Nancy's Guestbook

Nancy Bukowski  Hi Kate, things are going ok for me.  My TEE came back as moderate regurgitation ( as opposed to moderate to severe) so now I am in the waiting game.  Another follow-up in six months.  

Kate Watson  I’m glad to hear nothing is urgent now! Hope you are feeling well and things are stable for a long time. 

Nancy Bukowski  Hi Kate, you're very welcome. I understand your reservations about travelling as I feel the same way. It's enough to have to go through this, and then place travel on top of it- ugh! Regarding my valve- my aortic valve, which was replaced due to a bicuspid aortic valve, is functioning fine. I am one year post surgery and never expected to have any issues now with my mitral valve. Prior to surgery and immediately after, my MR was mild. Now it is moderate to severe. Based on what I read, it seems the SAVR may have caused my heart to go through adverse remodeling, although I am desperately trying to get some answers from my medical team. I am concerned with the rate of progression and do not want this to impact my heart function. Hence, I am considering MR surgery. I feel very much like you do- life was moving along smoothly and boom! Please keep me posted as you continue to navigate through your situation.

Kate Watson  Oh wow I'm so sorry to hear you're going through all of that. It's so distressing when you don't think you even have to worry about any of this for a long time. I hope you get the answers you need. And please keep me posted on you too. Would love to hear what you learn.

Nancy Bukowski  It is very distressing and I am trying to stay positive.  I am continuing to research so I can ask all of the relevant questions.  I have also been spending a lot of time on the Cleveland Clinic website and thought this might help you.

https://my.clevelandclinic.org/podcasts/cardiac-consult/reoperative-cardiac-surgery-update

Kate Watson  Hi Nancy, Yeah, I had the first one today and I spent the entire day afterwards crying. It was just so much worse than we were expecting, not to mention the surgeon was callous. I knew he would be that way based on patient reviews and my cardiologist gave me a hint but he’s very skilled at high risk surgeries which is why I was referred. Apparently my other health issues plus third open heart would increase my  risk of death a lot during the surgery. So I am processing and looking for other opinions too, but it seems I need somebody very specific. Thanks for asking and I wish I had better news. How are you doing in your process?

Nancy Bukowski  Hi Kate, I am sorry to hear this.  It is a lot to process and work through.  And, it pains me to hear that the surgeon was callous.  I would have hoped that he would have displayed some empathy.  I would encourage you to reach out to the Cleveland Clinic for another opinion.

Kate Watson  Thank you for sending these. I did send my stuff to Cleveland but they are taking their time and I'm not sure how to expedite because I need to get moving on this asap. And I don't even know if I can make the trip there. I just had to cancel an east coast trip for my dad's 85th and my whole family was going to be there. I'm devastated about it but it means I have to get this surgery sooner than later.  

Nancy Bukowski  Hi Kate, I am sorry you had to cancel your East Coast trip with your family.  It’s very difficult to put everything on hold.  Regarding the Cleveland Clinic, did you use the following for a second opinion? I wish I could help you more, I am still learning to navigate through things myself. https://www.clinicbyclevelandclinic.com/virtual-care-frequently-asked-questions/

Kate Watson  Hi Nancy, have you made any progress or gotten any answers yet? I didn't use the second opinion thing at Cleveland because some patients said it was kind of generic. It's all been very confusing to me but I was told to email this address where I have since sent my records and this info they requested, then I'm supposed to be contacted by a nurse who will be reviewing my case with a surgeon HeartCenter@ccf.org

Nancy Bukowski  Hi Kate, thanks for the insight on the second opinion option.  I did not realize that.  Hoping you can get some answers soon.  Would you able to call them and escalate?  It is confusing and we don’t need confusing on top of everything else right now.  Please keep me posted on your consults.  It sounds like you are making slow and steady progress.

As for me, I have a TEE scheduled for tomorrow to try to narrow down what happened and determine next steps.  I am also trying to determine if Cleveland Clinic will accept my insurance as I work for a small company.  I need to keep forging ahead though, even though it’s mentally exhausting and I am scared.

Kate Watson  Hi Nancy, yes I hear you. It is exhausting and scary and confusing. How did your TEE go? I hope it was better news than expected 🙏
I found out which surgeon was assigned to my case at CC (which was only because one of my doctors here in CA saw their notes in my universal online chart). So I called that surgeon’s office today but the nurse who is supposed to talk to me to go over his suggestions is out until Monday. Apparently I wouldn’t get to talk to the actual surgeon until I go out there for more tests or the surgery itself, as I understood it. Not sure how I feel about that. In the meantime, I talked to another local surgeon who I feel much better about. So I’m more hopeful, (though I still don’t want to do this again!).

Nancy Bukowski  Hi Richard, believe it or not, those 3 siblings lined up on the stairs all by themselves!  You have to love the doggies as they are such great companions.🐶

Nancy Bukowski  Valerie and Daneen, very thankful to be on the recovery side!!  It’s been two weeks now since my surgery.  I am doing well- tired during the day though.  Continuing to walk daily and starting to get some interest in wanting to do household stuff.  Grateful for the time away from work as it would be tough to jump right back into the swing of things.  All of my follow-up appts are scheduled and I anticipate starting rehab in a couple of weeks.

Hope things are going smoothly for both of you!  Each day is a new day to get stronger!

Nancy Bukowski  Hi Michelle, thank you for the welcome!  Looks like your surgery is coming up - the waiting is the hardest part and you will soon have this behind you😀.

Nancy Bukowski  Thank you, Daneen! I appreciate your well wishes😀. I am so relieved that the date is here- one step at a time. Also, very grateful for this community as everyone has taught me so much and is so encouraging.

Nancy Bukowski  Thank you, Michelle!  I’ve been waiting for 4 months due to a cancelled surgery the first time that was out of my control- anxious to get this behind me.

Nancy Bukowski  Hi Grace, just another day in the office for my surgeon and team😀.  Thank you for the well wishes and I will check in soon!

Nancy Bukowski  Finally back in action here!  Recovery has been slow- trying to continue to walk each day.  I was in the hospital for 4 days and my brain is foggy.  The most difficult hurdle during my surgery was getting off the ventilator- I kept falling asleep and getting agitated which was making my BP go up- not good!  Other than that, things are going ok.  Very tired and looking forward to the downtime from work over the next few weeks.  Thank you for all of your support- it has been encouraging!!!!

Nancy Bukowski  Thank you, Samidh! I appreciate the well wishes. It looks like you are one month behind me. The waiting is the most difficult. I will keep you posted on my recovery.

Nancy Bukowski  Thank you, Valerie!  The waiting is terrible.  Looking forward to making it to the side that you are on💪.  I will check in when able to.  How have you been feeling?  Last I read, you were well on your way😀.

Nancy Bukowski  Thank you for the positive vibes, Cheryl.  I needed a pick-me up today.  I will keep everyone posted!  I, like you, have severe AS.  Thankfully, no symptoms.  The waiting is very difficult.  You’re getting close to your surgery date.  How have you been coping with the wait?

Cheryl Capps  From the time I met with the surgeon to the day of my surgery is not a long wait.  I met him on 17 May and my surgery is a week from Wednesday.  So 2 1/2 weeks.  That said, I’ve known I was going to need the surgery for 2 1/2 years.  Diagnosed in Oct 2021 with moderate to severe AS.  My cardiologist has been monitoring it since then.  In March 2024, my echocardiogram came back with severe AS.  Not much in the way of symptoms.  But time for the surgery.  The past couple weeks I’ve been telling close friends and family about the surgery, talking to people who’ve gone through this, getting helpful tips from them, reading updates from people on this website.  I even did some retail therapy, bought some new pajamas that open in front, bras that open in front, dry shampoo, unscented body wash.  I set up a group text of family and friends so my husband can keep them updated.  I’ve been keeping myself busy but with the surgery always forefront in my mind.  I like to be organized so I’ll feel better going into surgery that I’m all set.  Ask me next Tuesday, the day before my surgery, and I may be a basket case.   Always, always keep a sense of humor as well.  That helps me get through tough times.  

Nancy Bukowski  It sounds like you are well prepared, Cheryl!  I like the retail therapy and sense of humor advice😀.  My surgeon has told me that getting the surgery prior to a lot of symptoms should result in an excellent long term prognosis.  I’m going with it!

Cheryl Capps  I'll second that. Good luck tomorrow. Look forward to hearing how you're doing in a couple of days.

Nancy Bukowski  Thank you for the well wishes, John, and for your support during recovery. I hope that things go smoothly for you tomorrow. We will be recovering heart warrior buddies and it certainly helps to talk with others who have been through this. I am really looking forward to getting this behind me- I bet you are too!. Talk with you very soon!!!😀.

Nancy Bukowski  Yes, we do John!  Just saw your pic and you are ready to go!  My surgery is not until the afternoon.  See you in the recovery room💪.

Nancy Bukowski  You are looking good, John!  I hope recovery is treating you well and you are taking it slow and steady.  I am happy to be on the recovery side too.  My biggest issue during the surgery was trying to get off the ventilator.  Luckily, was finally able to accomplish and move forward from there.

Nancy Bukowski  I am looking forward to the recovery side, Daneen!  Also, curious to see how interested I am in returning to work when this is all said and done.  I see that you are improving each day and taking it day by day - that’s excellent!

Daneen Douglas  Yes, and I’m off work until end of July.  I’m wondering the same thing, Nancy! Hoping we will both be so bored and be feeling better than ever after our recovery. 

Daneen Douglas  Sleeping better, continuing to lose weight👍🏼, and vision issues getting better.  Stamina is slowly improving too.  Still coughing, which is exhausting. 3 weeks, tomorrow!  How are you doing Nancy?

Nancy Bukowski  I can’t believe it’s been three weeks already, Daneen.  Slow and steady progress is good as you have been through a lot.  I am doing ok- getting mentally prepared again as my surgery is a little over two weeks away (May 28th).  I’m anxious but have complete confidence in my surgeon.  Just want to be on the other side already!!

Nancy Bukowski  Hi Barbara, I understand your concerns regarding surgery.  Some days are better than others for me in that regard.  I am having my heart catheterization tomorrow morning and am very nervous about that.  When are you planning on having your surgery?  Have you decided on what type of valve?

Barbara deLoache  Nancy..I hope your cath went well! I have not seen a surgeon yet.. waiting for a CT scan my cardiologist has ordered. Hurry up & wait…so I have no idea about the valve yet. Have you decided?

Nancy Bukowski  Hi Barbara,  my heart cath went well.  It was not as bad as I thought it was going to be.  It looks like I only have one issue to fix during surgery, which is my severe aortic stenosis.  I’m taking the small wins!  Please keep me posted as to how you progress with your CT scan, etc.  and yes, hurry up and wait which is hard to do.  I have not decided on the valve yet.  Trying to digest everything and understand all of the pros and cons.  My appointment with the surgeon is next Monday and I am hoping to have some more information then to help me make a decision.

Barbara deLoache  Hi Nancy.. I think your valve replacement is 4/10? That is the day after mine here in NC. We’ll have to be buddies in our progress! Hopefully we will both have excellent outcomes.💕

Nancy Bukowski  Hi Barbara, my valve replacement is indeed on 4/10.  And yes, I recall your date being one day before mine!  You and I will be heart warriors for life!  We will have outstanding outcomes.  I’m looking forward to getting this over and done- I’m sure you feel the same.

Nancy Bukowski  Thank you for your response, Rose!  I did not realize a bovine valve may last 20 years.  I have been tons of research (good thing I enjoy reading!).  I hope you are doing well since your surgery and the accident that you had on your bike is definitely food for thought to take into account when deciding.  Everyone is so reassuring here - it’s very encouraging and helpful!