Welcome to the club.

Richard Volpe

Im glad that your Surgery went well.Your'e now on your way to recovery. Blessings to you and your family.

Carol Wheeler

...just now saw the surgery is complete. Ah, that Dr. Tom and his team is a hero to another. ...Barry on the mtn in NM

Lots of wind here on the mountain in NM to swiftly carry more positive vibes to you from the Land of Enchantment. ...Barry

Dear Mona,

You will be in my thoughts for the coming week. I'm sending you all positive thoughts for a successful surgery and a FAST recovery! I love your attitude. Keep positive!

Anne Shannon

Good luck and I am looking forward to hearing from you soon. God bless - Jon Farmer

Mona,

You'll be in my thoughts. I know everything will go well and you'll soon be on the road to recovery.

Ricki Shine

Will pray for you as well. "...stay with me Lord for it is nearly evening and the day is far spent..."
Jim D

Mona,

I woke up praying for you this morning and have been praying for you throughout the day. There is not a doubt i my mind that God's will has been done in this situation. I know God guided the surgeon's hands, the operation was a success, there wil be no infection of any kind, and your recovery will be swift and complete. I thank God for the support system that you have in your family and friends and know that I love you. I am believing God for total physical, spiritual, emotional and mental healing, and that every last one of our needs will be met. Thank you for being you, and for being my friend. I love ou girl. Rita

Hi Mona,

I will be praying for you and thinking about you tomorrow. You are in God's hands. Focus on the comforting thought that this will soon be behind you!

Chris

Praying for you Mona! Jon Farmer

more positive vibes to you from NM....Barry on the mtn

Hi Mona, I will keep you and your Doctors, Nursers, Caregivers in my Prayers.
Carol Wheeler

Mona,
I am sorry to hear that you have two valves leaking. Thankfully you will be able to have both repaired with one surgery. It is a shock, though. I had my full sternum cut and opened when I had my surgery, and it wasn't as bad or as painful as I thought it would be. It just takes a good amount of recovery time. I wish you all the best. You are and will continue to be in my prayers.
Tia Phillips

Mona,

I am indeed sorry to hear about your case. Sometimes, you think that its just raining crap. I will be headed to Cleveland on May 25 and 26 the to meet with Dr. Svennson. Our journies are like the walk to Emmaus. Remember the prayer, "...stay with us because night is coming and the day is far spent..." Our night is indeed coming. But always remember that God is always with us. We many not see him, just as the disciples didn't that day. Take care, Good Luck, and God Bless.

Jim Davis

Hi Mona,
It seems like the shocks just keep coming with all of this. I am sure you will pull through this fine and it soon will be behind you. From what I hear, you are in the best hands possible. Good luck today. You will be in my thoughts and prayers.
Chris

Mona,

I'm sure the news that 2 valves are leaking was a shock. But that's why we go places like the Cleveland Clinic . . . they see things other docs don't see and will fix them!!

Have a good second day there. I know your appointment with Dr. M will make you feel better.

Ricki Shine

Sorry, Mona, to hear about the 2nd leaky valve. Why life brings these things is a puzzle, but it is what it is....the glass is still half full, it is...you have the best team on the planet to take care of this. I haven't shared this, but my CC exit echo showed another of my valves leaking. When I had my follow-up with the cardiologist here, I gave him a copy of the report, commenting next to the entry a comment about are they trying to play with my mind....My cardiologist guy had an echo done as part of the follow-up appointment...and no leak...whew! You are gonna pull through OK. Being a non-thiest I won't be sending prayers, but I'm sending more positive vibes your way. ...Barry on the Mtn in NM

Hi Mona. I'm sorry to hear about your condition. I can relate to your "shock". I had no symptoms and was only going to the doctor for a physical. I am having my surgery on June 2 at OSU. I wish you the best and God bless. Jon Farmer

Hi Mona,

I'm new to this site. I too have MVP with severe regurgitation. I think I'll be starting the adventure you are on soon. Good luck with the surgery. I will keep you in my prayers.

Chris Ohannessian

Mona, this is Emilyrae. You have made such a right decision to go to CCF. My mitral valve regurgitation surgery will be there on July 12. You will be well on the recovery road by the time I am where you are now. So please keep me updated and I will be watching closing your recovery process - the good news is that I have scanned the journal pages and everyone is so glad they have gotten it done. I have a question: Has your local dr agreed to take over your care once you leave Cleveland - I found last time I had my af-fib ablation done at CCF that my local EP doctor's ego was too big and he felt I was then a patient of CCF and he was through with me. I do have a new dr. now and last Friday I went in there to try and get this cleared up beforehand and if necessary find a dr that will work with CCF. EGOS!!!!!

Positive vibes to you and your time at CC. Can't believe tomorrow will be 8 wks since my discharge there, and today is 8 wks 2 days since Dr. Tom did the valve job on me. He does good work...you are in good hands..best to you. ....Barry on the mtn under blue skies in New Mexico.

Hey Mona,

I love your positive attitude. Keep it up. My thoughts are going to be with you every step of the way!

Anne

Good story, Mona. ...ha, ha! I had forgotten about this one, and perhaps there's a lesson in it I should remember when I have those "father - son" talks. ...barry on the, can't believe it is a snowy mtn on May 2nd in NM

Mona...can see you are hanging in there really good. Just think, won't be long before it is all history...will continue to send positive vibes your way...and will be envious that you will have much more pleasant Cleveland weather when you are there compared to our time...although, I will tell you the Cleveland spirit I observed on St Pat's day with the parade and all was spectacular..glad to have gotten to see it. Take care....Barry

Mona, Sounds like you will have the most marvelous support team with you during your surgery. For me, you know the independent guy, not even a thiest, the one who would have gone off to CCF by myself, having my sister and one of my daughters there with my wife, Ms. Kate, was super. There was a lot of fun stuff that we did together, and I know the ladies really had a good time on the town when I was doing my thing and they couldn't be with me. And, I know Elaine, my sister, and Melony, my daughter, helped Ms Kate with her stresses, as well as supported each other. Best wishes to you when you get to the "Table". Know you will do just fine. Barry on the mtn in NM.

Moma, thanks for the encouragement. I have not posted my journal yet. My surgery is Aug 14 and my name is Emilyrae Helfen. I will be posting it soon. Right now I am developing my plan, going to start yoga, meditation tapes, and I have done EMBR (like Ruth) in the past, will probably take it up again. Dr Gillinov has said I could continue my exercise routine - treadmill - 45-60 min 3 times a week. I would appreciate your prayers.

Mona,

This is a wonderful website. I commend you for sharing your experiences with others. It is important that you keep one another lifted up. Stay encouraged. My prayers are with you.

Carlene

Mona, I am scheduled for open heart (was 25 Aug, I moved to 14 Aug) for mainly the reason you are citing - tired, no energy. Would go sooner but some personal reasons and Dr's schedule conflict so the 14 Aug is the best can do right now. Therefore I probably not in the zone to get anxious yet. However, I had open heart surgery in 1984 when I was 40 at the local hospital, so I am really positive at this point because I know all the improvements they have made in 26 years, plus I am going to CCF which is the best Heart Hospital in the country for 16 years (and I have had an afib ablation done there) Just trust in GOD and think about how blessed you are to be living at a time when your problem can be fixed. GOD BLESS

Mona,
I know what you mean about feeling tired. I have been tired for years, except right after my surgery. Now I am regaining my energy as I go through cardiac rehab. I had been very out of shape before surgery due to my lack of eneregy. All the energy I had went into my teaching job, just to get by.
Don't worry if everything isn't perfect before you leave for surgery. It sounds like you have many loving family members who will be glad to help you. Please let them. You would do the same for them if they needed it, wouldn't you? Take advantage of the help for as long as you have it. Try not to overdo. I know that this is easier said than done. It is still good advice.
I took diazepam to help calm my nerves before surgery. (Mine of Feb. 28.) It is alright to take something, like your xanax, to help you through this time. I hope you don't worry too much. Try not to stress too much, now or about the past. Just go from here. That is all any of us can do. Take care. You are in my prayers.
Tia Phillips

Mona,

You may want speak with your cardiologist about propranolol. This is a beta-block (very safe) and it will lower your BP almost immediately thus decreasing your anxiety. Its a vicious cycle, I know first hand. To your question about anxiety, 0.25 of zanex is a low dose and in order to work effectively must be taken as prescribed, during the onset of the thoughts. I say "thoughts" because anxiety is largely set off by stressfull thoughts. If you wait until the attack is full blown its harder to offset.

best of luck
Terry T.

Hi Mona,
I'm here in Cleveland awaiting my surgery this week. See my new post today. About Xanax. I was also given it for anxiety and I have been taking it. If you took half of a .25 it's not going to do much good as that's a very low dose. I was told I could take one .25 at bedtime and a half of a .25 during the day without risking addiction. Also, Xanax will help lower your blood pressure. A good thing.
I opt for taking Xanax at night to sleep because my feeling is it will have a kind of residual calming effect in the morning. A sleeping pill will not necessarily do that. Even with the Xanx at night I am not sleeping well. But then I haven't been sleeping well for years.

I think you deserve to be calm and the Xanax will definitely help with that. I don't overdo it, but I do take it during the day if I'm feeling even a little anxious as I don't want my anxiety to get out of control. Now that I"m in Cleveland I am definitely taking it at night and during the day because I am prone to panic attacks and I don't want to go there.

I'm sure you know that you cannot take Xanax AND a sleeping pill together!!!!! Hang in there. I'll let you know every step of the way how everything is and what you can expect.

Take the Xanax, girl!

Ruth

Uh, Barry, You're not supposed to get your teeth cleaned for 6 months after heart valve surgery and you MUST take antiobiotic before the work. ruth

Hi Mona,

Re High BP, I can share this and my personal experience, although there has to be a lot of individuality, so how much could pertain to someone else...who knows for sure.

I have been treated for HBP since David Blume's (an embedded journalist during the Iraq invasion) dying of a blood clot prompted me to let my doc know about the pains in my legs, the doc that says no blood clots, but if I don't do something about my BP, I am going to literally "blow a gasget". So, low carbohydrate diet reduces weight over time from about 225-230 to, for one day, my goal weight of 161. Also, low range cardio (easy swimming) for a couple or three or four years resolved the BP issue to the point I was off meds. Exercise helps...did it...but no one can explain this....In 2005 when I started running, the beginning of my endurance sports career/metamorphasis, my HBP came back and I had to have meds again, and have ever since. However, I do notice when I am diligent about exercise, now includes swim, road bike, and run...(& weights & stretching when I'm organized..NOT)..when I'm diligent the BP, with meds, is very under control. However, if I get busy, lazy, really disorganized, not diligent about exercise, then the BP tends to go up. Then there are these instances...like the other day in the dentist chair just for a cleaning..and I don't get stressed over such, not even fillings without pain med treatment..the young lady takes the BP and says do you have HBP..I says.."duh, look where I am"...that's because I've learned that my body, not my brain, you know, the brain part that I know about, ..my body always reacts to the dentist chair with I guess it is called "white coat high BP". Here I am almost 5 wks post OHS, and yesterday after I did my sprint tri simulation, my BP was so good, like 110 over something. Wow, that was super, but within the last few days when I was in between exercising, yes, there were some such days, I had some 150s+ Systolic and 100s+ Diastolic (sp?). And, it has not been unusual for me to have irregular heart beats, which, as far as I know, I never had before. Yes, I sent a copy to my cardiologist of the reading from the BP gadget that downloads to my computer that prints out as a graph as well as a log of readings. But, it seems this is all part of the territory of having the OHS...I guess. My BP meds were changed with the surgery to take the metoprolol (beta blocker) to reduce the high HR that seems to be part of post surgery. My Nifedipine (sp?), a calcium channel blocker was stopped until my cardiologist started it again, but started it at 30 mg time release/day where it had been 90 mg time release/day. I am sure the lower dosage because of the betablocker to reduce teh HR also reduces BP. Another observation re BP I made/learned. It seemed that when I went to low altitude, like to Austin, TX to do an event, my BP went down. Also, when I went to VT and was training my BP went to hypotension and one year I called and got a new temp prescription for the Nifedipin to change it from the 90 mg to 30 mg while I was in Vermont. I asked and my cardiologist and he said altitude does make a difference. I live at 7000+ ft and spend a lot of time in Albuquerque at 5000+ ft. So, I don't know if any of this infor will be of help...but I'd summarize to say that if you would include some low cardio exercise at least 3 or 4 times a week a long with...didn't mention really, but a really healthy diet...low sodium, etc...your general BP should be enhanced, although you still may need med help. Another thought regarding myself and HBP. My arteries are what they are for this old(er) guy. They "got" placque. Now 1/3rd of the blood for each left ventricle contraction is not backwashing, so there's more push for each contraction...hmmm....mechanically it seems if the arteries aren't elastic enough, there's gonna be higher BP....Barry on the Mtn in NM...Good luck to you...

Hi Mona,
Well . . . I'm in the same boat. I developed high BP pre-menopause and have been on BP meds. since then - and I guess that was about 20 yrs. ago. I do not believe BP meds are addictive like tranquilizers, etc. In fact, they are good and very important for protecting your heart. High BP is often genetic and I doubt there is much you or I can do about it other than take the meds.

I take Acupril which is an ACE inhibitor which is often prescribed for people with heart conditions. During the past two years I have had to increase my dosage because my BP wasn't staying down. I am thinking (maybe) this had something to do with the worsening of my heart valve. Not sure. It is now under control. Like you, when I get upset - even if I don't FEEL upset - by blood pressure shows it. When I saw Dr. Griffin at CC by BP was off the charts - which is not normal for me. He said "you LOOK calm, but obviously, your not." I have been told that this temporary elevation (spiking) of BP is not dangerous as long as it does not remain that high for a long time. During the course of my exam my BP came back down to normal. This is often referred to as the white coat syndrome (when you're in a doctor's office). So what you experienced sounds pretty normal for people "like us."

Like you, I have also been wondering whether my heart surgery will remedy my high BP - and I am hoping that will be the case. I do know that a lot of people who did not have high BP going into surgery end up being on BP meds at least temporarily after surgery to regulate their BP. Others end up with low BP. I'm going to ask Dr. Gillinov about heart surgery and BP because I find it very interesting.

I would not worry if you have to be on BP meds. for the rest of your life. It's a very minor thing and offers so much protection for the heart and is much better than allowing the BP to remain uncontrolled.

I have to be very careful not to allow myself to get stressed because even on BP meds. my BP will spike. If I am experiencing something stressful - like right now - wondering why I haven't heard from our pet sitter who was supposed to be here today - I will listen to anti-anxiety/relaxation CDs and that helps a lot. Perhaps you can give that a try. Some of us just don't SHOW that we're anxious or stressed, so it might be wise to check your BP at home regularly and do some meditation, etc. if yours begins to go up.

Hope that helps a little. I'll let you know what Dr. Gillinov has to say about this. Now . . . if you see my pet sitter - who is coming to Maine from Cleveland . . . well, if you see her, I am SOL because she will not get here in time.
Best regards,
Ruth

Mona....photogenic, eh! After our meeting with Dr. Tom, my wife and sister used the word "hunk", whatever that means! He's a good guy..the tops ...Barry on the mtn in NM. .

Hi Mona,
my name is Carol and my freind recommended this sight as i am gonna be going thru the same as you all are or have had done. just want you to no that I will be praying for you as your date of surgery is coming up. I no it is scary and I will be doing the same soon. I am in the final testing stages myself to determine exactly what all is needed as all 5 of my valves are leaky...

Mona,
Since you will have your family with you in Cleveland I thought I'd mention that they have a wonderful FREE shuttle bus service that runs all over the campus. All the buildings, hotels, hospitals, etc. have people stationed in the lobby to help you find the right shuttle bus. They will ask you or your guests where they're going and tell them to sit inside and they will come and get you when the shuttle arrives. The shuttles run every 15 minutes until 11:00 PM. When I was there in January we used them regularly with no problems whatsoever. There are people everywhere whose purpose is to help you - and they are VERY helpful.

There are also some very lovely shops on the first floor of the hospital as well as an Au Bon Pain restaurant. Your family can run downstairs and get a decent meal or bring you snacks. The first floor of the hospital resembles a nice hotel rather than a hospital. I understand there is also a McDonalds, but I didn't look for it.

Remember when making reservations (hotel) to ASK for the patient discount. I'm feeling a little better today so when I get up I will look at my appointment schedule and let you how my appts. have been scheduled pre-surgery. Feel free to email me at any time. Once I get to Cleveland and after my surgery I will give you a blow by blow because, like you, I find details very helpful.
Ruth Howell
FREE

Hi again Mona,

Pretty smile by the way! Yes, for some reason, I WAS a big girl about this surgery. I had fretted and worried for 10 years about my heart murmur but about a year ago, it was apparent that it was TIME to do something.

I investigated the surgical options in Denver and they sounded pretty bad. Then I looked in to CC and my mind was made up. I made my own decision, picked my surgeon and decided I was going to OWN my condition and not let my condition own me. Once CC called and I got my surgical date (the earliest one available), I completely relaxed and didn't feel like I had a worry in the world.

Once in Cleveland, they take over. The appointments go like clockwork and every person you meet is the picture of competence. You have to do what makes you feel good and positive. I didn't find the relaxation tapes to be for me but I did have a lot of music on my iPad that made me happy so that is what I listened to as I sat in pre-op. My husband answered his office e-mail at the same time.. When the nurse asked me my stress level, I had to say zero because I knew I was in the best place for what I needed to have done. I hope you are able to find the same confidence!

I send you my most positive thoughts for a successful experience at CC. Let me know if there is anything else about which you need information. I'd be happy to answer!

Anne Shannon
Evergreen, CO
exqueen@aol.com

Hi Mona,
You should call the scheduling person at CC and ask your questions to be sure. When I received my packet of information they had scheduled me for the following :
My surgery is April 21
The following is scheduled for the 18 & 19th:
Pre-op exam - cardiac clearance
Lots of blood work
Urinalysis
Cat scan & X-rays
Cardiac catheterizaton

On the last day before fsurgery (20th) I am scheduled to meet with the surgeon and the anesthesiologist.

** If you have not had a TEE they will also schedule you for that. I have already had mine done so I'm hoping I won't need another.

If you want more precise details I can send them to you tomorrow when I have my actual schedule in front of me. We plan to arrive at the hotel in Cleveland on April 16th and have a day to settle in then the testing on the 18 & 19. Surgery on the 21. We will spend an additional 4-5 days at the hotel after discharge from the hospital - just to be sure - since I'll be traveling back to Maine.

Please let me know if you have any other questions - or email me directly.
Ruth
ruthjohnhowell@gmail.com

Hi Mona,

I looked to see if I had a copy of my appointment list for the pre-op days, but guess as I threw away as much paper as possible before flying home, that list got thrown. Ricki Shine summed it up really good. I didn't have a TEE either, and only had a pumanary test because I smoked when I was even dumber earlier in my life. Re the Tee, I had one before going to Cleveland and the CD of it was with the stuff Dr Tom reviewed before my apt for surgery was made. A couple things I would do different if I had a do over...try to get to the Rock and Roll Hall of Fame earlier in the day...but then I had to watch the St Pat's Day Parade before going to the Hall of Fame the Day I had to do it..Wow! ..those Cleveland people do have spirit. And, I agree a meal in Little Italy is gonna be good. And, listen to this...the 2nd day after hospital release I went for a walk from the Guest House hotel and ended up in Little Italy. Because I was gone for longer than Ms. Kate expected, I thought I should get her a gift/souvenir in Little Italy since I was there, to minimize the trouble I was going to be in for going as far as I went. I stopped at little art shop where I saw tiles in the window, one which had Ciao Bella on it, something I actually say to Ms. Kate quite a lot. The two ladies at the shop quized me about what I was doing and where I had come from..and when I told 'em..listen to this..one of those ladies offerred to drive me back to hotel, to which I had to say I'd then be in even more trouble...but...Wow...those Cleveland people Rock! Oh, one more thing. In my instructions before I went to Cleveland was to call the medical concierge for a complimentary ride from the airport to my hotel when I arrived. Before I left I called to see if that was available when leaving...and it was...and what a nice limo ride it was. One more thing. When I got to the step down unit, I wasn't offerred the menu thing for ordering myh meals and what I got is what I got. Finally, I asked if they had such a menu as I've seen in other hospitals, and they did, and brought it to me so I could make my own choices, although then I was released before I was able to eat those meals. So, I recommend, if you want to make your own meal selections, ask as soon as you can for the menu order sheets. The food was excellent.....Barry on the Mtn in New Mexico

Hi Mona!

The 1st day at CC you have some tests. I had an EKG, echo, chest x-ray, blood work, and pulmonary tests. I never (at any time) had a TEE so i don't know if they'd do one that day. I also met with a cardiologist that day.

The 2nd day I met with a nurse practitioner who explained the surgery (there was a video about the surgery too that was helpful), my anesthesiologist, and, finally, my surgeon. I was done by 1pm and had planned to go to the Rock & Roll Hall of Fame that afternoon but I was too tired (a pretty constant state before surgery) so I napped. Had a nice dinner in Cleveland's Italian neighborhood that night and reported for surgery at 5:15 the next morning.

My surgery was on a Thursday so I don't know if they do testing on Sundays or if you need to be there on Friday. Now that you're scheduled, you'll soon receive a packet of information for CC which will include your entire schedule.

Hope this helps.
Ricki Shine

Hi Mona,

Just remember CC is busy because it is the best! I had Dr. M with fabulous results. Hang in there! Check out my journal and ask any questions.

In Hawaii right now so not right on top of my mail.

You might want all those relatives to be around when you get home instead of in Cleveland.

Anne Shannon

Mona, search journals under the name "barry stone", and you'll find my journals....Barry

Hi Mona,

Glad you made the contact for Dr. M at Cleveland Clinic. I had to make a few follow-up calls, all well worth it, I think. Between him and Dr. G, I think they are quite possibly the best two docs to do this surgery...in the whole world, and they work with the best team in the whole world. We are so lucky, aren't we. Best to you. Barry on the mtn in NM

Good luck Mona!
I know it is very frustrating.... just hang in there!

Misti Blu Day

Hi Again, Mona,
I'm glad to hear that you're making some scheduling progress. You're dealing with the best heart surgeons anywhere - so they are very booked up. If I were you I'd grab a surgery date as soon as you can so you don't lose it. Yes, I've been waiting three months for my surgery with Dr. Gillinov. It's been a difficult wait, but it has allowed me to adjust to all this and I believe it is well worth the wait to have the very best surgeon.

My fatigue is terrible. Can't do anything and I lie around in bed most of the day so I am not tempted to exert myself. Basically, I am just biding my time right now.

If you need any info. about the Cleveland Clinic, please let me know. My husband and I are staying at the Intercontinental Suites right on campus. They would be ideal if you have family staying as they consist of two very large rooms, efficiency kitchen and 2 baths. 2 beds in bedroom and queen sleeper sofa in living room. They are very lovely - cost is $135. day which is the discounted CC patient rate.

Has anyone told you which leaflet of your mitral valve is leaking? Can it be repaired or replacement?

Wishing you the best. I know what a stressful time this can be, but the extra time will help you to adjust.
Ruth

Mona,
I had a similar situation with Dr. Gillinov's nurse. She was not returning my calls. I kept calling until I got her I complained and told her I expected better from the Cleveland Clinic and reminded her she is dealing with "heart patients." I have no doubt these people are overwhelmed with phone calls, but you should insist on getting attention as this institution prides itself on superior healthcare and patient attention.

You may also want to consider other surgeons at the Cleveland Clinic - like Dr. Gillinov or others. You can ask to be put on a list in case they have a cancellation. I don't know what's going on with Dr. M. but it seems (to me) he is always rushing away for one thing or another (out of the country, etc.) It sounds like he has a somewhat chaotic personal life. But that's just MY opinion.

Another suggestion: Call one of the cardiology nurses who are on call to discuss issues with patients. Ask for their help. Also check the Cleveland Clinic web site online and get in touch with anyone you think will be of help to you. Best of luck.
Ruth Howell

hey mom its your other beautiful eldest daughter deri-lol. just wanted to sign in and let u know u r always in my thoughts. i will be keeping up with ur entries and i know it is going to go well. i also like the idea of this journal and know it will help someone else on their journey. luv u

Hello Mom its your handsome son Jonathan lol. I know this surgery going to go well and I am praying for you every night.I think this Journal is a brilliant idea to share ideas and stories about Heart Valve conditions.Love you