Phyllis's Guestbook

Phyllis Petersen  Wow! It sounds like Jeff is doing great. I'm amazed that he was able to get out so quickly. I'm glad that I could help. Feel free to ask anything you need going ... Read more

Phyllis Petersen  Wow! It sounds like Jeff is doing great. I'm amazed that he was able to get out so quickly. I'm glad that I could help. Feel free to ask anything you need going forward. We're all different in the way we handle surgery and recovery, but there is plenty of overlap in our experiences. Blessings to both of you too!

Phyllis Petersen  I'm sorry I didn't see this sooner. I didn't get an email that I had a message and I've been a bit busy lately. The gem shows are in town! I answered most of ... Read more

Phyllis Petersen  I'm sorry I didn't see this sooner. I didn't get an email that I had a message and I've been a bit busy lately. The gem shows are in town! I answered most of this in the comment to your earlier post. I was fortunate that I had family about and hour and a half from the hospital, so I was able to stay an extra week. I used a wheel chair and transport in the airport, especially since I was travelling through Chicago O'Hare, which is a nightmare airport. I believe I took a pain pill for the flight, but it wasn't really bad. I was able to sleep in a bed with extra pillows right from the start. If you have any more personal questions, feel free to email me at fabphyllis@gmail.com.

Phyllis Petersen  Hi Emily, I just looked at your page and saw how much you've been accomplishing. You go girl! I hope you had a very Merry Christmas too and that the New Years ... Read more

Phyllis Petersen  Hi Emily, I just looked at your page and saw how much you've been accomplishing. You go girl! I hope you had a very Merry Christmas too and that the New Years is fantastic. My youngest sister moved to Tucson in September and hosted Christmas. It was wonderful!

Phyllis Petersen  Gladly! I had my surgery Thursday morning and was released on Monday. On Sunday, I was able to take a shower at the hospital and go up to the rooftop terrace ... Read more

Phyllis Petersen  Gladly! I had my surgery Thursday morning and was released on Monday. On Sunday, I was able to take a shower at the hospital and go up to the rooftop terrace for a half hour. His team is great. The big surgeons at CC have their own team, right down to the floor staff. They know what he wants. Best of all, they try their hardest to help you heal as well as possible. My back was hurting from having to stay on it so many hours. The nurse brought me the disposable heat packs to begin with until she could find a wet heat machine for me. I can't take oral oxy without puking, so they brought me pudding before giving me a pill, even at 3 am. I was very impressed with their level of care. I was driving 4 weeks after surgery. I tired quickly, but at least I could get around. I was cleared for cardiac rehab at 3 weeks, but insurance dragged their feet until 6 weeks (I had already reached my maximum outlay). I wasn't where I wanted to be in terms of walking time when I started rehab, but they thought I was in a reasonable place and the rehab allowed me to advance very rapidly. I was able to strength train immediately and increase weight and reps more rapidly than the zipper people. If you have other specific questions that you do not want to post, please feel free to email me at fabphyllis@gmail.com. Oh, almost forgot: Surgery on 10/13, hiking for 4 hours on 12/26. I took it slowly and took rests when I needed, but it felt great to reclaim my life.

James A. Corbett  Thank you Phyllis Peterson for answering and Paul Pierce for asking the question. I'm having my MV repair by Dr. Alfonso Trento on Dec. 18 at Cedars here in ... Read more

James A. Corbett  Thank you Phyllis Peterson for answering and Paul Pierce for asking the question. I'm having my MV repair by Dr. Alfonso Trento on Dec. 18 at Cedars here in Los Angeles. Phyllis your recovery was very encouraging. I hope I can somewhat duplicate it. Jim

Amy Steele  Actually, my 2 year anniversary was last Wednesday. Yours is coming soon! Hard to believe that time passes so quickly! We're heading out of town next week ... Read more

Amy Steele  Actually, my 2 year anniversary was last Wednesday. Yours is coming soon! Hard to believe that time passes so quickly! We're heading out of town next week to attend my nephew's wedding and will be back the following week. I was looking at my calendar and I'm booked with appointments of one kind or another on my days off until Monday, October 29th. That's one of my hospital volunteer days at TMC, and I could meet you somewhere after 12:00pm. We could meet somewhere in that area... Let me know if that works for you.

Phyllis Petersen  Pick me up on your way to Rocky Point!
I, too, live alone, but I have family nearby, but they don't want to hear too much about it. If you'll have family inn ... Read more

Phyllis Petersen  Pick me up on your way to Rocky Point!
I, too, live alone, but I have family nearby, but they don't want to hear too much about it. If you'll have family inn time, I'd have things ready, but let them bring what you need to the hospital. You really won't need much. I'll keep you in my prayers, Phyllis

Phyllis Petersen  Always welcome! This is a great place to get out of your system all the things you may not want to go on and on about with your family and friends. There will ... Read more

Phyllis Petersen  Always welcome! This is a great place to get out of your system all the things you may not want to go on and on about with your family and friends. There will almost always be someone who understands!

Phyllis Petersen  I had a very good experience. At first, I thought one of the CICU nurses didn't pay much attention to me, but my sister said otherwise, I just was too wonky ... Read more

Phyllis Petersen  I had a very good experience. At first, I thought one of the CICU nurses didn't pay much attention to me, but my sister said otherwise, I just was too wonky to remember my initial experience there. When I was more aware, I was very impressed with my care, right down to them cleaning my teeth in CICU. Once on stepdown, I had a fantastic team of nurses, assistants, respiratory technician, cleaning staff. You need to ask, ask, ask for what you may need.
My sister was there each day, as well as visits from my uncle and cousin. There was a kitchen with coffee, tea, ice pops for patients and family, as well as a refrigerator to store personal items. I can't take oral narcotics without something in my stomach, so they brought me pudding or apple sauce or a dinner roll at 3 am so I could take more pain meds. I had a very good experience there. I needed to go in again when one of my small incision sites opened, and they were able to get me in at a convenient time to be treated. If there are any specific concerns you have, feel free to email me at fabphyllis@gmail.com.

Phyllis Petersen  Where are you coming from? I saw that Catie B told you of her experience travelling alone. I travelled by myself, but my sister flew from NY to be with me and ... Read more

Phyllis Petersen  Where are you coming from? I saw that Catie B told you of her experience travelling alone. I travelled by myself, but my sister flew from NY to be with me and I had family only about an hour and a half away. It's still so important to get the best help you can.

Anna Jones  I'll be traveling from TX. I'm thinking that I will hire a home health aide agency so someone is with me in the hospital room from the time I leave ICU. ... Read more

Anna Jones  I'll be traveling from TX. I'm thinking that I will hire a home health aide agency so someone is with me in the hospital room from the time I leave ICU. I just want to make sure that someone is there to advocate for me. Then I will ask the doctor to have me transferred to a nursing/rehab home for about a month for 24/hr care. After that I should be fine to travel back to TX.

Craig Wise  Tina, my heart thumped more strongly and in a pounding way for a couple of months before my AVR surgery. It was the only symptom I experienced. It’s quieter ... Read more

Craig Wise  Tina, my heart thumped more strongly and in a pounding way for a couple of months before my AVR surgery. It was the only symptom I experienced. It’s quieter and more settled now. However, I seem much more sensitive to caffeine - in any amounts, causes increased heart rate and mild pounding. Best to all.

Phyllis Petersen  Hi Amy, I've just returned from 3 weeks in New York visiting family and friends. It was hectic, but fun, plus getting a few business things taken care of. Now, ... Read more

Phyllis Petersen  Hi Amy, I've just returned from 3 weeks in New York visiting family and friends. It was hectic, but fun, plus getting a few business things taken care of. Now, trying to catch up on things here. My energy is so much better than it's been in years, which is such a blessing. I'd love to get together. Just let me know when your schedule looks better. Phyllis

Amy Steele  Glad to hear that you were able to take a trip to visit family and friends... and that you were able to enjoy it more since your health is better. I'll give ... Read more

Amy Steele  Glad to hear that you were able to take a trip to visit family and friends... and that you were able to enjoy it more since your health is better. I'll give you a shout when things are a little less busy...

Phyllis Petersen  Hi Vanessa, My return trip was pretty good, except for delays taking off in NY, landing in Chicago, taking off in Chicago ... hahaha. I had a really good NY ... Read more

Phyllis Petersen  Hi Vanessa, My return trip was pretty good, except for delays taking off in NY, landing in Chicago, taking off in Chicago ... hahaha. I had a really good NY bagel to eat while waiting (cinn-raisin w/ maple walnut raisin cream cheese). Resorted to a drink at the overpriced airport bar where I met another woman traveling to Tucson to chat with during the delay. A girl's gotta do what a girl's gotta do!

Phyllis Petersen  Wow, 3 open heart and they're so laid back about your symptoms? Are you able to get to a larger heart facility where they may be able to evaluate you better, ... Read more

Phyllis Petersen  Wow, 3 open heart and they're so laid back about your symptoms? Are you able to get to a larger heart facility where they may be able to evaluate you better, especially if you're symptomatic. Do they believe the shortness of breath and chest pain are related to the valve, or to something else? What are they suggesting you do? I had one floppy leaflet on my mitral valve, which over the years made the regurg worse. When I went for clearance for knee surgery, they told me they needed to do a TEE because the valve looked to be in serious trouble from my echo. After the TEE, there was no question that I needed to have the valve repaired in the near future. It still took several months to actually get it done. In the end, I also traveled to Cleveland Clinic to have my surgery. My energy levels are so much better, although I think all the years of fatigue have taken a toll mentally, but that can be worked on. I hope you find a doctor you can feel confident in.

Phyllis Petersen  Hey Kathy, I realize I've been remiss in checking in on you, so missed the big announcement. Congratulations on your engagement! You really are embarking on ... Read more

Phyllis Petersen  Hey Kathy, I realize I've been remiss in checking in on you, so missed the big announcement. Congratulations on your engagement! You really are embarking on a whole new life. I'm glad to hear your heart is behaving better now too. I'm doing very well. The remnants of brain fog seem to be fading, so I'm catching up on a few more things. I've made plans a few times to hike, but things came up and I won't go alone. Now we're heading into high heat, so short early ones in the mountains. Other than tenderness in my right breast, I'm really feeling like myself again. I hope you keep improving too.

Kathy Blank  Phyllis- glad you doing well and that your heart is also on its best behavior! I know AZ gets hot but think I remember a dry heat! You are smart to avoid hiking ... Read more

Kathy Blank  Phyllis- glad you doing well and that your heart is also on its best behavior! I know AZ gets hot but think I remember a dry heat! You are smart to avoid hiking alone. My R breast is still partially numb but not tender. Hope any discomfort is gone soon. Yes- lots of excitement around here w graduation and family trip to CO in July. The engagement is exciting but we haven't made specific plans until things settle down a little more! I've always appreciated your compassion and helpful advice! Heart Hugs to you❤

Phyllis Petersen  Yes Barbara. We're all heart family here. I'll still take the heat over the cold, although it takes some planning. Thankfully, I don't have to be out in it ... Read more

Phyllis Petersen  Yes Barbara. We're all heart family here. I'll still take the heat over the cold, although it takes some planning. Thankfully, I don't have to be out in it working like so many here. Kathy, I was numb for a long time. The tenderness is not problematic; it's mainly when I touch it. I hope it goes away just because it's a bit annoying. As for the dry heat, that has it's own problems. Blast furnaces are dry heat too! LOL! I don't go anywhere with my 34 oz. water cup.

Phyllis Petersen  When I looked at my surgery report, I saw that a nerve block was used, but judging by my knee surgery, that usually wears off after a couple of days. It's hard ... Read more

Phyllis Petersen  When I looked at my surgery report, I saw that a nerve block was used, but judging by my knee surgery, that usually wears off after a couple of days. It's hard to know all the ins and outs of recovery, since every surgery and surgeon is different, and every patient heals differently. We definitely see that in this community.

Phyllis Petersen  I had robotic-assisted. I've been doing very well post-op. Initially, I felt I was going a bit slow, since I couldn't walk as long as I'd like. I was able to ... Read more

Phyllis Petersen  I had robotic-assisted. I've been doing very well post-op. Initially, I felt I was going a bit slow, since I couldn't walk as long as I'd like. I was able to drive about 3 weeks after surgery, but not long distances. Cardiac rehab helped a lot, but when I went off of metoprolol, my blood pressure vacillated for a few weeks, so had to tone down the cardio. I'm doing great now and focusing on rebuilding muscle. Every person is different in their rehab. If you read the experiences on here, you'll hear that robotic and other side entry surgery is a bit more painful at first, and I think that's true. But, recovery tends to be faster and there are fewer limitations.

Ben Hyman  I'll second Phyllis's comments. I'm 2 weeks post op from Robotic Mitral repair from Mayo Rochester. They use a 3" right thoracotomy and 5 small punctures ... Read more

Ben Hyman  I'll second Phyllis's comments. I'm 2 weeks post op from Robotic Mitral repair from Mayo Rochester. They use a 3" right thoracotomy and 5 small punctures for the Robotic arms, camera and drainage tubes. They also use an incision in your groin for the HeartLung machine. You have smaller but I won't sugarcoat this, my incisions still hurt. I'm just taking Extra Strength Tylenol and it helps but does not eliminate the pain. I'm starting Cardiac Rehab this week and I'm hoping the increased activity will help with pain management. Despite this, I think I made the right choice over a sternotomy. I'd be looking at 6-8 weeks of recovery and more restrictions

Phyllis Petersen  Sounds divine! My sister called my job "golden shackles." I'm still amazed that I was so quickly able to decide to take the early retirement incentive and leave. ... Read more

Phyllis Petersen  Sounds divine! My sister called my job "golden shackles." I'm still amazed that I was so quickly able to decide to take the early retirement incentive and leave. Hopefully, this year won't revolve around health issues and I can get to do lots of other fun things. Enjoy Duane!

Phyllis Petersen  Cutting out salt will often lower your iodine levels. I've never been salt sensitive before. My blood pressure was always low. I'm working on reducing my salt ... Read more

Phyllis Petersen  Cutting out salt will often lower your iodine levels. I've never been salt sensitive before. My blood pressure was always low. I'm working on reducing my salt somewhat just in case. My last two weeks of being monitored at cardiac rehab, my blood pressure was behaving more normally, but I still go a bit higher than I like at times. Thanks for your concern and advice.

Phyllis Petersen  I don't know a lot about repairing asd. I wanted the least downtime and I wasn't crazy about cracking open my sternum. I've had robotic surgery on my back, ... Read more

Phyllis Petersen  I don't know a lot about repairing asd. I wanted the least downtime and I wasn't crazy about cracking open my sternum. I've had robotic surgery on my back, so feel very confident in the process. Yes, it hurts a bit more at first, but I was cleared to drive a week after leaving the hospital, as long as I could respond quickly in an emergency. I waited 3 weeks. I was cleared for rehab after 3 weeks (insurance took a bit longer). There are more criteria to qualify for robotic, but it seems more and more people are going that way.
I had a CTA and MRA at my local hospital, then needed another CTA at Cleveland Clinic for the robotic. My email is fabphyllis@gmail.com if you want to contact me more directly.

Phyllis Petersen  It's still bouncing around a bit, but no super extremes and not overly affecting my workouts. I've felt fine the whole time, which is why the numbers seem word. ... Read more

Phyllis Petersen  It's still bouncing around a bit, but no super extremes and not overly affecting my workouts. I've felt fine the whole time, which is why the numbers seem word. I've seen your updates and you seem to be coming along very well. Praying that you continue in that vein.

Phyllis Petersen  Thank you so much Kathy. I haven't heard back from the cardiologist yet, but my at home numbers are not great and I started out high on Monday, came down after ... Read more

Phyllis Petersen  Thank you so much Kathy. I haven't heard back from the cardiologist yet, but my at home numbers are not great and I started out high on Monday, came down after warmup, then went too high again during intervals, but came down enough after resistance training. I'm hoping it's not anything going wrong, and maybe just my age of 62. I'm trying to get more walks in and to eat well. I'm off to rehab now! Please feel free to ask any questions you need. I know the emotional roller coaster of that last week.

Phyllis Petersen  I'd be very happy to help! BTW, cardiac rehab lowered my lower interval so much that I wasn't even sweating, but add another exercise to my resistance training. ... Read more

Phyllis Petersen  I'd be very happy to help! BTW, cardiac rehab lowered my lower interval so much that I wasn't even sweating, but add another exercise to my resistance training. Hopefully, I'll hear back from the cardiologist soon.

Susan Lyons  I have experienced the horrible left shoulder pain and discovered it is pericarditis. The worst pain through the whole experience. I went to the ER and they ... Read more

Susan Lyons  I have experienced the horrible left shoulder pain and discovered it is pericarditis. The worst pain through the whole experience. I went to the ER and they put me on Colchicine. I had bad diarrhea from it (a normal side effect) so backed off to half of the dose. Then had another flare up with pain in my right shoulder so started taking the full dose again. With Immodium when needed but my body has gotten used to the Colchicine. My cardiologist was concerned that I had another flare up while on the med so has me taking a round of Prednisone to try to really knock the "festering" out. I will be on the Colchicine for months to try to keep it from flaring up over and over. Colchicine is not covered by my insurance and the most expensive medicine I am taking but I used the GoodRx app and found Walgreen's price is about a third of where I have always gotten my prescriptions. Hope this info helps. I am experiencing insomnia from the prednisone - look forward to getting off all meds possible.
I had MVR and Maze procedure on Oct.14th.

Phyllis Petersen  My chronic pain is more to do with joint and degenerating disk issues. I also had migraines and tension headaches since my teens, but now I seem to only get ... Read more

Phyllis Petersen  My chronic pain is more to do with joint and degenerating disk issues. I also had migraines and tension headaches since my teens, but now I seem to only get these optical migraines (aura without the pain). My back has been a nightmare for years and I've been having intermittent sciatica since around June. In the past I've had 2 microdiskectomies on the L5-S1, balloon kyphoplasty on my T12 (fractured falling down stairs) and had my right knee replaced last February. I've had 8 lumbar epidurals and 5 cervical. I've been on and off Vicodin for years. Fortunately for me it doesn't make me loopy, but actual can make me a bit hyper. Right now I'm using Tramadol and Flexeril to sleep at night, with 8 hour Tylenol if I need during the day, because I don't like taking too much other medicines and I've been on Celebrex daily for about 16 years. I've had occasional awful pain in my one or the other of my shoulders since the surgery that stops me in my tracks, but usually subsides quickly with rest. Regular exercise and hydration do help tremendously, but isn't always enough. Thankfully, so far, my pleural effusion doesn't seem to have returned. That really was an awful pain and my heart goes out to you. Take the medicine when you need to. You won't heal well while pain is preventing you from breathing properly.

Phyllis Petersen  Hey Lise, how are you doing these days? Is it still a lot of pain. There are so many weird little things that come and go with this that it's hard to know what's ... Read more

Phyllis Petersen  Hey Lise, how are you doing these days? Is it still a lot of pain. There are so many weird little things that come and go with this that it's hard to know what's what. I have some days when my breathing isn't great and I wonder if I'm getting the pleural effusion again or if it's asthma. So far, nothing has lasted long enough to get checked. I wonder how long it will be before I stop worrying about things going wrong.

Phyllis Petersen  The videos on Dr. Gillinov's site are a bit frightening but definitely worthwhile. I've just been reading the chapter in Dr. G's book about surgery and there ... Read more

Phyllis Petersen  The videos on Dr. Gillinov's site are a bit frightening but definitely worthwhile. I've just been reading the chapter in Dr. G's book about surgery and there were a few things I could have used from there. There is a lot about the different surgeons on this site. I had actually read Adam's book several years ago when I first moved into moderate regurg. I've learned from looking at bios and ratings of various surgeons that hospitals can have very good numbers and results, but they're not all as good for a particular valve or a particular technique. The larger the surgical staff, of course, the more areas that are covered. The larger hospitals have a wealth of information, but I think it's almost impossible to know all when trying to make a decision. Especially check what others having the same issues have said about facilities and surgeons. As you've probably seen, doctors differ on what is the right time for surgery too. Sometimes symptoms are subtle, so we think we aren't having any until we start reaching a critical point. Have they done a TEE yet? That gave my cardiologist much more information and made the need for surgery sooner rather than later much clearer.

Phyllis Petersen  If you feel up to taking care of yourself, then by all means go home. I was on my own quickly, but had a few things I needed help with. Do you have lifting ... Read more

Phyllis Petersen  If you feel up to taking care of yourself, then by all means go home. I was on my own quickly, but had a few things I needed help with. Do you have lifting restrictions with TAVR?
I still tire too quickly. I haven't been able to get up to more than 23 minutes of walking before I have to rest. I was given a schedule of walking to build up my stamina. I could have started rehab sooner, but arrangements and then travel pushed it back. As it is, I started in Phase II, which is fine by me. The experts in cardiac rehab will evaluate you and set an individual program suited to your particular situation, so don't worry. Speak to your cardiologist about getting the insurance stuff in place so you can start when you should. You're doing great. Believe me, your body will let you know if you're pushing things.

Phyllis Petersen  Hi Maria. It's scary to hear that your family member is having a failure so soon after repair. The statistics make us hopeful, but it does happen. I'm afraid ... Read more

Phyllis Petersen  Hi Maria. It's scary to hear that your family member is having a failure so soon after repair. The statistics make us hopeful, but it does happen. I'm afraid I didn't keep most of my research, but did it often while out and about. There's a wealth of information on this site, which is a good place to start. There are personal reviews of doctors and facilities. I knew about my surgeon from an earlier version of this site, since I knew this was a possibility for many years. I look for sources that are well-respected, like NIH, Mayo, WebMD and others to get information on procedures. Cleveland Clinic, where I had my surgery performed by Dr. Gillinov, has a huge amount of information and videos discussion the various procedures. They are the #1 heart institute, so very trustworthy. Mayo Clinic, which is #2, is also a great source for information. I have to warn you, it's a bit scary watching the videos, but I need to be informed. Good luck to your family member, Phyllis

Phyllis Petersen  Thank you. I glad that you had a good result with your replacements. Thankfully, I most likely having mitral valve repair. I decided to go to Cleveland Clinic, ... Read more

Phyllis Petersen  Thank you. I glad that you had a good result with your replacements. Thankfully, I most likely having mitral valve repair. I decided to go to Cleveland Clinic, since I may be a good candidate for robotic repair. I had read your story and saw you had it there too. Amy Steele is having AVR at TCM on 10/3/16. If I'm going to be down your way, I send you a message. Maybe we can meet some day.

Phyllis Petersen  My email is fabphyllis@gmail.com. I just met Amy for the first time for coffee here in Tucson and I hope to be able to see her in the hospital before I leave ... Read more

Phyllis Petersen  My email is fabphyllis@gmail.com. I just met Amy for the first time for coffee here in Tucson and I hope to be able to see her in the hospital before I leave for Cleveland. I'd love to meet you and Amy would too.