Eleanor posted a note for M that says:
Thank you for the story of your friend, and the advice. She was one lucky lady to have survived and thrived after collapsing. I am glad for her, and her advice. Like the UK, I expect the hospital here in the DC area to be noisy, and I am taking I-pod and ear buds. I also have ear plugs and eye mask in my bag, just in case I have a roommate or other disturbances, to be expected. I wish you the very best, like you the waiting is hard! My surgery is Monday, can't wait for it to be other, since this is really nothing I can do now except prepare. Have been trying sitting down and standing up without using my arms/hands, same with going up and down stairs (I cross my arms over my chest, to not cheat). Wondering how I will open the refrigerator door and the door to the deck, which is harder to open. I will figure out how, or I will "let it be".
Terrie posted a note for M that says:
Hello M! Terrie here. Thank you for posting the lovely photo of your cottage. I can picture both front and back and it is almost as I imagined only missing dancing garden fairies!
I think the closer we get to the actual "event" the harder it is to keep losing. I think I am happy lately just knowing I am not gaining weight but feel the inactivity due to the stenosis is largely to blame.
You know kiddo, there will be plenty of time to lose weight after the surgery as you are going to be doing everything you can to re-hab in all the right ways, yes? I know you have to be thinking about the days ahead and getting home to start the healing process.
What a load off knowing the days of all the images that have passed through our very tired brains are now going to be new and better images of just pushing what lies ahead to being thankful the surgery is "over" and soon you will be headed for home with a new chapter!
I think you will agree that this waiting is the worst!
I am still dealing with dental issues which should be completed by the weekend and then I too will focus on the surgery more and continue to watch what I am eating an drinking.
The fact we aren't getting the exercise or cardio is a big difference when the body is used to being worked. And if you are like me I am drinking a lot of fluids(especially with our temperatures in the 100 degree's this week and higher. I know that has something to do with the weight gain and am trying to be carefull too.
Have you got things at home so you will be ready when you get back?
Will you have Family or Friends on hand for visits or help?
It will be my husband and I for the first 2 weeks home as Gary has stored up vacation just for this. I also have several neighbors for when he goes to
work around in case I need someone to help with the dog(Hunter).
I think it is easy for us to tell each other to try to stay calm and get plenty of rest but it is true. We all need to remain positive and strong to be the best patient showing up for surgery possible.
I think the sense of relief upon completion of our surgeries will be heard and felt "round the world"!
You know I am right, right Ladies???
There are quite a few of us going in fairly close together with me being one of the last.
I really feel good about getting this done now and than you and the "others" for making it easier do to the fact we are all heading forward together.
How are things with your Husband and Kids? I am sure they are encouraging you and keeping you grounded!
When do you have your pre-op?
Going to run off to bed now. Wishing you pleasant dreams and a wonderful nights sleep. Thinking of you and my heart says all will be well!
Ginger posted a note for M that says:
Bless you for posting the picture of your cottage. It looks very homey and cozy!
I think it's great that you are getting together with other people. but please remember for your sake that you need to save up what energy you have for what is to come. We love you too much to think of you not resting. I had to chastise myself and finally set a curfew (which I missed tonight - Jim home late after a case at the hospital) and a minimum sleep per night of 8 hours, if for whatever reason the 8 are interrupted, I catch up. It really has helped me feel better.
One of the things I play when I am praying or meditating, and sometimes just to calm before sleep is a recording of rain with a little thunder in the background. I also have one of ocean waves that I enjoy. I was born close to the shore in New Jersey and that sound is one of my earliest memories. Maybe that is why I find it so comforting.
I understand your concern about your weight gain, and suggest if it is really bothering you that you touch base with one of your doctors. I suspect that you are correct that it is due to your heart, and I don't know if/what can be done about it at this point, but it never hurts to put a call in to those in the know and get some reassurance.
Hope you tomorrow is more relaxing!
Love, hugs, and prayers,
Eleanor posted a note for M that says:
Hello, M. I am right before you, my surgery for AVR is July 14th. Bastille Day, so I am hoping it will be "Liberation Day" for me, too. I am with you on the nerves, tiredness, and now noticing everything that I used to ignore before I knew what "aortic stenosis" meant, and how it applied to me! Sounds like you are doing your best to get ready. I just spoke this morning to a woman who had the same surgery six years ago, and just hearing how well she is doing, and that the surgery was not as bad as she had prepared herself for, it was very comforting. I wish you the same comfort. Best wishes to you.
Guess what you just inherited another heart sister. My name is (Mary) Mia. I have been conversing with Ginger and we are doing the count up. I am on day 6 of the count up to 42. Day 42 both Ginger and I should be back home and healing.
What day is your surgery?
I have been feeling the emotional ups and downs too. Our group of heart brothers and sisters has been very helpful for me to get over these bumps in the road. I am so thankful for that.
Will be remembering all my heart sisters and brothers that have already had their heart surgeries and those that will in the future.
Have a wonderful day! Looking forward to hearing from you.
Ginger posted a note for M that says:
I responded to your migraine remarks on the note you left on my journal. I think you are doing all the right things, but gave you some options you may not have thought about yet.
Have a huge dislike for migraines and certainly empathize with you.
Be well, dear soul! Love, hugs, and prayers,
On July 2, 2014...
Ginger in Oz posted a note for M that says:
Just wanted to let you know that you are in my thoughts, and hope all is going well with you. Glad you have yourself equipped with distracting technology. Never hurts to be armed with what you thing you may like to have.
Hugs and prayers to you,
On June 27, 2014...
Ginger posted a note for M that says:
M, Just saw your remark that people tell you you think too much! Love it! My sisters and I get the same thing all the time! I tell people I love to learn new things, am into puzzles, try to plan and anticipate so I am not caught with my pants down, so to speak.
I had my last boss tell me as we sat at a table at a huge conference that she could hear me slurp. What? I asked. She said, "You are like a big sponge soaking all of this up!" I laughed.
No subject too trite or too deep!! Love to read and love people - but not huge crowds because of the brain injury,
Bless you dear one! Have a great day tomorrow,
On June 27, 2014...
Ginger posted a note for M that says:
M, Love that you are doing meditation. Started doing it after head injury and found about equal results from that or prayer with deep breathing in nose, out mouth. Count 2 during inhale - small pause- Count to 2 during exhale, small pause. Hand on abdomen helps to tell if you are taking deep breaths, which you want! Glad it feels good for you!
So delighted you have new smartphone. There is an app called DO AS ONE. One of my friends who is a counselor introduced it to me. I know it is worldwide, but I do not know if it works on every kind of smartphone. But if you can find it, it's free. You breathe along with it, and you can even see where other people are "in the breathing room" while you are all over the world. I have upon occasion been breathing with people in Europe, Australia, and parts of Africa. Kind of nifty if you can locate it. Mine is a light blue and looks like it has a light blue balloon in the shape of a hot air balloon on it.
M, just really think you have made a lot of progress since you first came on this site, and want to congratulate you for continuing to move forward in the healthiest way you can,
Love and hugs,
On June 27, 2014...
Lynn Ennis posted a note for M that says:
I am 60 and had an AVR in San Francisco last November,so I am now 8 months post op. I was in great health all my life..this came as a complete surprise when i had my annual physical just about a year ago.
I am not often on this site anymore..I check in from time to time…it helped me enormously pre and post.
Meditation was a great tool to use for nerves.The AVR was difficult but doable and as soon as I got home my recovery was swift.It has taken a full year to go thru the process and digest it all. But it is over now, I am healthy, fitter and I do not think about it everyday anymore..I have moved on. You all will as well. Be strong. You will be taken well cared of!
Terrie posted a note for M that says:
Dear "M" Sorry to hear you were having such a bad day yesterday and hope that the planets aligned "over the pond" and this morning found you having coffee or tea in your wonderful cottage garden.
You have the right to feel any way you do. Don't punish yourself for going to places where you end up in a case of "Pity". Heck, join the parade! Just imagine the people faced with what is happening in your life today and know you are not the only one in that parade.
As we are out here joining you and the trick is for us to know when to leave the parade and venture back into a less toxic place mentally as it is only harming that heart we are trying to protect.
Being you and I are near the same age I can identify with the feelings of where your mind is telling you "I worked hard all my life looking forward to retirement and didn't expect to be here"! I have so many things to do, people to meet, places I want to see"! Hey Lady, I am with you! Been there still doing that! So don't berate yourself or apologize for saying what you feel(especially on this site of ours) as pass out the Kleenex, we are there with you. You said in a response to me that you, Ginger and I have a friendship that has formed its way through supporting each other on this site while struggling with these emotions that are sometimes like a speeding locomotive out of control. It is special to have made this connection and one I cherish for it has enabled me to most often flip the switch on the tracks and change the direction towards someplace healthier.
I love and value you my heart-sister!
The road leading us to our surgeries is going to be up and down like this so we will just have to be there for each other to smooth the edges knowing that one day we will be on the other side of this time in our lives where things got so out of grasp. Then we will be telling each other about our re-hab and successes in gaining strength and moving forward with our lives. Moving on to the things we want to do, places we want to see, enjoying retirement for one! Yeh!
I have to tell you that since our surgeries are so close(Ginger, yours and mine) I am looking forward to your journals on the experience and Ginger's as well. I have already told my husband Gary it is important to keep me posted on how you all are doing and stand in for me when I can't post.
I want to remind you of the wonderful people who also have been through their surgeries and are still out there on this site giving us support who can teach us so much from their experiences. Keep reading them as I learn that that makes me spend more time listening and less time worrying!
We are so lucky to have this kind of support and you know we will be there for you before, during and after.
I agree that we need to get together for ice cream/coffee and scones! and I bet if we try hard to make that happen it will!
Thinking of you today and sending a mighty big Hug, prayers and love.
Have to go let Hunter out to chase the cat.
On June 26, 2014...
Ginger posted a note for M that says:
M, There are just days like this...and sometimes it does not take much (or even anything!) to touch them off.
My day, too, felt much like a disaster. Last night the mail brought three letters from the government, each dated 6/20/2014, but arriving 6/25/2014. It was the first I had heard from them since March about the issue they were responding to. Each letter stated that the gov't agency must be answered within 10 days of the date on the letter. (Yeah, piece of cake!) The five days left include a Saturday and a Sunday. Two will require physician involvement, and one will require a lawyer. OR... (There is nearly always an OR, like we will drop your application to...) The due date is this coming Monday. Our post cannot be sent on on Friday and arrive on Monday where they are located - it did take 5 days to reach our box, but only God knows why!
Gee, even God took six days for the Creation and then rested a day! And I am nowhere near God in power, ability, wisdom, etc.
So it is a question of doing the impossible in a period of time that is non-existent.
My first approach was to note they have a 24/7 answering. (I think, this government pays no office personnel after 5PM or on weekends or holidays. Police and firefighters and ambulance emergency crews and emergency call receivers, yes. Otherwise forget it.
Last night I dial the number. Imagine my utter surprise when an answering machine picks up. Leave name, phone number, detailed message, will get back to you tomorrow.
Right now it is "tomorrow" after 5 PM. Do you think I received a call even though I have been here all day? Noooooooooooooooooooooooooo!!!!
I also sent two faxes, one to one of the physicians and one to the lawyer last night so they would have the information in hard copy when they walked into the office. Today I called each office and was told that, yes, the fax had been received and So-and-So was busy right now but would get back to me today. Surprise! No calls from either of them!
A bit of a Dilema, would you not agree?
I checked and both our land line and my cell phone are operative, Hmmm!
What to do? Current plan is to call the magic gov't agency number tomorrow well before five and tell them an extension is required and explain why. I do not plan to ASK. I plan to TELL THEM. Who knows? It could work!?!?!
There was one great piece of news this morning. My cardiologist's office called to tell me that he (they) are absolutely with me all the way on the surgery plans, and appreciate so much my keeping him (them) up to date. I thought, "Wow, what a great way to start the day!" Yes!
Then I remembered the three letters and started the call and wait sequence. I did manage to pay most of the bills I had planned to do yesterday, but had indigestion all day. Who knows why? Bet it had something to do with the three letters, which could only have been timed more poorly if they had arrived on the date of my surgery.
Yes, I am grousing. Yes, my Kleenex box does not have as much in it as when I woke up this morning. But, as Abraham Lincoln said, "This too shall pass away in time." Probably my favorite quote from him outside the Gettysburg Address, which you may not be as familiar with as those of us on this side of the pond. Check it out in your free time. It is short and incredibly moving -- that was when Presidents of the United States were not afraid to show humility...
So I just want you to remember that we all have days/moments like this. One of my favorite Bible verses is from II Timothy 1:7 -- For God has not given us a spirit of fear, but of power and of love and of a strong mind.
There was a time when that could be found on my refrigerator and many other places in the house, as well as posted in my car. It is now emblazoned on my brain, and it's a good thing, because I have needed it a lot lately.
We also have a sign up in our bedroom area that says:
RELAX, GOD'S IN CHARGE
It has been there so long that it is sun-bleached. It is still up in that condition because is is still so true and I do need the reminder more often than I like to admit.
M, would pass you some Kleenex but suspect they would get wet going over the pond!
Remember how very deeply we love you. That and a few spoonfuls of ice cream will hopefully make it better.
My maiden name is Farley, and my sister (I am blessed with a number of them) says the Farley Cha Cha Cha is two steps forward, one step back, two steps forward, one step back. It may not be what most people would advise, but sometimes it comes a bit closer to reality than the more common "One step at a time" -- Shouldn't that be "One step FORWARD at a time"?? Maybe if one reads between the lines, they are saying the same thing.
Well, I allow myself a late curfew but have a mandatory 8 hours of sleep that I do get once I calculated two weeks ago that I was not even getting 7 a night! (Modern science says 7.5 to 9 for an adult human -- add one hour for a teen!)
Try to relax. One thing we each need to do, me too, is to GIVE OURSELVES A BREAK! Sometimes we set standards for ourselves that are simply inhumane! Food for thought.
Hope by now you are drifting off into dreamland. Just got a call from my husband that he is about to scrub in for a case.
Last night I realized that if I wanted to hit my sleep quota, I am sometimes going to need to cross the hall and sleep in my daughter's old room. I was there last night and, yes, my cat was able to find me and wake me up at the appropriate feeding time this morning!
One suggestion, M, try to remove the word "pity" from your vocabulary from now until after surgery. Pick a word that denotes the opposite when you are about to think it or say it, like "Sunshine" or "Smile". Pity is very hard to live with, but sun and smiles are not.
Warm hugs and so many good positive thoughts coming your way.
Vicki D (BAV) posted a note for M that says:
Aw M, don't be hard on yourself, we all have down days. I hope things look brighter tomorrow. Sorry today is a bad day. Take care,
On June 24, 2014...
Ginger posted a note for M that says:
M, So Terrie wrote another chapter for the novel we will have to piece together after this is all over, I see.
Love her smoothie and frozen smoothie ideas..(No bananas for me, trigger migraines from the brain injury, but there are other things!)
And yes, I am a chocoholic and ice cream fan, as I think we have noted before.
I actually had my primary care doctor raise her voice at me on the phone months ago when I had vertigo after 5 minutes riding slowly on our recumbent indoor bike. First time in 32 years she had ever raised her voice to me. I jetted her an e-mail asking her what in the world gave her good reason to do that???? And got an immediate lovely apology. Turned out it was a family of origin thing for her -- but to pop out after 32 years - I nearly hung up but have much too much respect.
And that was before my stenosis was evident!
Cracks me up that Terrie got a green light and I got bawled out! C'est la vie!
I am going to repeat myself, but I think it is important. Choosing a valve is an individual decision for which there is not right or wrong answer. Do not let the process tear you apart or become an issue that increases stress in your life. It is you and your good health, heart included, that is important. There is more than one "right" way.
I highly recommend you delete the spreadsheet and allow yourself to decide like you would between two flavors of your favorite ice creams, since here you cannot put one scoop on top of another! OR Just stop thinking about it for, say, four days. Perhaps allowing it to settle will allow you to realize you feel much more strongly about one than the other wen you allow the subject to rise.
One other piece of information that will just muddy the waters, but IS A FACT.
If you read the heart valve and treatment guide that is downloadable from the Cleveland Clinic website, it states very clearly that tissue valves are now lasting as long as 17 years.
But please, tuck it away out of site, if it comes to mind turn your mind to a different station, do not allow it time. You may wake up from a dream knowing the answer that is best for you. I used to do abstract mathematics before going to be (tough class). My brain would work on the problems at night, and sometimes, to the total disgust of my twin who shared a room with me, I would flip on a light and get the answer onto paper before sleeping again. If I waited until morning, I might have lost it.
M, we want what is best for you and for your heart, and pumping up your stress and anxiety over valve types is not good for you. Please, just for a time, put it to bed or in a closet or box with a "DO NOT OPEN UNTIL____" sign. Your husband will probably be grateful for the reprieve, too!
Love and hugs and ice cream,
On June 24, 2014...
Terrie posted a note for M that says:
Hello M. Terrie here .Funny you should mention the exercise and being frustrated due to the fact you were fit before. I was so frustrated yesterday that I had to make an appt. with my cardiologist to just go over ideas and whether or not I should go back to the stationary bike in the house(which I stopped on May 30 when I had my angiogram. As the stenosis symptoms had progressed I was concerned that I might be pushing it too hard to continue on the bike. I can't walk much here as it is extremely dry and warm early on in the day and I get out of breath easily anytime I exert myself in heat like this.
He said that the bike was good and the 5 miles I had been slowly biking was better than doing nothing So I will get back on that bike!
As for the juggling. If it were me I would concentrate on throwing the tennis balls at the rabbits in your vegetable garden or filling up their holes and tunnels with them as I wouldn't be coordinated enough to juggle!(and with my aim the rabbits would certainly have nothing to fear!
Your garden sounds great! The U.S has areas where the owners of property that are not using empty lots or people near buildings with empty lots get together with their neighbors for different community gardens. It is always good to see land being taken care of and great that people can share and benefit in such a way.
We have gophers in our area which used to be and still is agricultural type soil. Many people and miles of land with almonds, cherries, corn,walnuts,broccoli,some nearby homes with a few goats and cows and a sprinkling of horses here and there. It is a laid back friendly community!
Last year I planted "Bird House "gourds so that I could dry them out and use them for bird houses. I had a hard time with the gophers early on so I bought metal stakes(8 feet high) and placed them 6 ft. apart. I strung wire across the steaks(high enough not to hang my dog or animals) and then took several pots and filled them with good planting soil. Then I added my seeds and when they came up I was able to wind and weave the plants to the side of wires and upwards. As they grew thicker in the vines it was all above the ground of course and the vines were high enough that the gophers lost interest and went to our neighbors yard instead. As the leaves of the gourds grew big and healthy and the flowers from which the actual gourd began to grow it was a beautiful sight to see as It became this wall of hanging gourds which I got to watch throughout the summer and until the gourds were ready to be cut off the vine. Since the plants lined the wooden fence on the far side of the house at the edge of our property it also gave the many birds a place to play and such brilliant green textures of color!
I do the same thing with my sweet peas as it is one of my favorite flowers as well. I used to plant "Stock "flowers which are extremely fragrant and just as colorful with my grandmother as a child. Gardening "M" is also EXERCISE!
As for your Ice Cream Capers! You are not alone. My downfall has always been ice cream as well. So now because of the issues we face I have learned to fill my blender with Ice, 3/4 of a banana/blueberries, strawberries, 1 scoop of protein powder and some "diet soda- 7-up enough to let it
get crushed up into a nice smoothie which tastes and feels like ice cream.
Sometimes I just put it in the freezer with a plastic baggie over the top so it almost freezes to give you the feeling of ice cream. You might try frozen yogurt popsicles too. Just watch the sugar content.
As for your being a "wet blanket" people who really matter to you are aware you are experiencing symptoms that are "hacking "away at your energy right now and that you will return to that energy when this "experience "is turned into a successful "reboot" of where you want to be. Be patient and good to yourself. This is only temporary and it is hard not to compare it to life before the symptoms showed up.
Look forward to what will be! Meditate(I am going to do the same)use music to fill some of the "mental swings "we take.
It is all part of this process and WE Will Get past it. Then By God, we all have to meet one day for Ice Cream!
So I have written another book in your journal. Thinking about you along with my new Buddy Ginger. Hug and a Prayer all round. Good luck with the juggling! Terrie
On June 21, 2014...
Ginger of Oz in the Heartland of the USA posted a note for M that says:
Love the cottage and your lovely garden. So peaceful...it is enticing! Looks like a fabulous place to recuperate!
Your comments: You should be able to find mechanical versus tissue valve info on this site. I think you are looking at a lot of information, and it is hard to sort, even were your spreadsheet three or four dimensional.
I can be totally wrong, I am not an expert at this. The mechanical valve has a huge plus in that it is unlikely to fail on you or need replacement "Someday". The downer on it is taking anti-coagulants and monitoring levels (INR) for the rest of your life. If you get into something like rugby (Don't even think about it!) and are in a scrum, take a dive or a bunch of hits, having anticoagulants in your system could result in bleeding, possibly internally, possibly in your brain. BUT, read some of the posts of people with mechanical valves. Many of them are very active and do well.
As for your comment about if the tissue valve scars TAVR may not be available, I think that is thinking in flying leaps! (No offense intended!) TAVR is new in the world of heart valves. Problems that result from them, things that cannot be done with them now, from the point of view of someone who has spent decades in various kinds of medical research, those quite probably will be totally different in 10 to 15 years.
The constant research on these new things may mean that a way to safely displace or open the scarred tissue to allow for insertion of a new valve via TAVR will be found. Who knows?
There are not just a very few people interested in seeing success and greater safety with TAVR or something like it, nor are only a few researchers coming at the questions. The literature already shows the ingenuity of the medical researchers and the various angles and perspectives one may take that another has not thought of to solve problems.
How long ago was it that TAVR was not even heard of? But do you not think nearly every valve patient and surgeon is interested in seeing something along these lines become successful?
Lower the risks and show good long term outcomes and the lines will be long. Why go through the rest if TAVR will work?
On the other side of the coin, unless I am mistaken, the "AV" in TAVR is Aortic Valve. Not tricuspid, not mitral....But who knows what "they" will come up with next, and when? Not me.
Ask Adam how many times people have asked why (at least in the US) the FDA only allows TAVR in patients who cannot tolerate conventional surgery.
More experience, lower incidence of risks, more positive data on long term outcome, and the potential of broadening the patient population the FDA allows to undergo TAVR could dramatically increase.
I am not trying to persuade you one way or the other. If the only problem I had medically was my heart valve and I was younger and not, say, a pro football player, a mechanical valve would be hard to pass up.
What I am saying is to be careful not to take a scrap of information, particularly on something with which the body of information is much smaller (compared to, for instance, other valve replacement procedures), either out of context or as the gospel truth.
Because in ten years will you be just the same? Neither will the capabilities of the incredible world of the art and science known as medicine.
Step back to 1950 and tell someone in their 70s that there will be a man on the moon. There would be plenty of arguments from both sides. Today it is a moot point. Not only has there been a man on the moon, there have been many, etc. Only extreme skeptics will argue about it.
Choosing a valve type is a personal decision. Medicine is not black and white, but many different shade of gray. There is no right or wrong answer. One must gather what facts appear to be significant (as compared to iotas) and, with consideration of that person alone, come up with what appears to be the best solution. Maybe not 100% perfect choice, but best choice based on what is known now, perhaps with some optimism that the rate of change of medical practice and procedures are only going to improve options down the line of time.
And M, two days ago my daughter, on her way home from work, called to say she was going by a great ice cream place. Did I want something? I told her what my particular taste bud delight was that day, told her one scoop in a bowl (she was driving), or maybe two?
Yes, she brought two!! Did I save one scoop for another day or enjoy it? I Absolutely Enjoyed It!
Please don't beat yourself up on the little pleasures or indulgences. Just walk 10 minutes more the next 3 days or something like that.
God wants us to enjoy Him first and glorify Him. But sometimes we do so by letting the juice of a pear run down our face or some ice cream sit at the edge of our lips!
Terrie posted a note for M that says:
WOW! Ice Cream! Ginger and I will meet you out back in that beautiful cottage garden of yours with 3 spoons and a container of mocha java ice cream!!!!
Only kidding "M" but it did sound good!
But like you we are all going to have to pull together to be as fit and healthy as we can before our surgeries!
YAY! Anthony our Heart-Brother is heading home today! IS that not wonderful! And just think how it will be for us as well being able to say "Going Home today!!?
And...Listen to Meredith who is on a 13 day trip to the Mountains and beaches. So happy for her and she has been such a positive force in her journaling!
By the way, I can see how you would have a great meditation spot or a fine place to sit with a cup of tea and a good book, or listen to music while outdoors! Nice photo. Can we see a photo of the cottage as I am so intrigued and a lot of my block prints lean towards fairies and garden settings so I might be able to get inspired by yours! I will upload a photo of our little garden and the little park across the street where I will be doing my victory laps one day in the not to distant future God and Universe willing!
Well I have to get up from the computer as it is "Dentist" Day. If you want a laugh read last nights post from me in my journal!
Hope you are doing exceptional heart sister and all the other heart people in our community!
Meredith posted a note for M that says:
This is definitely a life-changing operation, and you will be able to travel before you know it. We just left on a 13 day trip to mountains and beaches, roller coasters and raft rides. Less than four months ago I wouldn't have been able to do this.
On June 20, 2014...
Terrie posted a note for M that says:
Good morning "M" In response to your post to me this morning I am going to have to re-write my response again as I submitted it to you and it ended up in my own journal page. Sorry, as I am re-typing it now here!
I am feeling much better, thank you!
I will jump in here on the question you had about depression after the surgery. I want to say that we will just have to see when and if it happened and guess what?!You will need to jump on this site with your heart-brothers and sisters and we will help each other pull out of it? Promise! I know how crippling depression can be at times like these and I like you would rather not deal with the depression with medication if at all possible. Not that those using medication are wrong in doing so. Our problem as I see it today is that we are used to combing exercise or activity to keep things like depression at bay during stressful periods or times of changes that overload our bodies.
For you it is the gym or long walks.
For me there is nothing better than swimming outdoors rain or shine! Nothing like taking a big breath and dropping down under water raising your arms in front of you and pulling yourself through the waster like a fish or dolphin. Letting your mind wander as you pull and kick and glide until your lungs cry out for air and when you surface seeing the steam swirling over the water as it gently soothes every nerve and muscle of your body. No pill on earth has ever compared to that feeling!
and like you it is harmful to our bodies and spirits not to be able to partake in the activities that bring us such balance.
A friend of mine who studied at the Deepak Chopra center and is a Meditation Teacher up in Redding, Ca. once pulled me aside in a time of stress and said" Well you know what the word DISEASE means? I just looked at her and she continued. She laughed and said it is DIS EASE! Abnormal, harmful, lack of ease. When you think about it, it makes sense that It is no small wonder what Depression and Anxiety does in promoting "DISEASE" and Hey Lady there is something we can do about it! the point of disease and the mind's I realized how much control I really do have in deciding what to do with any/all thoughts that lead me back to a state of being unwell. And like you I have the same worry off and on about the depression and its frequency as things have progressed this past year.
Also other than my husband Gary and my dog Hunter I live pretty much alone s I am not a big fan of crowds. Give me a garden to get my hands dirty where I can watch the dragonflies dance and butterflies swirl around overhead with an occasional hummingbird hovering over my shoulder and I have achieved "BLISS"!
Put me in a crowd of people and I am looking for the nearest exit and fresh air(Not panicky, just have my preferences).
As you stated also about the God's hopefully making us new women we will be new and improved Women! And as for Ginger, You and I heading towards our surgeries together just realize we ARE 3 Goddesses! Ha. Ha. I have a good feeling from deep inside where this heart of mine is, that we are all going to be better than ok. It is all the time leading up to the surgery where our beautiful minds are as a constant level of trying to input all the data we are hearing, seeing and reading about that makes it hard not to be overwhelmed and slip into depression. We (all of us out in heart land have to believe that what is ahead will be a new beginning minus the baggage we have had added by this illness. And no matter what the outcome, going in with a strong sense of Unity of knowing you are not alone in this fight for wellness is crucial to your mind body and spirit! As we are learning through these journals(Bless you Adam) let me drive it hoe! You/We are not alone. You and your Husband, friends and family will be here for you before and after your surgery.
I am going to get back into meditation and buying a book by Deepak Chopra suggested by my friend "Journey Into Healing" If it has something to pass along to you that might be helpful I will do so as I am picking it up and will read it over the weekend.
Continue to take walks if you are able! Fresh air is so good for you.
If you can post a photo of your cottage home or area it would be fun to make a carving and print up some Christmas Cards for this year. I am doing my new home for the same reason as I am looking to having this surgery behind me and healing up in time for the Holidays this year.
One more thing, I was at the kitchen counter this morning at 5:00a.m when a dark figure approached my front gate and placed a baggie on one of the pickets. My little motion detector porch light captured my 71 yr. old neighbor and her husband standing by the side of y garage. Tom and Mary, new neighbor whom I have known for only one year now. Tom had a valve replacement 4 years ago. They have been walking while I biked around the small park across the street from both of our homes this past year! He gave up a big grin and I am telling you what he told me as he walked away from the fence with the baggie containing 12 home grown zucchinis "Your are going to be just fine, Honey!!!!
Well "M" I don't know if this made sense but I have been told rambling on this site is permitted! Ha. I don't know if re-typing all this was a good thing, but wanted to respond to you personally as I appreciated your response. The original post meant to go to you is in my journal pages today, !
You have a good day and keep in touch!
The decision on what kind of valve is personal so you will have to do your own research & soul searching & talk to your doctors. As for lifestyle change on mechanical valve, it refers to the blood thinner. There foods that will interfere w/ Coumadin, no green tea, grapefruit, some activities are high risk of internal bleeding & not recommended. You can google Coumadin & you will find lots of info. Also, some people find their safe INR level easily, some has a lot of trouble. If you read Tony's posts this week, he is not going home yet bc his INR level hasn't come up.
I also read a post from a young man who had a bovine valve at 16, play college basketball, and now 23 & put in another bovine valve. So you can see the choice is really personal.
Good luck w/ your decision. There is no right answer. In fact, I would say we need new research for a better choice.
Renee Lingo posted a note for M that says:
Hi, when I saw your operation date, it reminded me that I had my surgery on July 17, 2000, when I was 49. My regurg aortic valve was replaced with Carpentier Edwards bovine valve.
That was 14 years ago. At the time I was starting to have lots of back pain, that was in May. They wanted to operate right away but I told them I wanted to wait until July because I had tickets to Riverdance on July 15!!! Worried if something went wrong and I would miss it!!!!! I went! I'm still here!
Ginger (in the Land of Oz) posted a note for M that says:
Blessings to you! Sorry I am long in getting back. My husband was on call all weekend and call they did. Saw very little of him.
If this seems a bit repetitive or disjointed, it's because it is. I went back to elaborate on some things and am sure you will find duplicate issues here.
Want to address your flying question before I forget. About 15 years ago my husband needed a pretty intricate surgery. Because of a related condition he had, he recommended going to one of two places in the US, but after more discussion admitted that the closer one (and both were plenty far) was not the one he would choose. Long to short, in spite of my problems flying due to my brain injury, we flew, It had to be at least 4 hours. After he was discharged from the hospital, we stayed in the city for a few more days. So my best guestimate is that we few back to Kansas about 5 days after surgery. My husband was uncomfortable, but had pain meds that helped.
When we realized that my heart valve surgery was going to be out of date, I assumed we would drive. My husband is a very smooth driver and loves to be behind the wheel. Don't remember how it came up, but he said - We are NOT driving, we are flying. That is too long of a trip and you would be much to uncomfortable to be in a car for most of two days. Okay! So we will fly.
And we plan to do very much the same thing we did before. Have a hotel room not too far, have the surgery with him with me as much as he can tolerate it! (Yes, I am laughing!) He is a surgeon, after all! Then spend a few days at the hotel before flying home. Then one is a bit steadier, one is close to hospital in first few days should need arise, and the flight is not as draining. Should be interesting.
I think if you really plan to fly a long way, it would be prudent to ask your physician for a recommendation.
So flight and security. There is always some reason behind our actions. I believe mine make sense considering what I have been through. I just needed to feel safe when very weak and left alone for prolonged periods of time, not 4 to 8 hours, but several to many days.
It was a difficult period for me because I had been very active, and an Ordained Elder in my Church, worked with many people protecting human subjects in medical research, was speaking on a national level, going to conferences, and flying to other states to help improve their human subjects research protections.
Then a very bad flare up of brain injury caused me to have to resign from my work, and along came a ridiculous number of other health problems and surgeries that left me quite isolated.
Do not be overwhelmed by my security concerns. Our neighborhood has changed since we moved here 35 years ago (Surprise!) More neighbors rent than own. But I had a serious incident that resulted in my being very vigilant in terms of safety. I'm alive to talk about it, and am grateful.
I really did fine and had no problems for over 30 years, as we were a young couple, then had children who grew up and moved out. It was only after the incident that I started to get concerned. My husband is gone a lot of the time. I am quite independent and had no problem with that. But then I had multiple major surgeries in the span of six months, and I was weaker from surgery , recovery, surgery, recovery, etc., than I had ever been in my life.
My mobility was pathetic and my lifting weight limit was 5 pounds. I was not as strong as I had been the vast majority of my life, and I was very much aware of it. And that added to the prior incident made me fear the long times when it was just the cat and I. Sometimes it would be days before I saw anyone for more than 10 to 15 minutes. I am a people person. I love people! And I became desperately lonely. It was a huge change and it frightened me.
In addition, I was falling 2 to 3 times a day, terrible, and I needed to be able to get help.
And my Master Computer Jedi son (yup, smiling again), worked his magic for a security company. So he had someone come and check the old system and update it. We actually saved money on the deal, because while there was some expense involved, our homeowner's insurance dropped quite a bit.
M, Your cottage and area sound wonderful, My heritage is half Welsh, 1/4 Scottish, and 1/4 English, so I suspect some of my forefathers were in your area from time to time. But the first to come to what is now the US came in the 1600s, so we have been here a while!
Yes, and several fought in the Revolutionary War, and not for the British! Then William Penn and many of his followers came to the New World because of religious persecution sometime later than our earliest arriving ancestors. And I am a direct descendant of William Penn.
I have only been to the UK once, and it was a long time ago. My daughter spent a splendid semester in Australia during college and almost married a gent from there. But I must say that we are delighted she and her little family (see my photos) live only 3.5 miles away!
If your eyes are not weary by now, I have no idea why.
You remain in our prayers and our hearts (even if some of the function is a bit bizarre!). Keep your chin up and a smile on your face - sometimes easier said than done - and stay in touch. We are here for you, one bug family with the common goal of encouraging and supporting one another as we make our journeys to improved health.
Hugs and love,
On June 17, 2014...
Terrie posted a note for M that says:
Hello "M" Terrie here. It sounds like you are doing well-Ready with meditation and music! I plan on doing the music and book route. Music will make the time go easier. I am really happy that your date is coming up as it makes it easier not to have a long wait. I am down to 65 days.
It sounds so quaint to be living in a cottage in England. I see travel shows that cover areas in the UK frequently and they all seem incredibly beautiful and I can see why someone would want to live there.
I would imagine it a perfect spot to recover from surgery and get into a good walking program.
And having such a large family you will have a great support system too.
I hope the days go by quickly and you and your husband enjoy this time to the fullest! Stay strong and be happy!
On June 15, 2014...
Ginger (Still in Oz, but will leave and return - yes by air - yes taking monitor with me and telling them ahead of trip!) posted a note for M that says:
To M and Terrie,
We are getting close when we share each other's pages, but I can't imagine anyone will have a problem with it -- might confuse some, but Terrie explained it all below!
Terrie -- The Pepto Bismal is a classic. That sorry should be retold over and over again. And yes, I have actually had times not long after surgery when I have been home alone for well more than 24 hours. And it scared me. And I talked to my family.
(There are some solutions, and I have one I think you should seriously consider -- will get to it.)
First of all, they were shocked (yup, everyone here that evening because Grand not born yet) when I walked out holding onto the wall in my flannels and stated that I realize we have lived in this house since 1978 and I have always felt pretty safe in it. Jim immediately changes keys and installs deadbolts, which make a difference. BUT, despite that, I was now afraid in my own home.
Gasps and shock! I said that I was now weaker than I had ever been since infancy. My mobility was currently greatly reduced. I had a five pound weight limit. Yes, we installed a security system in the house around the time the kids were old enough to be home for a few hours in the day without a parent. DID NOT MATTER.
I was still afraid! Because even if I knew someone came in and even if I could make a call, I was unable to defend myself in any way, let alone open a window and escape! I was a sitting duck. The police would never get there in time.
I had already spent 20 minutes trying to figure my way out of a dry bathtub I had fallen into and no one came by for hours. I had also spent 20 minutes sitting in the bathroom once finished with why I went in because my legs had weakened and I had a 5 pound weight limit, and there was nothing to hold onto anyway...
And I was weak enough that I knew if I got onto the floor and crawled to the bed, I would not be able to get into it. (I could have pulled covers down to the floor, but that is not the best situation post-op.)
I did manage finally to get up and within hours of Jim coming home we had a raised toilet seat. They are not expensive. There is a kind that just fits into current toilet, no handles or such, but boosts a person up so less leg strength is required. I highly recommend you get one before surgery even though I have NEVER seen it mentioned on this site. And especially if there is any possibility of your undergoing a full sternotomy. Terrie???
The family had the security company come in and check some areas I was concerned about. In the process we learned that even though they were wired in, both smoke detectors and the carbon monoxide detector (all installed by a different national security company) were not working. In addition, we had added a cellular phone to the system when they became available, because there was a notorious serial killer in the area (Yup!) who cut telephone wires on his way in. That phone was found, during the inspection, to be disconnected. As far as they could tell (and it is seriously well hidden) no one had touched it after the "installation", but the first company failed to connect it -so obviously they also failed to test it, etc.
Inspection results: Now had working smoke and carbon monoxide detectors and cell phone if lines cut. Also was reassured that the areas in the basement (windows) that I was concerned about were extremely well wired and even breaking the window would cut the breaker and set off the line. (I was both weak and had some vertigo at the time, so had not been down the stairs in over a year!)
Also, they recommended installing a particular kind of glass breaker alarm that would pick up sound of glass breaking in the part of the main floor that is used the most. I had asked about an outside alarm that would alert neighbors, if wanted. That could be done, they crawled around to see about wiring, decided on the best location, and we asked for decibal information so we could talk to police, fire dept, and nome owners assn.
Last thing, they now make key fobs like one has to click their car door open. The little fob can set the alarm, shut off the alarm, and set the alarm so motion detectors were bypassed. (I could be in the house and wander out of my bedroom without setting the entire thing off.) We got two.
Results: Now have a fully functioning system with outside alarm that can be bypassed that actually covers the entire interior of our little 3 bedroom ranch with basement that we have lived in for 35 years. And my husband got some lanyards over at the craft store and hung my alarm fob on one. I can wear it around or park it on my bedpost while sleeping. I use it all the time. Someone at front door. If my weight limit does not allow opening it, I can call out to ask who it is. If ambulatory and it is something to sign for, meds delivery, mailman, I unlock door and alarm and tell them to push door open. I can push it shut with whole body, turn locks, use alarm fob, and am safe and sound. Love it.
Last safety feature, Terrie a must have for you with Gary gone. There are all kinds of alerts with buttons, etc., out there. When I was finally able after 5 months to get up and go sit in recliner, how do I let someone know if I have fallen. Think back to dry tub and stranded toilet incidents.
First company we tried known nationally, unit very expensive, button only works within a certain distance from where ever unit is placed in home. Do not mess with one of those. You pay for far more than what you get.
Second go round when I wanted to walk to mailbox when not too slick, etc. Too far and too many walls between unit, and it cost a fortune a month.
Answer: Company (I get no gratuities!) name is Great Call and 5 Star. What to get: No $350 refundable deposit for main unit, just a $35 activation fee! Entire unit is about 1/5 the size and much lighter than my smart phone. There are other companies out there - so watch and remember - you want to get what you want and only pay for it,
It had a clip for a purse or belt or waistband. Tried then all, mine is on a second lanyard. Charge at bedside for short time every other day. So it is always active and within reach. I wear it when out and around, even if have cell phone with me.
What does it do? For just over $18 a month (compared to $39.95 for the previous unit) you have a very nifty little gadget. Inside it has GPS, microphone, speaker, two buttons. In the US the GPS covers almost everywhere.. (Look online and compare it to the Verizon map. They are close to identical.) So I can be driving around in my car, suddenly have some vertigo come on. pull into a nearby parking space and call.
WHO ANSWERS? If push lightly, trained personnel will answer shortly, They know who you are, have a list of whatever you give them - problems - names and numbers of family, doctors, work, etc. - and most visited locations (like grocery store and church.) They ask if you are okay, you explain situation, and they can do a bunch of things for you. They can patch in a three way call so they are on the line but so is your doctor or husband or neighbor. They can give you advice. They can call for help (like 911 or your son to help you out of the bathtub.)
They will stay as long as you want them, and you can even call them if you are about to walk out to the car in the dark and want company. They will make sure you are safely locked in your car and it starts and, if you want, even stay until you are home and locked into your house. If you are bothered, they know your exact location, license tag #, and can call police for help while you are on the line.
OR you can hold button down 5 seconds and it automatically calls 911.You can talk to 911, get all the help you need, and you can bet 5 Star is helping with the situation.
OR you are entering a church for a wedding. I want to turn off my unit by pushing the other button. Inside church but not seated I push button once. I tell them I am at a church and am turning the unit off for a wedding. They remind me to please turn it back on when the wedding is over. End of call. Then back on after service.
M, I know they have similar things in the UK. Just be careful to evaluate. One company in the UK even has a unit that will detect a fall. Not in US yet. But I cannot tell you the peace of mind I get for just over $18 a month.
Last week I am over at my Granddaughter's to visit (I do not babysit - I visit!) and my firefighting son-in-law sees it hanging on my shirt top. Does it work here he asks, doubtfully? I push button. I am visiting my son - You are at 3592 E Export Drive (not real address) and I say Yes! S-i-L impressed. How can we help? I just wanted to check the contact from here in case my grandbaby needs medical attention while I am here. So every one is fine right now? Yes, we are fine. Thanks for the quick response. They politely sign off. My SON-in-LAW's eyebrows go up. WOW!
Now I have an attachment in my car for my grandbaby's car seat for safety reasons, but her protective dad was impressed. Knocked his socks off!
Sorry this is so long, but Terrie, with Gary out and you alone, this is your safety line. It is the one reason why, whether my family comes through for me or not, I know if I go into AFib or something I can get help. Just wear it in house until settle into bed, and put it back on before getting up, even to bathroom at night. I put it in exactly the same place every night and even if groggy, it is easily within reach and I can use it.
Gee I love you guys! Heart Sisters! BTW, my son is a computer person at least two steps above genius. He works high tech for a national security company. He oversaw the revamping of our system once we had decided what we thought we needed. He was never here. He continued to work. But he monitored it. And made sure we knew that they should test every bit of it before turning it over to us. Luxury - but uncommon. He cares. Yes he is busy and cannot get away, but he does care.
Your family cares, too, M, and they will do what you need to feel safe. If you have some ideas that will help them, write them down and go for them. Even Susie gets groceries once a week. Jenny stops on Wed afternoon to check and chat. etc.
Terrie posted a note for M that says:
Hello "M" It is 3:35 p.m. here in sunny California! My Minestrone soup is about done. I don't know if you caught my apologies from this morning's post.
Anyway first off. I want to applaud you for starting weights at the age you did. It seems the older I get the more surprised I am to hear how active so many people are especially since developing the aortic stenosis.
So hats off to you! I was just trying to figure out if using free weights at a small weight now would be safe if I don't go at it like a teenager! I watch videos on new health ideas for us older folks and have decided that I want to incorporate free weights at some time to strengthen arms.
It is funny but my husband and I were a member of a gym up until two years ago when I began a very low shortness of breath upon exertion. I used to trade off walking on the treadmill and swimming laps early in the morning once we moved further south for my husbands job change. I would be having bought of the breathing coming after doing about 20 laps of combination breast stroke(my favorite) and freestyle. It got me worried to the point where I stopped swimming all together due to getting depressed and frustrated as I was new to the heart thing and wasn't sure what was safe.
"M" I have to say this before I move on, I really believe it is normal for anyone to go through feelings of depression, helplessness and of course crying! It is WHERE we let these energies take us that can do us more harm than good so this is something to think about and try to work on so we can get ourselves to a place that is more positive and healthy for our bodies while we take the next steps. Believe that you and I and the others here in our community are all going to have HEALTHY HEARTS after our surgeries. Just the way you showed the "blokes" a dose of Surprise and a bit of admiration" for the weight lifting you will be back to following a program and guidelines that will get you feeling "back in the game of life" instead of where we are now.
I want to tell you that I intend to keep after you to reduce any negative energy and doubts that have settled themselves upon those shoulders of yours. Please give yourself permission to feel what you think you must to push past the feelings that aren't doing you any favors!
I can see a day ahead when I am writing you and seeing who was able to walk the furthest or how many laps you are able to do of a gentle swim!
Then, of course I will get you to tell me how to begin a good weight training program when we won't be out of breath or off balance, OK?
Hell, I might just have to have a HEART lemonade stand in my neighborhood to send y'all tickets to sunny California for a walk in my park across the street from our house!
And of course, that goes for the biking in the park-beautiful trees, birds and friendly neighbors to talk to around the walking path!
That goes for Ginger as well! You were right. She especially has a steeper hill to climb than most but that is what we are all here to help with, GOT IT?
And yes, Meredith mentioned leg cramps and massages!!!!! I am all for it where do I sign up!!!! Great advice! And listen to what Meredith and her experiences can tell you!
By the way I don't know if there is a Facebook page for heart-brothers & Sisters. I actually wrote to Ginger one day and started calling her my Heart Sister and of course had to ad the "Blokes"(How I love that word!) so started referring to the Heart-Brothers and that is what we have been calling each other ever since we started communicating. I do not do Facebook. I stay away from go ogling and Web MD and other pages that go into way too much detail and show way too many videos more than my brain wants to deal with right now. I do however have sites that my Healthcare coverage steers me towards that have the procedures and information pertaining to my individual care. And our coverage gives us access online to ask questions or discuss matters with our Dr.s and surgeons so as to help keep us from getting frightened or confused.
I am glad that your symptoms are not worse and feel glad for the same as it is pretty much the shortness of breath, fatigue upon exertion for me too..
Since we have a set date we need to make sue we stay on track to be in the best mental health as well as physical health for our job which is to hand over a positive here I am now lets get on with it "Patient" to our Surgeons. NO
DOUBTS! We can do this! Listen to all of the others words of experience backing us up and reaching out to one another my Heart Sister!
I would like your son. I love words too. I was in charge of a book dept. at the age of 50 where I was in a large warehouse filled with many shelves of books for distribution. We had the New York times best sellers in hardback, trade, fiction and non-fiction as well as
any other type of book one would want to read. I was in heaven as I had every opportunity to read, read, read!
I would imagine your son might be taking over your journals when you are going to surgery, etc. I hope so we will be able to continue our support and know how your are doing. I love that someone who loves words will be there to "fill in" for you.
Are you aware of where your surgery will be preformed? Is it far from you.
Mine is 2 hrs. away so I suppose it isn't too bad compared with some.
My Surgeon is Italian and I have been dreaming of him meeting me post-op singing Pavarotti or Bocchelli! God forbid as if I am out of it I will join in and probably get kicked out of ICU! I am one of those who doesn't know or understand Italian but likes to pretend I know what the words are by belting out some kind of sound!!!!!!! Yes, thank your lucky stars I will not be your room-mate at the hospital, chuckle. No time to wake up in stitches, literally!
So, I will leave you tonight with one other thought. Be grateful that you have people who love you and will help you along the way forward.
By the way, My people originally come from some place called Cootehill, Cavan County; Ireland! Where are you in the UK?
Ginger (in the Land of Oz - my sister says I am the Wizard, but not a fake, I have POWER!) makes me laugh! posted a note for M that says:
M, Just quick and I will be back, but I was having a very hard day yesterday and it certainly shows in my post. I adore my family, and like every person on this Earth they are not perfect and neither am I. But I had a long talk with my sisters yesterday (e-mail with 28 linking threads!) and they made some suggestions (Creative and intelligent = Great solutions) that I believe will be a big help. Note that except for the 25 years with the brain injury, all the rest of my ridiculous medical history including all of the surgeries has been in the last 4 years.
And on the TAVR, I am not inoperable. My family doctor spent some time talking with my general surgeon, and both believe that with proper precautions, as have been used for me in the past, I will have no trouble with a "typical" valve replacement. Of course, that is for the valve surgeon and anesthesia to eventually weigh in on. But TAVR is very new and (having worked in medical research for years) I am very aware of what is not yet known about it and have concerns about the level of risk. So my hope is to get a tissue valve by open procedure - minimally invasive if possible, and if I need replacement in 10 or 15 years, pray that it can be successfully replaced with TAVR. By then the techniques should be standardized, the risks reduced, and the long term outcome known. Tons of research is in process and much more will be known on a number of aspects of TAVR in 10 years. And I do know that there has already been replacement of tissue valves using TAVR, so it's something that could be possible for both Terrie and I should that day come for either/both of us.
But in protecting patients in medical research, I know a ton about weighing benefits and risks, and TAVR is not something I care to have anything to do with at this point. I believe that under the current FDA guidelines I would not fall into eligibility for TAVR, although the envelope is certainly being pushed. But it is my body, and I believe that in the right hands at the right place with experience and skills and knowledge of the brain during cardiac surgery, I will fare fine with an open replacement. But time will tell.
My cardiologist has been very specific with respect to choosing a surgeon, a valve clinic, no anticoagulation, and a variety of other things. He is extremely intelligent, through, up-to-date, and he communicates so clearly and answers questions even down to drawing diagrams and/or algorhythms. He sent me a letter this past week to tell me, among other things, that he "completely agrees with the decisions you [I] have made." That filled me with reassurance, and that he made time to actually post a letter to let me know makes me even more grateful.
But I will tell you that I am not the only person in this family to have gone through some major medical events. My husband and I have been told many times well before news of this heart issue went beyond the two of us and my physicians that we should write a book. We laugh, because even if we only hit the highlights, people would toss it down saying it Had to be FICTION! All of THAT could not happen to anyone. Well, we did not choose it, but God has taken us through it all. I'm sure glad I did not know what else we were facing with the first big surgery in 1993 (not one of mine). You get the idea. Faith, prayers, love, and a sense of humor when not in severe pain are so important. To mean, Leaning on God and the prayers of family and friends are what I believe have us still going.
On June 15, 2014...
Terrie posted a note for M that says:
Sorry for replying to your guestbook to Ginger-Had a bad night last night and after reading her post to you guess I forgot who I was addressing. I ended up with a post to Ginger on your space. After reading Gingers response from the 14th to you I got a bit "lost" So sorry. Will be more careful in the future. Terrie
On June 15, 2014...
Terrie posted a note for M that says:
Hello Ginger. Read your posting to "M" and wanted to add my thoughts on "help" during this time of our lives.
I got up at 2:00 a.m. to go to the restroom telling my husband that I was getting up and wasn't feeling "right" so please listen for me a few minutes as I was weak and a little off balance having come from being asleep.
Time went by and I was a little shaky so yelled out to see if he would keep an eye on me gong down the hallway.
Called again. Again. Again and once more growing more agitated knowing the neighbors might get worried and call either the police or an ambulance.
And all would have to wake my husband from a deep snoring sleep. Probably leaving me on the floor of the bathroom while running into the bedroom and trying to pry him awake.
Wasn't really happy after making it back to bed.
By the time I hit the doorway I was angry creating chest pressure and I yelled his name where upon the man woke with a start like the house was on fire. I am not proud to say I aimed a bottle of pepto bismol at him and got myself back into bed and calmed myself down. (I am a good aim and hit his pillow direct hit) Made me feel better and helped me calm down so I think the theatrics was worth it!
My point being, we can be in a home with someone 5 ft. away and still get no help!!!! This has happened at least 6 times in the past 3 months as my symptoms have progressed to a point where I am anxious off and on and expecting some kind----any kind of response to feel a wee bit safer. I went to bed with the telephone propped up next to my pillow as the heaviness in my chest was hanging around and I didn't want to interfere with "Sleeping Beauties Beauty Sleep". Ah yes, it is Father's Day today" and I am making the Man Homemade Minestrone Soup.
Happy Father's Day to all of you out there!
Needless to say a long Nap is in order for two people in this household today!
I don't have family to step up and help out so I can't even get irritated by any lack of response! I think as we get older the Kids in the family are growing up and have their own families to deal with and I would venture to guess that you will get the help when the time comes.
The waiting period from diagnosis to surgery is hard on both us and our families and friends who are not going through the stages but only have what we communicate to work with. I think for myself I will make it clearer what I would like from anyone who is involved in this upcoming surgery with me so that there is no confusion and we are all ready. (I actually hired the young girl next door to watch the dog and cat while I/we are not home so I will receive some kind of care when I get home to assure I am ok. I trust and enjoy the girl's company and we have become good neighbors so it is comfortable for me and lightened the load as to what I will be doing if I do need something and my husband isn't around.
You have had and continue to have so many more health issues than most that it has to be difficult for you to know just when you really want or need help, maybe?
I hope before you have your surgery you will have all the help you could possibly need or want...
It has to be hard with a Husband who has so many other responsibilities and a lot of time away from home. I understand as my husband travels with his job and is away from home a couple of nights a week on and off and I never know when he will be going or coming until the last minute which makes me totally alone many days and nights but for a neighbor or two checking in once in awhile.
So I am doing my best to stay positive and count down the clock /days until surgery whereby I won't have to depend on others so much.
67 days as of today....
I hope you will be in a position to get yours done soon too so that we can all heal together!
So as you told "M" Ginger, keep your head up and give us a smile because things will get better.
Have to go stir the soup! You take care.
On June 14, 2014...
Ginger (in the Land of Oz - Yellow Brick Road, etc) posted a note for M that says:
M, Had to laugh with Terrie! She says she isn't getting enough exercise -- but Terrie we caught you running below! Good info and a hoot to read!
M, am clueless about surgery because with brain injury situation there is a lot of caution seems to be going on.
My family's reaction: Oh? Sick again or still sick??? Yawn... I had a traumatic brain injury 25 years ago that still flares up, yes they are tired of that. Can't see it so how could it be so bad??? Then in late 2010 had very bad long relapse of head injury that put me back in my bed in the dark for 5 months. So she's still in bed, huh? Then two days after starting to feel okay and getting a Go, my throat decided to act like it was on fire.Not Strep. Not this. Not that. Saw too many doctors who were unable to diagnose. Throat started to swell shut during the night once in a while and I would wake up gagging. Was living on popsicles. Four months later a diagnosis -- I needed to have my tonsils out, or put up with fire in throat and occasional swelling shut. High risk, very bloody, very painful - oh not for 1 or 2 days, for 10 to 14 days you will be on pain meds every 2 hours around the clock. First general anesthesia at age 58 and no one new how I would come out of it because of the head injury. Smart doc got several together, researched it, set up a protocol for use for me any time need general anesthesia to protect my brain. Problem was the 10 to 14 days were just not enough; I had complications and it went on for more than 5 weeks. Hey, anybody seen mom when she is not in pajamas? Yawn... Good thing they put the general anesthesia protocol together because while better by the beginning of October, diagnosed with breast cancer in Jan 2012. Mom died of it young, so bilateral with reconstruction. (Don't want to go through THAT again!) Got drains out. Healing so can finish reconstruction...when abdominal pain... in evening. Husband is surgeon out checking patients. Call, time to check me, too? Next morning better until turned to flush and found the Red Sea. Passed a kidney stone. Scheduled for surgery in just over two weeks and x rays show huge stone in each kidney. Discussion between urologist and reconstructive surgeon. Must be no less than 14 days before next surgery or will have to wait and do stone 6-7 months later. Oh, mom has another problem? Yawn... Blessed son-in-law who is EMT and firefighter took me to hospital and helped check me in. No one else available. Hmmmm. But adore that Jeremiah. Done on Friday end of afternoon. In major pain. Tell my husband I want to go home. Nurses want to keep doctor's wife and take care of her. I wanted to be close to the bathroom, and the room I was in was practically an auditorium with small bathroom in far corner. Constant need to go. Home it is! Miserable weekend. Call Dr on M AM. Get Appt. Actually drive myself over, with a pad to contain "spills". No one could get free to give me ride. This is now feeling like a heck of a lot more than a yawn. I call it NEGLECT. I am told that I am too demanding. Gee, is it being demanding to ask for a ride to dr 60 hours after surgery was done on both kidneys? Maybe I am asking too much??? Too bad cabs are so unavailable in our city. Airport is on opposite side, so if want a ride they don't even always show if schedule for day ahead. Believe me, I have missed appointments that way! I get back out to my car and burst into tears. Had to get past that before driving home. No comment from anyone regarding any of that after it occurred. M, are you catching my drift??? And I still had one more blasted surgery to go for reconstruction in 2 weeks. My husband did take me in am and take me home afterwards. Decided I would be fine, made sure phone was in reach, bye! What a surprise!
Now, why are my friends concerned that I will not get help from my family after heart surgery??? My family is up in arms that such a suggestion might be made! Haven't they always been there for me and helped me out and taken good care of me? Do they want an answer???? I am afraid to go home. Family does not understand, because ... they have such a good track record???
So maybe your family is normal and mine is normal, but if so, I would go for overly protective or hovering any day!!!
I know we will get by. I just do not want my friends, almost all of whom work and the rest don't have the stamina to care for a post-op patient of any kind, let alone heart valve replacement.
I have a lot of praying friends whom I am so grateful for. I am putting this issue on the prayer list when they finally schedule my surgery. My husband is planning to come. (Has to be done out of state because of brain issue.)
Alas... I am not usually this bad, but it has been a hard day and my knight in shining armor, which he actually was for over a week during the cancer scare, is out removing possibly three appendices. I am not waiting up.
Severe thunderstorms make phone beep every few minutes. Should make for great sleeping.
So much love sent your way!
oh, no anticoagulants for patient with brain injury who sometimes falls. A tissue valve had better fit! Another prayer request! ;o)
Terrie posted a note for M that says:
Good afternoon "M" Terrie here from sunny California. Was warm here today so was up doing errands early to avoid the heat.
I had to get my eye glasses returned as they put my new prescription for reading glasses incorrectly and when I put them on could only see like I was staring through coke bottle glasses. Nothing but shadows! This was great as they rushed to get them done in time for my angiogram so I would be able to read for the six hours I couldn't move afterwards. Fun getting to stare at walls and ceiling with no chance to read this book I had bought earlier in the day before procedure, chuckle.
Well I made sure to keep the Nurses entertained and vice versa. They were really happy to scoot my "Happy ---" out in the wheelchair and into our truck!
You Lift weights? You made a comment about your age and entertaining the "blokes" so I am wondering how old you are in case you want to share. I think I mentioned I am 65 years old as of May. Great! Retirement age and new parts for my heart!
I think that you are keeping in shape with your weight lifting will be to your advantage even if you have had to stop due to this current "stage" of your life.
I used to swim laps regularly up until the last two years so thinking I still have an advantage with the activity in shoulders and upper body strength compared to some. The last two years I put off the swimming due to a move that took me further South where I didn't know anyone to go with. With the onset of some symptoms I pretty much let myself talk my way away from going into the water and now I wish I had kept it up. Anyway, I began biking outdoors at a regular pace so as not to do too much cardio rather just maintain a good 30 minutes to an hour schedule. I pretty much have been doing 5 miles a day outdoors up until February of this year as many times a week as possible.
Now my symptoms have stepped up to more shortness of breath upon exertion so I have toned it down to getting on and off using my head not to push too far.
How are your symptoms of late?
Are your anxious moments getting lesser now that you have had a little time to let your mind adjust to all the information you are getting? I really hope so. It sounds like it a little. If not, you know we are all here to listen and you will be encouraged by knowing just how many people are going and have gone in the same direction.
I am happy your date of July 17 is not far off and that I will be going to surgery not long after you. remember Aug. 20th. and I am going to be here for you in any way I can so let me know if there is anything you want to talk about. I am online at 2:30a.m. every morning when I get up with Gary (husband)to get him out the door for work! I eventually head back to bed for a couple of hours more sleep and then check in on the computer in the early morning to see how our community is doing!
I loved the part of your posting where you mentioned your husbands skills at laundry and just thought how easy it is to correct misadventures by turning ones husbands underwear PINK.
There is always a way to get even, chuckle.
So, your son doesn't think 3 books are enough? Take it you are an avid reader?
What do you like to read? I too, love to read. I love a good mystery and anything to do with landscaping, printmaking.
We will be having time to do that after surgery in between keeping up on our journals to help each other and others in this "adventure" we are taking!
How are your symptoms doing of late?
I see you have mentioned your choice in a mechanical valve. We are lucky we have a choice at this stage of our lives,
are we not? At my consult I held a mechanical valve and tissue valve and could not believe how beautiful they looked to me! I think you are a lot younger than I and had I been younger I might have gone with the mechanical valve but chose to go with a Bovine. The main reason Is I don't want to have to use the blood thinners for the rest of my life. I also have type 2 diabetes which I have had since 1998. Just recently had to start insulin(last 2 years) so I figured between keeping good track of the diabetes and working hard on new eating/diet changes that will better my health now and after surgery I didn't want to have to deal with the blood thinners as well. Just my thoughts as we know that there is always a chance the tissue valve might not fit in which they would go to the mechanical. So, whatever may end up taking the place of my Aortic Valve, hallelujah!!! Thank God there is something to take its place!!!!! Am I Right??
Besides I want to see the look on someone's face when I wake up in post-op MOOING! (Not like that hasn't happened before to them I am sure!
My Sister-in-law married a man with the last name HOLSTEIN so now I will be able to go in on Ancestry. com and look up my cow relative...Life just keeps getting better!!!
Have you got lists of things to get done before surgery(one being do your own laundry before you pack, ha!)
I am trying to make sure I have the house in order so I can get around easily and have a pathway for "Hunter" our spaniel to get outside to chase the cat who will be chasing the birds!
I am making sure the dog/cat food are in containers I will be able to get to easily and things are "reachable" since after my husband goes back to work I will be on my own. I have a few new neighbors who have already volunteered to step in and help which is nice since we have only been hear a little over a year now in this house.
No family nearby to help without making it difficult for them to travel.
Same thing with old friends up North where we moved from I don't mind them coming down for a visit while I am in healing mode but don't want to make it difficult . Gary is taking 2 weeks off of work using much piled on vacation days he has been adding up for this "event"! He has a great boss and a lot of people offering to come and help us if we need it! I personally want his boss to come and cook for us a few days as I hear he does a dynamite baked chicken casserole of some sort tat includes veggies and no thick sauces. Yum!
I am making a minestrone soup in my crock pot in the morning as it is good for me to eat lite so as to lose more weight before my surgery if I can.
I think we all hit a point with our weight as we approach the surgery where we are totally frustrated as we are not supposed to "Overdo"! Hard when you are used to doing things to avoid gaining weight especially those of us who are older and not as active since the symptoms started up.
I say, Hell. Be careful now and know that after the surgery we will be expected to get moving and really work to get a focus on getting as healthy as we can both in building back up as we strengthen our bodies and to feed it correctly to care for our hearts in every way we can. And we will be happy this is in the past and glad to gather our energies to be the best we can be!!!
Right Heart Sister?!!!
Anyway, you won't need another book if I continue to write chapters like this for you to read, chuckle.
I am looking forward to hearing how your are doing. I am on day 68 days to go and counting!
Sleep well and take care! I will be thinking of you and saying prayers! good night heart-community!
Meredith Bray posted a note for M that says:
Hi! I'm about 14 weeks post op, and I clearly remember being where you are. It seems so long ago! I found swimming to be relaxing, and a nice slow way to exercise without raising my heartrate above 100.
My leg cramps pre-surgery would WAKE ME UP out of a dead (sorry) sleep. I received a gift certificate for a massage after surgery (about 8 weeks) and haven't had a single one since. Mine was from a muscle in my buttock that had wrapped and contracted around the sciatic nerve.
Stop reading the internet! I vowed I wouldn't read anything on wikipedia or WebMD, only publications from major hospitals.
I, too, had family "go silent" after I sent out the news. I know they love me, and am quite sure that they just don't know what to say.
Ginger (in the Land of Oz) posted a note for M that says:
Greetings M! Just checking in to see how you are doing. Keep your chin up and a smile on your face.
And as to your remark, "...I feel like I'm part..." Make NO mistake! You ARE a part of this great community! We have claimed you as one of our own! And if that's the worst news you get today, what could be better?!?
Hugs and Prayers,
Ginger (in the Land of Oz) posted a note for M that says:
M, As you now already know, Terrie has been there and done that, but has done a magnificent job of picking herself up and dusting herself off and really made some progress in the "right" direction. Bless her for writing in what was in this part of the world early morning.
I spent much of my morning going in for a brain MRI and then recovering much of the afternoon from the vertigo that was triggered somehow. I have a history of a traumatic brain injury from several decades ago, and as is often the case, I was blessed with quite a bit of recovery, but still have a few reflexes that are gone for good and some other things that tend to flare up. Vertigo (with accompanying nausea and occasional vomiting) and headaches, often migraine, are the most common. I have learned long ago that I am unable to predict when they will occur, how they will present, or how long they will last. But, greatly with the help of my family doctor who retired just a week ago, we have identified many of the definite triggers, and those I avoid. Others are more elusive.
Frankly, I am pretty happy some days to be able to sleep and not to feel!
But I have told many of my friends that of late I find myself drawn to this site and this community of heart valve people, where I always find words of wisdom, learn things I had not known, and hopefully give something in return.
And several of them have made the giant leap over from FaceBook to see what I am referring to. And all who have visited agree this is a pretty awesome, one of a kind oasis in the desert that cyberspace can be.
It is late here, and while I have napped a bit today, I am working hard to get onto a regular sleep cycle. There are too many good reasons for doing it to ignore or not make the effort. So I started with a time to wake every day (which was never a problem before the head injury, but is since because of chronic fatigue.) Then I set myself a minimum amount of sleep at night. Between 7.5 and 9 hours is best to keep one's immunity up. I chose 8. But can honestly tell you that monitoring in the three nights before I made it official, I did not hit even 7 a single one! Now I have a "streak" of 2 nights going with 8+ hours and still waking up at a reasonable time. So tonight I add - Go to bed at a consistent time. And the big question, since it takes me so long to wake up, is will I be able to make myself settle in and sleep at a respectable hour? Ask me how I'm doing in a few days.
You can look at my heart journal to get details, but a brief rundown is I was born with a bicuspid aortic valve. About ten years ago my family doctor noticed a click added to the murmur I have had all my life. A cardiologist has been testing and monitoring that part of me for the past 10 years and told my husband and I it was time to get a consultation or two, and that with my brain injury history it was going to be a bit tricky. But he specifically set out some parameters he thought the medical center and valve surgeon would need to meet, and that has been very helpful. So my medical records arrived one week ago at a center and surgeon who I believe my super cardiologist will find to be satisfactory, and now we are waiting to see about a consultation - yes, no, later? and timing from what the valve surgeon judges from my records, which are thorough and up-to-date, Yes surgery in my future, and probably much sooner rather than later. But lots of unknowns right now.
But I may or may not have many answers within the next week. Time will tell what God already knows!
So glad you are doing better aside from the morning experience. It reminds me very much of a Christian song - modern - that speaks of a man in medieval times who passed a monastery every day on his way to sell his wares. What was life like inside? One day he came upon a monk and spoke with him. The monk replied, "We fall down, we get up; we fall down, we get up; and the saint is just a sinner who falls down and gets up." Song by Bruce Carrroll. But it is much of what we are doing, hopefully with fewer falls as we move along, bolstered in strength by new knowledge, encouragement and love from others, including without question this community, and growing Faith, not only in a higher power, but also in realizing we are, after all, on the right path, and the outcome will be worth the trip!
On June 12, 2014...
Terrie posted a note for M that says:
Well, good morning to you Heart-Sister "M"!
Sounds like you had a bad night. Hope your leg is better.
Don't think paranoid is the right word for what is taking place but rather like you said "too many trips to "Mr. Google" has you going where I think all of us searching for answers ends up. In a "Panic" mode. Only temporary and easy to fix.
It is sometimes difficult to stop the mind from circling around all of the questions, answers and still more concerns we face when being told of our hearts condition.
As you know it is hard not to over think where things stand today but with each day you will be reminded that this is a fight you want to face, believing as we all do at some point that we need to tell ourselves this is something that will be in the past making us all the more healthy and ready to continue with our lives!
I have found a great strength in the journals posted in our community of people who have been where you and I are headed and have their own individual "take" on things. It is such an asset to hear about so many people just like us who have shared so much about their own experience and only help the mind open up to the positive in having the surgery we need to get better.
I understand where you are right now and know that stress and anxiety within is not easy to hold in so try and focus on the fact that a great change is coming and all this anxiety can be put to rest with your believing that things will go well and end well for you.
Be patient with yourself and check the journals for information and ask people exactly what it is you want to know to help you continue on your way. There are great people here in this community of hearts! Take care, have Faith! and a great day/evening. I will be thinking of you and sending positive thoughts that today is better!
Ginger (in the Land of Oz) posted a note for M that says:
M, Thanks for the great responses. I Ditto what Terrie said below. We are glad to find that you, too, will find the encouragement and friendships we have on this invaluable piece of cyberspace!
Have a great day tomorrow and please let us know how you are doing.
Hugs, Heart Sister
On June 11, 2014...
Terrie posted a note for M that says:
Good morning "M"
Read your Journal responses this morning with my morning coffee!
Thank you for the nice response. Are you not surprised and pleased with how many people were here when you reached out? This is only the beginning and more will follow as your story unfolds! We are here for each other and I too will follow you closely especially like you said "we might be headed for surgery near the same time!
Whatever the case Heart Sisters/Heart Brothers we will be here for support.
Enjoy each day and gain strength!
I am off to let my dog Hunter out to chase the adopted neighborhood Cat!
It is early here in California 3:23 a.m. It is also time for me to Chase my husband off to work! Later!
On June 11, 2014...
Ginger ( in the Land of Oz) posted a note for M that says:
M, love the name! We called my now 8 month old granddaughter "Little M" while she was in utero. Her parents did not want to know gender before birth. Well, Little M is doing great and I'm taking it as a sign that Little Bit Bigger M -- you, will be fine, too.
For my friends and family I have had so much I have been through in the last year that, well for my friends it was like surprise and shock followed by " we've prayed you through everything else and we make a great team. We're still here for you." For my young adult kids it is sort of like -- More??? You are always sick! But now I think they are starting to wrap their heads around it. One of my sisters is in agony over it, but she just lost her home to a tornado and we are all grateful that God chose to wipe out the house and save them. Direct hit. It was a miracle they walked out. So we are all in different stages of coming to grips with what is ahead.
Love what Rhonda wrote, and she is a few years out. I have been following Terrie and Julia. Julia had a big procedure and she's been a trooper. She's not that far out. Terrie and are a little further down the road than you are. We still have surgery ahead. Terrie knows her surgeon and even surgery date. I am still waiting while my medical records are reviewed, so I know.where and who I hope, but nothing is definite yet.
M, just pour your heart out. Terrie calls us Heart a Sisters and we really are. We are so grateful for this website. We are all good listeners and help each other with questions, calm each other when, for instance, someone is worrying unnecessarily. We are here for you. You are part of our big Heart family now.
Know that we care, we will pray for you and send positive thoughts. Sometimes it is really hard, but we manage sometimes to make others laugh, which is so good for the soul and spirit.
The young but wise pastor at our church called today. It is the first we have talked since the word started getting out. One thing he prayed for was that I would not have fear, because if what people thinks will be the worst happens, I know where I'm going. So after he closed I told him I honestly am not afraid. I have dropped death off my worry list. That is totally up to God, so why should I concern myself about it. No, I am just praying God places my at the tight medical center under hands He is guiding as well as the surgeon and valve teams minds. Then I can ask for no more.
So I am still doing some learning, and so much is available on this site so a person doesn't have to wake up after surgery and wonder what is going on and what will happen next.
Every family is different, but the best thing you can do for all parties involved is to take care of you. Prepare yourself the best you can mentally, emotionally and physically.
This is not the tint to be brave for your family. The more open you can allow yourself to be, the more they will come around with the compassion, care and love and support that you need.
None of us asked for this, but here we are. So may as well be kind to yourself and, again, take care of you.
Please post again soon. We all want to give you all of the encouragement and support we can.
Take some calm deep breaths and move forward. All it takes is just one step at a time. Don't try leaping over a canyon by yourself when we are all here from you.
Rest in the knowledge that you are already being loved and cared for by people who knew you not, until you bravely made that first post.
Julia Hsu posted a note for M that says:
I am like you. No one believed that I need an open heart surgery when I told them. I felt like a ticking time bomb before the surgery on May 15th.
I also had your symptoms: breathless climbing stairs, persistent cough, and general tiredness. Now almost 4 weeks after surgery, my cough is more or less gone. I think it's our bodies telling us that something needs to be taken care of.
Find a good surgeon & you will feel better about this journey. Good luck.
Rhonda W. posted a note for M that says:
I totally understand. I had surgery three years ago for a aortic root aneurysm at Cleveland Clinic. I spent a year waiting for it to get to the right size to operate. Knowing it was about to happen but not knowing when was torture. Plus my younger brother had the same surgery just 6 months before mine was diagnosed. It was awful waiting. Plus I am a nurse. I researched and knew way too much.
So, what I am saying is, yes, it is a very serious and life threatening condition and operation. The part before the surgery is way worse than after.
My best advice is to pray for peace. Next, go to the best place you can that does the most of them. Get the top surgeon you can.
I am very spiritual, but I have to tell you, I grew more during this ordeal than any other time in my life. We all should live each day like we are about to have open heart surgery. Think positive and good thoughts.
God bless and keep you.
Terrie posted a note for M that says:
Hello "M" I just read your story and wanted to say that you need to know you are not alone. Like you, many of us are at the very same place you are.
We have faced and are facing the same fears and questions you are experiencing and are here for each other unconditionally on this wonderful site.
Please know how much alike we all are given the news we have received that such a precious part of us is in trouble and needs to be fixed!
Here at this site you will see just how many are faced with these same feelings with so many questions and the ability to not feel alone and get the answers!
So hang in there and give yourself time to focus on the fact that this medical ability available to us as we face our individual issues is GREAT and will see us all through.
In 72 days I will be having aortic valve replacement myself. Am I afraid? Went from Terrified to worried in a matter of months and it is getting better everyday through letting people know how I feel and giving them a chance to step in and help me through these "stages".
Don't hold in what you feel. The symptoms your are experiencing make it hard not to but it is good to know that there are better days ahead.
So, keep posting and listening to those who have been where you are and have moved on to better health after treatment!
I wish you the very best and hope the anxiety lessens and your confidence grows rapidly that this is only temporary.
Take care. Prayers coming your way from California!
David Augustus posted a note for M that says:
I know how you feel and it can be a lonely place when you start thinking of what is ahead of you. Three weeks ago today, I had my BAV replaced and my arotic root through my ascending arch worked on as they were too big because of my BAV. I consulted with two surgeons and they were very different in their approach to fix my heart.
It was an easy decision to make after the second consult and I felt much better. When the doctor tells you that he will take care of you, that's all I needed to hear.
So I gained strength and confidence from my surgeon, along with knowledge from this website and the many supporters that you will encounter. Oh yes, positive thoughts go along way through your journey. Take Care
Rob Wigley posted a note for M that says:
Hey, it IS scary! I had both the issues you write about and it was taken care of just fine. Yes, it's a bit daunting to think about death etc, but that's not going to happen to you with this. Get it taken care of. My wife still cries when she thinks about all we went thru with my procedures (as I call them), it's scary, and it's ok to be scared, but the only certain thing is if you don't take care of this now it will get worse!