Susan's Guestbook

Hello, Susan! I know we haven\'t written in a few weeks, but we must be communicating telepathically because I was just thinking today, I haven\'t written Susan in a while, i need to see how she\'s doing. Or maybe, I just picked up on the extra strong vibes of love coming all the way from Kansas-I am so happy for you that you now have a new love in your life. Once you have known that extra special love of an animal companion in your life, you really do want to have it again, even while you still miss your departed friend. I know he is happy for you, too, and proud of the courage it took to open your heart again when you know the pain of loss. I hope you two will have a long and happy life together, and take care of each other. Let me know how he is coming along. And how are you coming along now, physically? Now that we are finally getting some cooler weather here in VA, I\'m hoping that some of the tiredness and shortness of breath I felt trying to stay active in the summer heat will dissipate along with it. And aometimes it does. I was killing myself working first in the yard on Saturday, and then in the kitchen on Sunday, and then I would stop and say to myself, hey, look at me, I\'m doing all this and not feeling tired. But then sometimes like at work tonight, just walking from my desk to put something in the vault (a medium-sized walk, more than a couple of steps, but not too many), and I would just feel so tired, my legs would actually ache. I\'m wondering if it\'s time for me to face the cardiologist again. I don\'t want to, and the job is one of the reasons. Even though I had been there a year and a half as a temp, and they know all about my history, still, I want to start off as a \"new\" employee being the \"perfect\" employee, not one who has to keep running to the doctor. Fortunately, since my hours are the three to eleven shift, I can do things like get my blood tested in the morning before I go, but the cardiologist is always in the hospital in the morning. How inconvenient! And maybe how foolish of me to be worrying about such things when my health should be the only consideration, but that\'s me. And the job is not the only reason I don\'t want to go. Maybe it\'s just the best excuse. Anyway, in the hope that some blood loss is causing me to be anemic, I started taking some iron pills and I\'ll see if that helps. And like I said, I don\'t feel that way all the time, like I did when I first got sick. So maybe some of it is real, and some of it is paranoia. I never used to be paranoid about my health at all. Do you find yourself worrying about things you didn\'t before the surgery? Anyway, except for the occasional tiredness, the job is great, and I have been very happy learning about all the benefits I have now that I had once taken for granted in my life before I had to be without them for two years. And Theo is thrilled that our morning trips can now be made in some cool, crisp air. He certainly got all his energy back when the summer departed. I wish I could run with him when he gets a scent and wants to go, but no way can I do that so I just tell him he has to appreciate that Ii can get out there with him at all, and I try to do the same.Thank goodness he\'s little. We had a cockapoo once when we were growing up. My brother and I would play badminton out in the back yard, and \"Dusty\"would grab the shuttlecock every time it hit the ground and run away with it. They are very fun dogs. I think this thing is trying to disappear on me, so I better close before something happens and this all vanishes into cyberspace. Great to hear from you, and again, very very great to hear your news, Theresa & Theo

Hello, Susan. I have had that frustrating experience of writing a message and then watching it vanish into Cyberspace. I try to remember what I said and recreate it, but it nevers seems to come out the same. It\'s kind of strange to think that we all change that quickly, that maybe something you were just ranting about doesn\'t seem to be such an issue anymore. Anyway, thank you for your message. I am still so happy about it, it almost feels like a dream, especially because I can\'t tell anybody at work about it yet. Some of their temps are being let go rather than hired on permanenlt, and they swore me to secrecy unil they make the official announcement. So I\'m telling everyone I can outside of work! It is also wonderful to have something besides the surgery/heart valve issue be the \'most important thing about me\'. Except for when I have to deal with something specific to it (like our beloved coumoudin), it is gradually moving away form being a central part of my life. I am getting closer to having that \"new normal\". It will be quite a relief to have insurance again.(You\'re right, paying for coumoudin is adding insult to injury.)but I will be sticking with the wonderful doctor who got me through this with the best of care when I had none. I wanted to tell you this story because I believe anytime we can find something/someone good in the world we need to concentrate on it, and share it with people we care about. So let me tell you about Dr.Muse. When I found myself unable to breathe a couple of days before Christmas last year, I called a couple of clinics trying to find someone who would see me. I thought I had pnuemonia. He was the only one who would agree to see me, and worked me in that afternoon. Then he didn\'t just hand me some antibiotics and say good luck, but he gave me an EKG and found that my heart was in A-fib. He sent me to the catholic hospital his clinic is associated with, and they saw my chest filled with fluids, and the next morning an echo showed the cardiologist what the problem was. Dr. Muse didn\'t just act like he had done his part and was through with me, though. The nurses told me he called every day to check on me. One afternoon, he came by the hospital and sat down at my bedside and talked with me for an hour or more, about everything-physical, emotional, fiancial-I was facing. This was at the end of working his day at the clinic, which is on the other side of town 20-30 miles away. Can you imagine how much it would have cost to get an hour of a doctor\'s time if you were paying for it??! (that is if you even could!!)This is truly a doctor who is in the profession because he cares deeply about people, and I feel extrememly lucky to have found him even if I had to do it in unenviable circumstances. He has not only given me amazing care, but he has reaffirmed my belief that we should look for the blessing in everything that happens to us. That was just one time I didn\'t have too hard. Theo was another, but I think I may have already told you about him. That is a really great picture you have posted. You look so relaxed and happy. It is an inspiration! \'Look, you can go through this ordeal and come out on the other side just like this.\' Keep smiling, Theresa

Hi, Susan. I am a little late to welcome you to the East Coast, but I hope you enjoyed your trip. We, like most of the country are having an unbelievable summer. We have already broken the record for the number of 100 degree days and we are having a few more this week. Theo and I went out for our walk before the sun came up this morning, and it was so awful out there already, I didn\'t think I would be able to make it. I really couldn\'t breathe, and I don\'t think it was me. The humidity, I found out when we got home, was almost 80 degrees. But I kept on going and we did our 3 miles like I have done since I was a teenager, so I guess that is a success, no matter how I felt doing it. Theo didn\'t seem to be bothered by it until near the end, which is also a success because although he looks like a puppy at only 12 pounds, he is in fact a middle aged dog. That\'s what the vet told me-we don\'t know for sure because he was a stray, found by a rescue group in the Va countryside. For most of my life, I have always said the walks are for my dogs, but now I know they are just as important for me. I think they helped me get back to my work and my life faster than I could have otherwise after the surgery. I lost my dad when I was 13, but he gave me my first dog and so I have often thought that he had a bigger influence on my life than people who were in it a lot longer. He gave me the tools I needed to recover from the crisis I would face more than thirty years after his death. Thanks, Dad. I hope your dad is recovering well, and that the two of you were able to have some special time together while you were there. I received some totally unexpected and wonderful news yesterday and so I got another chance to remind myself that this is what I did it (going through the surgery and living with the aftermath)for. Some days I have just had to hold Theo and say that about him, but as I tackle each problem it left behind one at a time, those days are becoming fewer. Yesterday, I learned that the company where I have worked as a temp for over a year is offering me the position, permanent, and full time, with benefits. I felt like I had won the lottery! I have not tried the challenge of dealing with Coumoudin while traveling as you have, but I have had to try the challenge of dealing with it without insurance, and despite the fact that I have a great clinic and the world\'s best doctor (I have got to tell you about him in another message, hopefully this weekend I can get the chance to write again)it has been scary. See, that was one of the things I had a hard time with-I thought, well ok, I have this problem and I have to have surgery or I won\'t be able to live with it, but then I will be done, and I can go back to my life. Well, I could go back to my life, a little at a time, but it is not over and never will be for us. We have this medical \"issue\" that we have to deal with forever. FOREVER? That really upset me, and although I thought the valve could be repaired and never considered what kind of replacement I would get, I have found myself wishing more than once that they had just put in a tissue valve and let me have a good worry-free ten years rather than try to give me a longer life span of a diminished quality. I couldn\'t stand the thought of having doctors a regular part of my life-they never had been, and I didn\'t want, and couldn\'t afford, to have them be that now. I have really resented the choice somebody else made for me because I didn\'t believe it was one I would have chosen for myself. Well, I said earlier that I was trying to tackle the problems it left me one at a time. Maybe this solves the financial one and I can move on to the next. Anyway, it was fantastic news and I am very grateful, and when I came home and told Theo, he ran through the house like the puppy he appears to be. How could he know what I was talking about? Because they do-we know that, right, no matter what the scientists say.He hadn\'t run through the house since the cool air of winter energized him, so I know he was excited for me. It was great to hear from you, and I will try to write agin this weekend and tell you the story of my wonderful doctor. I think you will enjoy hearing that there are still people like him in the world. If I hadn\'t met him, I might not believe it myself. Take care, Wishing you all the best, Theresa (& Theo)

Hello, Susan. It\'s Theresa. Hope you are well. I have to go for my monthly Coumouding check sometime in the next couple of days. I have my fingers crossed that I won\'t be back to the once or twice a week business. I have felt the same kind of FEAR that you have about this stuff, and a lot of anger about its effects on other parts of my life as well. I remember being awakened early one morning by the phone ringing, and after i reached over and saw it was the doctor\'s office, thinking, oh, this can\'t be good. My INR was 8! I was taken off the stuff for a couple of days, and it didn\'t go down near enough, so I ended up being off for a week. The doctor, I guess, trying to relax me, made a joke(?) about don\'t hir your head, and wouldn\'t you down it, I bumped my head pretty badly the next day getting into the car. I didn\'t know whether I should go to the ER, or forget it. I was just so scared I didn\'t go to sleep that night until the wee hours of the morning when I couldn\'t hold my eyes open anymore. I remember the next day thinking, what kind of life have I saved myself for? Well, I had saved myself for Theo, for the main thing. That is my beautiful little guy in the picture. The vet told me he has to be at least 8 years old, but he is the size (12 pounds) of a puppy and that is what most people think he is. I love him so much. I have a great story to tell you about his birthday gift to me the other day, but it is time for me to get ready to get out of here and go to work. I\'ll save it for the next chance I have to write you. It\'s much happier than that Coumoudin one, but I thought I would share ny awful experience with that to let you know you are not alone in trying to learn to live with this fear. I believe that you will find the right successor (that\'s what I call them-not replacements, but a part of who came before) to your beloved Lucy and it will be someone who needs you as much as you need them. I look forward to seeing a photo of you two when the time is right. Gotta run. Take care, (boy, that is not just a salutation with us, is it?) Theresa

Hello, Susan. First let me apologize for being so late in getting back to you. I work two jobs, and live in a home by myself so there is always something that has to be done there. I have to limit my computer time, just as if i was a teenager, because otherwise, I would get on there and stay all day! So if my responses appear infrequent, please don\'t think i do not appreciate hearing from you. I very much do! Coumoudin has been the bane of my existence since they put me on it, and one of the things I am having the hardest time learning to live with. It took from January to June to get me on the right dose, and I haven\'t gone in for my July reading yet, so I can only hope it has stayed where it needs to be. My biggest problem with it though, was the way it messed up other problems I had under control. I would get so frustrated that sometimes I just skipped a dose. My cardiologist was very blunt with me when I told him that-he said doing it could be FATAL. Well, I don\'t want to die-if I did, I had the perfect opportunity before I went through all this. My other problem with it is that is a SCARY medicine to be on. Too much-too little-either way you could be trouble. When I think about having to do this for the rest of my life--well, there is still some resentment there. I can only acknowledge it and go on. I guess all people who have some issue that they have to deal with FOREVER feel this way. One of the reasons I joined this journal community was so I didn\'t have to deny these feelings anymore. it didn\'t help for months trying to act like the only thing i felt was gratitude to be alive. Yes, I am grateful, but...there are other feelings as well, and it feels GOOD to be able to say them. Our surgeries were only about 10 days apart, so when you are having a difficult day, remember that there is someone else coming up right behind you! I could never have believed even a week before my diagnosis that this is where I would be now. The little beagle you see in my profile picture and his beloved predecessors have kept me healthy for years with our long daily walks and I saw a doctor about once a year for 15 minutes to tell me I was fine. Maybe some part of me is still in denial about all this! That is something else people who have not been in our position find hard to understand-it\'s like well, that\'s what happened, get it through your head already. But we know it\'s not that simple, don\'t we? Like the loss of your beloved Lucy, we have lost our previous life and we need to mourn it. It is the first step to accepting that we cannot have our old life back, we have to create a new one, and incorporate our losses into it. Then we will have a \"new normal\" and we can go forward with that life, the one we fought for by going through this ordeal. I know when my strength was lagging for the fight, I had my little Theo (the beagle) to keep me going. I was a stray that I got just a year before all this when his predecssor lost her long battle with cancer. I couldn\'t bear the thought of him being without a home again so soon after coming into mine. I admire your strength in getting through not just the loss of your previous life, but your companion as well. I don\'t know how I could have done it. It breaks my heart to think of you having to. I can only tell you that as someone who has suffered the same kind of heartbreaking loss that the pain of remembering your friend will fade into the memories of your wonderful life together. Why did I just make two references to the issue with \"broken\" heart analogies? Must be some Freudian slip going on there-HAHA. I will end on a happier note, because whenever the \"bad\" feelings come back, I try to feel them and then \"end\" on a happy note. I am 48 years old today, and Theo and I took our 3 mile walk early this morning. We need to beat the sun because the summer here is more brutal than usual. I feel \"good\" today-happy to have the birthday I almost didn\'t, and very happy to share it with my \"baby\" Theo. I won\'t be doing anything \"special\" because that is all I need. I hope I have some time to sit in my library and read a good book. Thank you again for writing me back. My email address is mormantheresa@yahoo.com and please know that if it seems to take me a while to respond, i do appreciate \"chatting\' with you, and i will get back to you as soon as I can. Best wishes, Theresa

Hi Susan Was thinking of you and wanted to tell you. You changed your profile photo, for a second I thought I had the wrong Susan. Did your a-fib ever resolve itself? Did you ever get a home INR testing machine? That\'s the way to go, if you can. I am in rehab #19 visit and getting stronger each time. Time really does heal. Take care. Fran

Susan, i did not want to let you go before expressing my deepest sympathy on your loss. As you can tell from my profile pets are very important to me, and I too have felt that devastating loss when their too-brief lives comes to an end. When I read your journal, I could feel the strong bond between two souls, and I know you will see him again. It may be a long time, but he will be waiting for you.My thoughts are with you. This is something else that takes a long time to overcome and incorporate into a new life. You must be a very strong woman. Take care. Theresa

Hello, Susan. Reading your entry in my guestbbok, and then your journal entries, i was struck by the intense feeling of -My, Gosh.I could have written that. Someone out there has been through so much of what I did. I, too, went into the hospital intending to have a repair done on my mitral valve-the possibility that it would require replacing was just somehow inconceivable to me. I mean, it had all come on so suddenly. If it was bad enough to require a replacement, wouldn\'t it have been in worse shape for longer? That was my way of thinking and it was the first of many misconceoptions that have complicated my recovery. I really believed I could walk out of there and forget I ever had a heart problem. I\'m still struggling to accept that is something I will have to live with for the rest of my life. That is what I meant when I ttitled my journal-the new normal. I can\'t get back to the way things were-I need to incorporate this LIFE-CHANGING fact and all its problems into my life now, including the anxieties about what is still not perfect, and the effects of that hated coumoudin, and the changes (mostly positive) in my relations with loved ones. I said to one of my doctors recently, that there is no part of my life that this hasn\'t affected, and that\'s pretty overwhelming. No wonder we feel frustrated trying to fix it all at once! Something else I have come to accept about this is that while the first months give you that feeling of dramatic progress (carrying my own groceries into the house after a trip to the store was such a gigantic thrill), by the time you get to where we are, six months out, there are fewer dramatics, and progress seems to come to a halt. It is very easy to feel frustrated, and that is what I am fighting against now. Finding this website has been so helpful to me! It has relieved a lot of the loneliness I\'ve felt over these months (in spite of having people who love me very much). Somebody who has been there or is there with you now can understand and help in a way that others just can\'t. I hope i can be one of those for you. Please stay in touch. I would like to write more now, but I am getting ready to leave for work in about a half hour so I need to wrap it up for now. Thank you so much for writing to me! Like I said, I read your entry and said, out loud, THANK GOD-Someone out there \"gets\" me. Best wishes, Theresa P.S.-My surgery was on Jan.25, 2010. You said yours was in January, too?

Hi Susan Thanks for dropping by my journal with anniversary wishes. Time is flying by, isn\'t it? So your rehab is going well I see as you are the baby of the class. Just seeing you there probably has a lot of old hearts fluttering! I still have the irregular heart beats as well and don\'t know if anything will or can ever be done to try and correct it. For now I take my pills. I see the cardiologist next month for a pulmonary stress test so I\'ll have my list of questions ready as I expect that will be the last time for a while. I don\'t suffer from A-fib so perhaps that\'s more debilitating than the missed, double and triple beats I get along with the pvc\'s. Since starting the Beta Blockers though I\'m really hardly ever feeling them - perhaps once a day as opposed to 16-18 per day. I pray your rehab sets you well on the way to being your ole self. You will really gain the confidence to know what you can and can\'t do. Take care and enjoy the great weather. Stay out of harms way. Cheryl, Ontario