Fran's Journal

I'm sad to report the effort to improve Fran's health so she could accept the TAVR process failed. Her kidneys, lungs and heart just couldn't get things going in the right direction. The severity of the problems encountered could not be overcome and she died peacefully surrounded by her loving family Thursday evening, November 15th. Thank you for your support and prayers. Pete Zilko

It's been a rough road since Nov 1st. Her recovery from the pneumonia is slow because her heart is not able to cooperate. Thus it was decided that the valve needed to be replaced ASAP. Since flying her to Cleveland via air ambulance was a cost not covered by insurance it was decided to go to a Florida hospital with a high quality TAVR team - and there are several. Health Park Hospital in Fort Myers was selected and she was transferred there last Monday evening. She will undergo her evaluation testing over the next days. If all goes well the TAVR procedure should be performed soon thereafter. Your continued support is welcome. Thank you. Will continue to keep you advised.

Fran has had a temporary setback in her recovery from the fall. She was admitted to the hospital (Cape Coral) Thursday evening suffering from shortness of breath and coughing. Turned out to be pneumonia. Presently in ICU in treatment. Also retaining fluid creating a problem for her heart. It's going to be a while before it's all resolved. Will keep you advised. Pete

Been home since Tuesday, October 16th. Getting OT and PT for arm and legs. New TAVR date is December 10th. It became apparent I wouldn't be strong enough for November date. Thanks for all your support!

Discharge from Rehab scheduled for Tuesday, November 16, 2018. Will continue rehab at home. Hoping to be strong enough to be at the Cleveland Clinic November 14 to 16 for pre-op and then TAVR procedure on November 20. Feeling hopeful!

Been here (rehab) a week now. Work with therapists 6 days a week. Made great progress today\ standing with assistance. Pushed myself to do 4 minutes. Very little to no pain. Strive to improve some every day. Keep the prayers coming.

Big step yesterday!! After 2 weeks in hospital moved to skilled nursing facility where therapy will continue. Goal is to have the TAVR procedure in Cleveland by Nov 19. Thank you for all your encouragement and support.

The Cleveland Clinic had scheduled Fran for the week of Oct. 23-30 for her TAVR. Once advised of her accident, the procedure has now been postponed to the week before Thanksgiving so she will be stronger. Right now, Fran is still in the hospital with the hope of upgrading her accommodations to a rehab facility within a couple days. She is beginning to sit and stand with assistance. Thank you for all your thoughts and prayers, please keep them coming.

Good news: First bowel movement in 6 days!!; Sat in chair to 2 hours for lunch; Hematoma (blood clot) in pelvic area is shrinking; Kidney chemistries are improving. No so good news: laxatives used to produce BM cause strong cramping; progress with PT and OT not going fast enough, will delay move to Rehab; pain still very strong (pain medication causes constipation); All hugs and prayers gratefully appreciated.

Being followed several times a day by kidney doctor and hospitalist. Having PT and OT twice a day. Standing up most difficult. Lot of moaning occurs. Goal is to be transferred rehab hospital in the next few days. Fran doesn't think it will be that soon, but team is Hopeful. This is going to take time. Fran says thanks for all your love and positive thoughts!

UPDATE: May have a problem with October TAVR dates in Oct . Had a fall at home on Sept 1. Fractured left upper arm and pelvis. Being on Coumadin complicates the issue but the bigger issue is chronic kidney disease for the past 5 years. Hopeful the issues get resolved quickly.

UPDATE: May have a problem with October TAVR dates in Oct . Had a fall at home on Sept 1. Fractured left upper arm and pelvis. Being on Coumadin complicates the issue but the bigger issue is chronic kidney disease for the past 5 years. Hopeful the issues get resolved quickly.

Well, did get some news from the CC!!! New aortic valve will be end of October. Two more months of waiting. Will go in ahead of time for some testing before the valve is inserted. Have yet to get the specific dates. My hope is my condition does not worsen too much while I wait. Thank you to all of you who given me your encouragement and prayers. I thank you from the bottom of my imperfect heart.

Well, am 1 1/2 weeks into my 2-3 wait to learn of the date for my TAVR procedure. Time is certainly dragging slowly. Hope to have a more positive post next time.

Well, finally got some news from the TAVR team at the Cleveland Clinic and not what I wanted to hear. In spite of several phone calls, someone dropped the ball for almost 3 weeks. They did not get the request for the procedure until 8/6. Now am told it will be 2-3 weeks for them to review everything and will then get in touch with me with a date. Apparently there are 2 TAVR doctors who only do them three days a week and each of them do several a day. My hope they triage potential patients and I get an early date. Well, at least I finally have some info. Now patience is what I have to learn.

Not anxious about my upcoming TAVR procedure, but getting impatient with waiting to hear from the TAVR team with a date. It's been 2 1/2 weeks since I was at the Cleveland Clinic for testing and a cardiac consultation. Hopefully will know something by the end of the week.

Well, it's been 8+ years since my double valve surgery at the Cleveland Clinic. Hoped it wouldn't happen, but will be having the TAVR procedure there shortly. Dr. Gillinov will not be doing it as they have their own TAVR team. Spent the good part of the day there last month on the 23rd. All my testing confirmed I do have aortic stenosis. My local cardio confirmed the need for the surgery after my last echo in May. Have had shortness of breath with exertion since June. It has progressed and can only walk about 20 steps before it kicks in. As a result, spend most of my time sitting. I am on Entresto, and since it has valsartin in it I am concerned that it will be withheld since it does have valsartin in it. Since I have chronic kidney disease, the positive result of the Entresto has been to apparently give better blood flow to my kidneys and lowered my creatinine and BUN levels. So, waiting for that phone call with the date for the TAVR. Would appreciate any input from those of you who have had this done.

Today is the 6th anniversary of having a two valve surgery at the Cleveland Clinic. Dr. Gillinov was my surgeon. As I age, there have been some bumps in the road, but blessed to be alive.

Those of us who have had our surgeries know the importance of cardiac exercise. This is an unsolicited and unpaid endorsement for Leslie Sansone walking tapes. I just returned from my 4 mile walking \"class\" where we walked to her video. We walk in place, move forward and back, knee lifts, leg kicks and some of it is accompanied with arm exercises. It\'s a great cardio and overall workout but can be done at your pace if you are a beginner. My surgery was March 2010 and have done this class 3 times a week since I finished cardiac rehab, about 1 1/2 years. I have beautiful weather here in south Florida but I get more out of this workout than walking outside. So, consider getting the tape and doing it at home. There is one that has 1, 2, 3 and 4 miles, so you can pick and choose. PS, I\'m the oldest one in my class. Wishing all of you great health. I enjoy seeing my surgeon\'s smiling face on this site every time I sign in, thanks Dr. Gillinov and Adam.

Had valve surgery last year and am on coumadin (have been for 15 years). Need to have a colonoscopy and internist tells me I need to co-ordinate with my cardio and now that I\'ve had valve surgery I may have to be admitted, put on heparin right up till the colonoscopy is done. Can anyone share their experience? Prior to surgery all I had to do was go off the coumadin for 5 days prior and then resume right afterwards. Will say, it did male me nervous to be off the coumadin that long. By the way, I am in a-fib, thus the need for the coumadin. Good luck to all who are having their surgeries, be positive, all will be well.

Since I awakened this morning I am constantly remembering that is was a year ago that I was in the operating room at the Cleveland Clinic where Dr Gillinov gave me a bovine mitral valve, repaired my tricuspid and performed a MAZE procedure. Hubby Pete and daughters Chris and Teresa waited in the family waiting room for the good news. Son Steve and family and friends were with me in spirit and I felt their presence. Like everyone else who has reached this milestone I am amazed how quickly it has passed. My early recovery had some minor setbacks with fluid in my lungs which had to be drained in outpatient procedures with minimal discomfort and great relief in my ability to breath deeply. My blood pressure is not where it should be even with multiple drug changes. But we\'re getting there. Earlier this year spent four days in the hospital with shortness of breath and fluid retention. All tests showed my valves were working fine and the probable cause was a medication that has fluid retention as a side effect. The plus side is increased stamina, no shortness of breath and over all better health. Even got to walk around at 6000 feet elevation at Yosemite last October. Something I never would have been able to accomplish earlier. Even my cardiologist was surprised. I walk at least ten miles a week, eat healthily and stay positive.Life is good. I am thankful to God for His presence in my life. Pete, my children, family and friends played an immense role in my recovery and I am truly blessed. I have met so many wonderful people on this site (thank you again, Adam) and have met Capt\'n Bill and Duane and Peggy twice,( two nicer people you could never meet).I still read some of the journals and follow a few people and even reply every now and then. You will always be part of my life and those of you awaiting your surgeries, know that there are great days ahead, be positive, it goes a long way. Love you. Fran

A heartfelt wish for a wonderful 2011. For those of us who have had our surgeries this will be a year of improved health and the assurance of longer lives. Those of you who are waiting, will realize how much better life can be after you heal from your miraculous surgeries. I thank God for the year that is past and look forward to this new year to unfold. Happy 2011. Fran

Wishing all who access my journal a very happy Thanksgiving. For those of us who have had our hearts repaired, we have a lot to be thankful for. I am especially thankful for family, friends, excellent doctors and especially God\'s graces. Fran

I have been asked for the name of the walking DVD that I mentioned.Have been asked on this site, by email and on the phone. So, without further ado and no kickback, the name is \"Walk Away The Pounds\" by Leslie Sansone. I do the 3 or 4 mile walk, but there is a combo DVD that has a 1, 2, 3 and 4 mile walk. Amazon has it and probably any store that sells exercise DVDs. Great for those of you who live in the northern, wintery weather. Even though I can walk outdoors here in SW FL,I will continue to use this as it cross trains instead of just walking. So, that\'s my story and I\'m sticking to it. Stay healthy.

For those of you with faulty valves, you know altitude can be a problem, shortness of breath, angina, etc. Well last month we celebrated our 50th wedding anniversary and as part of a wonderful 2 week trip, we spent a few days at Yosemite National Park. Something I wouldn\'t have ever been able to do before getting a new mitral valve and a repair to my tricuspid valve. Have also joined a walking video class that meets 3 times a week, so much more vigorous than the treadmill or walking outside. Walk in place with kicks, side steps and arm movements, no stopping for 3 or 4 miles depending on the video. Feel myself getting more fit each time. I am probably more fit than I was the past several years before my surgery. Still have a small amount of fluid in my right lung, but the cardiologist is not concerned. My heart is still enlarged and I will always be on warfarin due to a-fib, but I can live with that to have my repaired heart. It\'ll be 8 months on the 18th since my surgery.It has gone by quickly and some aspects of it have faded already. Like many others after me who have gone to the Cleveland Clinic I am thankful for my surgeon, Dr Gillinov and the excellent system they have in place. I am happy to see so many new faces on this site. Still say we need to have some kind of a reunion. Maybe in Adam\'s back yard? For me, being informed,having a support system, lots of prayer and faith, is what helped me get through.I will continue to write in guestbooks as I can and encourage others to see this as a step to better health. Thank you all, especially my dear husband,family and friends (that includes HVJ friends) for supporting me through this journey. Love you.

Duane has written the most beautiful tribute to Lori and to all of us. I\'m not as eloquent but I will try. I will not elaborate on the sadness we all feel regarding Lori\'s untimely death. Adam wrote that he had taken their daughters to Mt Bonnell (in Austin)to discuss their Mommy\'s condition. He said it was Lori\'s favorite place. When we lived in Austin it was also my favorite place. Climbing those stairs to a lookout of the Colorado river, the trees, the sky and the birds. I hope he will return to that place again for peace. Now for the hope part of my title. It has to do with Kimberly. She has had some permanent problems since her heart surgery that have affected her life forever. None of us could really begin to understand her pain, frustration and sadness. However, Lori\'s death has given her the courage to face her problems with renewed faith and hope that there is a lot to live for. We are praying and rooting for you. I am so blessed to have found this site and the wonderful people who are on it and who are willing to share their deepest worries and joys with each other. (Thanks again to Adam for making this all possible).

Friday was my last day for rehab and I will honestly say that I will miss it. The staff was excellent and my fellow patients were a varied bunch. It\'s been 5 months since my new bovine valve and my repaired valve and time has gone by quickly. I will continue exercising on my own at our fitness center with the treadmill and elliptical trainer (that takes a little getting used to). There\'s also a twice weekly water aerobics class that I will join. I\'ll become one of those \"noodle\" ladies. Remembering back to the first several weeks I realize how time does heal, physically and emotionally. My prayers go to those who have had complications post op and hope that doesn\'t frighten those of you in the sidelines who are waiting. Almost every one of us has had a glitch here and there but the end result is a healthier heart. Won\'t post again till late September after my 6th month cardio visit and echo. Thank you to all of you who have encouraged me through the months. God bless.

Great to realize how far I\'ve come from the first several weeks when I suffered from shortness of breath and had fluid removed from my lung cavities twice. This week I had my cardio visit, he\'s pleased with my progress. I just finished my 12th cardiac rehab class and what a difference that has made. Being monitored as I exercise has made me more confidant. My a-fib is not going away and I can push myself without negative effects. Life is good. As everyone else has said, it\'s amazing the progress we make as we recover. As I\'ve told so many, gauging my progress by the week instead of the day was beneficial to me, especially early in my post op period. Some of the difficult periods have already begun to fade from my memory as I look forward to a healthier heart and life. Supportive family and friends and prayer have made it possible. Heartfelt thanks to Dr. Gillinov, Adam and the HVJ friends I have met.

To all of you who have had your valve surgery, at what point did your cardiologist order an echo to determine how well your valve(s) is functioning? Thanks.There\'s been a rash of emergency visits lately, stay healthy.