodeling our home. I guess that is all the big stuff. There are very few times I think about the surgery. I was shocked to realize it was a year ago! I remember how frightened I was and how wonderful and informative it was to read the stories from people who had been there too, so I wanted to stop by to give some encouragement to everyone. This is really just a little blip in time, your future is waiting ahead.

"Life is full of changes." That is what my late husband said to me when I told him I liked things as they are. He said: "get used to it." Eleven years ago I moved to a new state. I started seeing a new doctor. This practice helps to train medical students. Whenever I went to the doctor there would be a knock on the door, and someone would say: "hello, Anna. This is so-and-so a nursing student/medical student/PA, and we would like her/him to listen to your heart". There would be that silent moment, and then I would see eyes widen and a smile, and they would exclaim: "I hear it! It's really loud!" And then they would leave the room, and I would know that at some point in the future, this person will graduate, and will hear an ill heart and it will be because my heart taught them something of value, and we will have saved another's life. Perhaps they will even find their way onto this site. Amid all of the fear and worry of pending surgery, helping to illustrate a heart murmur gave me a sense of pride. Since the surgery, I go to the doctor's office and there are no knocks on the door. No students are waiting to hear my heart. It sounds normal these days. There has been a change. I will get used to it :-) Best wishes to everyone waiting for your surgery. Have faith and peace, a merry Christmas, and a wonderful 2019.

ScieGen has launched a voluntary recall of some lots of the angiotensin II receptor blocker (ARB) irbesartan due to the presence of N-Nitrosodiethylamine (NDEA), a known animal and suspected human carcinogen. ... The recall affects roughly 1% of the irbesartan drug products in the United States, FDA said. This is the second ARB to be recalled. Valsartan was recalled several months ago. If you are taking either of these medications, please contact your cardiologist. https://www.cnn.com/2018/10/31/health/fda-recall-heart-drug-irbesartan-bn/index.html

I looked it up on the computer: it is 12 weeks, or 87 days, or 2,088 hours, or 125,280 minutes, or 7,516,800 seconds since my surgery. It's amazing the calculations the computer can do for you. I feel fine. I went to the Cardiologist yesterday because the nurse at the cardiac rehab told me that my diastolic number has been too high and I needed to see the Cardiologist immediately. I don't know why I believed her as she didn't impress me at all during the rehab sessions. In point of fact, the rehab sessions didn't impress me either. The Cardiologist said that my blood pressure is fantastic, the nurse is an idiot, he doesn't think highly of the program, and the way it is run will not prevent depression. He said he didn't blame me for quitting. He didn't think I should have started in the first place as I can walk on a treadmill without supervision. So there you have it. I am fine. I've stopped counting time since the surgery. At this point it isn't a huge deal in my life. I have naturally turned my attention to plans for the future. It's kind of amazing since prior to the surgery it was my entire focus. I think we tend to make the surgeon our center of attention and gratitude but I really have to give the anesthesiologist a lot of credit for so effectively doing his work. So, I just want to let everyone know that while it is really really scary, with a little time and patience, you will do just fine. Sending prayers and best wishes for all.

I have no idea what week I am in. I stopped counting. Lately my diastolic blood pressure reading is above 80. I called the cardiologist and he is seeing me on Wednesday. Every time a new symptom crops us it just increases my worry.

I am at the end of my 9th week and for the past few weeks have started to get migraines frequently. My vision will get blurry, or I will have a clear spot in the center of my vision. I get a really painful headache which causes nausea. I just need to lie down in a dark room and not move. If I can fall asleep that helps. I didn't have many migraines prior to surgery... maybe 1 or 2 a year. I am on the same 12.5 mg of Atenolol that I was on prior to surgery, and that is my only medication. Is this a common side effect after mitral valve repair? I had a full sternotomy.

Last week I called the hospital and asked to be switched to a class with heart surgery patients. The man I spoke with was very nice and moved me to the first class in the morning MWF. I went there today. I met a man who had a triple bi-pass and was in the hospital for 45 days! We had a lovely talk. He said he only has 2 classes left. I also spoke with a woman who had her mitral valve replaced with a porcine valve. I had to ask a lot of questions to get her to chat and she didn't ask any question in return so I will try finding another person to chat with on Wednesday. Conversation flowed much more readily with the man. Anyway, it made the class go much faster. It was a different nurse heading the class this morning. She didn't mind that I wore surgical gloves. She showed me how to put the monitor on, and she told me that usually she tells people what their heart attack risks are, but there wasn't much to say to me because I don't smoke, drink, am a healthy weight, and am vegetarian. She said my risks are primarily genetic... which I knew. We discussed heart attack symptoms and that in the event of a heart attack I should call 9-1-1. It is kind of disturbing to know that despite the surgery I am still at risk for heart attack. They still don't clean the machines between users. Fifteen classes left.

Today was day 2 of my cardiac rehab. There are now 16 sessions to go. The nurse came over to me and asked me why I was wearing gloves. I told her that I felt it would be more sanitary this way. She told me that I didn't need to worry about germs because they are very conscious of this and take 5 minutes between classes to clean the machines. So that means that people are using machines during each class that other people have used and haven't yet been cleaned. I also don't think 5 minutes is enough time to thoroughly clean all these machines. But I smiled and kept my gloves on. Then the nurse wanted to know why I wasn't exerting myself more. I told her I was exercising as hard as I wanted to. She said I wasn't panting. So I started panting for her. She asked why I was there. I said I wanted to be in cardiac rehab (1) with people who had had heart surgery; (2) that people on this site were saying they were exercising with other heart patients who had had heart surgery; (3) that there was a social aspect to the cardiac rehab where people discussed their recoveries and their concerns in addition to exercise that was missing. I said I was stuck in a corner of the room exercising by myself and that I didn't see how just exercising alone was going to prevent depression. I said instead of being stuck in this room I could be walking outside alone in the sunshine and getting happier results. She said that there are HIPPA rules that prevent her from disclosing medical conditions but that she would search for people who had sternotomies and would let me know what time to change my cardiac rehab class to in order to be with them. She wants time. I will see what happens. I'm not sure why this isn't done routinely. I mean, when you are going through something big, isn't part of the recovery being among people going through the same thing?

I am in my 7th week and began cardiac rehab today. This produces cognitive dissonance for me. Firstly, I asked my Cardiologist to refer me for the cardiac rehab because I want to make sure I don't become depressed and because I wanted to be around people who have had open heart surgery. Honestly, while I know I am in the very small minority, I am not athletic and I don't enjoy physical exertion. Exercise is anathema to me. I let the in-take nurse know this. What I didn't tell her is that I am also OCD and the thought of touching all that equipment that people have been sweating on disgusts me and I'm not thrilled about wearing the heart monitor that people have been sweating all over either. I keep wondering when the last time it was cleaned, and what germs I am picking up. It makes my skin crawl. But I remind myself that I need to do this and it is only for 6 weeks. My husband has suggested that I wear surgical gloves. Today we tested me on the equipment. People were exercising all around me in this windowless, airless, smelly room and I was feeling claustrophobic. I just wanted to leave. The therapist working with me was saying that by the end of the rehab she will have me on the treadmill for 45 minutes "won't that be great?" and I said the obligatory "yes" but I was thinking "no". I will close my eyes next time in hopes of blocking all of this out. I'm not sure how to block out the stench of sweaty bodies. There were a lot of people there. People are there for all different reasons. It is not just for cardiac patients. I was not the youngest person there. There are people there training for marathons too. I was trying to see if there was anyone else there who had had heart surgery, but I was told I was the only one today. No one talks to each other there. Everyone just concentrates on their routine. We are exercising separately together. I go for my second appointment on Monday. I am giving myself a pep talk. Really, I'm not sure if I this is for me, but I will list the benefits on a piece of paper and tape it to my wall. I will see what I think on Monday. I'm wondering if cardiac rehab will cause depression.

I was sitting at a restaurant at a mall. This restaurant had an outdoor seating area that was separated from the parking lot by a picket fence. Tom Hanks came and sat down at the table beside mine. He looked over at me and said: "that's a very impressive scar".

I seem to have turned a happy corner. My resting heart rate is now between 85 and 98 bpm. I am able to walk without raising my pulse past 115 bpm. This is major! My chest feels tight but doesn't really hurt unless I do something silly. My blood pressure cuff is still showing the arrhythmia symbol. I wish that would go away as it makes me nervous. I stopped taking my 3.125 mg Carvedilol 2 days ago. I never started the calcium blocker. I still have to eat a lot of salt occasionally to get my blood pressure into a more normal range. I can bend easily. So saying, yesterday I noticed that because my dog likes to lie in the corner of the floor where the projection spring door stop is situated, he had knocked it out of the wall. I figured it would be an easy fix to screw it back into the wall as the screw is still sticking out of the wall. I sat down on the tile floor and began to twist it. It did not re-attach. I then lay prone on the floor to get a better look at what was going on. This is when I made two discoveries: (1) you cannot re-attach a spring door stop once it is unattached to it's screw; and (2) I cannot stand up from a prone position on a tile floor at 6 weeks post-op! I think we should talk about Life Alert on this site.

Well, I know not to get too confident, but I am having a good day... finally. Blood pressure is still really low and pulse is still really high, yet it doesn't seem to be as big a problem today. I actually had enough energy to go to the bank and to a restaurant for lunch. This is my first non-medical outing and it was lovely. I also had enough energy to schedule cardiac rehab. My first session is August 3, when they will do the intake stuff. My Cardiologist's partner called to change my medication because he doesn't like how low my blood pressure is going on the beta blocker. He ordered a calcium blocker instead. That doesn't sound like a good idea with my severe osteoporosis so I left a message with my Endocrinologist's nurse asking if I can take it. I am still waiting to hear back. This is the most I have done in an entire month! Anway, just to let people know: these good days are wonderful and give one hope. Sending prayers that everyone is having a good day.

Hi Everyone, My mind has been working again and I have this question: I notice that everyone who has had heart surgery is taking Warfarin/Coumadin as their blood thinner and they need to have their INR checked and within a certain level. Whenever my husband has had a stent put in he has been put on Effient or Brilinta blood thinners, both of which prevent blood clots and he has never had his INR checked. Why aren't heart surgery patients given the option to use Effient or Brilinta? Why is only Warfarin used?

Hi Everyone, What has been your experience with cardiac rehab: is the program designed specifically for you, or does everyone get the same standard routine?

For weeks I have been sucking into my incentive spirometer only to have it reach 1500 ml at my best. Clearly it is broken. There can be no other explanation. And I told this to my husband this morning. Being a man, he wants to fix it. "Let me try it", he says. "What do I have to do?" So we go to the kitchen sink and I wash it. And then I give him instructions to suck in like a straw and see how high the little plastic blue thing will go. "But this is very hard, and it doesn't go up very high because it is broken." Well, he starts sucking into the mouth piece and the stupid blue thing goes right up to 4000 ml. He gives it back to me, he makes a muscle, and now he is strutting around the house asking "Who da man?!"

I went to see my new Cardiologist, Dr. F today. He is a very no nonsense, straightforward kind of doctor. He answered my questions: 1. Yes, I should be in cardiac rehab. He has sent through a referral for it. I should hear from them soon. 2. He has put me on the lowest dosage of Carvedilol. I am to take it every 12 hours as needed and not take it if it isn't needed for my pulse. It will not hurt me to start and stop it. If it brings my blood pressure down too low, I am to eat lots of salt, which will raise my BP. I am also to drink more water. I had thought I was drinking a lot already, but my husband chimed in and said I wasn't drinking enough. I didn't want to tell the doctor that you can't always trust my husband's opinions. 3. I wasn't put on a blood thinner because I don't need it. I would have needed it if I had experienced a-fib, but since I didn't and I had a repair, I don't need to worry about blood clots. We discussed that I am vegetarian and I have been avoiding Vitamin K. He asked me what I could possibly have been eating (answer: white and red food). He told me to go back to eating all my usual foods. That makes me very happy because this has been difficult and I've been eating a lot of stuff I don't like. 4. He said that even though my heart is hurting from beating so fast, I am not at risk for a heart attack and I shouldn't worry about it. He said cardiac rehab will take care of my fears and time will take care of my fast pulse, which is normal after this type of surgery. 5. He told me to eat more and that I am looking pale. He asked me if I am anemic, and I said yes, but he said the last blood test shows it is almost resolved. 6. He asked if I am sleeping a lot. I said I was because my heart hurts. He said it could be a sign of depression. I said I didn't think I was depressed, my heart hurt and sleeping helped bring my pulse down and low BP made me feel sick. He said I shouldn't be ashamed if I get depressed because 35% of heart patients do. I said I would ask for a referral to a therapist if it happens, but I didn't think it had happened. He asked if I knew what it feels like to be depressed, so I told him I had asked about it on this board and I was pretty confident I would recognize it. Now that I know I am not going to have a heart attack when my chest gets tight and starts stabbing me and my pulse soars over 130 bpm, I will resist going to bed. 7. He said that the medication that Dr. T prescribed was turned down by my insurance company because it is for patients who are in heart failure and I am not in heart failure. He said it was a good thing it was denied. On the whole I feel much better having my questions answered and knowing I am not going to die suddenly of a heart attack like my late husband did, and that my low BP and high pulse are normal after this type of surgery and my heart and veins can handle it.

I was just told that I got approval from my insurance company to change cardiologists. I see Dr F tomorrow. I have hope that I will get necessary medication and my questions answered. I also got a survey from Dr T's & Dr L's office asking how my experience was. I wonder if I should answer. I don't really think they care.

With all the wire in my chest, I set off the alarms at the airport when coming home from the hospital. Does this mean I am always going to set off the alarms at the airport? Will I be setting alarms off anywhere else that you can think of?