Julie's Journal

For the women...Is there anyone out there who has had a hysterectomy after AVR? Looking for advice. I had AVR surgery in Feb 2017, mechanical valve. Im 45, and on on 5 mg of Coumadin, with 7.5 3 days of the week. I was diagnosed with PMDD years before, and have always had debilitating symptoms surrounding my cycle (depression, migraines for 7-10 days, and heavy bleeding.) Since surgery the bleeding is totally out of control. I'm home-bound for at least 2-3 days. I am scheduled for a hysterectomy next week and I am freaking out about surgery after being on Coumadin. Has anyone out there had one for this problem? Full or partial? My doc is saying partial will relieve the bleeding, but not the PMDD symptoms. But a full (taking out ovaries and all) will throw me into menopause and then I'll have to take estrogen which can cause clotting issues.? HELP!!!!!

Hi guys. I had surgery Feb 17. When I got home from hopsital, they were checking INR every 2 days. Today they came after 6 days, and my INR is 5.7. I haven't changed any medicines. No idea why it shot up in a weeks time. Other than eating greens, is there anything I can do to bring it down? Have any of you had symptoms with a high INR? I had been feeling weak and light-headed past 2 days, but figured it was the Lopressor. The home health nurse told me that the potassium supplements could be the culprit? Not sure about that.

Hi. Just had AVR on Friday, Feb 17, and wondering if anyone could help me with a couple questions. First, my heart is pounding much harder and faster than before. My heat rate before surgery was about 65-70. Now it's about 92, and if I walk around about 110-120. I'm wondering if this big of a difference is normal. Question 2: Has anyone had trouble with Lopressor/metoprolol? Every time I take it I get dizzy/light headed/pounding heart rate/nausea. They are giving me 25 mg twice a day. I have always had a very low BP, and never could take anything which lowered it. It happens about an hour and a half after I take it and lasts for about 15-30 minutes. I didn't take it today, and no spells. Thanks also for all the well wishes. I wish I had checked the night before surgery.:)

Wanted to share my experience b/c reading yours has been such a great help. I deleted this, but have been asked to re-post. Please keep in mind that I wrote this on my way home, in the car, on very little sleep, in pain, and emotional. I will be sure, if there's a next time, to research my hospital. I'm hoping there's no next time. Surgery Friday morning, Feb 17, lasted around 4 hours. I didn't sleep at all the night before because of extreme anxiety. I was in a hotel room, finishing my Last Will and Testament, worried sick about leaving my son alone in the world, and still agonizing more over valve choice. I had seen my surgeon that day after a dizzying array of several hours of testing on 9 floors of Ochsner's hospital, and announced the switch to mechanical, but didn't feel ok with it. I didn't discuss the tissue option with him again, because I thought it was stressing out my parents, and I felt I needed more time. So I was feeling neither great nor confident going in. One of the last things I remember is my mom crying as they wheeled me away, saying "Be brave!" and holding back my own tears. My aortic valve was successfully replaced, and the aneurysm didn't need to be repaired. They removed the breathing tube before I woke, so that was lucky. Got transferred to ICU, and upon awakening, was given 2 oxycodone tablets, even though I warned against it. "Medication sensitive, it's too much," I tell them. Being intolerant to many meds was one of the biggest factors in agonizing forever over a tissue or mechanical valve. I hate taking medication, could never take an antidepressant ,and have always felt that the more natural state your body can be in, the better it will work. It seems clear now, and like it should have been so much easier, but I remained in a state of constant confusion and deliberation for months. (I came here for a tissue valve, and ended up with a mechanical.) Started throwing up, but no food, so dry heaving episodes for 6 hours with my breastbone freshly sawed open. There was no heart pillow to hold , as they conveniently give you that "later on." Not sure it would've really helped. I thought it was some of the worst pain I'd ever felt, but not for long. Shortly afterwards, they notice my blood pressure was low, as it normally is. So they start an epinephrine drip. I guess they didn't think of my weight, ? OR being sensitive? but that shot my heart rate to well over 230, and sent me into respiratory distress. My heart was pounding in the pit of my stomach, hands, feet, brain.... severe chest pain. Risk of heart attack. Felt like I was dying. They start another IV to crash that one. Fortunately my mom had stepped out, but my dad was there and looked like he would faint any second. Bc of the huge epinephrine dosage, (?) I become temporarily diabetic. I find out sugar free Jello is gross. And pretty much anything sugar free is. I won't mention the chest tube incident, because it's not even believable . Or maybe I'll save that for later. That was part of day one....Or surgery day, which doc says is considered 0. Sleep a total 30-40 min in ICU. Day 2, or officially 1 after surgery, my vision blurs and was transferred out of ICU to a room so small that there was literally no room to move around. My parents had to maneuver around nurses, and vice versa. There were really old and noisy machines beeping, whirling, flashing and ticking all around my bed. The tv is broken. I don't care about that. But that means my parents can't watch The Bachelor, and all they can do is worry. There's no hot water. NONE. The hospital bed is broken. The chest tube drainage box gets knocked over numerous times. I then get poked and prodded connected to about 7-8 more IV's. I lose count. Already on blood thinner, so they start a Heparin drip. The nurses are drug pushers, and you can't "just say no." I'm being given drug cocktails of 8-9 pills at time. I ask what each one is, and start to hide the ones I think are bullshit, and try to sort out which ones are making me dizzy, nauseated, blind, etc. Long story shorter, the artery IV in my neck bleeds out. More complications follow, but nothing that serious, and I am determined to GTFO as soon as humanly possible. To get out, one must walk a certain distance, but I've been refusing pain meds as much as possible to avoid ever throwing up again. (And because I am apparently hardheaded.) I now have a morphine drip that I can administer intravenously every 6-10 minutes. I use it once every 5 to 7 hours. It hurts. But I figure it's supposed to. They keep shouting "Push the button!" I realize later that I should've never stopped pushing the button. I'm told that the fastest anyone goes home from the surgery is in four days. But also told I am not sleeping enough or getting enough caloric intake for my body to heal. Well shit. I might be here another week? On Sunday I start pressing the button, but cautiously, and find a smoothie from the gift shop. The hospital doesn't bring any meals, nor provide you with a diet to follow. (I wish I would've started with broth.) There is a flyer with a limited menu, and number to call and order. The food takes over an hour to show up each time, and always shows up cold. The busier they are, the longer it takes. I can't eat it anyway. Finally sleep two hours. Monday, day 3 they removed the chest drainage tubes by simply saying "take a deep breath" and yanking. The typical way. It hurts, but not too bad, and it's quick. I realize they were causing massive amounts pain bc they were sticking into my back. A few minutes later I'm surprised and delighted to be able to inhale and to walk upright for the first time. Later that day, I break down crying when they can't find a vein after numerous needle sticks by 2 different nurses because 3 iv's have infiltrated. I am told I have rolling veins, which I do not. Or didn't. My veins were always a phlebotomist's dream. My blood used to be so beautifully dark and thick and the color of a full bodied wine, and now looks light red and bubbly, like fruit punch. Apparently the Coumadin can change things that quickly in your body?? It seems impossible. I fall into a deep "What have I done, I made the wrong choice" depression about having chosen the wrong valve, and having dietary restrictions and having to get constant blood work, and being chained to this medication, and now possibly others all my life. I'm ticking. It's LOUD! The faster my heart rate, the louder the ticking... I put ear plugs in and I can hear it even louder in my ears. I continue to freak out. A friend who's in town calls and comes to visit. I'm beyond exhausted and it's hard to speak, but I tell her hospital war stories and make her laugh. I laugh with her. Ouch . Then try not to. Seeing her helps. Sleep about 45 minutes. Today (Tuesday) I realize that it's my mom's birthday tomorrow and that I'm lucky just to be alive. I decide that I'm going to go home for her present. I do everything and I need to do. I put on lipstick. I sweet talk nurses. I look alive (halfway) ....or 40%.....Ok, 35. I walk the designated block. I blow in the tube. My folks are super reluctant to leave after all that's happened. I tell them I feel SO much better. I might've lied a little. Ok, a lot. I try to put things in perspective. My surgeon was awesome, and he saved my life. I had a few nurses who were caring and kind and excellent. I had a friend from home who drove 4 hours to bring my son to see me for a few minutes. I realize that he will need me forever, and I want to be here for him as long as possible. I think of many of you who have had things so much harder, but still smile and encourage others. So thank you for your your prayers and good vibes and support. Thanks for giving me a wealth of information i couldn't find anywhere else. I love and appreciate you, and feel a kinship. Its been a long, emotional road, and i know have a long road ahead. There were times in the past few years, and the past few days that I thought I wouldn't make it. But nothing makes you appreciate life, more than facing death. I'll probably be signing off for a bit, (still having vision and dizzy spells) but know that your messages and words of support have helped so much. In the meantime, I'll try to keep in mind, and hope you will too, that because you are alive, anything is possible.

Hi. Just wanted to thank everyone for being so supportive and helpful. I am still agonizing over the decision of mechanical or tissue. This is undoubtedly the hardest decision I've ever had to make. I just found out that my surgeon will not use the On-x valve. He doesn't like it , so that was really disappointing to me, being that medication is a huge worry of mine. if mechanical, he will only use St Jude's. I am wondering if anyone out there has a tissue valve that has lasted longer than 10 years. I have about 9 days to decide.

Hi everyone, I am brand new to this forum, and trying to get as much info as possible. I have severe AS, and need AVR very soon. I have done much debating b/t mechanical and tissue valves. I am 43, and was talked into mechanical, as to avoid multiple surgeries. I don't like the thought of coumadin, or the possible effects. Or ticking sounds. But don't like the idea of multiple surgeries either. Recently, when I had a visit with a surgeon, he told me he thought the new brand of tissue valve would last me 15 years. I know there's no way to know for sure, but that would put me doing a TAVR at age 58, and counting on technology to improve in those years. So I'm debating my decision again now. Wondering if anyone has any advice on tissue vs mechanical, or any experiences that may help. Thanks so much.