I'm very happy to announce that I heard back from the Cleveland Clinic this morning. Dr Svensson thoroughly reviewed all of my records and reported NO SURGERY AT THIS TIME!! They shared that he believes it could be a while before I would need intervention. Additionally, he would not do an open chest and would hope to do TAVR if necessary.
They suggested echocardiograms every three months to make sure my heart is not getting enlarged and to monitor my symptoms. Very very ,very , slow and minimal exercise at this time to improve conditioning. Otherwise, No limitations whatsoever. I can now go to Texas and meet my beautiful granddaughter with peace of mind and a grateful spirit!!!
Feeling really blessed!!💓🌟
Today is my 2nd Valversary . Feeling blessed to have enjoyed life so fully these last two years. Despite some symptoms. Every day is a gift! Awaiting news fro CC TOMORROW for feedback and diagnosis!💓🙏🏻💫
Finding every moment to Embrace and Celebrate Living!
Happy 4th to you all!❤️💙
( my niece and nephew and my husband😘)
Journal posted on June 29, 2017
Received a phone call from CC today. Wanted to speak to me regarding my packet of info I sent. NP seemed very encouraged that I won't need surgery at this time. Regurgitation is moderate. So sad that my FL doctors freaked out. Sitting tight until feedback from CC after July 4th. Quite an emotional roller coaster!!!!
As I'm gathering all of my documentation for the Cleveland CLINIC. I needed to get my operative report. I have found it very interesting to read all the ins and outs of my surgery. In reading the report, I've learned that there were some challenges with placing my valve. Although the overall surgery went well there were some tenuous parts of it. Glad I have this now to add to my records . Very interesting. Feeling so impatient and tense today. 😢
Celebrating Life and Love with my Parents. Embracing every day. Uncertainty, about the next step and taking it one day at a time!💓Prepping my documents to send to Dr Svensson @ CC. Hopefully, some clear Treatment plan and Diagnosis from him in 2-3 wks
Journal posted on June 4, 2017
I really would love to have a TEAM of HODGKINS SURVIVORS COMMUNITY that have heart damage from Radiation . Seems like there are many of us. Especially, those that received treatment in the 90's. So happy to have you all here!💓
Please Add your name if that is your cause, along with your Stage and Date.I really believe we can provide tremendous empathy and additional support to one another. I am very involved with LLS- LEUKEMIA/ LYMPHOMA SOCIETY and raise lots of money each year to aide in research and awareness.
Hello my Dear Friends~
So I'm basically finished with seeing all my doctors here in FL. Due to the fact that we still cannot gain consensus if my valve is leaking internally or externally , we are in a holding pattern for a little bit. My heart is strong, and there is no enlargement. Therefore, I am safe right now. However , it is inevitable that I will have to have complete open heart surgery again to replace my valve. Since the leak is severe. I have at least a few months for now and plan on living my life to the fullest with minimal exertion! I have made decision after a lot of deliberation and speaking to many medical professionals that I want to go to the Cleveland Clinic in Ohio. If any of you have gone there and had your surgery there, I would greatly appreciate any referral that you could give me. My surgery will be complicated, lengthy, and risky on many levels. I hope to find a surgeon who has experience with redos, complicated cases, especially involving radiation damage. Any of your suggestions or help would be greatly appreciated. Also, if you went elsewhere and had a complicated condition and were satisfied, please send some information along. Thank you!💓
Hello Heart Brothers and Sisters~
I hope all of you are doing well on your journey. I had a question for anyone that this might apply to. So initially ,I had Aortic Stenosis and was asymptomatic. I then received a pig valve. . Upon going for my heart surgery 20 months ago I had minimal shortness of breath. Now I have Aortic insufficiency from a leakage. The doctors are having great difficulty establishing if it is that my valve replacement failed or I have an X ternal para valvular leakage. The causation of my heart if she was from radiation damage so it is skewing the scans and studies.. Leaving them with a very difficult time assessing my damage. I find it very interesting that over the last six weeks I have developed severe shortness of breath and find myself declining rapidly. I was wondering if someone could speak to me regarding regurgitation versus stenosis.,And symptoms contained within. Feeling really frustrated, emotional, and confused!❤️
After carefully reviewing of all the studies last night, The doctors are not on the same page as to the diagnosis, therefore prognosis. Basically is the valve leaking from stitches or is it leaking internally by the flaps? They each get a different viewing from the pictures - TEE AND ECHOS. We are going to get several other opinions before anything else gets done. We have been informed that I have had this for several months and that we have time to get more info from various doctors to choose from. But surgery should be done in the next few weeks.The test reports are subjective and very difficult to read due scarring and radiation damage. The valve does need to be replaced, however the procedure is still up in the air. I am
holding up very well under the circumstances,but it has been very challenging an disturbing. Leaving the hospital tomorrow after four days ,can't wait to get a good nights sleep in my own bed. Pray for me that we can make the right decision that will sustain my life the longest !💓💞💕
At JFK... Pre op testing . Hopefully , TAVR ON Wednesday. My gorgeous loving son , and great trauma nurse came from Texas for support ! Feeling loved💓💕💗💞
You Will Be Well💕
Journal posted on May 7, 2017
Dear Heart Brothers & Sisters~
I'm writing today specifically for the people that are getting ready for their heart surgery. If you have been reading my posts , I'm sure you can see that I'm approaching my redo of my Aortic Valve. By no means do I want anyone who's approaching surgery to be frightened by this. I came back on the blog because I had so many
that I knew would be eager to help me along this 2nd journey. I want to make it very clear that is very rare that a valve can deteriorate so rapidly, as mine did in only 19 months. All of my doctors stated it should've lasted me 12+ years. So I want each of you to go into your surgery with the utmost confidence knowing that everything will be great. You will feel wonderful again, and your valve will stay strong. Please only make a connection with me based on my unending spirit and optimism. Not with this unfortunate situation that happened to me. You are all going to be great and well! Stay strong!💕💗💞💓
Back in my positive mode. My TAVR surgery will either be Tuesday or Wednesday. It is a complicated story due to insurance and will be at JFK HOSPITAL , FL. Getting pretty psyched about getting a new valve and being able to exercise and live strong!
My " BABE" ( pig valve)
She's been giving me a hard time lately. Wound up in the hospital with lots of shortness of breath and chest pain. Thank God all is OK. Taking it one day at a time. At home,Starting my day with a little slow dancing Lou Rawls,
Looks like TAVR FOR ME FOR ROUND#2!
Tentative day May 12th. Moving a lot faster than last time. Dr. Augusto Villa, Mt Sinai , Jupiter , FL. Feeling Positive, Powerful, and Prayerful!💕💞💓
Valve Failed in 19 MONTHS
Journal posted on April 23, 2017
Although I was having some shortness of breath and couldn't exercise the way I would have liked to I would've never believed that my valve was leaking severely. So this week I had an echo, Tee and cardiac cath. I am 55 and although I have a really positive great attitude this is pretty shocking. We're also having some difficulty with hospitals that are in my plan that will do the surgery. They are highly recommending TAVR. That's a lot easier for me to swallow but hoping it will work. We're going to be heading to Mount Sinai in Jupiter Florida. Any information that anyone has would be a great help. Guess I'm going to be back on the blog for support. 😥😥😥
Feeling nervous today. My aortic valve surgery and triple bypass were in July 2015. I had great results. Unfortunately,the last two months I've been feeling some shortness of breath when taking my walks and some lightheadedness. I'm concerned because I have a tissue valve I knew that someday it will probably have to be replaced but not this soon !!!! Insurance has been a real issue, and had to select on the doctors with a very expensive plan to Obama care called Florida blue. Seeing a new cardiologist on April 11. Went to New internist today and she said she had a murmur. That scared me because that was corrected I believe with the surgery. Open to any words of wisdom, support, and information. Yikes!!!
We just had a memorable, magical weekend and wanted to share our story with you. Mary Anne and I were fortunate enough to meet each other on your blog. Cancer survivors coupled with our strong Faith in God brought us together. We walked beside each other through the process of preparing for surgery, during surgery and recovery. My surgery was July 2015 and MARY Anne's in October 2015, and we have continued and developed our relationship since then. Kindred spirits, earl grey tea lovers, vivacious personalities are just a few of the many similarities we share. So, we knew we had to meet in person. Mary Anne lives in New Hampshire and I live in Florida. So this weekend, she and her husband came to visit us. Cooking, nature walks, attending church satiated us as we spent time together as if we've been friends forever. We feel so blessed and grateful to have met each other. We want to thank you for creating this blog as a means to help so many. We call ourselves Heart Sisters and look forward to continuing celebrating life together! God Bless You!❤
( check out our Pic!)
For one month leading up to my open heart surgery, I lit a candle of the blessed mother and it burned perpetually on my kitchen counter. The flickering of her light was a continual reminder of the light I was hoping to sustain within myself. So today, on my 1 year anniversary I honor Her. I am lighting multiple candles to represent the strength of my light that She has relit. This has been a year filled with courage, strength, healing and personal growth. My Faith and the power of The Blessed Mother carried me and healed me. I am ultimately Grateful and humbled. Being alive and well is a beautiful thing!💕
Thank you my heart brothers and sisters for your support. I'm glad that some of you encouraged me to go to a cardiologist to address my light headedness. I have finally gotten a conclusion to the causation of my symptoms. What a relief to have some resolution! I knew in my heart that this felt so physiological and wasn't just anxiety. The doctors feel that the combination surgery of triple bypass and valve replacement prolongs the time on the heart and lung bypass machine and this is the result for me. Memory loss, confusion, difficulty when driving, lightheaded, etc. I'm still feeling so blessed and hopefully it will Pass. Exercise and wine seem to help me the most and the doctor is in agreement! Nothing will keep this girl down and I am enjoying life every moment! Please pray for me that it dissipates quickly 💕
This has been quite a remarkable journey. I went to church the other day and just cried, tears of joy and gratitude. I'm so excited because I'm just beginning a bereavement ministry at my church ...something I've been praying for for a long time. I physically feel really good, and that pumping freight train has really subsided. Still taking metoprolol.
Unfortunately, I've been suffering with lots of anxiety. It's strange because it feels so physiological. I feel racing and hyperactive and jumpy. I get dizzy spells often. I was wondering if anyone ever had experienced this? It didn't occur intil month four. What's odd for me is I feel so positive, happy productive, and the psychiatrist feels it is "trauma"It's hard being a counselor and not being able to fix this one myself! Hope you are all doing well on your healing journey my heart brothers and sisters !❤️
Happy Thanksgiving my heart brothers and sisters! I am most thankful for all of you this year. I could have never gone through this experience without all of you and your support ! Many blessings to each and everyone of you ❤️🍂
Journal posted on November 19, 2015
This is month 4 and I am confronting tough challenges . I physically did so well and had no complications with my AVR and triple bypass. However, I'm really suffering with emotional trauma. ( PTSD)!
I had a lot of anxiety after my stroke three years ago. It was a really frightening to not be able to speak, read, write, etc. I have recovered 85% and feel very blessed . My cardiologist at that time encouraged me to wait , be strong , keep up my exercise and so that's what I did. So I went into my heart surgery quite vulnerable in a very nervous emotional state. The first month post surgery I was euphoric that I had a survived, and I didn't have another stroke, And did so exceptionally well. Thank God I'm a good healer and overcomer. The next two months I was dealing with feeling really cold all the time,loss of appetite, and soreness. Then I began to feel a little like I had ADD and my Valve was pumping like a freight train. So I guess when I really started to integrate and begin assimilating in life again I started to get more anxiety and felt nervous and jumpy inside. I'm a psychotherapist and I know a wonderful psychiatrist who is walking this walk with me. She's prescribed Xanax at a very minimal dose that I take on most days in the morning and sometimes at night. I have tried SSRIs and they just make me too jumpy. So I'm being really vulnerable with all of you today and sharing my heart. I feel sad, frustrated, and losing a lot of strength to fight off this emotional trauma. I stopped working for hospice after my stroke three years ago and or filling my days with some volunteer work and seeing wanted to stroke patients. It's a big change for me .My cardiologist said that it's related to being on the heart and lung machine, just having heart surgery and having had a stroke prior. I'm open to hear from all of you my heart brothers and sisters for any feedback, interventions etc. that might've worked for you. It's quite a process!
I still can't believe it happened! Big changes for me at 3 months. I barely have any sternum pain and have kicked up my exercise routine . I am taking belly dancing classes once a week. Joyful exercise and a great workout . The twirling of the veil really is helping me strengthen my upper body. Also I am taking a one to one PILATES class once a week. I feel so out of shape and my core needs strengthening . I finally can walk outdoors up to 2.5 miles a few times a week, since the weather in Florida is getting really nice. I must admit I am back to afternoon naps . I need the rest after exercise. Mustering up lots of determination to become stronger . I still feel "shocked" by this entire event coupled with my stroke 3 years ago. Feeling anxiety come and go while in a place of gratitude. Learning to be patient with myself. Hope you are all doing well on your individual journey heart brothers and sisters!❤️
First Echo since my surgery nine weeks ago. Pretty excited to have a new baseline and learn that my heart is fixed! However,I am nervous about the stress test. Also, Having some PTSD. Even though I am a Counselor I can't fix myself. Doctors feel it comes from me having 3 life threatening illnesses: cancer, stroke, and open heart surgery. Psychologist says, I am subconsciously waiting for the next thing! I decided that cardiac rehab would be good for me , even though initially my surgeon said I didn't need it ,so that's why my doctors are do a stress test. Did any of you have to do before starting rehab?
Hello heart brothers and sisters! Hope everyone is doing well! So it has been nine weeks since my surgery. As you know I have done very well. Just Lot's of typical soreness , pain, racing heart, etc. Still in a place of Gratitude. So my son and daughter-in-law came in for a long weekend visit. I was so excited, since they have not seen me since my surgery. Maybe I wanted to show off to them how well I am doing, and today I am dog tired, sore, and my incision really hurts!!😆 I guess I'm not used to doing multiple things in one day, entertaining, and being ON like you are when you have company . So this is a good reminder to me that it's still so early in my recovery and I am still healing. FYI , I think having a large breast and my mammory glands being used for bypass has really injured my chest. No upper body weightlifting for me for a while! 💕
So I am now at 7 weeks! Still coming along steadily and progressing nicely. My resting heart rate has still been hovering about 90+. I feel like I have a freight train in my chest. My new valve is pumping quite hard and even though it's not mechanical I could feel it and hear especially when resting. Decided to check in with my cardiologist today. So although I'm on 50 mg a.m. p.m. Of metroprol , We area going to kick it up to 75 AM/Pm! I've been on this drug for three years post stroke and do very well with it , so I'm not concerned. He said I have no restrictions and time to even exercise my repaired heart even more ! Ready to get dancing and kick it up a notch! Hope you are all doing well on your journey!💕
Hope everyone is doing well! As you all know my surgery went very well and my recovery has been smooth and steady. Unfortunately,I have been having a lot of neck and shoulder soreness. My sternum still is sore and my chest feels really tight and is pulling. No big deal,but uncomfortable. Thinking of calling my DR for a physical therapy script. Any thoughts or feedback?
My best friend of 45 years came to visit! The best medicine!💋
Journal posted on August 19, 2015
Shhhh! So I had a little tif with my husband last night. I sometimes feel like because I look so normal on the outside, our house is really clean, I'm cooking dinner, we are socializing, walking , I even saw a client this week,he thinks everything is back to normal. Believe me I am celebrating my recovery very graciously and gratefully ! However, I did have open heart surgery just six weeks ago and my chest really still hurts ! I think when I get tired believe it or not.., it might even make me a little cranky !😉thank goodness I have all of you, Because sadly enough I really don't think anybody can truly get it if they haven't been through it. Doing great but still feeling somewhat fragile and vulnerable !💕
This is an excerp from my book
"Inspired". I hope it helps!💕
My Heart is Fixed
Journal posted on August 10, 2015
I know that the doctor has repaired the damage to my heart. I have a new highly functioning aortic valve! I have three fully cleared arteries ! And my mind can't seem to wrap around that. If I feel my heart beat a little oddly, or if it pumps loudly, or I feel little dizzy, and feel lethargic... I pause for a second. I still feel weak and more symptomatic from presurgery , so it's hard to internalize that I am well ! Taking it one day at a time and reminding myself that this is a process and I am getting better each and every day. ❤️
Setting goals really helps me. Such simple Activities of Daily Living . However, Making this list helps me look at the strides I'm making and hopefully weeks down the road how far I've come💕
•cook dinner 3 nights
•out to dinner 1 time
•walk 5 days, increasing to 1 mile
•make bed daily
•do laundry daily
•grocery shop independently
•shower without supervision
•start reading non fiction book on Brain Power
•Schedule volunteer position as Parent Liason in Charter Autistic school to begin 9/1( 1 day a week)
Hope you all are making progress on your individual journeys heart brothers and sisters ❌⭕️
I am so thankful that I had my stroke recovery. I learned a lot of hard lessons that are helping me today heal from heart surgery. Learning to live in the present moment, to stop doing and just be , were some challenges I struggled with in the past. Valuing each moment with the people I love and making moments seem to be my major focus , which make my life seem that much more rich and fulfilling. I've learned also to be compassionate with myself and allow myself to feel negative emotions and cry if I need to. Recovery is not easy and I am a much more empathetic and compassionate person with each challenge I overcome !Personal and spiritual growth can be awesome! ❤️
As I've shared with all of you I really have been so blessed. Now it's time to start getting back to life. This is the hard part for me because I tend to get anxious when I have to leave the house and I don't feel safe. Heading to whole foods today with a friend and going to my brothers for dinner and I feel a little nervous. Trying to get a handle on my emotions. I feel very positive as you know, and upbeat. I get scared that I'm going to feel weak or my heart is going to be too fast. I remember going through similar feelings after my stroke. This is the time when I need to breathe, and forge through. I do know that I am OK !!!!! Now I just have to start internalizing it !!!! Happy Sunday heart brothers and sisters ❤️
Good morning gang! I hope everyone is doing well on their journey. So funny I have so many more questions post surgery than I did before. I was on Lopressor a.m. and p.m. prior to my surgery. I'm still on my same dose and I was also on a blood pressure patch.... thank you God I don't need that anymore and my blood pressure is just great. However my resting heart rate still is 90-100. I can really feel my heart pumping and my "babe" working. I got a tissue valve and I can still hear it when I'm resting on my side. Has anyone had an experience with this fast heart rate and how long does it take to slow down and normalize ? I thought this is a good thing my heart feeling strong. It's pumping really well and I am getting better! 💞
PS- can't help it that therapist in me always tries to reframe it into the positive ,but as we all know these little things can cause us some anxiety 😉
Saw my cardiologist today. Had a great visit. Feeling really strong. He said I was in the top 1% of all his patients. I must have some amazing angels watching over me. Believe me I'm still tired and I'm freezing all the time but he thinks my blood pressure is still Okay might be bordering a little bit on anemia but I'll take it! Hope you are all doing great on your journeys heart brothers and sisters !❤️
So it's Day 19 and I decided it's time to get moving. It is 100° here in Florida, so walking outside is not an option. I decided to head over to Target and do some walking. I walked 6/10 of a mile ! Made me feel like a total wimp when I look at how some people on the blog are walking 4 miles!!! I can't believe it. I feel too weak for that. I think this is when the hard work is going to begin , regaining strength and stamina. Fellow survivors out there is it typical to be able to walk 4 miles after 2 to 3 weeks? I'm going to just take it one day at a time and try to do a little bit more each day. Wish me luck ❤️
Thank you my heart brothers and sisters for all your input. My doctor agreed with the Tylenol p.m. so I tried it last night. That along with a nice pasta dinner and a visit from my family gave me a good 5 to 6 hours of sleep ! I definitely feel so much better today. So I don't know if it was the pasta, the love or the Tylenol !! He he! Whatever it is I'll take it ! Stay well my friends keep on ticking ❤️
Hi fellow heart brothers and sisters. Here I am and it is 2:30AM and I am posting. I have not been able to sleep and it has really become an issue. I am able to get into my bed ,which is great but can only sleep for 2 to 3 hours.lots of aches and pains, stiffness, can't get comfortable. I seem to be up in the middle of the night and can't fall back to sleep. My surgeon said it's really normal. But now that it's a couple of weeks it's wearing on me And I need a good solid stretch. I do a little walking, write some thank you cards, fold laundry, all in the middle of the night. I haven't been on any pain meds for a week and just taking Tylenol so that's not helping. Any suggestions? 💕
Two weeks post surgery! Feeling fabulous! Ready to rock and roll ❤️
Journal posted on July 19, 2015
Good morning heart brothers and sisters! Hope everyone is doing well on their personal journey! I am in such great spirits feeling so excited with my results and how all the things that I was so frightened of didn't happen! My new pig valve " babe" is going to be my best friend! God is so good !💕
So it is 11 days post surgery! I am so grateful and really doing extremely well. Counting my blessings every moment. Unfortunately though I am having the sweats at night and I have to wake up and change my shirt once or twice. Has anyone experienced that? Hope you are all doing well my brothers and sisters and coming along !💕