Anna's Heart Valve Journal

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

What cream, if any, are you putting on your scar to help with healing?

Is it working?

How soon after surgery did you begin using it?

Thank you.

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?

Day 27: Reached 1500 ml on the incentive spirometer. Finally :-)!!!!

Exactly how high am I supposed to eventually get?

Thank you to everyone who gave me tips on getting above the 750 ml. They worked.

Dr T is a good cardiologist but his staff is inadequate and doesn't return calls. There is no follow-up. Over a week ago he prescribed medication which requires an approval from the insurance co. He never applied for the approval His staff never returned my calls or the pharmacy calls. My husband finally camped out in his office to get his attention and the dr T called in asking for approval. It was denied.

I have called dr T several times asking for an appointment because my pulse is very high and my BP is very low and I am not on a blood thinner. I was told I cannot have an appointment.

Yesterday I found a different cardiologist at a different practice. I have requested a referral from my GP to this new dr. This dr's staff called today to see if they can help me get the referral. They made time for me to see the new dr on Tuesday if I can get the referral to him in time.

Out of the blue the old cardiologist's nurse just called. She said the dr T wants to file an appeal with the insurance co and that they need me to write a letter giving him permission to start the appeal. He doesn't know I have already requested to transfer out of his care.

What should I do? Should I write the permission letter and stay with him until we see if I can get the medication? Should I just start over with the new dr?

Two happy things happened today. My heart rate has been really high and my surgeon is unhappy. My Cardiologist has no interest and no follow-through. Today I had enough energy to research Cardiologists and I found one who has made time in his schedule for me next week. Hopefully I will get the the referral from my GP in time.

The second happy event was that I thought I was strong enough and my heart beat slow enough to walk through the grocery store. I had lost the heart pillow that the hospital gave me and ordered a Cardiac Bear. They are so cute, but at my age I feel a little strange walking around hugging a teddy bear. Anyway, I went to the grocery store hugging the bear. A woman and I were both at the Deli and she was smiling at my bear. So I told her that I had just had heart surgery and the Bear was helping. She said that she knew all about that and opened her shirt to show me her scar. She said she had a full sternotomy 3 years ago and the "wierdness of what was done to you will go away in that time". Her scar looked pretty good.

I had a Cardiologist, Dr. L who told me that even though I had severe mitral regurgitation and symptoms that I should avoid surgery because: "it is such a terrible surgery". I didn't agree with him and let him know that I would be seeking a second opinion. This angered him and he told me that "I was embarrassing him professionally". All second opinions (2 cardiologists and 3 surgeons) came back that I needed the surgery very soon.

Dr. L. became passive-aggressive. Consequently, I switched cardiologists to a younger partner in the firm, Dr. T who had a good reputation. Prior to surgery I saw Dr. T to make sure he was interested in taking on my case. He said that he was and would be available to me after surgery.

Last Tuesday I started experiencing pulse rate of 125 sitting and blood pressure of 85/57. I called Dr. T and was told to go the the Emergency Room. At the Emergency Room I was given a Chest X-ray, CT with contrast, and Echo. All tests came back normal. EKG showed sinus rhythm. I was released. On Thursday my pulse and heart rate remained the same and I went to see Dr. T who made room in his schedule for me. He prescribed medication that requires a preauthorization through my insurance.

The pharmacy has sent a FAX to Dr. T's staff 3 times since Thursday requesting the preauthorization. I have called his office 5 times since Thursday requesting the preauthorization. My husband is currently headed to his office to see if he can get someone to do their job and get the preauthorization (which the insurance company and the pharmacy said should take 1 hour tops).

Bearing in mind that I had so much trouble with the first doctor, and am now having trouble with the staff of the second doctor, do you think it would be a good idea to switch cardiology firms? This is really the top cardiology firm in the city, but it doesn't do me much good if the doctors and their staff aren't doing their jobs.

What would you do in this situation?

Should I be worried that my heart rate is rising to 125 beats per minute when sitting? Currently I am on NO medication.... not even a blood thinner. My surgery was a full sternotomy mitral valve repair. Echo shows no regurgitation.

Thank you for your thoughts.

PS: my husband just called to say he is at their office and they are working on it.

How long does it take for depression to happen after open heart surgery?

What type of treatment do you get for it?

Before I had my surgery it crossed my mind that caring for my hair would be a whole lot easier if I didn't have any. So I went to the local barber shop and walked in like I really did have courage and told the barber to buzz cut it about 2 inches long.

"Are you sure?", he asked.

"Yes".

"Because once I cut it, it will take a while to grow back. You know, we don't get many women in here asking to have their heads shaved. I'm going to shave it now.... You can still change your mind".

I didn't change my mind. I sat there stoically while I was made to resemble an egg. If I could have cried, I would have..... but I don't cry.

After surgery there was a young girl who used to clean my hospital room. She had a layered short bob with razored ends which was dyed bright red and yellow. She resembled a Mexican Blanket wildflower that we have here in Texas. It was quite stunning and I would find myself watching her as she went about her work.

One day she looked up and caught me watching her. She smiled and said "I love your hair". And I smiled back and said: "I was just thinking the same thing about your hair".

That is how we became friends.

What number ml are you getting up to? How long have you been using it for?

What do you do when it is 100° out in the afternoon and you are supposed to be walking 3 times a day?

PS I still feel monumentally ill.

I've been under incredibly intense stress for weeks preparing to travel for open heart surgery. My heart continues to function. So, how come I didn't pass my stress test? Doesn't this prove I don't need the surgery?

I will use this logic on the surgeon and see what he says.

Am I the only one who took a picture of their chest before the sternotomy?

Ok, I admit it. I don't want to have the surgery. I am making plans to run away and hide where no one will ever find me again.

A friend who I have not seen in 10 years has offered to be my advocate during the surgery. I am feeling relief over this. It is really so much easier when you have someone who can hold your purse, bring you stuff, and help to make decisions. :-)

Spent the day making vegetarian vegetable soup today... no salt whatsoever.

I have a UTI. Surgeon changed date to June 11.

Today my doggie friend gave me a plush squeaky toy. His mom said it is so I will be able to get the attention of a nurse when I need her, will not feel alone in the huge hospital bed, and will have a friend from home with me. I think I am going to cry.

I'm on the Upcoming Surgeries list. I've been counting down the days but this makes it official. I feel panic. Deep breaths.... deep breaths.

I have very little patience left. Last month I called the surgeon's office. I said that I needed to schedule my flights. I asked if there was a specific amount of time that I should plan to stay in Houston. I was told to expect to be in the hospital for 7 days maximum. I asked if that meant I could plan to fly home 10 days after surgery. That would give me an additional 2 days if needed in Houston and the expectation is really for a 4 to 5 day hospital stay, so I would really be in Houston an additional 4 or 5 days. I was told that would be fine. So I made my flight arrangements.

Today I called the office because I haven't heard from them. I needed to know what pills to take the night before (none) and what pills to take the morning of (Atenolol). Because Jennifer John got her surgery bumped I decided to be proactive and remind the office of my flight schedule. This has caused an upset as apparently they now don't think that I left enough time for emergencies.... well, wasn't the time to tell me that when I asked a month ago?

This kind of inattention to detail in a cardio-thoracic surgeon's office makes me nervous.

I keep reading that our fear is worse than the surgery itself. Is our fear also worse than the recovery? I think, primarily, I am frightened of everything that comes after the surgery more.

How do you know when you are in AFib? What does it feel like?

I am sad that her journal was deleted. If she is still reading here, I hope she is OK.

Do I need:

1. A travel pillow?
2. Eye Mask?
3. Compression socks?

I am having a full sternotomy

I have already purchased:

1. new bra that looks like it might be comfy
2. Sun dresses that look like they may be comfy in a size too large
3. Camisoles that will just hang on me in a size too large
4. Boxer shorts for in the hospital and pjs for in the hotel room after discharge
5. Soft pants in size slightly too large just in case I gain weight in the hospital
6. Slippers with rubber soles in a size too large
7. Velcro closure shoes with rubber soles in a size too large
8. Silky shirts in a size too large.
9. Relax The Back Contour Sleep Wedges: cervical pillow, leg wedge, back wedge, and pillow cases
10. Shower chair
11. Long phone charging cord.
12. Notebook for taking notes and digital recorder to record discharge instructions

Prior to surgery when I arrive in Houston, I will go grocery shopping and will buy chap stick, dry shampoo, hand/body wipes, hand lotion, travel toothbrush and toothpaste.

Is there anything else that you can think of that I might need to buy?

Has anyone bought a teddy bear hugging/cough pillow just in case you need a special friend? If so, from which website?

I have now switched cardiologists and just saw my new doctor this morning. He agrees that I am ready for surgery. He said that once the ventricle is also being enlarged it is time for surgery. He also said that the first surgeon was telling the truth -- that my mitral regurgitation is eccentric and that does make it harder to determine just how severe it is.

So, all in all, my surgeon, my doctor, and I are now all on the same page. Hopefully I won't have to deal with any more of the passive-aggressive behaviors of my former cardiologist who was angry because I sought a second option, and (in his words) "embarrassed him professionally".

My new cardiologist also listened to me and has put me back on the medications that work for me. So, that has been straightened out too.

Seeing my new cardiologist today has laid to rest the doubts --instilled by my former cardiologist -- that I was making a mistake and having surgery too soon.

What questions did your family ask the surgeon after your operation was completed?

I can think of: (1) was the valve repaired or replaced? (2) is there residual regurgitation? (3) what was the valve replaced with? (3) how was the valve repaired? (4) how long was she on the pump?

What other questions should be asked?

Flights and hotel are booked. Every step forward makes me a little more nauseous

It is time for some retail therapy. I am going to buy:

Keep in mind I am having a traditional sternotomy and will have about an 8-inch incision.

1. some drawstring pants (How many pairs do you think I should buy?)

2. loose slip on shoes with velcro closure and rubber soles (Do you have any suggestions about what to buy and where?)

3. Some loose shirts. Were you more comfortable in V-neck or scoopneck? Should I stick with shirts that I slip on over the head (can I raise my arms high enough?) or should I pick button type shirts?

4. Do you think I should buy some pajama pants for modesty as I parade down the hospital hallways and for in case I go to a nursing home?

Is there any other item of clothing you think I will need?

I've been reading the journals here for a couple of years. My journey has been different from the start, so I suppose it shouldn't surprise me that my path continues to be different.

I am not having tests before surgery. I am to arrive at the hospital at 6:00 AM on June 5, and I will be having all tests prior to surgery. I am not required to wash with special soap the night before or the morning of. I will be prepped just before surgery. I am not being given a tour of the hospital, I will not be watching a video, there will not be a nurse or anyone else answering any of my questions. I should just show up and submit.

Fear mounts.

I haven't seen this discussed. I've been wondering if I am going to have any type of "experience" while my heart is stopped. I'm not really sure how to ask the question. Has anyone had an out of body experience, or religious experience, or just something that was inexpiable?

Thank you for sharing.

Hi Everyone,

Well, as many of you know, this has been a bumpy road. My cardiologist hasn't been of any help, as he is in a snit that I went against his advice and am having surgery sooner rather than later. He is very old school and would prefer that I wait until heart failure even though my left atrium and ventricle are already enlarged and I have symptoms from the regurgitation. I am working on getting a new cardiologist.

I picked Dr. Lawrie at Houston Methodist to perform the surgery. I picked him over the other surgeon that I consulted with because I didn't feel that the other surgeon had the experience that I want and Houston Methodist is a better hospital.

So, Dr. Lawrie's office is a bit uninformative. I am to have the surgery on June 5. There will be tests done ahead of time. What tests? Who knows. I will find out when I am prepped. This makes me crazy scared.

Then I keep reading about people on this board who go to the hospital ahead of time, have a talk with a nurse, a walk through the ICU, and possibly a movie to watch explaining "stuff".

How important is this pre-surgery tour of the ICU and movie? Dr. Lawrie has not suggested that I do this. His scheduler is really uncommunicative and does the least amount possible. Should I call the hospital and try to schedule it for myself? It seems that doing this for myself has been my entire experience so far.

I fully expect that on June 5, I am going to be handed the scalpel and told to perform the surgery on myself too.

Meanwhile, tomorrow I go to my GP for a pneumonia vaccination. Both the surgeon and the GP thought that might be a good idea. I had to ask about that too. It would be very nice if we were handed a check list to do.

No one has mentioned a clearance from my dentist. I saw her in Feb. and will ask if she can still give me the clearance for June just in case someone wakes up on June 5, and wants it.