Terri's Journal

What a journey it's been. First off let me say, endocarditis is no fun. Last Wednesday I went to my cardiologist for my followup. I had to get up at 3:30am to take my vancomycin and ampicillin out of the fridge. Wrapped my arm that had the PICC line with Glad press and seal and tons of waterproof tape so I could take a shower. After the shower and getting dressed it was 4am. So I went downstairs to the living room to start the ampicillin. That ran through the IV for an hour. Then it was time to run the dreaded vancomycin. That took 2 1/2 hours to run through, ending just in time for me to get in the car and drive to my cardiologist's office for my 8:30 am appointment. I was so freaked out that he wouldn't be running on schedule because I had to be home at 10am to take my ampicillin out of the fridge and run it through the PICC at 10:30am. Now I've been having side effects all along, ever since I started the IV medications on 4/11/2015. And from day one, when the IV meds would run through the PICC my arm would feel weird and tingly and slightly itchy. By last Monday it had increased so much that my arms (both) had turned bright red and were so itchy I had to take benydryl. My home health nurse thought I was getting red mans syndrome and suggested I slow the drip on my IV. By Wednesday I was ready to blow my brains out because of the discomfort. I get in my cardio's examine room and his nurse notices my arms. Worse yet, my blood pressure was 184 over 92. Not good. She said, "I think your having an allergic reaction to something." Nope, not possible. I've been taking these meds for over a month so I know I'm not allergic to them. My Dr comes in and immediately says, "Your allergic to the vancomycin. The IV drugs need to be stopped immediately." He couldn't make that call though. And since mere mortals aren't allowed to have the office number of the infectious disease doctor (and I'm serious), I had to call walgreens infusion dept and talk to the pharmacist. Dr Nasim only accepts text msgs. He does not accept calls. So the pharmacist texted him saying my cardio told me I was allergic to the vancomycin. It took the entire day, and I ran the IV drugs twice more, before the infectious disease doctor finally texted the pharmacist telling him to call me and tell me to stop all IV drugs immediately and have the PICC line pulled out. I had asked the pharmacist for the dr's phone number. The Dr told him not to give it to me or anyone else under any circumstances. So the pharmacist said how can she followup with you. He texted him back saying, "I don't want to see her. She can follow up with her cardiologist since he seems to know so much about what drugs she should or should not take." What the heck? This guy is good, I admit that. But what an arrogant jerk! He put so much extra stress on me. What if I hadn't gone to my cardio? I could have died from that allergic reaction. I'm lucky I didn't have a heart attack as high as my blood pressure was. When I told my cardio dr about how the infectious disease dr wouldn't let anyone have his office number he got angry. He said no patient deserves to be treated like that and should have access to their doctor. This is one of the many reasons I love my cardiologist. Not only is he one of the top ten doctors in Kentucky (according to Louisville Monthly magazine and number one according to me). Long story short, at 5pm last Wednesday my home health care nurse came and pulled my PICC line out. YAY!!! I thought that would be the end of my problems. Um...no. When you are dealing with a deadly disease it doesn't end so quickly. In fact, I'm still dealing with the side effects. Explosive, massive, black tar diarrhea which I've had since April 12th, blurry vision, hearing loss, nausea, itchy red rash, drenching night sweats, headaches and so much more. This has been a nightmare. I am getting glimmers of hope though. So I am hopeful that there may be an end to this someday soon. I had a long detailed talk with my cardio about my condition. The official report is that I had a blood clot on my aortic valve. My mechanical aortic valve. And there were traces of vegetation on it as well. I had three "mini" strokes prior to landing in the hospital. The first was Feb 20th when I was shopping. Then the first week of April, when we were on spring break vacation in Memphis, I had the other two strokes a day apart. So things were definitely gearing up to get much worse. Its a good thing I went to the ER when I did. This week I had bad news. A woman I knew from my home town died. She was only two years older than me. What did she die from? A blood clot on her aortic valve. She didn't even know she had heart problems. Yes, I dodged a speeding bullet. I am one lucky woman. Moral of the story, keep on top of your protines. Mine had been running 1.9 to 2.2 and even though I had been told to keep it 2.5 to 3.0, my family dr kept saying, "oh thats a fine number." No, it wasn't fine. Its not a good number for someone with a mechanical heart valve. I should have been assertive and told him that. Instead I became complacent and it almost killed me. Would I have gotten endocarditis from my dental appt anyway if I hadn't had the blood clot on my aortic valve at the time? Who knows. I did my due diligence and premeditated one hour prior to each dental appt but clearly that didn't work since I got endocarditis anyway. But I'm more informed now. And I'm alive. That's the important thing to remember. I've lived through a blood clot and endocarditis. I am awesome! We are ALL survivors and we are ALL AWESOME!

At the end of today I will have just five weeks and six days left to be on the dreaded PICC line and IV meds. These Meds kill both the bad and the good as I'm unfortunately learning. I see now why they say it is similar to going through chemo. It is. It's driving me crazy to not be able to see clearly. The Meds make my eyes blurry. They are so blurry I can't even read the channel guide on the tv. So I type in the channel numbers I remember, like 608 for turner Classic movies. Then I listen to the movie more than watch it because of the blurriness. It's so annoying. I'm praying so strongly that when this rounds of IV Meds are done the endocarditis will be gone and I won't need another clave replacement surgery. My thoughts and prayers are with all of my heart brothers and sisters, those going through this now, those who have been through it and those who are awaiting their surgeries. And especially their caregivers. What would we do without those who love us and help care for us. My husband has been amazing through this. I'm a lucky woman. And he goes to baskin Robbins for me when I'm to nauseous to eat anything but sherbet. You have to love a man like that. Blessings to you all, Terri

I posted in Feb about getting ill after a dental visit. A concern since I have a mechanical aortic valve. Turns out I had every right to be concerned. If hindsight were foresight I would have been more proactive. Now I'm paying the price for it. About 3 weeks ago I had an episode when I was in a department store. Suddenly, with no warning I got tunnel vision and lost the vision in my left eye for about 5 minutes. I was very dizzy and disoriented and felt like I was going to faint. I didn't know it at the time but I'd just had a stroke. I called my cardio that afternoon but didn't want to come in to the ER to be checked. He said that since I had no residual effects from it that it may have just been a reaction to the increased amount of lasix I was taking. Mistake #1. Last week we went to Memphis TN on a BBQ crawl for spring break. The first morning at breakfast in the hotel, I was standing at the buffet and suddenly, with no warning, got tunnel vision, dizzy, disoriented and felt like I was going to faint. I didn't know it, but I'd just had Stroke #2. That day we went to Graceland and I felt so funky I was afraid I was going to die at Graceland. I prayed to God, asking him not to let me die there. No offense to Elvis, but I didn't want to spend my afterlife wandering Graceland, although the Jungle room was pretty cool. We came home a day early. On the drive home I called my cardio and told him I'd had another episode. They told me to come in the next morning first thing. That morning I woke up with my entire left arm numb and my left hand felt like pins and needles, like when your hand goes to sleep. And I was having problems walking because my left leg felt so weak. I didn't know it yet, but I'd had stroke #3 sometime in the night. They did an echo at my cardio's office and I have to say, it was the shortest echo I've ever had. I thought that meant everything was fine. So imagine my shock when they came into the changing area and told me to go straight to the ER, do not pass Go, do not collect $200. I told them I had plans to shop that afternoon with my granddaughter. They insisted I go to the ER. They didn't tell me then, but they'd seen something on my heart valve during the echo. It turned out to be what they called "vegetation." It was a blood clot and endocarditis. I was admitted to the hospital and had two MRI's of the brain, a TEE and I forget what else. I was diagnosed with three strokes, a blood clot and endocarditis on my mechanical heart valve. I was one lucky woman not to have had a major stroke or death. The doctors were baffled by the fact that I didn't have a major stroke. I had a team of doctors. My cardiologist, my heart surgeon who had originally put the heart valve in three years ago, an infectious disease dr, a neurologist and a hospitalist (like a GP). When the bills come I'm likely to have another stroke. I was put on IV medications that are very strong. Two dr's told me it would be similar to someone on chemo, it would be no cakewalk. Boy were they were right. Today is my 3rd day home from the hospital and already I am fed up with this regime. There is a period of 4 hours during the day when I am not hooked up to the IV. Then I go to bed at 1am and wake up at 6am to start the process all over again. The Unisom (Ampicillin) takes 1 hour 15 minutes to run through the IV. I take that four times a day. The Vancomycin takes 3 hours 30 minutes to run through the IV and I am take that twice a day. And I take C-pro by mouth. These meds make you so very sick. They kill everything, the good and the bad. I have 6 weeks of this and I am only on day 3. These drugs give you massive, horrible, painful diarrhea, make you sleepy, make your arm cold, gives your entire body chills, blurry vision and makes you feel so very worn out. I can't drive my new car (only a month old) because my vision is so blurred. And I can't go anyway because not only am I almost constantly hooked up to the IV, but I'm also immune challenged right now. And the expense. It staggers my mind. I'm on medicare and before I'd even gotten out of the hospital I was in the donut hole. Try paying $320 every 7 days just for two of the IV meds. That doesn't include the IV supplies, the other numerous drugs you have to take, the flora (probiotic), the imodium, the pepcid, the this, the that. It is overwhelming. And everyone wants their money upfront. Getting sick is expensive. All because I had a simple cavity and went to the dentist for a drill and fill. Terri

Hard to believe it's been three years since my valve replacement. I have a mechanical aortic valve (Oct 19, 2011) and a double bypass. I am so grateful every day that my surgeon called me the night before the operation to talk me out of going with the tissue valve and into choosing a mechanical one instead. Nov 2014 I found out I have tricuspid regurgitation and pulmonary hypertension caused by the tricuspid regurgitation). Not the best of news, but I'll deal with it one day at a time. And when the time comes for surgery to fix it, I'll deal with it. Don't want to have another zipper surgery but I don't want to be placed in a satin lined box either. Now I am dealing with what my primary care doctor calls "a mild case of pneumonia." I don't think he realizes how a cold can kill someone like me with my heart/lung issues. And pneumonia...well, you know how bad that is to someone who already has severe breathing issues. Point is though, I wonder if my dental visit the week prior to getting sick had anything to do with this illness? I did my due diligence and took four (500 mil) amoxicillin prior to the visit. I bled a lot due to the Coumadin that I take. I had a cavity under a crown. Exactly one week later I started having the weirdest extreme pain in my chest. It hurt to take in a deep breath (still does). Light headed, dizzy, just felt like I was coming down with a monster chest cold of epic proportions, but it never hit. I have to wonder if that dental visit started a chain reaction and if I should see my cardio doc. My blood oxygen level is low. Has anyone ever had a problem after a dental visit either before or after valve replacement? Thanks!

I thought with the new home health care agency I was using after I got out of the hospital last time, all would be good. For those who don’t know, the first agency sent a nurse that didn’t use gloves when touching my incisions and I got ecoli in my leg incision where they’d removed a vein for the bypass. It’s by the sheer grace of God that it didn’t end up in my chest incision (which had torn open about an inch) because I’d most likely be dead. My nurse at the new agency is awesome and not only knows her stuff, but is also friendly. BUT! Her daughter had a baby in Chicago so naturally she went to spend a few days with her. And then she’s had some bad luck since she got back in town, a car accident, a sick dog, etc. The nurses they sent in her place were AWFUL! So I’ve been refusing the terrible nurses when they cover for her and tell them my husband did my bandages. Actually he does the bandage change in the evening and now I’m able to do it in the morning. The incision in the leg has closed up mostly and can no longer be packed. Now the surgeon has me putting Neosporin on it and then bandaging it up. The chest has closed except for a small spot about a little larger than a pencil eraser. I’m so afraid that it will never close. I can’t live my life with a hole in my chest! I’d never be able to go swimming, etc. I’m praying for a miracle. And since it’s the holiday season; who knows! Stranger things have happened I’m sure. So while I’m not 100% yet, I am doing so much better. It’s a little frustrating at time to think that my surgery was Oct 19th and here I am still trying to heal the incisions. I know it will take months for the inside to heal, but I would have liked to have had the incisions healed a lot sooner than I have. But at least things are finally starting to look good. And I’m happy to say that I start cardiac rehab in January, when the knee is a little better. I am having an ongoing issue though and wonder if anyone else has this problem after valve replacement/double bypass. I STILL retain fluid. I retain it so much that I gained 11 pounds in a two day period last week when I forgot to take my lasix for two days. Now my heart surgeon has me taking double the lasix and potassium for seven days. But the fluid continues to be a major problem. This sucks! I have to plan my life around the lasix, because it makes you pee so much. So I do my errands (if I have any) in the morning before 10am so I can take the lasix at 10am. I just want to be healed and not swollen anymore. I’m still amazed that I’ve only had one day of depression during this entire experience and that was the last day I was in the hospital (during the 2nd stay). But I’ve had some good news during this process and I think that helped keep the blues away. One of my manuscripts sold!!! Yes, “Shake Rattle and Haunt” will be released December 2012, so be sure to pick up a copy next Christmas! And speaking of Christmas, this year I went the easy route and am giving cash to my kids. They are adults and would probably prefer cash to my picking them out a sweater anyway. And I know they understand that I’m in no shape to be shopping in the malls right now. Next year – watch out! I’ll be right in the thick of it then! On an interesting note – When I went to see my cardiologist last week he told me my heart surgeon was doing a valve replacement on his dad that morning. It gave me a confident feeling to know that he choose my surgeon for his dad, because if my cardiologist would use him for his father you know he’s the best surgeon around. But I think I’d already figured out that he was the best. J I hope everyone is doing well. My thoughts and prayers continue to be with all of you, both those of us who have had this operation and those who are having it in the future. God bless us each and every one and may we all have a wonderful, healthy 2012! Warm regards and peace and love to all, Terri

Wow, what a crazy week it has been. I am still stuck in the house 24/7 but I don’t mind it so much because the weather is nasty outside lately. We went with a new home health care agency when I was released from the hospital and my regular nurse, Penny, seems great. She uses only sterile gauze in my wounds and throws away half a package of gauze after each dressing change because it has been exposed to the air and is no longer sterile. I didn’t understand the significance of that until I saw a picture of my wounds yesterday and realized how deep the holes in my body are. My leg wound was the width and depth of a 4oz jelly jar when I came home from the hospital. It is slowly beginning to heal and feels better each day. I’ll post pictures of my leg wound and chest wound on my photo page. But I’ll warn you; it’s not for the faint at heart, especially the leg wound. Just keep in mind, both wounds were almost twice as large and deep on November 11th when the surgeon cut my leg and chest open and dug out all of the infection in each incision. After looking at the pictures, I understand why everyone’s eyes would widen when they saw my wounds. My husband continues to pull the packing out of my leg and chest in the evening and repack the wounds. I don’t know how he does it, but God love him for doing it! I would like to think I would do the same for him if he should ever be in the same position, but honestly I don’t know if I could stomach doing such a thing. Poor guy; the first night his hands shook when he tried to repack the wound. I get it now after seeing the pictures. Yesterday I went back to the surgeon’s office for him to check the wounds. After the problems with my first HH nurse (who kept telling him the incisions looked great even though they were dripping pus at the time) he insists on seeing me once a week now. He is like me and not trusting any HH nurses after my experience. I feel secure in the fact that I now have a good nurse looking after me and good surgeons and an excellent cardiologist but I will always go with my gut instinct now and stay on top of my health. The best news of all? I’m now 7 lbs lighter than I was when I went into the hospital. Yay! I had gained 14 lbs of fluid after the open heart surgery so I’ve lost the 14 lbs and an addition 7 lbs as well. Now if I can shed another 25 lbs I’ll be a happy camper, although I can’t say I’d recommend the open heart surgery with complications diet. Ha ha. My appetite still hasn’t fully returned but I’m making sure to eat healthy foods each day irregardless of the lack of appetite. I hope everyone has a wonderful Thanksgiving. We all have so much to be thankful for! Warm regards, Terri

I feel so much better tonight!!! Yesterday was a bad, bad day for me in the hospital. My IV needed to be changed and each IV they would put in, when they would run the antibiotic through it you could tell it was blown. I had a total of three IV’s yesterday. At 10pm when the last IV blew I became hysterical because the entire process had been so painful all day. My night nurse, Susan, was the best nurse I’ve ever had. She calmed me down, took out the painful blown IV and asked me what I wanted. I tearfully told her I just wanted to go on oral antibiotics and go home. By this time it was 11:30 pm. She called my awesome heart surgeon, who by the way has the best bedside manner I’ve encountered with a doctor. She told him how upset I was and the difficult day I’d had and the painful IV’s as well as how bad my arms were looking from all the poking. She explained I had no veins left and my only other choice was a PIC line but I was so afraid of getting one. He told her to switch me to an oral antibiotic and my IV morphine to shots in the butt. Then he came in this morning before he went into surgery and told me I could go home under certain conditions. I have to have my wound dressings changed and repacked twice a day. A new home health care agency has been chosen and they come out once a day to do it and my husband was taught how to change it and will be doing the nighttime changing and repacking of the dressing. And I have to see my surgeon on Monday. So I am home now! YAY! The nurse has already been this evening and what a change from the bad home health nurse. This one is absolutely wonderful and even changed her gloves between touching the leg wound and the chest wound. She was very patient with teaching my husband how to repack the wounds, even though he looked a little green around the gills when he saw how deep the leg wound was. He said she stuck a long wooden q-tip thing in the leg wound to push the packing in and the q-tip thing kept going deeper and deeper and deeper and then went deeper some more. He said it was no wonder I’d been in so much pain and they had to give me a morphine shot before each dressing change. I was a little bummed out when I was told today that the leg would was so deep that it would probably be open for at least 4 weeks. You heal from the inside out with a deep wound like that the nurse said. That makes sense. I asked my husband to take a picture of my wounds tomorrow when he takes the dressing off and pulls the packing out. I want to see what the wounds look like but not until I’ve healed. As for the snotty nurses aid yesterday that thought helping patients was above her, she was chewed out and put on probation this morning for her lack of attention to all the patients yesterday. None of us were helped to bath or helped to the bathroom and even though they were supposed to measure my urine she wouldn’t do it or empty my urine bonnet on the toilet. I wasn’t the only one to complain apparently. Thanks to everyone for the concern and prayers. You guys rock! I’ve been reading your journals tonight and am glad to see how well everyone is doing. This isn’t the easiest thing to go through but we are all warriors! Warm regards, Terri

Good news is dr told me today that i might be able to go home on friday. i sure hope so. i didn’t get depressed or cry until today. they put new iv in my wrist and the pain is unbearable whenever i use the hand in any way. Now it’s hurting really bad when the antibiotic runs thru it so sadly I’ll have to let the nurse know. I am a hard stick so I am scared they won’t be able to find a vein. i feel so helpless and that makes me feel depressed. Today has been such a bad day. And to make matters worse the nurses aid didn’t help hardly at all today. I would be stuck in the bed for 2 hours at one point before she finally helped me out of it. She acted like it was all above her. Now I find out she will be working tomorrow too. Warm regards, Terri

Doctor has changed my dressing changes and repacking of wounds from twice a day to 4 times a day. All I can say is thank God for IV morphine!!! Good news of the day is the doc thinks he might not have to re-cut the chest incision now. I am so thankful. The nurses told me today that apparently my heart surgeon was very ticked about the poor care I received from the home health care nurse and the fact that she didn’t wear gloves when touching my wounds and thus I got ecoli in my leg incision where they’d done the vein graft for bypass. They said the surgeon took care of the hh nurse. I assume that means he called her supervisor and told her how they caused me to be in hospital. I think I love my surgeon! My thoughts and prayers are those of you going through surgeries this week as well as those of us still recovering and those going through the anxiety of waiting for their surgeries. Warm regards, Terri

The leg culture came back showing ecoli. That means the home heath care nurse hadn\'t washed her hands after wiping her or a patients poopy butt before poking her fingers on my incisions. The packing goes down to my bone on my leg, it’s that deep. I’m lucky I didn’t lose my leg! As for the chest culture and the blood cultures, they haven’t grown anything yet. But my surgeon said that he’ll be re-cutting my chest incision so it will heal together properly. That scares me to death. I hope they put me out for it. I must be getting well because I’m starting to get annoyed at my husband for minor things like leaving the toilet seat up in my hospital bathroom. That’s always a sign that you’re going to live, when you get annoyed with your spouse. Ha-ha. Warm regards, Terri

My surgeon met me in the ER last night and was pissed at that home health nurse for not knowing that thick yellow goo is infection. He said she should have called his office at the 1st sign of infection so they could have put me on antibiotics over a week ago. He spent 1-1/2 hours last night cutting into the leg and getting the infection out of that and the chest incision (which was gaping open for the past 3 days). He said an open wound is never a good sign and I should have called him as soon as I saw it gaping open, no matter what the hh nurse said. He did cultures on both wounds and my blood and doesn\'t know yet if infection is in my blood but is taking steps anyway while we wait. He said my sternum would have gotten infected and I would have lost part of my sternum had I waited much longer. He told me to get rid of that hh nurse. I agree! Thank God I took everyone’s advice and called my surgeon last night. He said it was bad. I\'ll be here anywhere from 4 more days to a week. I’m on IV antibiotics and stuck in bed with my leg elevated. I’m not allowed to sit in a chair with my leg down, I have to keep it elevated. He has the nurses recleaning the wounds twice a day and repacking them. I won’t lie, it was far from a fun experience last night when he cleaned the infection out of the leg (where they did a vein graft for my double bypass) and the chest incision. Putting the packing into the wounds is quite painful too. But my God it sure beats losing a leg or my sternum or worse yet my life. I also want to take a minute to give a special thanks to one of our many angels, Eric. He sent me an email with a link to a guy’s journal who did lose his sternum (and almost his life) to infection after valve replacement surgery. I don’t think you can go through heart valve replacement without becoming a little bit spiritual. So with that being said I want to tell you that God puts special people in certain places at the right time. I know God put Eric as well as each and everyone of that signed my guestbook or emailed me, in my life at this time for a reason. And right now it’s pretty darn clear to see the reason why he did that. (And no, I haven’t had my pain meds yet so it’s not the drugs talking – LOL). But seriously, I want to thank each of you for your comments, advice and concern. I shudder to think how scary this all would have been without this wonderful site that Adam created and all of us going through this special journey together. Thank you! Warm regards, Terri

I am so frustrated and so upset. I’m in tears over everything because I feel like my hands are tied and there’s nothing I can do. It’s that %&#*& home health nurse. She came this morning after I ended up having to call her supervisor to get her to see me. I have a 1 inch spot in the incision in my chest, right between my breasts, where the incision has come apart. It is also filled with a thick yellow goo. Infection is what it is. The HH nurse keeps calling it drainage, but it’s pus. Anyway, she looks at it today and tells me that I need to keep using the hybacleanse on it when I shower each morning and put betadine on it when I get out of the shower. The same exact thing I’ve been doing for over a week now with no success. But then she looks at the wound site on my left leg where they took a vein graft out for my double bypass. She says it doesn’t look good and she’s worried about it. She says it’s infected (the first time she’s used that word with me so I knew I should be worried then). She said the wound is very hard and it’s red all around it and has a dark yellow pus oozing out. It’s much worse looking than the chest incision or the drain hole incisions. She called the leg condition a certain medical name because of the hardness (I can’t recall what it was). She said the chest incision would be okay because it was soft, but not the leg incision because it was hard. She said I needed to see my surgeon about this and she would call him to let him know. This was at 10:30 this morning so I’ve been sitting here all day waiting for her to call and let me know what my surgeons office said. Unfortunately I fell asleep around 2pm and didn’t wake up until 5pm, at which point the surgeons office was closed. I knew I shouldn’t have waited for that HH nurse to call, I should have called the surgeons office my self. So the home health nurse that is on call for tomorrow just called and made an appt for her to come out to check my wounds tomorrow. She is a different nurse from the one I usually see and she didn\'t sound very nice, I have to say. She sounded like a bitch and was borderline rude to me. I asked her about the Dr appt that my regular nurse, Michele, was supposed to call my surgeon about. This nurse (Donna) said that she was to check my wound over the weekend and Michelle would be calling my surgeon on Monday to make an appt for me. WHAT? MONDAY? Why was my surgeon not called TODAY? Does she not realize I could lose my leg over this? I\'m a brittle diabetic that takes 6 needles of insulin every day. This infection isn\'t going to go away on its own! I am so fed up with these inept people! Even my cardiologist’s nurse told me I needed to see the surgeon ASAP for the infection when she called me today to get info to refill my Lasix prescription. But the HH nurse is going to sit on her butt over all of this and see how it looks on Monday. I\'m fed up with it. I told the nurse that just called about my concerns with the infection and she told me that the surgeon wanted me to try the hybacleanse first and betadine. I told her I\'d been doing that for a week and a half already and it obviously wasn\'t working. She got snippy with me. I don\'t know what to do. And here I\'ve sat and waited all day for the other nurse to call and tell me to go in and see the surgeon like she said she was going to arrange and now his office is closed until Monday. I\'m so upset! And I tell you this, I have no desire to see this rude nurse tomorrow. If she talks to me in person like she did over the phone I\'ll lose it and go off on her. Why do the HH nurses not want you to see a doctor? Does it reflect poorly on them somehow? I don’t understand why they are going to such great lengths to keep me from seeing my doctor. I would have thought that my health should be the most important part of this equation. These HH nurses are playing Russian roulette with my life and it scares me. And the gaping spot in my chest incision? The HH nurse tells me that you heal from the inside out and that when the yellow goo is gone the incision will close on it’s own and heal. I’m not a nurse, I don’t know of that’s true or not. Does anyone know if that’s true or false? I’m really kicking myself for not having called the surgeons office this afternoon. I just don’t know what to do. I’ll post a picture of my chest incision and drain-hole incisions on my photo page. I haven’t taken a picture of the leg incision. But it’s hard as a rock and painful and when I walk pus drips down my leg. It’s been that way for almost a week now. Regards, Terri

It’s been a crazy three weeks since my valve was replaced on October 19th. A week full of ups and downs. One minute I’m all smiles and so happy to be alive and the next minute I’m frustrated with the slow recovery and the pain of healing. When I first discussed heart valve replacement with my surgeon he told me I could drive after two weeks (this wasn’t taking into account the vein graft I had on my left leg for the double bypass). But when the hospital discharged me their instructions said no driving for 4 weeks. I waited 2-1/2 weeks before I sat behind the wheel. This week I’ve driven to the grocery twice so far and once to the pharmacy. Sure, it tired me out, but it felt so great to get out in the world again. But now I’m having some problems with my chest incision. There is a one inch spot in the chest incision, right between my breasts, where the wound is gaping open. And there is yellow drainage there. The home health nurse that comes once, maybe twice a week, doesn’t seem to be concerned about the yellow drainage (pus) but I am. And I’m definitely concerned about the gaping spot in the incision. So I called my surgeons office this afternoon and described the chest incision problem to them. Unlike the home health nurse, they took it very seriously. They immediately called her agency and asked them to get someone out to see me ASAP. That’s the good news. The bad news is that it was passed to the regular nurse that comes to see me and she won’t be here until tomorrow. She didn’t give a time of when she might be here but that’s just as well since she’s always one to two hours late each time she comes. I’ve never had a home health nurse before and aren’t sure of what my expectations should be, but I have a feeling the experience is supposed to be much better than the poor care I’m receiving from her. She was supposed to see me every day for the first 8 days and then every other day. I’m lucky that she comes once a week. But, that’s another story. So has anyone else had problems with their incision coming apart? Has anyone had to have stitches redone because of it? Warm regards, Terri

I was feeling great, other than some minor pain from the incision that you’d expect and the soreness of my right arm and shoulder. So when the hubster said he was going to Walmart I said “heck yeah, I’m tagging along!” That would have been mistake #1. A quick stop by my favorite Starbucks to let my friends there know I was recovering nicely. Of course I had to have my usual no-foam, light whipped cream pumpkin spice latte. I do admit that I used one of the mechanical carts for the handicapped in Walmart. Twenty minutes of shopping and I was ready to leave. Since it was lunchtime…well…. Oh yes, I did it; I defiled my stomach with Thai food. What was I thinking? It’s crazy really, because I haven’t had an appetite since the surgery. Food either tastes like sawdust or overly seasoned. Even simple pepper on a chicken breast tasted like the hottest chipotle powder. And the smell of food? Don’t get me started! My sense of smell has heightened ten-fold since this operation. The hubster would come into the hospital room and I could correctly tell him what he’d had for lunch or dinner prior to coming to see me. Back to lunch though, suddenly I had an appetite and I wanted to chow down on some pho tai (rice noodle soup sort of) and garlic chicken. It tasted soooooo good! I couldn’t eat a lot of it, but I did manage to put a dent in it. I felt fine on the way home. We get home and I am so exhausted from getting out and about, that I lay on the sofa (propped up with pillows) and promptly fell asleep. Approximately 6:30 hubby wakes me up for dinner. The smell of food in the air made me want to barf. But, nonetheless, dinner was ready. He’s made a homemade chicken pot pie, which would have been highly satisfying and quite delicious any other day. I took one mini bite and had to actually take a sip of water to get it down. The food tasted like sawdust. I felt like I would vomit. The hubster suggests that perhaps I’m encountering a low blood sugar. He proceeds to get me a ginger ale which I take back to the couch with me. By the time I sat on the couch I knew I was a gonner. No sooner than Greg had shoved a bucket under my chin, I barfed. It was a violent, painful action and one I couldn’t stop. I felt like someone had beat me in the chest with a sledgehammer. And to make matters worse, I couldn’t stop coughing after I threw up. Greg calls Dr. P and tells his answering service what’s going on. Dr. Pollack called me back in less than three minutes. (What can I say; the guy is good) After Greg tells him what’s happened he tells him I need to go to the hospital to the emergency room. Excuse me? The ER on a Friday night? Not this girl! I called Dr. P back and tried to ascertain what he would be looking for on me if I came in. For instance, would the chest incision be okay? His fear was that I would continue to vomit and that would be bad for not only my incision, but mainly for my heart. If my body settled down and I didn’t vomit anymore I should probably be okay. But irregardless he wanted to see me in the ER ASAP. Um, no. I did promise that if it should happen again I would promptly go to the ER, but otherwise I was staying home. And stay home, I did. I feel fine today, albeit a bit sore. But more important I learned a valuable lesson; let your body recover before you try to abuse it again with spicy foods. Regards, Terri

I just posted a picture of my new cleavage so take a look at my photo page. May look a little wonky right now, but I\'m so proud of it I could burst! I worked hard for that badge of honor and membership into the zipper club. How many people go day to day, taking life for granted? This morning when I went out for a walk I smelled the rain in the air, lusted over the colors of the newly fallen leaves, listened to the symphony of the birds greeting me. It\'s a great day to be alive!

Came home yesterday from hospital with 28 pages of instructions. Also discovered that when they operated I had congestive heart failure going on. I knew I was having trouble breathing and doing anything at all, but I didn’t know I had congestive heart failure! My new heart valve is a St Jude’s valve by the way. It’s so quiet, I’ve not heard it click yet. Even though this stuff with the Coumadin is a big pain, I’m glad I went with the mechanical. I’m not liking having the home health nurse come by every day. She told us she would be here only 30 minutes. Actually she was here 1-1/2 hours. Finally I had to be rude and tell her I was very tired and needed to nap. Maybe only 3 minutes of the time she was here was focused on seeing my incisions and taking my blood pressure. The rest was her telling stories about how this patient or that patient recovered and reading my 28 pages of discharge instructions and going over them with me word by word even though the nurse at the hospital had spent an hour yesterday doing that. I know she was just doing her job, but she could have done it much better had she focused on the reasons she was here. Then she tells me my insurance will pay for 90 days of home health care and wanted to set up all 90 days right there. (Home health care is every day, 7 days a week). I told her no way. We’d been told we would only need it for the first 5 days. But other than that annoyance, recovery is going great! I can’t tell you how much better you feel each and every day. If you’d told me on Sunday I’d be going home on Tuesday I would have called you a liar. But here I am! Yay! So for those who haven’t been thru this yet, just focus on healing one day at a time. I’ll tell you, the chest incision isn’t the painful part for me. In fact, my chest didn’t hurt until maybe Monday. It itches! But that’s expected. What really bothers me is a soreness and pain in my right shoulder/arm. I’ve had to put the heating pad on it today several times in fact. I will warn you; your first night home (at least for me) is hard because I found myself waking up at 3am on the dot, the exact time they’d come and take my blood in the hospital. Best of luck to everyone who has surgery looming and to those of us in the healing process and those who’ve already gone through this process. Terri

sick of being hooked up to machines but glad that part is over. They are having problems getting my blood sugars under conrtol. Keeps ging as low as 41. My BP keeps going too low too. Am thinking about all of you, those awaiting AVR and those who\'ve already had it. Guess I can say I\'m a member of the zipper club now.

Terri\'s husband Greg again to bring you up to date on her progress. She is in her regular room in the CCU now and sitting up. She even walked down to the nurse\'s station and back earlier today. The doctor says that everything is as it should be at this stage in the process. I think she\'ll be able to make the next post herself.

I\'m Terri\'s husband Greg and she wanted me to update everyone after surgery. All went pretty well yesterday. They performed the valve replacement and did 2 bypasses. They removed her breathing tube around 8pm, so she is able to breathe on her own. As I was leaving late last night, they were planning on sitting her up. Hopefully, she will be moved out of CICU and into a regular room sometime today. I wanted to send out a special thanks for everyone\'s thoughts & prayers & your show of support leading up to the operation. It has meant alot to Terri and therefore me as well. To everyone, I say \"Thank You\". Greg Grimes

I\'m on the way to the hospital now for my AVR and triple bypass. Please say a prayer for me at 7am. God bless each and every one of us and give us all a long and healthly life. See you guys after surgery., I\'ll be the one leading the wheelchair races down the hall! Terri

Feeling SO MUCH better! Just got off the phone with Dr. Pollock and I feel SO MUCH BETTER!!! He told me he sees no reason why I can’t be taken off the breathing tube after 5 or 6 hours, just about the time I’m waking up. He wanted to know which Dr had told me two days for the breathing tube and seemed to be angry about the dr saying that. He said it is HIS decision, not the dr that puts you under. I think I love Dr Pollock! In addition we discussed the mechanical vs tissue valve again and he told me again his reasoning for wanting me to go with the mechanical valve. So I’ve changed my mind, here at the 11th hour, and will be having a mechanical valve put in the old ticker tomorrow morning. I’ll be running laps around ICU before the days end tomorrow. :-) Happy trails ya’ll! Terri

When I got to the hospital this morning for the pre-testing for tomorrow’s surgery it hit me square between the eyes. My entire body started shaking and my breathing became labored. I signed my name on the sign in sheet and sat down in the waiting area. They called my name and discovered I was in the wrong area. The gal started to tell me where I needed to be and suddenly realizes I’m in no shape to even remember my own name, much less find the P.A.T. area. So she tells her co-worker she’ll be right back and she proceeded to put her arm around me and comfort me as she led me to the P.A.T. office several corridors away. She didn’t leave me though. She signed me in and took my insurance cards and picture ID and gave it to the gal registering me. She stayed with me the entire time until they called me back for my testing. I’ve never been treated like that in a hospital before. She showed such compassion for me, I was floored. And when she turned me over finally to the next nurse she gave me a huge hug and kiss on the cheek, telling me I’ll be in her prayers tomorrow. I had no idea there were humans like that on this planet. She is an angel in human form. I made sure to write down her name and I’m sending a note to the hospital about her this afternoon before I forget. What a blessing that sweet young woman was. It didn’t end there though. The next angel, Cheryl, acted in the same manner. She went a step farther and insisted I sit in a wheelchair while we pushed me all over the hospital from one test to the other. Then she pushed me outside in the wheelchair, all the way to my car, which was parked far, far away. The only bleak part about today’s experience was my meeting with the Dr that will be putting me under. (Can’t spell that word, it’s a toughie you know) He informed me that the breathing tube would be kept in the entire day tomorrow and most likely not removed until Thursday or even possibly Friday. WTF? Are you kidding me? That damned breathing tube has been my biggest fear throughout this entire process. I burst into tears and begged and pleased with him to try to remove it while I’m in the recovery room. He said he couldn’t though. I got home less than an hour ago and I’ve been crying ever since all because of that damned breathing tube. I don’t want this operation now. Terri

I’m off to the hospital for a full day of pre-testing for my surgery tomorrow. I woke up this morning with a peace and calm in my soul. It’s not everyday that you can do something that you know will be saving your life. We’ve all been given a special gift in that. Anyway, will try to post more later as I know this journal will be my lifeline today. But for now it’s off to get poked, prodded and shaved. Peace be with everyone today, especially those going through the big surgery today. My thoughts and prayers are with each and every one of you; my zipper club brothers and sisters. Have a blessed day! Terri

Actually one more day when I wake up in the morning, but you know what I mean. I feel so much better about things today. I had a lovely morning shopping (and buying). I bought three books (two of them brain quiz books), a full pound of jelly belly jellybeans, new slippers, some jewelry making supplies and a full set of sharpie markers in assorted colors. Nothing to really break the bank, but stuff I wouldn’t normally buy for myself. I came home and had a totally selfish, unhealthy, yummy lunch of a mini bagel, a handful of grape tomatoes, a small hunk of stilton cheese and a few jelly bellies. Now that was a good lunch! And then this afternoon I made a snack sized bag of microwave popcorn. All the things I love! I spent the afternoon having visitor after visitor. I’m so happy that they came to see me before the operation so I could enjoy talking to them and visiting with them. And then they all told me that they, and the rest of the neighborhood, are planning on bringing our meals to us for the first week after I come home from the hospital! So unexpected and so appreciated! Yes, it made me cry. I have such wonderful neighbors and friends. I’m truly lucky! One lovely neighbor came by especially to tell me an experience from her life that she thought might help me. She wanted to let me know that there will be angels with me on Wednesday as I go through this life changing surgery. I can’t begin to tell you all how much it meant to me for her to tell me what she did. With her permission I’m telling you guys so hopefully it will comfort you as it did me. Her husband was diabetic most of his life, from early childhood. So in adulthood he had to be put on kidney dialysis. He was on it 18 years, which is a miracle for a person with no kidney function to live that long. The last time he had dialysis he had a heart attack and had no pulse. They were able to restart his heart, but they later took his wife to the side and told her there would be no more dialysis for him, he wouldn’t survive it and that he had days to live. Then the doctor told him there would be no more dialysis treatments. He knew what that meant but instead of being down about it, he put a big smile on his face and made a joke about the dialysis nurses getting sick of him. The doctor got tears in his eyes and ran out of the room. He’d become good friends with Paul and his wife over the years and he was having a harder time with him dying than Paul himself was! Like Paul said to his wife, he\'d come to terms years ago that he\'d die early and every day had been a blessing to him, everyday an unexpected gift from God. That night in the hospital Paul tells his wife he sees several beautiful children standing around the bed that look like cherubs. He tells her with amazement, “I think they’re angels. Do you think I could take a couple home with us?” His wife says, “Sure, I’m certain you can.” He wasn’t being given any type of pain medication or anything that would make him have hallucinations. She knew he was seeing angels. The next morning, before they moved him to the hospice where his wife would stay with him, he asks her if she sees the two men in the doorway. She tells him there’s no one in the doorway. He tells her, “Yes there is. There’s two men there smiling at us. They’ve been here all morning. They’re real nice guys, I had a long conversation with them before you got here this morning.” She got goose-bumps on her arms. She knew he was seeing angels. He lived six more days and during those six days the angels came back several times, watching over him, letting him know everything would be okay. I believe he did see angels. I don’t know if I’ll see angels tomorrow during the tests or Wednesday; surgery day. But I know that if I do they’ll be there to watch over me and let me know everything is going to be okay. In fact, I have to wonder if my neighbor doesn’t have a little angel in her because she said the perfect thing to me to make me feel comforted. I feel calmer now (at least for now – LOL). I feel at peace with this finally. So many amazing things have already happened to me on this journey to let me know I’ll be okay. I’ve had a ghost tell me to “Have a little faith,” and now a neighbor telling me angels will be with me. I get the distinct feeling God is trying to pass a message along to me that I’m worrying needlessly; I’m going to be okay.

Feeling much better this morning about things. Still very scared about Wednesday’s operation, but when I woke up this morning I decided I was going to put it out of my mind completely! I’m going to focus on having an enjoyable day since it’s my day free day before surgery. Tomorrow I’ll be spending the whole day at the hospital having all sorts of pre-op tests, touring the cardiac unit (which I’m unfortunately already familiar with) and meeting with various doctors. I just pray that after all this, once I heal, I don’t have that same chest pain I get occasionally. I don’t know if anyone else gets it, but it feels like I’m having a heart attack, my jaw is painful on both sides, I get sweaty and headachy, can’t breathe and feel like I’m going to die from the chest pain. If I still get that after the operation…well I’m not going to think about that, right? In fact, I’m going shopping this morning and am going to buy myself something frivolous. Not sure what, but something totally frivolous! My prayers are with everyone going through this difficult surgery this week, and there are several of us. May we all get through this surgery with flying colors and heal quickly, returning to a full and happy life. In the immortal words of Tiny Tim (or rather, Charles Dickens), God bless us every one!

Oh my gosh! Two more days till surgery! It’s not been a good day for me. I’m in major freak-out mode. Yeah, I’ve been a little depressed this weekend and I know it’s all about the surgery. Take for instance today - I go in a department store this morning with the hubster and a major wave of depression hit me, along with the crankies when I’m in the dressing room trying on a bra for after surgery. In fact, I got confrontational with the cashier. I bought a front closure bra and my husband bought slippers for himself. I asked the cashier to put my bra in a separate bag. He said “sure” and proceeded to put them in the same bad as my husbands slippers and can of chainsaw motor oil. I look for the bag with my bra, not realizing he put it all in one and finally ask the cashier where it is. He tells me he put everything in the same bag. I saw red! My voice was eerily calm but firm as I said to him, “Really? I ask you to put my bra in a separate bag and you say yes, only to ignore my request and shove it in a bag with a grimy can of motor oil and something someone’s feet has been in? Really? Why bother agreeing to put it in a separate bag if you know you’re not going to?” He ignored me and started silently ringing up the next person in line. So I pressed the issue. “You can’t even be bothered to acknowledge me now? Why do I have the feeling you’ve never made employee of the month? Maybe it’s because your customer relations skills SUCK!” Again his eyes stayed downcast and he was totally silent. I walked away though (lucky for him). But that wasn’t me. I’m the kind of person that says, “Thank you” to even the rude cashiers that can’t be bothered to thank a customer. I’m that overly nice person you see in line. Not this time though. I do have to say though, my husband said loudly (as he pulled me away) “why bother, it’s obvious he doesn’t care what the customer thinks.” The husband isn’t making my weekend any better because Mister Supportive used my [hone upgrade yesterday to upgrade his phone to a smart phone. You know why they call them smart phones? Because they’re smart enough to make you addicted to them within the first five minutes of getting it. He’s had his face buried in that danged phone ever since we left the darn store. We’ve always been the ones to make fun of people that have their faces buried in their phones all the time. And now here he’s gone over to the dark side. This isn’t the weekend to start ignoring your wife. His timing really sucks. For all he knows I could die on that operating table Wednesday and there he’s spent his weekend idolizing a phone, barely saying ten words to me all weekend. Jerk! I want to scream, I want to kick, I want everyone to feel the pain, fright and confusion that I feel now. How dare life go on as usual! How dare people go about their business like this is just another normal weekend! How dare the world keep revolving when I’m about to get my chest splayed open and my heart stopped. I can’t concentrate on anything today. I just feel restless, sad, angry, scared, drained, depressed. I really need to pull myself together. Maybe I’ll just go to bed early and hope for a better day tomorrow. Sorry to be such a downer guys.

Three more days till surgery! I’m starting to get a little moody and cranky and I’m not sure why. But anyway, that’s not what I’m yammering about today. This morning my husband and I went to the AT&T store because he’s been thinking about upgrading to a smart phone. Yes, we are the last people on the planet to not text or use a smart phone. I’ve got the same cell phone (pink razor) that I’ve had for five years. He upgraded to a ??? (Not the Inspire, but the other one – Infusion?) Anyhoodles, point is he’s been like a kid in a candy store all day. The salesperson tried to talk us into going with a U-Verse bundle. I’ve been wanting to get U-Verse (odd that we don’t have it since our oldest son works for AT&T installing U-Verse) but three days before open heart surgery is not the time to get it! Yeah, we ended up getting it. What can I say; it was a deal hard to pass up. So we had the option of upgrading our phones at the same time at a fantastic deal. Free upgrade. Hubby upgraded his but I said no. My reasoning? (And yes, I said this out loud). “If I don’t make it thru the surgery you’ll be stuck for two years with two smart phones.” I just can’t seem to see the future past Wednesday. I know I should, I know I need to; I know I’ll have a future past Wednesday. But I can’t bring myself to make any major changes right now. I guess the surgery and decision of which heart valve is enough of a major decision and my befuddled brain can’t accept any more major decisions. Guess I’m taking life one day at a time. (Sounds like a good name for a TV sitcom, eh? “One Day At A Time.” Ha-ha.) My husband is making plans for things he is going to do while I’m at home recovering during the week pr more that he’s taking time off. Lo-fat meals he can make for me, teeth cleaning appt, new eye glasses appt, some stuff around the home honey-do list done, etc. And I find myself feeling extremely irritated as I hear him planning these things out loud. Irrational, I know. But there you have it. Maybe I’ve just got the pre-surgery jitters. There are so many things I need to be doing to get ready for Wednesday, but I can’t seem to focus on anything. Just call me Grumpy.

Well, this time next week I’ll be in surgery getting a new valve and triple bypass. I’m scared but excited at the same time. How’s it possible to be dreading an experience but also looking forward to it? But I know everyone on this site has had the same feelings. Next Tuesday I go to the hospital for the usual battery of pre-op testing and to get a tour of the cardiac unit here at Baptist East. I’ve been in there twice before as a heart patient so I’m already pretty familiar with it, but it will be nice to meet the people that will be taking care of me. I’m also meeting with the doctors that day which will be taking care of various parts of my body during my hospital stay. One for the diabetes, another for my pancreatitis issues, the doc that puts me to sleep and controls my pain, my heart surgeon. I think the only doc I won’t be meeting with will be my cardiologist, but he already knows me well (he’s even a Facebook friend). So I’m trying to make sure I’ve got a complete list of questions and concerns ready for them. Poor doctors won’t know what hit them when I come in with my huge list of concerns and requests. Ha-ha. But with all my advance preparations I keep feeling like I’m forgetting something! I’ve bought several types of PJs, (which I probably won’t get to wear in the hospital), a huge arm rest bed pillow thing (I always forget what those things are called) stocked up on enough groceries that I won’t have to shop for two months, arranged for someone to keep an eye on my townhouse while my husband and I are gone (he’ll be staying at the hospital with me), bought books and knitting supplies to do while I recuperate; I’ve done everything I can think of. I even pulled my old crutches and walker out of storage in case I need them. But I keep feeling like I’m forgetting something. Not sure what. Does anyone have anything that they found they wished they had done or brought to the hospital? Should I be shopping for a special bra? Maybe loose clothing so nothing presses against my incisions? Maybe I should stock up on bandage supplies? Fever tape? Tylenol? Coffee? And recliners! Oy! Should I buy a recliner for recovery at home? I will be by myself for much of the day after the first week at home with the occasional neighbor looking in on me. My husband is a work-a-holic generally spending 12 hours at day at work, so I’ll be on my own for the most part. My daughter has offered to come up here from Alabama and stay with me for a few weeks, but I’m not sure that I’ll need her. Do those who have been through this find that they can take care of themselves for that first week at home or should I have her come up to stay for a couple of weeks? Maybe I should have my husband take more time off? I just don’t know. He’s taking off at least 2 to 3 days after I get home, depending on the day I get home. Will that be enough? I wish I had a crystal ball so I could know exactly how much difficulty I’ll have getting around afterwards.