Adrianne's Journal

Sophia Ridley  I had Lovenox injections to do each evening. I'm a complete wimp when it comes to that so took 40 mins and a bucket of tears so I really feel for you. Can they put you onto tablets shortly? I'm on Rivaroxaban now.

I get a little dizzy from the beta blockers and thinners which affects my eyes so I've had trouble watching TV or reading. I've taken to flicking through the newspaper and magazines. Yesterday I spoke to a couple of friends and my husband and I popped out for lunch and a walk about. Made a huge difference to my moody. Today I'm much more positive and just done Christmas shopping online!

Vent away ! We all know where you're at. It does get easier as you get more mobile.

Christine Pittelli  Hang in there. I had surgery a little over a year ago - I had no tolerance for anything accept my two beautiful girls...I just wanted peace and quiet.
I actually found myself googling comedians on my phone and laughing (though it really hurt - but a good hurt) was the most helpful. You need to laugh a lot - and I will tell you this far out - I still find the need to laugh...and I take no drugs post op and had a stable recovery with no issues. Your body went through a lot - patience is needed. Believe me, I learned patience. :)

  Great idea about the comedians! I also found that making myself get up and walk in my driveway (and usually in the sun) was helpful and made me feel better. Best wishes to you. I hope you are able to move forward and feel less frustrated soon.

Steven A Husted  yes time will tell you are getting better time is a healer i know i tried to rush it but that did not work best wishes and prayers to you

Mary K  Christine is right, patience will acquire a whole new meaning. Please stay in touch with your doctors about both your weight loss and the pain meds. They may be able to help you with both. Are you walking? It will help immensely. Four to six times a day, building up minutes as you recuperate. Put on some music and just do it. You have just been through one of the biggest surgeries there is, be kind to yourself. Recuperation is a journey, but you may be surprised at the small victories that you have every day. All the best to you.

Sophia Ridley  Yes, it's hard to describe. Also I lost a couple of kilos which seem to have crept back on! I was eating quite normally in hospital, then I went off everything and all I wanted was home comfort cooking. My taste buds recovered a few days later. Do mention to doctor though.

Emily Rowley 
Yes, my taste buds eventually returned. I lost weight I never knew I had (cause I'm already near underweight), mostly fluids+I couldn't seem to keep any of my food down.

Enrique K  Hello Adrianne, usually you loose 20-25 pounds after surgery. I didn't experience those symptoms but I do have some sensitivity in my two bottom teeths only when I drink cold liquids. I guess this was because of all the hours with the tube in my mouth. Did anyone experience this feeling?

Gregg Nissly  Hi Adrianne, I'm 8 days post op and I still don't have much of an appetite, though it's gotten much better since I got away from all the unpleasant smells of the Hospital. And I've lost a lot of weight. I was 147.4 which I haven't seen since college in 1982!!

Every day food is beginning to taste better, so give it time. But I would still ask your medical team.

Adrianne Colatosti  Thank you all. I will be sure to follow up on all my questions and concerns when I go to the doctor Monday morning.... I am glad to hear that these are not rare oddities though...

Michael Meyer  Adrianne:

Narcotics also gave me a loss for appetite. I gained most water weight in the hospital. They discontinued the diuretic before I left the hospital and the water diuresed.

  I am almost two weeks out and food is tasting better now, but my appetite is still not what it used to be (although this is a good thing because I like food)! :)

Gregg Nissly  One other thing I forgot is that someone told us to buy Lemonheads and suck on one before each meal. I haven't tried it though.

Pamela Hill  Hey Adrianne, I too had my surgery the same day as you. My taste and smell has not been the same since. Anything irritates me!

anita egden  You will do great! Be easy on yourself when you come through to the "other side" - post when you are able

Suzanne Moore   You write exactly what I am feeling! I am two days after you, so will be watching your progress. You've got this!

  I felt the same way! Thinking of you and hope your surgery went/goes smoothly and your recovery is smooth.

Christine Oliva  Good luck Adrianne on your surgery. Hang tough because you will soon be on the road to recovery. Blessings to you and your family.

  All the best on your surgery Adrianne. Please remember you are not alone on this site. There are many people who have situations very similar to yours and who will serve as a wonderful support. It won't fix things, but for me, it has helped me process out things tremendously. I am sorry to hear about your disability insurance, but hopefully you can get financial support so you don't worry during your recovery.

I am 40 and had an AVR on Tuesday of last week. Was able to have a mini upper sternotomy and able to head home on Friday. Very sore and exhausted, but thankful to know that I had an issue so that it could be addressed. I found out 6 years ago after the birth of my second child. Like you, my symptoms were not "severe" and the only reason I knew I was having issues is that I knew exactly what to look for (and symptoms were mild). The dr. reminded me that younger people are able to maintain their physical stamina much better than someone who is older and even though their valve/heart may be compromised, the signs and symptoms won't manifest in the same way as someone who is older. I am sure this is a lot for you to process in such a short period of time, but I am glad you caught it!! Make sure you accept help from those people around you who offer it and ask if you need extra help. Wishing you a smooth surgery and a restful recovery.

Emily Rowley  I know what you mean about stress. I too probably won't be paid by work because I haven't accumulated enough time in Lou hours. Plus was told my Op would be covered by Health Insurance in Private then received a letter I would have no insurance when I turn 21, that's all fixed up now so I will just need to look around for Health Insurance after my surgery...

I WISH YOU ALL THE VERY BEST FOR YOUR SURGERY TOMORROW!
I WILL BE PRAYING FOR YOU.

Emily.

Patrick Kennedy  I understand and can relate. The waiting is tough. I tried to focus on the things I could control. I had my surgery back in May. Back to feeling 100%!

Tammy Pilcher  Hi Adrianne, I can relate to your story as I found out on Oct. 10, 2014 that I had a bicuspid aortic valve and it was already at a critical level of stenosis with an AVA of 0.39cm2. I had a CT and a heart cath the following week. I met my surgeon on Oct. 27, 2014 and he did my surgery four days later on Oct. 31, 2014. So exactly 3 weeks after I found out I was born with a BAV, I had it replaced with a bovine tissue valve and also got an aortic root enlargement with a Dacron patch. It was all so fast, but I'm actually glad it was that fast because just the 3 weeks I waited was the worst part. My surgery and recovery were not nearly as bad as I had built it up in my mind they would be. You can do this. Prayers and best wishes, Tammy

Clare Auten  My story is similar to Tammy. I did a half marathon Oct 28, 2013. Ran a 15k (9 miles) on Dec 15,2013. On Dec 26, 2013 I learned I needed surgery which was just 13 days later......super fast but almost two years ago. Doing well now. Hang in there.

Emily Rowley 
I too can relate to how you are feeling, how incredibly hard it is especially when thoughts of worry kick in. Hearing the possible risks & potential complications scares me, I have months to wait and still learning more information. And like you, there is no choice in having the surgery or not. Try to stay positive and focus on all the little great things in your life as well as your recovery to come :)

I love how this site is dedicated for all patients, where support is offered :D

Doran Herritt  I was a symptomatic all the way thru. Rode 13 miles the day before surgery. Although my journey took 6 months, it was a whirlwind. Sometimes I wish it would have been shorter as the waiting is the hardest part. Although with that said the more I studied and worked my plan the more confident I became. Two and a half weeks postop, I feel great. Remember thousands go thru this. You can too. Praying for your peace leading to surgery. Take care, drn

susan kotansky  I, too, went from feeling totally fine, never expecting surgery for this lifelong problem, to "don't wait six months to get this fixed". I was in shock, incredulous, and ready to run away as far as possible (as if that would fix my heart problem!) The decision making before and the waiting for the surgery were by far the worst part of this process. I am now in my fifth week post op, having discovered that my mitral valve was far worse than expected and now knowing that the "near miss" experience was closer than I thought. That has changed my perspective a lot...I feel a lot of gratitude, even when my patience wears thin and I want to be doing a lot more. soon soon soon. What you're feeling I think is what most of us have felt waiting to step into the unknown but it's going to be fine as you realize reading all of these success stories. As big a deal as it is, it's a really common procedure, with the most amazing docs in the world. I wish you the very best and look forward to your post op postings!!

Sophia Ridley  We are here for each other. You will get through this.
My case is same as many, I knew I had a murmur but told it was nothing to worry about and when I did see a cardiologist 10yrs ago he made me feel like I was wasting his time. It was just one of those things, like being able to roll my tongue.
I had some focused chest pain earlier this year which eventually got me to a cardiologist late July. To this day I don't know the cause of that pain but I'm thankful for it as I was asymptomatic and had no idea my valve was like a leaky bucket. Up until the TEE at the end of August I expected to be told I was fine so I was absolutely shocked to be told that it was severe and I needed surgery in the next 6 months. Coupled with an allergy to hospital detergent which was sending my pulse and pressure through the roof, I didn't have the best weekend. I knew no one who had had OHS. I have had wobbly times but approached this by turning it into a project, researching and talking about it. I have focused on the next test rather than the surgery. I've heard so many positive stories, many about people nearly twice my age. And finding this site was God sent. Now I'm focusing on beyond the surgery.

No one will deny that it's incredibly emotional to be faced with something that UNTREATED will shorten life expectancy. But, through the gift of modern medicine, we have a second chance. I feel that we are actually very blessed to have something thats treatable with such a phenomenal success rate. This is what I'm holding onto, and this site is absolute proof that this surgery is successful. I adore the posts about sporting achievement that I can only dream of. I couldn't run half a mile let alone half marathon when my murmur was "mild", I'm inspired by our heart brothers and sisters. Yesterday, I was flicking through next summer's holiday brochure... I sail yachts but too scared to sail a dinghy (silly, don't like falling in!) Maybe next year I'll complete that dinghy course! :)

Kelly Weisgarber  So many of us on this site can relate, it's easy to be overwhelmed. I found out about my bicuspid valve in February and surgery is Monday, one week from today. It's been a very hard 10 months. Stay positive and take one day at a time.

Doran Herritt  Deep breaths. Maybe this will give you some peace. I am 12 days post-op. Same thing as you, bicuspid aortic valve with severe regurgitation and an enlarging heart. I had surgery on a wed. Was home in a week. The new valve, couldn't repair my old one, is working great. I have little pain and seem to b feeling better everyday. Guess what. There r thousands of others just like us. These replacements are nearly routine now. And it sounds like you already took the most important step...finding a reputable cardiac hospital. You r going to do great. Stay busy until dec. do your research. Plan. And by Xmas you will feel like a new woman! Peace to you, drn

Adrianne Colatosti  Thank you Doran, I appreciate you and your post! The doctor does say that I may not think I have symtoms now but I will notice a huge difference once I am "fixed". My emotions are all over the place... I have had ALOT of medical issues in my life.... this being the most serious in my own opinion... I am so glad to hear you are doing well. I hope that you continue to heal and feel better every day!

Eddie Patton  Hang in there. Getting that word is hard to handle. Gather info, ask questions. You are at the right place for both. I am 4 months post op. You will find people here from days out to years out. Soon you will be one of us saying to people like you "it wasn't as bad as I thought it would be". Good luck and fire away with the questions.

Adrianne Colatosti  Thank you Eddie...I truly look forward to being one of the people here saying "it wasn't as bad as I thought it would be"!

Mindy Currence  Adrianne, I am waiting too. I am having my mitral and aortic valve replaced on Dec. 2nd and the waiting is the hardest part I think. Way too much time to think. Focus on getting your Christmas shopping done (get a friend to do it with you), and try to pre make some crock pot meals to freeze. Having friends help you do these things will not only get you prepared, but give you something to plan and do. We can do this! Don't worry about the emotional breakdowns...they happen from time to time and they are completely normal. This is a big deal...but we are so tough God knew we could handle it! :)

Enrique K  Hello Adrianne, I am 3 weeks post op and I have never felt my heart beat this way since I was diagnosed 3 years ago. When you get sad or worried just think how well you will be feeling after your surgery. Since I knew that my root and aorta replaced going into surgery I was not nervous and truly was looking forward to getting this done. I had a minimal invasive surgery on the right side of my chest 5cm long. If you need any advice or want another opinion your are in the right place. I wish you the best

Emily Rowley 
Firstly I hope every part of your heart journey goes well for you.

Last time I had Open-Heart Surgery my heart was enlarged too. This time my heart has not yet enlarged, but I have symptoms and my Cardiologist+Surgeon doesn't want to wait til it enlargers.

What type of Valve replacement have you decided on?

Best of Wishes,
Emily.

Michele Tracey  Hang in there my friend! I'm in my beging stages to and am so scared as well! You will make it! Praying for you my friend!

Adrianne Colatosti  Hello Michele thank you for the kind words. The unknown and the what ifs and the endless possibilities seem to be so over whelming at times. Praying for you as well. We need all the love and support we can get in these times!

Michele Tracey  Please don't be angry, we were born this way. Be thankful we lasted this long without surgery! Many people find out as babies and have had 4-5 surgeries because of their valve failing young! You lasted so long and thank God you caught this before it was too late! I too am scared of these tests, surgery and what is to come. But I convince myself of all the people that make it through on this sight and we live in such an incredible era of amazing technology and advancement that our surgery can be done at low risk! Again praying for you my friend! Hugs!

Michele Tracey  We do need this support Adrianne! I am 42 years old, young like you with 2 young kids and a hubby! I don't want to die and want to be around for 40-50 more years to watch my kids grow up! I'm in the same boat as you my friend! Our mind runs wild of what if's!, complications, etc. We have to think positive my friend. Live for just today...to the fullest!!! I am 1-5 years out from surgery and pray to go as long as I can for advancements in heart valves get better every year that go's by! Read my story when you have a chance! Hugs and prayers my friend! Keep your faith in God! He will carry you! I promise!

Clare Auten  Hi. Welcome to the website. My story is similar to yours. I learned on November 18, 2013 that I had a bicuspid valve. I learned on Dec 26, 2013 that I had an aneurysm and my surgery was January 9, 2014. I completed a nine mile race on Dec 15, 2013 and felt great. I was shocked that less than a month later I was in the OR. I was a tad older, 44. My kids were 4, 7 and 13. It is hard to believe that was all two years ago. Feel free to read my journal. Ask questions if you have them. Take care.

Adrianne Colatosti  Michele why are you waiting 1-5 years? Just curious... waiting is hard.... for me.... even just the weeks between doctors visits and follow ups.... I can't imagine... years.... my Cardiac Surgeon is fairly confident that he can repair my valve now rather than waiting and replacing it later.... but I dont know if he will still feel that way after he gets the results from yesterdays angiogram. I will know more of my surgical fate Monday when I follow up.... waiting is so hard...part of me wishes I could wait... years.... or avoid it all together.... another part of me wishes to just get it over with and start the healing process...

Adrianne Colatosti  Hello Clare, thank you so much for the warm welcome. It does put a different perspective on things for me to be apart of this page... and be in contact with others going through this as well.... I have an amazing support team at home around me.... but the internal struggles, thoughts, worries, fears, and doubts I think can only be understood truly by someone faced with the same situations... as negative as I sound... I am doing my absolute best to BE positive, to BE confident, and to face this head on as a positive process to fix something that needs to be fixed! One day at a time... one beat at a time....

Enrique K  Welcome Adrianne, I am 41 and full of energy and had aortic root and valve replacement Oct 9. I am recuperating at home well. All of us in this community have had surgery or will undergo surgery. Please go ahead and read my journal and ask questions. This is the right place to get information forget the internet. All this community is full of knowledge and willing to assist. I wish you the best!

Michele Tracey  Hi Adrianne, I am waiting because I have a bicuspid aortic valve with a 1.1-1,2 stenosis. Mine does not leak but is slowly closing. My heart is in PERFECT SHAPE other then the valve. So my heart is functioning with this bad valve and working fine without struggle. They won't do surgery on you if your heart is functioning as well as mine. Mine is not enlarged, thickened and my LV is normal size and my blood pressure is low. Im in a waiting and watching mode since I found mine early. It's very nerve racking, I know but I feel lucky to have found out before it was too late or my heart was to damaged. God has given us a second chance!

Michele Tracey  Clare they couldn't see your anyuersem on the ultrasound or on TEE? Where was your anyuersem located? Thank you!

Clare Auten  Michele, they didn't see the aneurysm on the TEE but it showed up on the CT scan. The aneurysm was in my ascending aorta.

Mindy Currence  Adrianne, I can certainly empathize with you as we all can. My emotional status has been a roller coaster ride! One day I am good, the next I can start crying at the drop of a hat. I think that is expected with such a hefty diagnosis/surgery. I have put off my surgery until Dec. 2 so I can complete my last class for my Master's degree and the waiting is ridiculous! In some ways, I think it was the right decision because I will have completed my degree, but other days I just wish it was over so I did not have to worry about it anymore. Hang in there! This website is great! We will love and support you every step of the way! You can do this!

Adrianne Colatosti  Thank you all for the love and support! I had my follow up with my Surgeon today... I am scheduled for valve replacement in 5 weeks.... Monday December 7th... will be here before we know it.