Jennifer Cohen Louth posted a note for Lynn that says:
I receive the emails from this site as it helped me through my second OHS almost two yeas ago in Dec of 2011. I didn't have as much waiting as I knew I had Mitral Valve Stenosis but never had any symptons until Sept. 2nd of that year. During those three months I almost died. However after my life saving complex minimally invasive (what a contradiction) surgery my heart is better then ever. Last night I went to fright nights with my husband & our daughter after spending all day on Halloween activities with two of our grandchildren. My point is recovery is hard. But you WILL recover and being a heart patient will only be a part of who you are. Not how you define yourself. I look forward to hearing your story on the other side of surgery.
Susan Smith posted a note for Lynn that says:
Lynn, You have a gift of expressing yourself in writing as to your feelings and the events as they come along. I am a bicuspid Aortic Stenosis fellow traveler and find your journal helpful. I am on the 6 month visits with my cardiologist. I have had a TEE and am classified at a moderate to severe patient. I am older than you and am in the process of losing weight as directed by my doctor. You are doing so very well and adjusting to the situation. I have had symptoms, chest pain and sob, so you were fortunate that your primary care doctor was on her toes and caught your situation before it became even worse. Do keep me informed of your progress as you reassure me with your clear writings. Keep your chin up and your eye on the prize. with high regards
Jim Jones posted a note for Lynn that says:
Well, well, well. I receive Adam Pick's newsletter yesterday, scroll down and see who??! Hey, that's Lynn! I know her! Hope all is well with you. Yes, this is starting to feel more real, and surreal, as the days pass. I need a new poem from Lynn, I tell yah! And I need a pug! (we have no pets) You have a great day, Lynn. we are almost there.
Chris Addington posted a note for Lynn that says:
Greetings Lynn - I follow this website on the odd occasion and your story was interesting to me. On 9 November 2011 I had an AVR procedure to repair severe regurgitation caused by a bicuspid valve. I was 50 at the time of my surgery. My repair was with a Mechanical valve. I know all about waiting having been all prepped and ready to go on 2 November and then bumped and told to go home and wait a bit longer. Living in New Zealand we don't get to choose our surgeons but I could not have asked for better care and support. I will shortly celebrate two years and 50 million heart beats. My recovery was swift and sure, back to work in four weeks and back swim training within 6 weeks. I live with warfarin without any problem and I love listening to the steady tick of my "noisy" valve although it often freaks out other people. You can do it. Best of luck to you and your support crew.
Johan Neethling posted a note for Lynn that says:
We live in the City Bowl, Oranjezicht. On my way this very moment to take our Pug (yes we have one too!) for a walk on the Mountain behind the house.Shall do a spiritual moment for your safe passage and speedy recovery. Johan
Johan Neethling posted a note for Lynn that says:
Good wishes from a sunny Cape Town. Had my AVR in 2009, Chris Barnard Memorial Hospital, age 66. Have not looked back, best thing ever! I appreciate your turn of phrase in your blog!You have prepared well and done all that is to be done, it is now time to hand the torch to those waiting to take it from you, and let the great peace roll over you which we all experience in the last few days before the operation. Kindest of regards, Johan
Sidney Nash posted a note for Lynn that says:
I just found out about mine in January and my cardiologist wanted to watch for a few years. Well, that turned into 6 months. I had mine replaced (bicspd valve) at Duke in NC on Oct 3rd. On Oct 17th, I walked 3 miles, straight, at 3.1 mph. Push yourself and recovery comes quicker. I took two painkillers after I got out of the hospital. I slept in my bed night one and have had no trouble. I'm sleeping on my side now. Do not be scared, this "changing a tire" now. firstname.lastname@example.org if you would like to chat.
Val Badvelian posted a note for Lynn that says:
Dear Lynn, I wish you well. I wondered how you chose your surgeon. My story is so similar to your; I'm so frightened, but try to speak to the Lord and ask for peace. I have your exact diagnosis; absolutely shocked that majorsurgery is the only answer. I live in Fresno, Ca. My email is: email@example.com. Would love to hear from you. My surgery is sometime at the end of this year, not a date as yet. Next Echogram will tell the story.,
Scott Lee posted a note for Lynn that says:
hi lynn! day 26 for me and i walked a mile went to in and out for a burger and shopped with my wife at the supermarket. my dx was the same as yours and i am an avid biker and tennis player. I feel better than i ever have in the last few years. Have a 'mantra' for post-op recovery like mine was 'why are you worrying so much you can't do any thing about it so just have faith! Post-op anxiety was my biggest fear..I am just a 'chicken' altho I ride a harley!lol next week I begin rehab..my scar is healing nicely, my outlook on life is great and I have a great doctor, Vincent Lee, Cardiovascular Surgeon here in Prescott, Arizona. I will be thinking of you!
Bob Eldi, Amagansett, NY posted a note for Lynn that says:
Lynn - the waiting is hard. I had a bovine tissue aortic valve procedure at Columbia Presbyterian in NYC on 2/20/13, just 7 months ago. What a difference in my level of energy. I also don't like being helped, but once you get home the recovery speeds up. The 1st 2 days after are the hardest, then you'll be amazed at what you're capable of doing. The pain is minimal - the discomfort is moderate. Listen to your physical therapist and do your exercises - walk a lot - sleep when you're tired - don't try to do pushups too soon. By 5 weeks post op I felt like it'd never been done. I'm 71 and in July & August I helped a friend build a house (I worked 4 hrs per day). Now I am back teaching part time again. You will do well. I'll be out in SF to visit my daughter 11/23-11/29. If you want, I'll stop by - Bob Eldi
Judi Miller posted a note for Lynn that says:
Thanks for sharing your story Lynn. I am scheduled for replacement of both my mitral and aortic valves (as the mitral is too narrow for a balloon valvoplasty so they are going to do both valves as long as I am having a traditional open heart procedure) on Nov 1st. I also am a Type A. As a nurse I am use to being in charge and making split second decisions for others welfare. The waiting (I was originally scheduled for Oct 16) and the "letting go" have been hard for me. I have read a ton of information, have my "affairs" in order and have made all the physical preps for the recovery that I can ahead of time (lift recliner, stocking the freezer and pantry, etc). I will be at the University of Iowa and am taking it as a positive sign that my surgery has now been scheduled for All Saint's Day. Family and friends bolster my spirits and are at the ready to lend assistance. But like you--let's get this party started and begin the healing process!!
Nupur Andrews posted a note for Lynn that says:
Thank you for writing this journal. For the ones who will follow in your footsteps, it means a lot to read the thoughts you share, the courage you display and the solidarity of seeing each other through this. I don't know how far away I am from my surgery, but I often think of "my time away" too, more often than I admit to anyone, and the fact that I'd be putting my husband and young son through a lot of trouble.
Are you having your surgery at UCSF? I live in Los ALtos so Stanford would be the place to go, but I haven't started "shopping" yet.
I think we should start a Bay Area chapter of the Valve club, where we meet to honor the "graduates" and cheer on the freshmen : )
Wishing you a successful surgery and a speedy recovery.. warmly, Nupur
June posted a note for Lynn that says:
You are so brave and such an incredible writer!! You should write a book! You have a beautiful way of expressing yourself as you go through this journey- I have gained strength and insight from reading your posts.
My husband and I just celebrated his 1 year anniversary for what I am so happy to say was his supremely successful surgery to replace his aortic valve (porcine) .He was like you as far as having absolutely no symptoms prior to his surgery other than a heart murmur- he is strong as an ox and very active (he will be 67 next week). When I think back to some of the things we did before we knew of his severe aortic stenosis ( cutting down trees in 100 degree heat, etc. etc. etc!) it is a miracle he did not have a heart attack.
I am happy to say he could be a poster child for the surgery- he sailed through it and was home 3 days after the surgery. It was true open heart- in addition to the valve, he also had a small hole in his heart that needed repair at the same time. They also found an aneurysm and had to lower his temperature dramatically during the surgery- but his doctor (Dr. Halloran- Elkhart General Hospital) and his team were amazing and ready for anything so my husband had absolutely no problems whatsoever during the surgery or postop. Knock on Wood and Praise God! We do not take any of that for granted and feel very blessed. And wish the same outcome for everyone who is going through this. Post surgery he did everything the doctor told him- most importantly the breathing exercises and the walking. We also bought a zero gravity recliner on Craig's list (due to reading all the great recommendations on this site) and it was the best thing we could have done. Really helped keep him comfortable- that and his trusty heart pillow! I know you will have the same positive results. And as Tom Petty says" the waiting is the hardest part"! The months before his surgery were filled with fear, panic, peace, love, laughter and then full circle again. Friends and family got us through and I know yours will do the same!
The advice about turning yourself over to your nurses is spot on- you will never be in better hands than theirs and your doctors- first class all the way- they do these procedures every day and are the most trained, dedicated , wonderful people on the planet!
Sorry to go on so long, but I just had to reach out to you to let you know
that all will be well- you have an incredible attitude and will to carry on!
And kudos to you for sharing before your surgery! I have lessons to be learned when it comes to trying to handle things on my own, so I did not reach out on this site for support before the surgery , which I regret. I admire you and all the other brave , incredible people on this site for sharing- you have no idea how much hope and strength everyone gains from reading all the blogs! Thanks again to Adam for sponsoring such a wonderful place to share! Take care!
Debra Wells posted a note for Lynn that says:
Hello Lynn, My name is Debra and I have been reading your journal. I wish you and your family all of the best before, during and after your surgery. I had the surgery back in 2005 and it is not an easy surgery or recovery. Unfortunately, I am facing the same surgery again, in the next 2-3 weeks, as the leaflet in my mechanical aortic valve has become stuck for some unknown reason. I was hoping that some minimally invasive procedure could be done, but, it is not possible. I have had all of the testing done and the dental clearance and will get a date for surgery very soon. I am also a fiercely independent person, but, I had to learn to be somewhat dependent after the surgery. However, that independent nature does come in handy, because there will be little to none "learned helplessness" or tolerance for not getting back on your feet. Just get some good support for the "girls" as they will exert a pull on your surgical area and get a good small pillow to hold against that area when getting up from a sitting position or when leaning forward. Again, I wish you the best of everything in regard to your upcoming surgery.
Trish Stackhouse posted a note for Lynn that says:
Hi Lynn, I am an 81 year old grandmother and exactly four months past my second AVR surgery -the first in 2006 - and I feel great! The first two months are a bit hard and it is difficult to sleep. I took sleeping pills for awhile, but I. Am off them now and sleeping well. Tuesday I start formal rehab to walk more., faster etc., but I have been using the treadmill already. You will be fine! Good luck! Trish
Carl Krehbiel posted a note for Lynn that says:
I've had 3 (count 'em, three) heart valve surgeries (composite aortic valve & graft in '92, mitral valve repair in January 2013, and when the repair fell apart, replacement in March). Good suggestions by others, here are a few more:
-- Get an iPad or other tablet and stock it with books (or games or whatever will help you pass the time). Beats the heck out of schlepping actual books around). It's especially good in the event you have post-op insomnia (as I did) and keep waking up at 3am. If you're a computer person, buy or borrow a lightweight laptop or ultrabook -- one you can lift with 1 hand without straining).
-- Go grocery shopping before you leave for the hospital. Frozen & canned goods, so you can feed yourself when you get home.
-- Take care of any little chores (at home or elsewhere) NOW that might strain you. For example, if bath soap is on the top shelf somewhere, get it down NOW. Pre-position heavier items if possible.
-- After surgery, get out of bed and move around as soon as you are able. Take walks in the hospital ward. I'm sure the nurses will encourage you, and let you know when you can start.
-- Get out of the hospital as soon as you reasonably can. You won't get much rest or sleep there.
-- Get used to being VERY careful about reclining, getting into or out of bed. Your sternum will hurt for several weeks afterward. I've gone up or down too fast, without thinking, and screamed.
-- Don't be leery of taking pain meds when you need them. I've had 3 surgeries, and never had an issue with addiction, but I made a point of reducing then stopping pain meds as pain from surgery receded.
Sylvia Woolworth posted a note for Lynn that says:
This will be an exciting time for you. I had my aortic valve replaced in 09 when I was 73 and the most important thing was my heart pillow. I didn't sleep in a recliner, but in our spare room, with my pillow at all times. It helped me get out of bed and it was there if I coughed. I was able to cook light meals when I came home, but I rested a lot. Catch up on your reading and do your breathing and walk around the house. Keep as active as you can, and as independent as you are, do let people do things for you sometimes. The best to you in sunny CA.
Tracy Aranda posted a note for Lynn that says:
I'm a "bit" of a Type A myself, with a surgical date on Nov. 14th. The prepping has taken over my brain! I see I'm in good company. Look fwd to keeping up with your journal! Take care!
Nancy Scott posted a note for Lynn that says:
Yes, the waiting is the worst for us control freaks. I had valve repair at UCLA in January, and find it impossible to believe 10 months have gone by. The best thing is to just walk in and hand yourself over to the nurses. They know exactly what they are doing and will take care of you. Enjoy the time now with family and friends, and just plan a few "lost days" that you remember very little. Just have good thoughts and have some fun while you wait. Keep in touch.
Julie posted a note for Lynn that says:
Hi Lynn, I'm from Australia, only found out I had bicuspid stenosis valve when I collapsed in the ocean, saved from drowning by my husband. Three days later, nice new valve. Now, go to gym as much as possible, lost 15kgs, lots energy. Like a new lease of life. Best wishes to you.
Glenys Claverie posted a note for Lynn that says:
Control Freak?! Who wouldn't want to be in this situation? Doesn't matter as you are lucky to have a great support team around you who won't let you do too much either pre or post op. Let the battle commence! Sending lots of positive thoughts and hope the next 2 weeks go fast for you. x
Trish posted a note for Lynn that says:
Hi, I'm a little over a month post op. I had an AVR at Hopkins. I was amazed at how little actual pain was involved. Don't get me wrong. You can expect a lot of discomfort and I found the pressure on my chest bad at times. But I was definitely surprised that there was so little actual pain. I, too, am a control freak and the first hours post op were difficult but I was fortunate that I had someone from my family by my side the entire time. I found it helpful that my sister was there encouraging me to breathe thru the vent. The sooner you are consistently doing that the faster it comes out. The meds made me want to sleep and her encouragement helped to remind me. You might want to consider planning to have someone there especially to help you with that part. For me, it was not planned but a wonderful blessing that she had that instinct. I was also fortunate that my younger sister was there to keep the mood light in the room. That reassured me with the knowledge that because there was a gentle humor in the room I knew I was doing well. You can expect some blips in the road but within days I could tell that my body was enjoying better oxygenation. My hope for you, is that your experience is on the whole, is as positive as I feel mine has been to date.
rosseneni v. flores posted a note for Lynn that says:
hi lynn! i'm nini and on the 27th of this month would be my 4th month post-op. my pulmonic valce was supposed to be replaced, but my surgeon finallly decided to just repair it when he physically saw it after he opened me up. i also had my pulmonary artery replaced with with a dacron graft because of an aneurysm.
to make it short, i read your journal and i smiled when you said that you are such a control freak! lol. we are of the same category, lynn. and i had just the same thought how i could still be independent day 1 after my surgery.
unfortunately, we couldn't. that's where the loving support of our family comes in. being alone here in NY, i had my eldest brother come from the philippines to be with me. believe it or not, he would push my back up whnever i get out of my bed coz my incision hurts and the sternal wires feel like being displaced. hahaha. even during my shower, i would leave my bathroom door crack opened so he ould hear me easily if anything. sleeping on a recliner helped me a lot in my first few weeks, but still, i needed his help.
i hope you find your post -op experience touching than painful... the love that your family would be more intensely felt at that time. good luck, lynn. with you are my prayers.
Marlane holtshouse posted a note for Lynn that says:
Wow I had my aortic valves replaced in San. Fran. I am from AZ but elected to go with Dr. Guidianni. I was able to fly home to AZ a in 5 days. recovery was not bad but do go to rehab. Good luck and prayers are going your way. Marlane
Jim Jones posted a note for Lynn that says:
So what is it Tiny or Ty??
Great to see your family weighing in and their confidence in the Lynn 2.0 outcome.
You have a great attitude! But where is the photo of the pug??
Methinks we are getting closer. I sure identify with the independent, high control, helping comments. I guess it is time to let everyone help us so we can get back to helping others as soon as possible. (and to grab back control and independence!)
I know you will be ready and do well! Best.
Rebecca S posted a note for Lynn that says:
Lynn, I fully understand the control thing. I hated the thought of someone else being in control of my airway. I was fortunate enough to know anesthesiologists and hand picked the one I knew and liked the best and we had several talks and made a plan. So that part went well.
When we go to San Francisco we always take a sunset cruise on the Adventure Cat......catamaran. It's so pleasant and relaxing. Have you ever tried it? Last time we were there......summer this year......the weather caused it to be cancelled......so we have a rain check. Can't wait to be back in that beautiful city.
But enough of that. I am glad you are feeling calm and peaceful. Your children must be awesome!!! Always blessings.
The time will go by quickly and soon you will be in recovery. Yes, post op the first few days are hard. I remember asking, "what have I done? This is so hard." But before long I was home and the weeks passed......as they will for you.
Gabi posted a note for Lynn that says:
You are spot on Lynn with the waiting being the worst. I was just wanting the day to come and did not want anything to go wrong - like I would get and infection or an emergency would pop up and my op would not happen. This is the worst because it is out of our control. If you are a control freak there is not much you can do to control these things and you wont have much control in the hospital. When you get back home everyone will have to WATCH OUT because you will be BAAAAACK!!! You will be great Lynn and I for one am looking forward to hearing how you are after the surgery and I am sure you will be great!!!!! Wont be long now Lynn! Did you know that the first Tuesday in November is Melbourne Cup Day here in Australia. So as well as cheering on my horse in the sweep I will be cheering and visualising a very good outcome for you. Sending Ozzie love and sunshine to inspire you and heal you!
Stephen Ennis posted a note for Lynn that says:
Dear Tiny ,
Phil McGovern called asked about you , I gave him the link to come here.
This is like getting an oil change , don't sweat it toots. Anything you want me to do please ask. Will call you when we get closer.Cheers
Jim E. posted a note for Lynn that says:
Hi, Ty :)
Awesome poem! I feel you on wanting to start the journey.
I'm so relieved that many hands will be close by to ease you back to Lynn 2.0, the reboot :) I love your spirit, Ty. Mom is alive and well within you :)
Love and Cheers,
Jimmy and Bob :)
Dan Sinclair posted a note for Lynn that says:
Seriously, you need to write a book but I suspect you have. Lynn, we in the waiting room are all pulling for you, and the nice thing is, all of the club members that have been through it are doing so good. You will join them and be coaching the ones following you and you know we will all appreciate it. Thank you in advance !
Carol Jackson posted a note for Lynn that says:
Thanks for writing in my guestbook. I thought I'd respond to yours. I don't know which is worse --not knowing about a heart problem at all or monitoring it for 5 years. Both are stressful. I'm sure you are having feelings of "why me?" The Journaling has been so theraputic for me. Now that I'm home I don't have the energy to keep up. I've not slept fell since I've been home. If you have an specific questions please feel free to respond and I can send you an email. I am so glad I had somone at the house after hospital. My husband went back to work and we hired someone to come in for 6 hours a day. Be sure to keep up with the pain meds every 4 hours...otherwise...even though you may not hurt, you cant sleep. I'm glad to be on the other side of the surgery!
Aubrey posted a note for Lynn that says:
Gird thy loins with courage. Don the breastplate of determination and wear the vambraces of strength.
All flowery language aside, it is like a battle in preparation and for me the process was easier than I anticipated. We can tell by your writing that you are more prepared than you think and I hope your experience is excellent.
Cydne posted a note for Lynn that says:
Lynn, Thank you soo much for your response. I'm 65.5 and have always been in great health. I've been in denial for awhile, but I'm coming around. Actually I'm really tired of worrying about it. At this point I feel like I'm wasting good living time on worrying about not living, and worrying about when some defining symptom will show up. I'm going to my second opinion doctor currently. (The first doc I didn't like.) I'm almost ready to take the next step but not quite. I will pay attention to your journal in the days to come. Best wishes
Cydne posted a note for Lynn that says:
I'm identifying with your health issue and progression. I've been aware of my severe aortic stenosis (bicuspid valve)for over a year, but have delayed surgery because I haven't had symptoms. What made you decide to go ahead with your surgery? I'm being watched by my cardiologist regularly, but I'm scared to death that I'll end up worse off, because I'm feeling fine now, presurgery. It was a total shock to me when I was informed I had this medical problem.
I wish you the best on your surgery. It feels to good to know someone else is on the same road.
Jim Ennis posted a note for Lynn that says:
Hi, Ty :)
I loved your Oct. 11th journal. The battle motif is perfect. You are truly loved by many and we all wish you a full recovery. Please keep your mind set and your warface fierce.
Love and Cheers,
Jimmy and Bob :)
Jim Jones posted a note for Lynn that says:
I told you, Lynn, you indeed are a warrior. I celebrate and commend your attitude. I suspect that when it is game time you and I will be ready to take the field. We know recovery will be tough but, you know what, so are we. My wife Lise and I were talking about you today and she said that you look 45 years of age. Well, good for you! She doesn't say that about me! Good luck with your tasks. I am also working on my list. Best!
julie watters posted a note for Lynn that says:
I will be there the week of the 20th. I'll look for the Google calendar from your friend and sign up for a day. I hope you're having nice autumnal weather in Marin. Dexie our crazy cat has been fighting with a fox, and apparently he was the victor! More soon. Love, Julie
Jackie posted a note for Lynn that says:
Good luck on your surgery , I will be having the same surgery, don't have the date but it should be before the end of October. I am also so ready to get it done! I want my life back. Let us know how it goes for you.
Julie Watters posted a note for Lynn that says:
You are a rock star. I just read the note you wrote to all the FoMC folks. I am so proud to call you a friend. I hope to see you soon. I'm happy to come up to visit in the next month if you're up for it. If not, I'll see you in November.
Ryan and Kelly posted a note for Lynn that says:
Hey Aunt Lynn! We are sending you lots of love! Excellent news that you now have a date, only a few weeks away now. We are sure you will come away from surgery as lush as ever!
Aubrey Elmo Jones posted a note for Lynn that says:
Everyone has to be managed individually for the meds but basically they Are balancing a few things with them.
The first is the pain and it worked very well for me. I am pretty drug resistant but came home on only one pain tab every three hours, hydrocodone, which you can take two every 4 hours. So I was using a lighter dose and it worked for me. You have to find your level to keep yourself pain free and still functional to walk and begin normal activities after a few days. Also, I came home with some Xanax to take at night with the pain pill to help me relax to sleep. Sleep is very important to help you progress and let the body rest
The second thing is heart rate. The heart is being fooled with and mine started out at over 100/ min resting rate after surgery and the beta blocker started slowing this down in a day or two. It is down to less than 70 now, so good progress.
The third thing is to get the fluid out of the body that has built up from IVs, surgery, etc. This is usually something like LASIK and with that is probably potassium to keep that from washing out with the LASIK.
A fourth thing may be something like a blood thinner like aspirin or another substitute.
I expect to come off of all of them except the beta blocker, which I had before for a different reason and aspirin which is really healthy to keep the blood slippery so to speak.
What is described here is pretty normal but you may have something different based on your metabolism or other possible previous issues.
They do this all the time and our responsibility is to help them understand how we react as individuals to help them advise us on the adjustments and level that work for us. Not difficult but may be a call or two to the nurse for directions. Hope this helps, it seems like a lot but it is pretty simple when you understand what they are actually trying to accomplish.
Aubrey Elmo Jones posted a note for Lynn that says:
Lynn, I was in exactly the same position. No clogged arteries, healthy heart otherwise. This made my procedure more straightforward and the recovery outlook better. I expect that you will do the same or better.
Take my word for it, do not dread this. It is more like a speed bump in the road of life and unless you experience something different, you will pass this with flying colors.
We are so fortunate to be able to fix what is wrong with us. I look forward to hearing about your great journey as well.