Jan's Journal

it\'s been a long time since I last wrote in my Journal and a lot has happened since then. My surgery to replace the aortic valve and for a right coronary artery bypass was January 4, 2010. I came home 5 days later. I was back in my office, working, by February 1st. I started Cardiac Rehab, phase II, and have finished that already! Now I have signed up for Phase III, which I will do at our city\'s recreational complex. they have a complete Cardio Room and also a strength training room. My husband is working out with me and we have a personal trainer for the first month to get us started. We have also joined the local chapter of Mended Hearts and just this morning we took the accreditation class to become Visitors in the hospital where I had my surgery. Next we will shadow a fully accredited Visitor for a few visits, until we are comfortable with the format. Mended hearts visits with patients and their families, in the hospital, either before their surgeries or after. Visitors are available to offer support and answer questions (not medical questions, of course). Mended Hearts volunteers also visit with families of patients undergoing cardiac cath procedures. I have also joined WomenHeart, an organization that provides education and support to women with heart disease. I\'ve met so many nice people - both patients and professionals! If you haven\'t visited any of these organizations, you should! Just a bit about the last months: with the help of family and friends, we made it through pretty easily. What a blessing it is to have such support. the fabulous food didn\'t hurt, either! And, the flowers: I could almost have opened a flower shop! It was hard giving up my pain pills but the time came when I decided I just didn\'t need them any more. Each day I am stronger and can do more. I feel great and am already doing things I had stopped doing before the surgery. To each of you who are facing open heart surgery for the first time, you will be in my prayers even though I don\'t know you. Let your family and friends be your support. They will help you in so many ways. Most of all, listen to your health professionals and do what they tell you. You\'ll be a new person when this is all over with. God bless!

Cabin fever prevailed and I got out of the house today! It felt wonderful! Ed took me to the office first where we visited with co-workers for a while and I actually did a bit of business while I was there. Then we went to the Olive Garden for lunch. That was really nice! After lunch we came home again and I was ready for a nap. I\'m still sitting in the back seat and that feels strange but I\'ll do whatever it takes to get out. Why am I sitting in the back seat? Because my surgeon said I should. Seems the air bags could cause serious damage if they inflated - imagine the pressure on my poor split breast bone. Anyway, the back seat is ok with me for a while yet. Sheryl, you are anxiously waiting for your dad\'s surgery tomorrow. I know none of you will get much sleep tonight and nothing I say will make it better but from the great vantage point of already having been through it, I found myself very calm the day before my surgery. I had faced all the possibilities, I knew God was beside me and with me throughout the surgery and I had complete faith in my surgeon, Dr.Knight, and his team. My family was with me and that helped tremendously. Finally, I knew that family and friends were all praying for me and I felt their prayers. Please don\'t be afraid. Your Dad will be just fine, in fact he will be better than he has been in a long time! Please write to me after the surgery and let me know that he is doing well. You will all be in my prayers. susan Murphy of Overland Park, KS. Thanks for your words about those ocular migraines! I\'ve had ocular migraines for years and they sound just like yours with the zig zag lines. I don\'t get the headache pain either. However, these after surgery were completely new to me and really scared me! thanks for sharing your experience with me. Makes me feel a little less weird to know that others have experienced the same thing I am going through. Aren\'t these journals wonderful? It\'s so good to be able to share our experiences! Jan

I haven\'t been very faithful about keeping this journal but I think that\'s just a sign of progress. I am walking up and down the stairs several times a day now and walking out to the mailbox. I even made lunch today! I have also started walking on the treadmill every morning and it feels really good! Yes, there are still setbacks - little ones. I get tired so fast. And, I still can\'t do many of the things I want to do. I still have trouble bending over to pick up something and wanting to lift something that weighs more than 5 lbs. My purse weighs more than that! But, I look at all this as just bumps in the road to recovery. To those of you waiting for your surgery date, get your support group around you and let them help you. All of the wonderful friends, family, co-workers who have shown their support have helped me more than I can ever tell them. The flowers are beautiful and day-brightening; the food has been fabulous! Ed and I haven\'t eaten so well in months. Sue brought me some great books to read and Fred brought over tapes of old tv shows that are a hoot to watch! People are so thoughtful! I hope to start cardiac rehab soon and will let you know how that goes. To those of you awaiting surgery, get over your fear: you WILL do fabulously well and be better than you have been in a long time. To all my \"village\" who have been so loyal and helpful, I can never express my thanks and gratitude enough: you guys are the best of the best! Jan

Each day brings something new and each day I feel a little better. I had a bit of a scare last week when I woke up and couldn\'t see! After consulting my surgeon and getting to see an opthomologist, it turns out that I had something in the migraine family. Seems it might have been triggered by the anesthesia from the surgery or by some of the drugs I now take. If this happens to you, don\'t panic! When you first wake up in the morning, you will find it very hard to focus and it is like looking through a strobe light, or like your tv is trying to acquire a satelite image and not all the pixels are lining up right. The doctor said it can be accompanied by a really bad headache (migraine type) but I didn\'t have that. He said it could go away quickly or it could liinger for months. Also, now that a lot of the drugs I was on are about gone, I hurt more than I did right after the surgery. Several medical personnel have told me that the anesthesia used during the surgery can remain in your system for a very long time! Something like 2-4 weeks for each hour you are in surgery. Don\'t know if that is accurate but it might explain some of why I seem to tire so quickly. Merm - thanks for reminding me of all those wonderful chefs, in the freezer, in a box, in a can! I think we will be exploring more and more of them. This morning I woke up with a craving for jello! I also have cravings for salt now that I must limit my intake of salt. Boy, would a potato chip taste good right now! Finally, I must comment on daytime tv. With Conan O\'Brien being booted off the prime time or late night spot, or whatever that is all about, why don\'t they put him on daytime tv? He\'d certainly be lots better than those soaps and could gather a very loyal following! I have been reduced to watching Oprah! Never knew there was so little of value on tv, even with all the channels we have. Thanks to loyal friends who have supplied me with movies and old tv shows. Wonder if I could become a tv addict? Speaking of addict, I am officially off all pain pills. It\'s a wonderful thing to be able to muffle your pain in the warm, peaceful atmosphere of a pain pill, but scarey when you start to rely on that pill. So, I have decided to only use pain meds if I have a really bad night, which hasn\'t happened yet. Daytimes I just tough it out. As the numbness wears off in the area of the \"zipper\" I become more and more aware of the pain, and the itching as the incision heals. But this is a good thing, too, because I know I AM healing. One last comment for now: I am suffering bouts of \"after surgery\" blues. I can be fine one minute and bawling the next. Anything and nothing sets it off. My husband is a saint! He seems to manage my moods so cheerfully. Don\'t know what I would have done without him through all this. What did the rest of you do when those blues hit? Or did you suffer from them at all? Sometimes I wish I was a drinking person! Jan

Kristina from Minnesota wrote that her surgery date is next Tuesday. You will be in my prayers constantly and I know you will do well. Have you read Adam's book? It really helped me and my family. My husband and I even watched the video of the actual surgery! Not everybody can do that but I found it awesome That God can use our surgeons as his eyes and hands is a miracle and well worth seeing. I walked down the steps to the front door and back up again today! That's just 10 days after surgery. Boy, am I ever impressed with me! Also, Kristina, I am from Minnesota, Faribault, and we Minnesota girls gotta stick together! Talk about your surgery as much as you can. It helps you and your family will just have to put up with you! Arrange for a friend to spend an hour a day with you so your spouse or primary care-giver can get away for a bit. You'll both benefit! Cheryl from Ontario: thanks for writing in my guest book. Please come back any time, and often. I almost had to force my husband to go to a meeting this morning! He didn't want to leave but I thought that little breather might be good for both of us. I'm starting to feel well enough that dat-time tv is the pits! Don't know how I will manage 4 - 6 weeks at home. I suppose the honeymoon will be over when I have to start cooking again. We sure won't be eating as well as have have been this week. Thanks to everybody for all your prayers and thoughts. You have no idea how much it helps me to know you are thinking about us. Jan

I can't believe it's been a week since surgery already! From the minute I got home, I decided I was tough enough to do this without pain medication. Wrong! My family and friends convinced me how foolish this was and I have been taking my meds at night for two nights now. Last night I slept - in my bed! - for over 9 hours! Sounds like a little thing? It's not.It's huge! I wake up feeling like I can take on the world now. The last surgical bandages came off yesterday and I feel even better. Right now, after-surgery blues is kicking in and anything can set me off. I thank God I'm alive. I have the best friends and family support group that was ever assembled. We have eaten some of the most fabulous food - and I tear up and bawl like a baby - over nothing! People are stopping by now to say hello and I really enjoy that. My only request is that you call first so I can have someone here to let you in. I live in a spit level house and don't do stairs yet. Noteworthy item: if you have to take potassium (yuck!), be aware that the humoungous uncoated pills stick in your throat and gag you. There is another one, capsule, that is much easier to swallow. Random thoughts: a hot shower is heavenly. Sleeping in your own bed with your loved one beside you is unsurpassable. Chicken divan is like nectar from the gods. I have a couple friends who should receive awards for their soups! Thanks to everyone who has sent flowers. They are such day-brighteners! Come see me if you can and just overlook the crying. It's just my way of clearing my lungs and showing how much you all mean to me! Love you! Jan

Wow! I'm home. My fabulous surgeon and his team stopped my heart, put me on a heart-lung machine and gave me a new valve and right coronary arter bypass on Monday and 6 days later I am at home! So, first things first: to those of you about to undergo surgery: no, it's not a piece of cake! But, get rid of your fear, trust in God, your surgeons and your own personal support group and I promise you'll be fine. If you had asked me how I felt when I woke up in ICU, I probably would have said I felt like I'd been run over by a Mack truck but by the next morning I was up and walking! (Well, maybe, up and shuffling is more accurate) Each day brought miraculous progress. Going home yesterday was awesome. I was scared and elated at the same time. It was very tiring, too. I made it up the 7 humoungous steps and into my recliner that the family has set up for me. If you don't yet have a recliner, get one! You'll need it and it will give you a bit of indepenence from your caregivers. Speaking of caregivers, what absolutely wonderful people surrounded me during this period in my life!!!Words are not adequate to thank each one of you for your support and care. Ed and Erik and Merri-Ann were my rocks, always there, cheering me up, understanding when I fell asleep while they were visiting. To all the rest of you, thank you for all you have done for us - the cards, calls, flowers, food. I can't begin to name all of you for fear of forgetting someone and every one of you has touched our hearts forever. OK, if I haven't bored you to death yet, couple of things for those of you who are awaiting your sugery. First, I watched the actual surgery on Adam Pick's site and it really helped me to understand the miraculous work the surgial team was performing. This might not be right for you, but it was for me. 2. I know we've been warned about waking up in ICU with a breathing tube. Yes, it's crappy but necessary so go back to sleep and it will probably be gone by the next time you wake up. 3. The way you feel when you wake up will change dramatically and quickly! After all, you have a new heart valve. As your surgical team begins removing tubes and stuff, you will improve even faster. 4. Cheer yourself up with something: I asked for a comb almost the minute they took out the breathing tube. I also got some silly earrings as soonas I was moved from ICU. Your emotions are going to be all over the place for awhile and a little humour will go a long way toward cheering you up.5. Do everything your doctors tell you to do! Personally, I hate that breathing machine, but I know how important it is to keep pneumonia at bay. Finally, I've been invited to join Mended Hearts and I plan to do just that. OK, that about wore me out so I'm going to take a little nap. It's 4 am, I'm not in enough pain to want a pain killer, and my internal clock is all haywire but we'll be back on track soon. Drop by to say hello, I'd really love the company, but please understand that I tire very quickly. Love you all! Jan

It's official - Mom is at home. (Wow -- think about that for a minute. From open-heart surgery to home in less than a week.) Dad called to give me the news. He said that Mom was pretty tired from talking to everyone but otherwise doing well. Bob and Loretta stopped by and brought dinner so that much is covered. Perhaps the next post will be from Mom? In case this is my last entry, let me say a huge thank you to everyone who has been thus far with us and a future thank you to The Village for all the support that I'm sure you will be giving Mom and Dad in the near future. Being home is a huge step but there are still lots of little steps to cover before Mom decides to take on a marathon..... (a marathon? Well, why not?)

Talked to mom on the phone again last night. Her voice sounded much stronger. She said that her blood pressure still wasn't where the doctors want it to be but that it was steadily improving. They were talking about sending her home yesterday (Friday) except she has to deal with several steps to get into the house and they didn't want her doing a lot of steps quite yet. If she continues to improve at her current rate, they may be sending her home today (Saturday). She also commented that she's lost almost all of her tubes and monitors now - just down to the heart monitor. She said that there isn't a lot of pain but that they had given her a sleeping pill and some pain medication the previous night and she finally had a really good night sleep. Before you know it, mom will be back at the keyboard herself and making these posts!

My phone rang this evening and the caller ID claimed it was Dad. Lovely surprise - it was actually Mom! She has been moved to the PCU (progressive care unit?) and was able to have a shower today. She talked about what she'd had for dinner and what order she'd placed for breakfast tomorrow. The food not only sounded good but it was really good to hear her talking about it -- a grand improvement from the first day when cherry jello was something of an accomplishment. Mom said that her blood pressure is still low and she sometimes gets a little dizzy because of it. If it improves soon, they may be releasing her to go home tomorrow. I'm not sure but it sounds as if the low blood pressure isn't terribly abnormal and they're not extremely concerned about it. Just keeping an eye on it and letting Mom's body sort itself out and set things to right in its own time. Mom was a little concerned about if she does go home tomorrow. That means that all the care and responsibility will fall to Dad. He's perfectly capable but it's a lot to deal with. So I'll just send out a little reminder to those of you in the area who are reading this that The Village thing really comes in to play right about now. Please stop by and bring a dinner that's easy to heat up. Bring a book along so you can amuse yourself while Mom naps and send Dad out to run errands or catch up on some business task. Give him permission to focus on the rest of life that is still whirling along outside of this little "detour." Please and thank you!

1/06 Update from Dad: Mom hasn't been moved out of ICU yet. Apparently her blood pressure is still low. It's not low enough to warrent a blood transfusion but it's not good enough to get her a hall pass to a non-ICU ward. They're keeping an eye on it and will see if it can come up on its own. Dad said that Mom's color is a lot better today as is her movement (she had a hard time moving yesterday and it seemed to take a lot of effort for her to do something as simple as get her hand up to scratch a tickle of hair on her ear). None of us thought that this would be an instaneous recovery and we'll all appreciative of the little steps. No rush.

When we visited mom the day after her surgery, we were surprised (but pleased) to find her sitting in a chair next to the bed, sipping a glass of apple juice and contemplating a bowl of cherry jello. She was very tired and we didn't stay long (so she didn't feel the need to stay awake for us). The nurse said she was doing great and they might move her out of ICU later that day. Imagine -- being completely split open so someone can patch up your heart and then being out of ICU a day later? You have to admit that our modern medicine can accomplish some miraculous things in some really short timeframes. Mom has a little red pillow shaped like a heart. I had seen it next to her the day before so I asked about it. She said that she was supposed to hold it up to the incision when she needed to cough or move or sneeze or breath or.... We had to smile at that. I'm not sure that she could move fast enough to catch a cough or a sneeze but maybe even coughs and sneezes are moving in slow motion for her right now. I had to leave to travel back home. (Erik is leaving Wednesday.) That means that A. I will have to post updates after I get news from Dad. B. The village needs to make sure that Dad is actually eating. Bring him some soup or something that warms up easily in the microwave, okay? -- Hmm, note to the rest of the world wandering through these journals. Don't forget that there is a spouse or "significant other" going through this with the patient. That person carries just as much (if not more) stress and worry as the patient and needs just as much understanding and support. Mom has 24x7 nursing staff and some really good drugs right now. Dad has his village. Don't forget to be a good village.

We got to the hospital at 4:30am for a 5:00am check-in. (Hmm...mom was nervous and sleep is so optional anyhow.) They finally moved mom from the initial check-in holding area to the pre-surgery holding area around 7:00am. We moved waiting rooms. The nurse called our waiting room around 8:00am and reassuringly told us that the surgery had started and he would call us with an update every hour and a half or so. Now, those of you having the surgery get a lovely, deep, and long nap at this point. Your family and friends get The Wait. There was coffee and we brought cookies. I had my needlepoint. Fred told stories about airflights gone bad and boats gone sour. When Bob and Loretta joined us, the stories widened. (Can anyone explain to me what "runs like a striped gorilla" means?) We kept ourselves amused and entertained but the day still dragged along. Erik was the wisest -- he had claimed the odd grandma-looking chair from the start.... Finally, at 3:00pm, the nurse said that mom was in her room in ICU and we could go back to see her. Of course, she wasn't chorent. But she was resting and she was already starting to take breaths on her own. Her eyelids fluttered when the nurse talked to her. She was able to squeeze the nurse's hand when asked to and she nodded her head when the nurse let her know that she needed to rest a little longer before they took the tube out. The nurse said that mom was waking up calmly and slowly and that was great. There were two nurses with mom - they were both very positive about the surgery and how mom was waking up. We didn't get to talk to the surgeon. We're guessing that he lost which waiting room we were in. That's okay - if you're going to lose some detail, we'd rather it be which waiting room the family was in than something truly important in the operating room. :^)

Won't be long now. The kids got here safe and sound. Erik drove through heavy snow and an almost white-out. It really helps to have family and friends around me today. I've had a bunch of calls and every one was so welcome! I just can't say enough about the value of such a terrific support group. I love you all! Tonight is for family togetherness. Now I have to start turning inward, getting ready for tomorrow's ordeal. We're all going to the hospital together - at 5 am! I have to tell you what I have planned for my surgeon: when he stops in to see me before the surgery I am going to give him a picture of a Barbie doll. I'm going to ask him if he could just do a little nipping here and a bit of tucking there and, maybe, some snipping while he's at it and make me look just like Barbie! Hopefully he has a sense of humor. Please keep me in your thoughts and prayers tomorrow. The kids will update this journal after the surgery. I think I'm ready now.

We're almost down to day one. Very good friends, Don and Sue, invited us out to dinner. They knew that I am trying to stay busy - less time to dwell on the scarey stuff - and they were fun and funny to be with. It really helps when you have a sympathetic audience! Sue graciously offered to spend time with me after I get home, so Ed could have some relief. Good friends really help me through this whole awesome procedure. I know it sounds weird but I'm almost glad the wait is about over. I think I'm ready now. The kids are coming home tomorrow and that is a huge comfort to both of us. When I had a kidney removed a couple of years ago, our grandkids gave me a wonderful card that showed "kid knees" and offered to share them with me! I wonder what they will do this time??? Well, time for bed and maybe a little sleep. Please keep us in your prayers. [Post-note: We brought down "Tinker" the stuffed blue elephant. When I was a kid and mom had to go on a trip, I would always hide Tink in her suitcase with extensive care and feeding instructions. My daughter, Ruth, tried to find a heart necklace for Tinker to wear (since grandma could use a little extra heart right now) but couldn't find the one she always plays with. Instead, she found a necklace that spells out "Love" with a heart for the "o". Turns out that this necklace used to mom's mom's.]

Today is Saturday, January 2, 2010 and just two days before my scheduled surgery. I am going to have a new valve to replace my old leaky and calcified one and they are also going to do a bypass on my right coronary artery. This is pretty scarey stuff! It means opening my chest witha large incision (about 9"), stopping my heart and putting me on the heart-lung machine, opening up my heart, removing the old valve and putting in a new one. I don't know if they do that first or do the bypass first. Guess it really doesn't matter. I think I'll just sleep through the whole thing! If you're reading this, please keep me and my family in your prayers these next few weeks. Prayer really does work! Jan