My husband washing my hair with this dry shampoo cap. He thought it was funny...
4 weeks and 5 days out
Journal posted on March 24, 2020
My AVR was 4 weeks and 5 days ago. I’m doing well. I walk a mile or a little less twice a day, and do at home exercises 2-3 times a day, sometimes with 1.5 pound weights. I have taken about 10,000 steps per day the past week. I’m still being careful of my sternum, and I get tired and need rest. The meds that keep my heart rate and BP slower make it hard, so I look forward to being off that in a couple months. I had a ministernotomy, but I still have pain and take Tylenol 3 times a day. It feels normal, except I do have one place lower right of my incision that is extra painful and more sharp, and isn’t improving yet. I worry a little about it, but I think it’s likely from where the incision was pulled apart. I know it takes time for the muscles and nerves to heal around that area, and it’s still early. I worry about those wires I assume are in there (I forgot to ask). Overall I wanted to report I’m doing great and can do a lot of things. If you’re facing surgery, you can do this, I promise. If you experienced that sharper pain in one spot, I’d love to hear from you to see if that’s kind of normal. My surgeon at 4 weeks said it takes time. Take care,
I made it! One week ago today I had my aortic valve replaced with a bovine valve and an aortic root enlargement to put on a larger valve, and all done through a mini sternotomy. It wasn’t easy in the hospital, but I’m home now and one day at a time. I hope over the next weeks I can give good and positive advice, feedback, and thoughts to those going into and coming out of surgery as well. Thank you everyone for the kind words and support.
Hello. I had an interesting second opinion today I thought was worth sharing. I was scheduled for aortic valve replacement on January 23, full sternotomy with a bovine valve. I was all set, prepared mentally and physically, at work, and at home. I did not want to put it off any longer. However, after doing a lot of research here and otherwise, I was feeling like I had not done due diligence in seeing if I was a candidate for the ministernotomy as a first time isolated aortic valve patient. My surgeon said he did not do that surgery, but referred me to his partner who does. I met him today and had a completely different experience. He said he will start with the mini always for those who are candidates, but will switch to full if necessary. He said no additional risks as he will make that decision early and before I am on the machine too long. He felt both the full and mini were very similar, with the mini maybe having a little less pain and better recovery but same restrictions. However, he did say he was less concerned about that and more concerned about the size of my valve and future surgeries (This surgeon is a part of the TAVR team of doctors at my hospital. Both surgeons felt I was not a good candidate for TAVR now at age 48 because it slips inside the old valve and will likely last 10 or less years at my age, making 2-3 more TAVRS unlikely). This doctor said it is important I do a replacement now that will set me up for a TAVR in the future because my bovine valve will only last about 10 years because of my age. He said my valve measures 19mm which is the smallest valve they can replace. If I just replace it with a 19mm valve now, it might be too small to fit even one TAVR valve inside, not to mention 2 or 3. He suggested a possible aortic root enlargement procedure and putting a 21-23mm valve in so I can ensure there is enough room for a TAVR in 10 and 20 years or more. Interesting the first surgeon didn't mention any of that.
So I changed my date to accommodate his schedule to February 20th, which is a big bummer, but what is 5 weeks to prepare for the next 30 I guess. In the end, this new surgeon will do the mini if he can, but full if he has to, do an aortic root enlargement if he needs to, but won't if he doesn't. Keeping my options open. This instead of just the full sternotomy with my current size valve no matter what that I had planned.
Just thought I would share as I have not seen much info on re-surgeries being shared. I learned that it is good to get a second opinion not just to talk about options now, but about how what I do now affects what I can do later.
Hello everyone. I've been following this blog for over 8 years, since I found out I had a bicuspid valve and aortic stenosis. I've been in awe of your strength, and so thankful for the information and encouragement. My valve replacement is scheduled for January 23, 2020. I'm nervous. Is it the right time? What valve should I choose? Which procedure, surgeon, etc. I'm trying to make educated decisions, and trust in God's peace and understanding. My surgeon does not recommend TAVR with my bicuspid valve and younger age (48). He feels the best way for me is full sternotomy with a bovine valve, or mechanical valve if I'm ok with the blood thinners. I wonder sometimes if the surgeons recommend what they feel like they do best? I'm mostly afraid of the recovery. Also scaring my family (husband and 3 kids). There's a lot to think about and do over this next month. Wish me luck! Merry Christmas everyone.
Hello. Has anyone had any experience with Kaiser? Specifically I am wondering if anyone has had valve replacement there, was the experience positive, and did/do you have a good relationship with your cardiologist? Thank you so much.
It's been a long time since I've checked-in on my journal. I apologize to anyone who left me a message with no response. I have been trying to move on with life and not think about this impending surgery. I continued to take care of my family, I fulfilled a dream and published a fiction novel, and have recently gone back to work part-time after almost 14 years at home with my kids. My valve (AVA) still measures around 1.1 in my echoes with some chest pain and shortness of breath, but I am ignoring most symptoms until something obvious rears it's ugly head. I'll be 46 in July, two years after I was 8 days away from surgery, and my cardiologist tells me I won't make it out of my 40's with this valve. I wonder though. Love all your posts and thank you for sharing. When It's my turn I will be well prepared, and will return the favor. Take care everyone.
Had my cath yesterday and the numbers came back with 1.4 measurement. Strange because all 4 echoes show .9 or 1.0. After preparing for months to have surgery on July 22 we are now postponing and monitoring until another echo in October. I'm a little happy but mostly bummed as I was so ready to be done and on the road to feeling better. Strange there was such a discrepancy. Anyone ever see that before?
It's been a great year of reading all of your stories and following your journeys. I see such love and support from all of you for each other. I hope you know how amazing you all are.
I was originally told I will need heart valve surgery in 8-10 years (two years ago). That has now changed and I have been told that it's time to schedule my aortic valve replacement. The good news is that as long as my symptoms do not worsen I was given a window to decide when it would be a good time for my family to have it done. I have chosen July and my first "staging" appointment is July 6th. I am not sure exactly what will happen between July 6th and my actual surgery, but I was told I don't need to do anything except research and make choices about which valve I want and location/surgeons in my area.
It's all pretty scary but reading what all of you have to say has been a great help. I will be 44 years old in July and am married with two boys age 8 and 13. I know I want to be around for a long time to see them grow and start their own families, so I want to choose the valve and procedure that has the best long-term prognosis for me. Right now I am leaning toward the St. Jude mechanical valve as I would like to become active again post surgery and it seems like the best option. However, I am scared of the blood thinner and it's implications. I see the procedure Adam had and wonder if that is an option for me too.
In June we have a trip to Hawaii planned that I would like to take before surgery. I read Adam's book and his pre-surgery trip makes me question that decision, but I do feel God's will is at work in my life and I will know by then if I should go.
So much to think about. Take care everyone and I hope to share by surgical journey (and anything else worthwhile) to those who can benefit.
I have been reading all of your amazing stories, and learning so much from all of you. I see that a lot of you are very active and play various sports, run, bike, and much more. I try to read closely to see what your exact diagnoses's are and how you are able to keep exercising strenuously right up until it is time for surgery. I see so many positive attitudes and how many of you will not give in to these heart diseases, keeping at your active lives and staying in shape. I want to be that way too, but I am struggling with some things.
I am wondering how some of you are still able to exercise strenuously with these various heart valve problems? When I was diagnosed last spring I was told that even though my bicuspid aortic valve was considered moderate or moderately severe (.9), that I should stop exercising strenuously due to risk of congestive heart failure or other damage to my heart. I was told I really should not be running at all. Since my main form of exercise was playing competitive soccer, softball, roller blading, and these kinds of activities my understanding has been that I need to change. That has been difficult as I find myself getting bored with or put off walking, and then consequently don't exercise at all. I have gone from frequent strenuous exercise to almost nothing (coaching soccer and a few walks a week). I can feel my body getting weaker and I feel less healthy.
My question is this. Has anyone else been told not to exercise strenuously even though surgery could be a long ways away? Do any of you just do it anyway, watching for symptoms and being careful? Have any of you found ways to exercise and stay healthy while not lifting weights and running? I know there is yoga and other great activities that are not strenuous, but I admit I am struggling to form an attachment to any that motivate me to get out there and do it. Not exercising enough is really starting to effect my strength, motivation, and energy level, but I want to follow my doctors orders so I am here for my family in the long run.
I would love any feedback you might have on this subject. I want to be a positive, healthy fighter of this disease like all of you.
I am excited that I found this blog. Reading through your stories has already helped me see what kinds of things I may be facing in the future, and has given me a feeling of community. After going in for a routine physical my primary care physician suggested I have my heart murmur checked by a cardiologist After a visit and tests over a two month period I found out that I have a bicuspid valve that has caused aortic stenosis and calcification. There has been some discrepancy whether or not a .9 aortic valve area measurement is moderate or severe, so I am not sure how close I might be to surgery. My cardiologist says it could be 10 years, or 1 year. Time will tell.
I have played soccer competitively for many years and have been told I have to give it up due to risks and the possibility of damaging my heart. It has been a hard lifestyle change. I wonder if any of you at this stage of diagnosis had a hard time figuring out whether something is actually a symptom, or just anxiety or imagination? My cardiologist says that because my stenosis is moderate, the few things I do feel are probably not caused by my heart valve. I'm just not sure, because others have said my measurement is moderately severe.
I am now 42 years old. I am married and have 3 boys. Right now I think we are all in a state of denial and uncertainty. We just go along like nothing has changed, but all of this does roll around in my head quite a bit. Thanks for listening and I am looking forward to reading your amazing stories as I go through this myself. Take good care.