Phyllis's Guestbook

Ginny Turner  Hi Kathy, I just read your post to Phyllis. All three of us had our surgeries with Dr. Gillinov - I can’t say enough about how wonderful he is. Mine was mitral and tricuspid repairs and a Maze, also full sternotomy. Monday will be 10 weeks since surgery and I’m really doing well. I have not planned on returning to Cleveland for any follow up appointments, rather will do them in Texas. It’s good to hear of another patient with a similar surgery doing so well at 10 months. Very encouraging!

Phyllis Petersen  Hi Kathy, It's good to hear you are doing well. I had robotic, side entry repair. I went for the one week follow-up as I was staying a little over an hour away for a couple of weeks. I didn't go back for the one-year follow-up, but followed up with my cardiologist here. I sometimes wonder if I should have gone back, since they're so thorough. I've had no problems with my valve since then. My doctor did hear a little murmur on my check-up last year, but wasn't concerned since I had trace tricuspid regurg at the time of surgery, which they didn't feel was worth fixing. Ten weeks after surgery, I was hiking in the nearby mountains. I'm still doing great, although I've put on weight in the last couple of years that I need to get back off. If you pass through Tucson, let me know!

Phyllis Petersen  Hi Linda, I responded to this a few days ago, but it seems to have disappeared. It's been a bit crazy right now for me, but maybe I can call sometime next week. My email is fabphyllis@gmail.com.

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 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 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 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 Los Angeles. Phyllis your recovery was very encouraging. I hope I can somewhat duplicate it. Jim

Phyllis Petersen  I'm sure you'll do great. You have a fantastic surgeon and that's a big part of the journey. All the best!

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  That would be great! I'm in central Tucson, so TMC and its environs is easy enough to get to. I'll try to think of what is near there, unless you have something in mind.

Phyllis Petersen  That would be great! I'm in central Tucson, so TMC and its environs is easy enough to get to. I'll try to think of what is near there, unless you have something in mind.

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  Send me an email at fabphyllis@gmail.com and I'll be glad to give you the rundown on my experience plus phone number if you want to speak.

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 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 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. 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.

Catie B  Anna, I just posted a response on your guestbook page re: CC, etc.
And all the best to you, as you research and make your decisions!

Phyllis Petersen  Thank you! And thank you for all you have done to provide such a wonderful community and source of information for all of us going through this. You make such a great difference!

Phyllis Petersen  It used to be especially loud at night. It's rare now that I can hear it at all. The silence is a bit strange.

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.

Steve Farthing  Prior to surgery, I'd heard my heart my entire life at times even though nobody heard a murmur until 2010!

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 you a shout when things are a little less busy...

Vanessa Corwin  Hey Phyllis, it was great getting together with you in NYC! Give a call whenever you are in town. Hope your home repair and other stuff went well & your trip back was good.

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, 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 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.

Barbara Wood  I'm a snoop!! Congrats Kathy!!:) Phyllis, I miss the AZ heat in the winter, but not in the summer...stay cool!

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❤

Kathy Blank  Barbara- you are always welcome to join in the fun- heart sisters- especially MV heart sisters always! Hope your recovery is going well!

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.

Kathy Blank  Phyllis- maybe that is part of the recovery process from robotic- numbness and then discomfort. It takes nerves so long to regenerate. I am fascinated by the healing process!

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 think they told me that there's no way to really know how much feeling will come back on an individual basis, which makes sense from what we've learned about heart valve surgery outcomes.

Phyllis Petersen  Hi Barry, Which symptoms are you talking about? I can't link to your Story, but would be glad to discuss things with you.

Phyllis Petersen  No problem. I was having horrible asthma issues that weekend, but did hike early that week. We'll meet at some point.

Amy Steele  As Phyllis said, no problem. I was out of town and wouldn't have been able to meet with you and Phyllis anyway. Just let us know when you're back in town.

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 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. 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 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, 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  I'm out at dinner now, but should be around. Thursday I leave for choir at 6:30 and I may be square dancing on Friday evening. How about trying for tomorrow?