Eleanor's Guestbook

Eleanor R  Hi, Karen, good to hear from you. Yes, already a year has gone by. The months leading up to the surgery seemed like lead, dragging by, filled with anxiety and fear and lack of "surety" about anything. The first month afterwards also seemed slow, as I was mindful of the tiredness, the healing going on, weaknesses to be overcome and other recovery "items". Then, with cardiac rehab I regained confidence and energy and spunk, and time has flown. I hope the same for your recovery, and I am still hoping that you valve lasts and lasts so the surgery happens later on. Now it almost time for fall, and for me to get back into volunteering at my local elementary school, helping with my favorite first grade class. Hope your days are peaceful and joyful, too, Karen. Best wishes, Eleanor

Terrie Syvertsen  Hello my sweet heart Sisters Eleanor and Karen. I popped in to say hi to both of you as I am thinking of you and appreciated your posts. On the 20th I get to join Eleanor to celebrate my year too.
Until Karen's date has been set you and I will have to keep hanging in here to enlighten her!

Eleanor R  Hi Ginger, how good to get your note and the email that pops up in my server alerting me to news (thanks for that, and many other good things, Adam). All is well with me, I am waiting for the next cardiologist appointment in May, which will be the whole nine yards, echo, stress test, etc. Hope all is well. I still feel too tired too soon, so I hope it is the Metoprolol and not the valve. He will let me know I'm sure. Otherwise all is fine, life is pretty much back to normal except for being too tired to stay up after 9pm, from someone who used to be up at midnight most nights. I'll post more information soon, thanks for nudging us to communicate.

Eleanor R  Hi, Geri great to hear from you and know you're doing so well. I need to get the walking underway, I haven't been doing it much with the weird cold and windy days we have had, but with the gym so close by there is no excuse. I'm glad to know you're back in yoga, I was wondering if I would be able to turn and twist, guess so, no excuse. I've delayed that and swimming for 7 months because of the sternum but now its time. It won't be pleasant to visit your sister in law, but I imagine she will appreciate it, and it might make you feel better even knowing the eventual outcome. We are blessed indeed. Keep up your good work. I see my cardiologist in May, hope all is well. Eleanor

Eleanor R  I am an older dog too, having turned 69 last month. Wish I could say I was as active as you, but I was not, am not. But, I walk the dog and do all the gardening and still cut my own lawn, with a little help here and there from a visiting daughter and/or nephew. Last year I could hardly even go outside, so I am looking forward to it this spring, when spring finally comes to the East coast. I imagine you will have your bike out soon. Mainly I want to be in the back yard with our dog, she is such an outdoors animal, even in the dead of winter if there is sun on the deck she spots it and wants to go out and sit in the sun. Doesn't work so well for her when it is sunny but 22 degrees, but her little mind can't figure out that anomaly. Plus, she's Havanese so as a good Cuban she loves the sun. I do too, I just have to protect from sunburn. I hope you continue to do well now. Eleanor

Eleanor R  Thank you, Ginger, this is helpful. I'll see what the cardiologist has to say next time I see him. Originally I was to have come off Metoprolol three months post-surgery, but because I was having sudden bursts of high heart rate, followed immediately by a rushing descent, the cardiologist has left me on it. It makes me tired, but it doesn't lower my BP very much so I guess it is ok. What did turn out to be out of whack was my thyroid post surgery, and that dosage is being lowered, so maybe I will get back my old zip, hope so. Thanks for the heads up.

Tammy Pilcher  Eleanor, I also came home from surgery taking Metoprolol for 3 months. I've never had high blood pressure and still don't. I'm wondering what strength you were prescribed. Mine is 25mg and I'm suppose to half it and take half in the morning and half at night. I read Ginger's only taking 6.25mg twice a day and wondered if anyone else is taking as high of a dosage as me. I have been getting tired quicker than usual' but just thought it was because of recovery.

Eleanor R  Hi, Tammy. I am on the same dose as you are, administered the same. I did have HBP before surgery and was on Norvasc, which I would have been switched back to at 3 months. My heart rate in rehab sometimes spikes, then plummets back down to 60s, all very quickly. For that reason my cardiologist has left me on Metoprolol for another few months. I don't think a lower dose would work for me as my BP is about 138/80 even with this dose. I will see how I fare and call in if I feel too tired. I am hoping the lower dose of thyroid medication will help.

Tammy Pilcher  Thanks Eleanor, my surgeon's nurse said he puts most people on this for the first 3 months after surgery even if they don't have high blood pressure. I've always been nervous about taking medication, so I'm just hoping after being on this 3 months I don't have blood pressure issues when I come off. I know it probably doesn't work that way though.

Tammy Pilcher  Thanks Joseph, I'm not use to taking anything, but I feel better now that I know others are taking similar dosages.

Eleanor R  Thank you Christine. I am doing well, finishing up the 36 sessions of cardiac rehab soon, maybe the first week of January as I've missed a few. I am able to do whatever I want, mostly. All I really "want" to do, and not so much with the cold weather, is to get back to swimming. My surgeon said to go ahead, but I decided to wait for the full six months as I've been a bit overprotective of a healing sternum. The incision itself was small, but the bones take time to fully knit. Other things I have not done, and not wanted to do, are raking leaves and shoveling snow (not had any yet, thank heavens). Otherwise, I am very busy, back to volunteer work and looking for learning tools for my ESL students. I am still more tired overall than before aortic stenosis took away my zip, but I understand that it is the combination of hypothyroidism meds plus Metroprolol. I was due to come off the latter, but in cardiac rehab my heart rate, normally a low 60 something, would rocket up by leaps and bounds to 135 or so, then jump right back down. So, more time on the beta blocker, to keep the hart rate steady and low. When the cardiologist asked me if it bothered me, I said only to the extent that I'm tired by 9pm and want to go to bed. He thought that was actually a good thing overall and said to stick with metroprolol a few more months. Can't complain really, I feel good and have missed many of the potential bumps in the road, so I am happy. I hope you are doing well, too! Eleanor

Eleanor R  Thanks, Terrie. I will answer you tomorrow when I am more alert, I've had a busy day of patio winterizing at my house, cardiac rehab, and a couple of hours translating a PTA meeting at my local elementary school. A little rain here, too, or was that sleet!

Eleanor R  Thank you Linda for the kind words. We are all in this together. At first we think we are the only one in the world this is happening to - it sure feels like it when you first hear the news. I never knew anyone with valve replacement surgery, and reading online on Web MD and others made it even scarier. What a relief to know others have "been there, done that" and moved on with their life. I was so grateful to those who had documented their own journey, I read so many journals! All of them helped, for there emerges a theme of strength, a "can do" attitude, even in those who were the most frightened at the beginning, or who worried about being alone after release from the hospital. You will read about many small triumphs, and will soon add your own.

Eleanor R  Thanks Christine. Our dog is a Havanese, but on the small side at 9lbs. They get up to 13 but she was a bit of a runt, next to the smallest of the littermates. But she's a sweetie, loves to walk with me, and makes me walk fast. The cardiac rehab folks don't count my dog walks as walks, since they believe dogs slow us down stopping to sniff. Clearly they have never walked a Havanese, who jogs non stop. Before the stenosis, I wasn't really tired at 10, being a night owl, so this is new for me, but I am getting used to it. Happy to be back volunteering with first graders, but I don't join them until their language arts session, which is 11, so that allows me plenty of sleeping in time, plus a slow start with coffee or tea and a peaceful start of the day. On the other hand, before surgery I would not have taken the time to sit down and enjoy the morning with a cup of tea on the deck. As you rightly said, this event makes you notice things more, and small events have more importance, as only we know how fragile and how precious life is. Let's treasure it. Eleanor

Eleanor R  Right, my nephew is a miracle man. The transplant program would love to know what went right in his case, to replicate it with so many heart failure patients. Maybe the power of prayer, together with a really healthy body otherwise. He came back to live with me while we waited for the transplant (his parents live in Florida) and has not "left home" again, since he's single. He's good company, and makes living alone easier with the cat and the dog, the grass and home upkeep. He had a recent cardiologist appointment (we share the same great guy), and he's free for another year, not even an echo other than every 2 years. He and I cook a heart healthy diet, to try to keep each other on track. Have to run, there is cardiac rehab even today. Best wishes, Eleanor

Eleanor R  Thank you, Karen. I appreciate your notes, and keep up with reading even though I am not posting so much information, as things don't change much after the first couple of months, assuming all is going well. I am now almost 3 months post surgery, in week 4 of cardiac rehab which is a bit of a stretch for me (literally as well as figuratively). It is good to feel good, to drive again, and be able to do almost anything. I haven't tried swimming yet, and I was cautious while helping to cut the grass on Saturday, to not pull, just push. I miss my rented recliner, but won't buy one for a while, fearing I might end up sleeping always in it, as I did for two solid months after surgery, when I found it hard to get up and down out of bed from lying flat. All is well, it is getting cool and damp in my area (northern Virginia/DC suburbs), so my outside walking is getting more limited. I forced myself to go to a large, sprawling shopping mall on Friday, to walk. Of course while I was there, I tried on tops and bought a few with longer sleeves. After retiring 2 years ago, I got into tee shirts, but now that I am back to volunteering in an elementary school, I wanted something a little more upscale for the kids, to set a good example for them. I love working with the little non-English speakers three hours twice a week. I did over program myself though, as I don't have a free week day, as I figured out quickly as I cannot schedule in home repairs for things I want done. I will know better next time! Plus cardiac rehab is not forever, but it is 36 sessions so it won't finalize until mid December, then I will be freer again. Keep posting, I always love to hear how you're doing while you are waiting. Best wishes, Eleanor

Eleanor R  Hi, Geri, how good to hear from you. I didn't realize you were at VA hospital center, thought you were going to Mt. Vernon. Sounds like there is one set program, for I am doing exactly what you are but it ends up being more than an hour in my case (they keep adding time more than levels). 5 min. of warmup either walking or on a treadmill, 15 mins on treadmill, 15 mins. on bike, 5 min cool down, 2-3 mins. stretching and only now 5 mins on the arm machines. Plus waiting to check in/BP, hooking up, etc. Probably about the same. They gave me a walking schedule (weekly progression of time), so yesterday I went to Tysons since it was raining and I did not want to see another gym. I, too, have a community center/pool/gym so near my house, I will do my best to keep up the same amount of exercise once the rehab is over at the hospital. Remember I said "at least you have music", spoke to soon, now we have what I guess is called country rock. What I have been doing since I get bored easily is taking my ipod. Just before surgery I downloaded some audiobooks, got rather carried away I guess, I think I download 5 at least, only got through 1 with the recovery, on another one now. That helps me not focus on the time so much. And it is so tiny it fits into the pocket of the tee shirt they have us wear, along with the little heart monitor. Sounds like you are doing good, I haven't had an echo since the surgery, the cardiologist just reviewed the documents on line from the hospital, checked me over, signed me up for rehab, renewed the Metoprolol and told me to come back in November and he would probably exchange that med. for what I took pre-surgery, Norvasc, for hypertension. Guess I still have it. From what I understand of heart "remodeling", it takes a long while, more than a year actually, for the heart muscle to reconfigure itself. I've told you about my step brother's son, my adult nephew who came to live with me as a young man, then returned when he was dying. Literally, he was in "end stage heart failure" and immediately put on top of the heart transplant list. He was cared for by Dr. Desai, the director of Inova's transplant program. I went with my nephew every 2 weeks to see Dr. Desai and Dr. Christopher May, the designated transplant surgeon, both right as you walk into Fairfax hospital from the parking garage. This happened in February 2011. From Stage 4, with treatment, he began to improve. They expected some improvement, or death, for his ejection fraction, or percentage of blood pumped out by the heart with each beat, while normally 65 percent, was in his case 10. After treatment it was 25 for a few weeks, then slowly but steadily it began to improve. I recall the surgeon telling us that a transplant was needed, since this kind of heart damage does not allow for self regeneration. I recall my brother asking if it wouldn't be possible in a young (40) patient with zero health issues, and the surgeon told us the heart instead of the size and rough shape of a baseball, was a flabby football. That was Feb. By July Paul started back to work part time, still waiting for a transplant but doing much better. By September he worked full time and by December they told him they were moving him to the "reserve" list, that if he again needed a transplant he would not lose his place, but he was much better. Before the year was up, he was back at 65%. They told him his heart had begun the remodeling process, and today it is back to normal. He's really a miracle. They don't know what they did for him, they would love to replicate it of course, and a Nobel prize for medicine would be in the offing, should they figure it out, but they cannot. Don't know what caused it, most likely a virus or undiagnosed rampant high blood pressure, and they don't know what cured it. He's on large doses of three meds, which the cardiologist has continued, but he was released from the transplant program within the year, and they removed the defibrillator he had implanted, so he's really well. Sorry for the long story, just to say it takes a while for a heart to "remodel" if it ever does. Mine was a bit extended too, not much, and the first cardiologist I had said it probably would reconfigure itself. I'll ask my new guy when I see him in Nov. Glad to hear you are doing so well, keep it up. Eleanor

Eleanor R  Hey Bob, good to hear from you. I had high blood pressure before the AVR and imagine I will continue to have it. For now the Metroprolol (12.5 mg twice a day) keeps it under control. It is generally in the 130/65 range, slow heart beat at 60s. In the cardiac rehab they take the BP going in, and then upon leaving. Their marker, which you could probably follow, is to warm up rather slowly and to cool down, which I find very hard, walking very slowly for 5 laps around the smaller track, then stretching. The like to have the BP within 10 points of what it was coming in, and if it is back to where it was they are even happier. My guess is you might be having trouble slowing it down at the end, like I am. hard to do, so sometimes I sit on a weight bench to do the stretches, as for me sitting gets my BP down. My cardiologist has left me on Metroprolol until the next visit, 3 mo. out, or November. He said at that time my heart would be more back to pre-surgery condition, and he might put me back on Norvasc (5mg) which I was on for years. I'll let you know. I think if you monitor your heart rate on the exercise machines, or a little watch thingie, you should be fine. I saw that mine tends to jump up then go right back down, and the nurses said that is kind of normal post surgery for me as I tend to do that even at check in, not exercise related. Kind of scarey the first time to see numbers like 66, 80, 93, 120, 125, 98, 80, 65 all in a row in a matter of minutes, but they were not concerned since it came right down quickly. They said had it stayed up there it would be more of a concern. I'm going out now for a very quick walk around the cul de sac with the dog, actually doglette since she's only 9 libs, then off to first grade. Take good care, and I'm proud of you for doing the rehab on your own, that is even more commitment than me dragging my lazy butt to rehab. Eleanor

Eleanor R  Thank you Linda. Like you, when I was very diagnosed last March and told that things needed to happen very quickly, I was lost. I googled aortic stenosis, open heart surgery, etc. and found this site. I must have read dozens of journals because I was putting into this site's search engine things like "pain management", "breathing tube", you know what I mean, all the scary things that were on my mind. Reading about people my age or older or in worse condition, who had made it through without major trauma, made me feel better. Then I began to notice post surgery journals about recovery, and what helped people. Adam's book talks about cardiac rehab helping him, others mentioned just being home, finding multiple places to rest or sleep, and what they missed. I will never forget a journal entry by a lovely woman in Florida titled "I miss my arms". That helped me understand that while there may not be major pain in the incision or chest (frankly, I have never even felt it), you might not be able to do any movement for a week or so that engages your chest muscles. That helped me figure out beforehand how I would brush my teeth, open the refrigerator, get a glass of water, use the toilet, basic things of being home alone after the first week. We are amazingly inventive, and everything was possible even though I called that my robot phase, with both elbows kept always at my waist. You will definitely be able to do this Linda! Best wishes to you. Eleanor

Eleanor R  Hi, Geri. I know just what you mean about doing more damage to knees with gardening than with gym equipment. My knee is bothering me not because of rehab, but because I crawled around the floor three weeks ago painting the juncture of walls with baseboards in a bedroom we are renovating in my house. It is my daughter's former bedroom and while she still sleeps over some time, we use it for guests now as well and she wanted it lighter, more neutral and more welcoming to a variety of guests, so it is going from taupe and ethnic décor to light yellow and a neutral décor. Its fun, but the crawling around to paint the lower portion while Erica did the top and my nephew rolled on paint to the ceiling and walls. A nice family project, only my knee resented the "bonding" time. I'm glad you are able to walk, and I think it is ok to test out the equipment at your gym. I've been given the green light to exercise two additional days beyond the rehab, but I'm struggling with that, not being a great fan of gyms. But, being the "old boys club" at rehab, I had better "pull up my socks", right? I used to go a couple of times a week to the Fairfax Country recreation center's fitness center and pool at Springfield. I would meet a former work colleague, still working, after work and we would do machines for about 30 mins., then swim for another 30 and reward ourselves with hot tub and sauna afterwards. I got lazy, she got busy, but she is waiting for me to be able to swim again, so we can restart our outings. I am too afraid to swim right now, too soon. I read Julia's journals about swimming at 4 months, so I have a couple to go before I will feel comfortable with my sternum. How are you doing? I have started back last week with my volunteer activities. I help out at a local elementary school two days a week. Such a joy to work with them, they allow me to design what I want to do, what days, what hours, how long, etc. I choose to work with a first grade class where some of the children are struggling (with English). Out of 20 kids, 18 are immigrants from Central America, one African American girl and one little vanilla boy. Quite different than other areas I imagine. Your area might have more Asian kids, the DC public school where I helped with a great first grade class last year, in Adams Morgan, had a large latino population too, but a number of Vietnamese and several African American kids. I loved them, and the young teacher, but commuting again back to DC at 7am and coming home at 4 was too much, even one day a week, so I decided to transfer the same scenario to a local school (Graham Road), and so far I'm loving it. Of course in the middle of the first graders time with me (11 to 2), they have recess and lunch, so the ESL specialist has me working with an 11 year old girl in fifth grade, recently arrived from El Salvador this summer, and not understanding English at all. Since I am still bilingual, I talk to her in Spanish a bit about living in the US, how the school works, what customs we have that she's not used to (field trips, "time out", Halloween), and then we work in English. It is hard to know where to start since she has no English skills, so I started with the names of numbers, colors and how to introduce herself. She's a bit shy about speaking English but I am hoping that she will relax a bit the more we work together. My daughter is not thrilled that I've jumped back into this (when do you rest?) but I tell her with the cardiac rehab 3 days a week, I need mental rehab the other two days to exercise my mind. Right? Hope you're doing well Geri, maybe one day I can join you on one of your walks, or we can have lunch or whatever. Eleanor

Eleanor R  Thank you Christine. I remember the waiting period, and how frequently I checked to patients who were before me, to make sure they had survived the surgery. Honestly, what was I thinking! Of course they did, and were out of the hospital and walking around, much like I was on day 4. Such fierce imaginations we have. I had read a lot of journals, and then tried to stay off the internet articles to not further freak myself out, and I never watched videos of what lay ahead, neither before nor after. My adult daughter did and found them oddly comforting, "just changed out a valve" she said, much like a mechanic or a plumber. Yep, but about $6,000 for that service alone. I hope you have a very smooth surgery and a steady recovery. You will probably feel so good (to be alive, coherent, etc.) at first, and then kind of surprised at what you can do, and what you cannot (!). I remember being surprised that I could not stretch my arms out in front. I knew I wouldn't be able to lift them up very high, but never imagine even reaching out to take an envelope would not work. I took it all in stride, and worked around the limitations knowing that soon I would be able to do whatever it was, and more. Make sure you rest while the girls are in school, naps are good too. I never napped but I certainly did enjoy sitting down and reading or watching TV, and my daughter had a whole lot of videos she wanted us to watch. She thought I might spend more time in bed, but we ended up watching them on the sofa. Best wishes for your upcoming surgery. Eleanor

Eleanor R  Thanks Bob, good to hear from you too. Today I went for cardiac rehab orientation, and I start on Thursday, seemingly for 3 days a week, 12 weeks. I guess that is what Medicare and my secondary insurance provides for - of course I was told I could also be a rehab drop out, but I think I had better try to stick with it until I understand how my blood pressure and heart rate are going to work. I won't say its "fun" but it is not terrible, and I know I need it, and don't trust myself "home alone" to get myself off to the gym on my own. I'll let you all know how that goes and what I learn. I hope you are recovering well too, and like me you are putting together the pre/surgery/post/recovery series of events and thoughts. Good stuff. Best wishes. Eleanor