Alma's Journal

My mitral regurgitation shows up as severe on the echos my cardiologist has done, but as mild-moderate on the surgeon's angiogram and TEE. My cardiologist thinks that something is atypical about my presentation. Since I was sedated for both the angio and the TEE, perhaps that caused a difference in the way my heart functions. Certainly my symptoms are a lot better when I am at rest, so maybe the sedation was a factor. He is sending me for a second opinion from the Heart Institute in Ottawa. Besides redoing the TEE, I will be doing a bicycle echo, which will look at my heart while it is under stress. They just called to move up the tests. The bike echo is on Wednesday 28th, the TEE on Friday the 30th. I am praying that they find something definitive, so that they can fix my problem.

Have tests scheduled for November 6th and 18th. I can't believe how long this process is becoming. In the meantime, my symptoms have gotten a better. I am no longer passing out when I stand up, but then again, I'm not risking it by doing very much standing up. My dad has been here helping me with the children and housework. I am praying for God to speed this whole thing up for me. It's really hard to wait and wait for answers. https://newcreatureinhim.wordpress.com/2015/10/14/the-waiting-room/

In hospital as inpatient. Did tee yesterday. Surgeon does not want to operate! Says I have only moderate regurg, not what is causing my symptoms! Heart is enlarged on left side, some enlargement on right, but not worried about muscle damage. Regurg may need surgery someday but not today. My cardiologist disagrees. He wants me sent to Ottawa or Toronto for 2nd opinion. I have not spoken to him yet, but apparently the cardiologists here have been in conversation with him repeatedly. They have nothing but good to say of him as cardiologist and 'echo guy' but they disagree. I haven't spoken to him since all this, but he has told me in office several times that this is severe, will need fixing in the year, then that it will need fixing now, and that he is seeing muscle damage beginning.he has done several echoes over time. I just am so confused! As for my symptoms, I have tachycardia when standing. Heart rate goes from 60 lying down or reclining, 120 when sitting up straight, and 160 when standing up. Blood pressure goes from normal when lying to 90 over 60 when standing. Oxygen plummets from 100 lying down to 82 standing up. I have about 3 minutes of standing up before I start to wilt, then black out. It has happened right in front of them, and when I lie down, I get better right away. The last time, they hooked me up to monitors and got readings while I purposely stood there and they videoed it and got my vitals. When I lay down recovering, I felt my hands from elbows down tingling and numb and they saw that my skin was weird and mottled. My lips and earlobes were also tingling. They see there is a problem, but say it is not related to valve. What on earth is going on?

When I lay down I am fine but when i stand up my oxygen saturation tanks. It went from 100 to 80 in just a few steps. So I am meeting with the surgeons tomorrow, as an inpatient. I posted about it here: https://newcreatureinhim.wordpress.com/category/heart/ (Sorry for errors on blog, I was posting from a cell phone) Thanks to all who told me to phone Dr!

Sorry to be asking all these questions, if it's unrelated and if I'm being overly dramatic, but does heart problem have anything to do with jaw pain? I woke up with just a little soreness in my jaw this morning, but it's been getting worse all day. I'm still having all the other symptoms, and the jaw pain is getting bad. I don't want to call the doctor if I'm just getting a sore throat, but it feels worse than that. It's more like muscle pain than throat pain. I have been drinking water and eating lots of salt, as he suggested yesterday to try to raise my blood pressure.

Thanks for your advice yesterday, I'm glad I took it. I guess I wasn't being melodramatic after all! I was feeling poorly, so called cardiologist and went in for an echo. He says my regurgitation is difficult to assess, because the flow of blood doesn't spray out into the chamber but directly at the wall of the chamber, and then falls straight down the wall. So the echo can't give an idea of how much backflow there is. He says he can tell it's severe, but there is a danger of underestimating it. He also sees muscle damage and left ventricle damage happening, and thinks two weeks is too long to wait for a consult with the surgeon. (The surgeon is away at a conference for two weeks, my consult is booked for Oct 14th). So when I go to hospital for my transesophageal echo on the 7th, he wants me to stay there as an inpatient and get the surgery done on an emergency basis. And in the meantime, my blood pressure was 90/60, so he told me to drink a lot of water, eat a lot of salt. If I continue to deteriorate, he wants me to call him tomorrow and he would have me admitted to hospital. At this point I can't even walk from the bedroom to the kitchen without getting out of breath and stopping to lean on things. So it looks like the surgery will be sooner than later. If I make it to the trans-esophageal echo without going in to hospital sooner, maybe the surgery would be the 7th or 8th? This is getting real.

I have severe mitral valve regugitation and an enlarged left ventricle. I am a little worried about how badly my situation is beginning to deteriorate in the last few days. Is anyone else symptomatic like this? In the morning, I can stand straight, and sit up. But I do get tired out easily, so I just do little things, like make lunch for my kids and sort laundry. I sit down a lot. All day, I don't do any lifting, no reaching. I get light-headed, dizzy and out of breath when I move my arms too much. So I don't even load or unload the machines, just sit down and fold on the couch. By the time my husband comes in from work, I am toast. I have pains in my chest. Just little jabbing pains. Even sitting with my feet on the floor makes me tired, so I sit with them raised. And when I'm walking, I have to bend and slump over, because I get lightheaded if I stand up straight. So I go to bed after dinner with the laptop. And then, even though I'm lying down, I still have a lot of little chest pains. My surgery is not for at least another few weeks, but I feel a little scared at how little I can do. Am I being melodramatic to worry about even making it to surgery?

Transesophageal echochardiogram is on October 7th. For some reason, this scares me. I've had this test done before -- during my C-section. So it's not the test that I'm afraid of exactly. I think it's because it seems like things are being set in motion now, that are inevitably leading to the surgery. The angiogram has happened, the consultation is booked, now this is booked. The surgery is really going to happen soon. And that's a weird feeling.

I went I for my angiogram at 7am, hoping to be finished in time to take my toddler to a VCUG at the other hospital in town at 1:30pm. Angiogram was done by about 10am. I bled out a couple of times but they stopped the bleeding. They said that since I live so far out of town, I should stay at hotel in town tonight. This was a bummer, because I had to buy a breastmilk pump for the hotel. If I'd known I was staying I would have brought mine from home. (I have to pump and dump because of the meds from angiogram -- don't want baby to ingest them) Hank was supposed to come pick me up so we could take Annie to her VCUG. But I was really groggy when they discharged me, because they had given me a sedative. The nurses let me sleep it off, but I don't remember being told of the change in plans. So I woke up, thinking only of not wanting to miss Annie's appointment, and walked over to the other hospital, where I caught up with my family. Hank was annoyed with me, and I don't really blame him. We went to the hotel, where I slept off the sedative all afternoon and evening. I am back awake and alert again now. One test down... Next appointment oct 6th

Some people won't talk to me about the surgery, but they'll talk to my husband. It's like I'm a child, they don't want to bring it up in front of me. As if I don't already know. I am told I should lie down and have a rest. I go to my room, and then they have whispered conversations with my husband, asking him about the surgery and the valves. As if I'm not the one who's been doing the research on this, not my husband. I was so annoyed, I just popped right back into the room and joined the conversation. It made them uncomfortable (not my husband, he's great. He's not uncomfortable talking with me). But I didn't want to be talked about behind my back in my own home. They can talk about me all they like when I'm not there, but at my house, I want to be included in the conversation!

Has anyone else been breastfeeding a baby at the time of surgery? My cardiologist says that I won't be able to continue afterwards because of the pain, but I would like to try. I am pumping now to store up breastmilk to feed her throughout the surgery and for the day or two afterwards, until the anaesthetic is out of my system. But do any of the ladies here have any experience with this?

I see a lot of people are on Coumadin. Is it an injection or a pill? Is anyone taking Heparin or Warfarin? I have had to take Heparin for anti-coagulation in the past, as a daily injection. I have a chromosomal abnormality that can lead to blood clots, so they put me on Heparin after all my births, just as a precaution. I'm wondering if anyone is on that instead of Coumadin. I never had to do blood testing with Heparin, but maybe that's just because I was only on it 6 weeks at a time.

The hospital phoned and booked my daughter's VCUG for the afternoon of September 23rd. Then the hospital phoned and booked my angiogram for 7am September 23rd. There are 11 procedures/appointments booked between the 7 of us over the next few weeks. At least these two will be on the same day in the same hospital, so my husband will only have to take one day off work for them. For a normally healthy family, we sure have a lot going on right now!

In July, when my baby was two months old, the doctor told me I would need a surgery within the next year or two. I went back for my next appointment just a couple of days ago, and now he says I need the surgery now. It will be scheduled in the next four or five weeks. My sister wonders if he knew all along that it would be soon, but was "breaking the news gently."