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Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

  • 1.  Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-15-2021 17:02
    Hello. I was diagnosed last week with moderate stenosis, BAV and moderately dilated ascending aorta (4.8cm). Dr heard a heart murmur during routine physical. Told me to come back in a month and if still there he would order an echocardiogram. Well... it was still there. Now I have to wait two months for a cardiologist and I'm extremely nervous and scared as I have no other information other than to wait for the cardio appt!!! How do you all keep calm?

    ------------------------------
    Erin Feaker
    IA
    ------------------------------


  • 2.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 10:04
    Hi Erin,
    I was recently diagnosed with AA of the ascending aorta as well and it is a hard pill to swallow. Mine was 4.3 cm and my root was dilated to 4.4 cm (upper limit is I think 4.6). The advice I was given is to keep my blood pressure in check and not lift anything heavy. I am seeing my cardiologist this Friday and I can tell you what he said about my condition (NOTE: do not take that as a medical advice and talk to your doctor). I also did the echocardiogram as soon as I saw the cardiologist and this is how my condition was discovered. I am shocked that as a regular checkup for people over 40 they do not do a echocardiogram as a routine so they can have a baseline, it is such a simple thing to do. Aortic aneurism is usually undiscovered but in your case you have a BAV as well. I will share a couple of links with you that were very helpful for me and also youtube has some videos from Cleveland Clinic that I found useful to educate myself on the condition:
    https://my.clevelandclinic.org/health/diseases/16742-aorta-aortic-aneurysm
    https://my.clevelandclinic.org/departments/heart/depts/cardiovascular-surgery
    https://my.clevelandclinic.org/health/treatments/17527-thoracic-aortic-aneurysm-surgery
    The other thing I would say is that you are not alone. I did not take the diagnosis well and ended up reading everything I can find online to calm myself down. The waiting to see what is going to happen is the worst part. This form started by Vic is excellent, lot of very competent people have joined that are very honest with their posts.

    ------------------------------
    Goran A
    ------------------------------



  • 3.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 15:58
    Thank you for your links and story. It's a shock for sure! I assume I will get another echo when I see the cardiologist as I have already had one. I will look into your links and truthfully doing my best to educate myself.

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 4.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 05:56
    Erin and Goran,

    I do not have the conditions you describe, but I am a 70 year old quintuple coronary artery bypass surgery survivor for the past 3 years, survivor of post-surgical pneumonia which left me in a ventilator and medically induced coma for 2 weeks with 50% survival odds, and had previously been told by my GP that I was a "ticking time bomb" when he first diagnosed my 180/120 blood pressure at the time despite my being a lifelong athlete (I was 48 at the time of diagnosis).

    I'm here to tell you that the last three years have been the best three years of my life.  I know that I have a chronic heart condition that will likely kill me some day, possibly in ten years but also possibly before I finish this post.  None of us has any guarantees and all of us are terminal.  I don't say this lightly, as I am acutely aware of this every day, having faced death and survived...for now.  And yet, every morning when I awake, every time I feel the sun on my face or see the tree branches waving on a windy winter day, every time I sit down to dinner with my long suffering wife who had to face her worst fears alone while I hovered between life and death, every time I provide life advice to my dear daughter, I am so profoundly grateful that I experienced all of this and no longer take for granted that I will be around tomorrow.

    And yes, I am an athlete still, at 70 years of age and, as Tennyson said in my favorite poem "though we are not now the strength that once moved earth and heaven, that which we are, we are, one equal temper of heroic hearts, made weak by time and fate, but strong in will to strive, to seek, to find, and not to yield."

    And so are all of us on this website, and so are you.

    Good luck and Godspeed on your journeys, which is part of the journey we all share.  And remember to just breathe, especially when you're in distress, focusing on the in breath and the out breath.  It will help.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 5.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 13:36
    How old are you?  Do you have any other heart history?  I'm assuming BAV means bi-leaflet aorta valve.  Do you have any other significant symptoms?  I'm tempted to say don't worry and just get your echo but it may depend on the answers to these questions.  I'm not used to having to wait 2 months to see a cardiologist unless the issue is not at all urgent.  You may be in that place.  Apparently, your doctor doesn't see the need to act faster which may very well be accurate.  Worry itself can have health consequences.  You might call the cardiologist office and explain your worry and see if you can get in faster.  As a minimum they owe you an explanation or an assurance that your condition is simply not urgent and the delay is not a concern. If they can't assure you of that, then you may need get a referral to someone who can see you faster.  In the meantime try not to worry or treat the worry as a separate issue that your pcp should help with.  I hope this helps.

    ------------------------------
    Ed M
    ------------------------------



  • 6.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 15:55
    I am 58 and I already had the echo. My GP called me in for the results and that's how I learned I had a bicuspid valve along with moderate stenosis and a dilated ascending aorta. He referred me to the cardiologist and the soonest I could get an appointment was March 8. I think you are right and I probably, for peace of mind, call the cardiologist office and talk with them. And no I haven't had any other heart issues. I get tired quite easily and have experienced episodes of lightheadedness and blurry vision as well as an ache in my chest. Just thought it was normal aches

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 7.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 19:28
    Geez... I put my Appt as March 8 but it's actually April 8. So foggy right now!!! I think I will call them and see what I can do!!

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 8.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 00:09
    Let us know what you work out or learn from your call to the cardiologist's office.  Hopefully you can either get in sooner or find that its not urgent enough to worry about the timing.

    ------------------------------
    Ed M
    ------------------------------



  • 9.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 18:14
    I called. They refused to speak anything about my situation with me as I have not met with the cardiologist as of yet. I told them if my concerns and they said they understood but it's their policy. I then asked about getting an appointment sooner and the best they can do is to get me on a call list in case there is a cancellation. Maybe I'm just not bad enough to be concerned? Although to me... not knowing is a concern. My GP didn't seem to concerned other than to hand me off to a cardiologist. I guess I will just wait and monitor myself. When I'm tired I'll rest... when I'm sore... I'll slow down. None of my results were explained to me except that I have a valve disease and will need replacement at some point. When I asked about the numbers I was told they were just measurements so everything I've learned was from researching BAV with dilation of ascending aorta.

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 10.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 21:55
    Hello again, Erin
    I'm sorry your call was treated so brusquely.  Your anxiety deserves a supportive response and some problem solving. To cite "policy" is neither supportive nor helpful to your overall well being. One's emotions are relevant. You're not having a car repaired.

    I commend you on seeking out information about the diagnosis because you'll be better prepared when you do see a cardiologist. Are your choices for physicians limited where you live?

    Please stay in touch with the group here online.  Anxiety about our situations is a common thread amongst us all. You are not alone.

    Doris

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 11.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-18-2021 08:49
    Thank you all for your help and support. I plan on letting my primary know the timeline and ask for clarification from him of the "urgency" of my condition. He never mentioned the dilated ascending aorta... I read that myself on my echo report so not even sure he paid attention to that. At least my report says "moderate" (4.8 cm) so I can rest a little bit easier that I'm not considered severe. Also moderate on the stenosis. So ... I plan to talk to him again. I did try to get an appointment elsewhere in my area but all are booked until April anyway. If I receive any additional news I will update all. I really appreciate the links all have provided as well as the support. Fantastic caring people here. Thank you!

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 12.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-18-2021 09:09
    You have exactly the right spirit to do well, Erin. I agree with you that the word moderate is important information. Stay in touch...
    Best wishes
    Doris

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 13.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 22:54
    I can appreciate that this wait period is uncomfortable for you.  Whether or not it puts you at any medical risk is a whole other question and I'm afraid I don't know enough to make that judgement.  The answer probably turns on exactly how dilated the aorta is.  Does your pcp who referred you know that you're having to wait til April 8?  If so, has he determined this wait period does not put you at medical risk?  If not, you might contact him and explain the timing you're having to deal with and see if he has any ideas for speeding things up.  Perhaps he can refer you to a different cardiologist (or you can find one) who may be able to get you in sooner.  Somebody owes you an answer but whether you get it is anybody's guess.  You might be able to answer it yourself with continued research.  Below is a link to an article that might be of some help.  If its too technical, the summary paragraph may be all you need.

    https://www.ahajournals.org/doi/full/10.1161/circulationaha.108.795401#:~:text=Compared%20with%20those%20with%20a,warrants%20aggressive%20control%20of%20hypertension.

    ------------------------------
    Ed M
    ------------------------------



  • 14.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 14:11
    Erin,
    Given the initial consult with you PCP,  you should not have to wait 8 weeks for a simple echo cardiogram and consult with a cardiologist.  The procedure takes less than 30 minutes and is non-invasive.  This will provide the cardiologist with the baseline information to decide next steps to complete the diagnosis.  When you meet with the cardiologist, bring a family member and a written list of questions with you, if that's permissible.
    All the best,
    Vic

    ------------------------------
    Victor Fabry, CEO
    Greylock Advisors, LLC
    Short Hills, New Jersey
    fvfabry@gmail.com
    ------------------------------



  • 15.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 16:01
    Hello

    My primary actually had me do an echo and that's how we found out about my BAV and the AA. It's just waiting so long for the cardiologist appointment to guide me in what to do next without a full understanding of my situation right now that's hard.

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 16.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 23:28
    If the cardiologist is uncooperative about your having someone with you of your choosing or of you having questions you wish answers to, imo, you need to find another one.

    Also  would want the non-invasive echo done sooner if possible.  And will just share that 4 months post surgery for dissection, they were encouraging me to meet with surgeon for follow up after CT and echo.  After waiting hours when my name was called, I was told I could go home.  I didn't get upset because as I guessed the results of the echo and CT done earlier that day were probably accessible to the surgeon so he knew, along with a fax I'd sent prior describing my recovery and activity level, that all was well enough.  OUr visit was conducted virtually, or I should say by phone when we couldn't get a connection, and he doesn't want to see me for a year.  SOmetimes what can help relieve anxiety is taking a more assertive stance and not letting ourselves be "bullied" by these folks in whose  hands we place our well-being.  They are  no gods, they do not own us, and we're still in charge of US.  Take good care and keep us posted.....

    ------------------------------
    Robin Rosner
    N/A
    Cleveland OH
    ------------------------------



  • 17.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 10:17
    Hello Erin
    I agree with all the comments and advice, especially to find a way to have the echo sooner.  There's no reason to have to wait so long with worry.

    I recommend you consider getting a second opinion from the Cleveland Clinic. I know you're in Iowa but it's worth the effort because they are very used to giving second opinions and make it easy to go there for care.

    I had my CABG in Columbus OH with complications. I was not doing well at all at home and decided to get consult at Cleveland. They saved my life and I get my cardiology  care long distance now at the Cleveland Clinic.  There is a hotel connected to the cardiology building by skywalk.  Someone can meet you from CC at the airport if you want. You can start the consult process online at the website.  I've not had a long wait anytime I need an appointment.  I get labs and tests in Columbus for virtual visits with my cardiologist there.  I also maintain a relationship with my local cardiologist.

    I wish you well and again urge you to seek earlier care.
    Doris

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 18.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 10:36
    Nurses know what they are talking about...in this day and age, so much can be done virtually or even by phone, so you can probably be a patient of the clinics and stay right where you are. 
    robin





  • 19.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-17-2021 18:10
    I ha e already had my echo with my GP. Now waiting until April 8 to discuss with Cardiologist

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 20.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 05:59
    Hi Erin,

    Not a doctor but my cardiologist and all the articles I have read online also mention to watch your blood pressure when having an aortic aneurism. You might want to keep track of the blood pressure on a daily basis (I usually do morning, mid day, before bed). The waiting part is the worst when you have all this questions and no answers and even when you see your doctor they might not have all the answers as well. Some people have also gotten a second opinion from other places like the Cleveland Clinic (top notch place) but you might have to pay out of pocket for a consultation and I believe they do it over zoom if you send them your results. I am seeing my cardiologist in couple of hours.

    ------------------------------
    Goran A
    ------------------------------



  • 21.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-16-2021 19:13
    Dear Erin, one way you can stay calm is knowing it was caught in time and you didn't have a medical emergency to find out, like so many people on here. My heart problem was "discovered" too. When I read some stories about how some people were brought back to life makes me count my blessings. Another thing is that your not being rushed off to the hospital to have surgery. Rest in knowing that you can surrender that worry and count your blessings. Take care of yourself until you can see everyone you need to. If you don't feel bad then don't act sick. Live your life the way you have been. You got this! God Bless.

    ------------------------------
    [Carrie] [Kashani]
    Parapro
    ISD
    [White Bear Lake [MN]
    Carrie
    ------------------------------



  • 22.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-18-2021 22:35
    its very stressful Waiting. i guess if they think its ok to wait 2 months fir the test then your situation is not so dire. However, i am a string believer that the anxiety of waiting and worrying is a negative factor.  please call and tell them that you are available to come earlier if there is a cancellation.
    Years ago my open heart valve repair was scheduled for 2 months away but a cancellation came about and i had the surgery much sooner.
    in the meantime you can organize your family and support plans.  While we waited, my husband and I updated our wills and signed powers of attorney, went to the dentist , had haircuts, said prayers. read a novel.  Learn to avoid stressful situations ( no arguments in your presence , don't  watch bad news on TV. Learn some jokes
    Good luck . you are on the right track, coming to Mended Hearts for support

    ------------------------------
    Marilyn Rosenhouse
    Dallas TX
    (214) 850-0219
    ------------------------------



  • 23.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 08:17
    Hi Erin,

    The good news: You found this before it found you! Great job by your doctor on hearing the murmur and having you move forward. An aneurysm of your ascending aorta with a BAV is very common. For perspective, at Cleveland 5.0 is the surgical benchmark. I can tell you that it can take years to get there. But at that level, here in San Diego (I did go to Cleveland for the surgery) they upped the monitoring to 2x a year. By the time I had surgery I was 4.8-4.9, but my valve was the deciding factor. One thing I learned in my journey is that an echo/CT/MRI read by a cardiologist or radiologist can have different measurements than one read by a surgeon. They can wind up measuring things differently. At one point, I had an MRI and my cardiologist was concerned (it was 4.9). He sent me to a surgeon, whose measurement was lower. Also, since you're in Iowa, if you have the ability to travel, consider a second opinion from a surgeon at Mayo. (I started getting second opinions from a surgeon at Cleveland several years before I had surgery.) Had I not needed the surgery urgently, I would have probably also been seen there. We have relatives in Rochester who had been urging it. I did a loose consultation with one of their friends, a former cardiologist there, who had recommended a surgeon. Regardless of where you have this done, key is staying on top of it. But you already know that! Cheers.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------



  • 24.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 11:05
    Good News!!! The cardiologist office just called and had a cancellation... I go talk with him Monday! It will be good to know what I'm actually facing finally!!!





  • 25.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 11:24
    Hurray Erin! Do you have someone to go with you? Start writing out your questions.  Rooting for you.
    DE

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 26.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 11:42
    Erin, just remember there are no stupid questions.

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------



  • 27.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-19-2021 12:33
    Erin,
    I'm glad the wait-list strategy was successful and you were able to confirm an early consult. Remember to prepare a list of questions for the cardiologist about your condition; MRI and/or CTA required, 
    pre-surgery risk, and surgery risk and post surgery recovery. Finally, if you any doubts about the cardiologist, you always get a second opinion.
    Good luck,
    Vic
    --
    Victor Fabry, CEO
    Greylock Advisors, LLC





  • 28.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-20-2021 06:39
    Hi Erin,

    Just saw my cardiologist and one of the things that he mentioned (and I heard this elsewhere), if you have to do surgery go to a hospital that does a lot of this type of surgeries. My cardiologist is based in New York City so he said that all the big hospitals in NYC are good. I know a lot of people go to the Cleveland Clinic and there are others around the country but I am only familiar with the once above. I personally went to the cardiologist with my wife so she can catch things that I missed and I had my questions printed out (wife laughed about it).

    Herb out of curiosity how long did it take you to recover after surgery and did you hit any roadblocks?

    ------------------------------
    Goran A
    ------------------------------



  • 29.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-20-2021 08:25
    Mayo Clinic is only a couple hours north of us so would most likely be where I will go for a 2nd opinion. My husband is also going with me to the appointment on Monday. I do appreciate all the advice and ideas all of you have given me. Will update after my appointment on Monday!!!

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 30.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-20-2021 09:02
    Hi Erin,

    The surgeon I would have been referred to, by the retired cardiologist, was Dr. Pochettino. This cardiologist is an imaging specialist; he worked in surgery (where echos and TEEs are done during the procedure.) He raved about Dr. Pochettino, and he had worked with them all and had been there for a few decades. All of this is just point-of-reference. There were also quite a few comments about him on another forum, and patients there had nothing but praise. He appears to be quiet and kind ... and good. The cardiologist I spoke with also recommended Dr. Crystal Bonnichsen, as the cardiologist; at least that's who he would have set me up with for my initial visit. I'm sure no matter who you have you'll be fine. Mayo doesn't beat a big drum; it lets its reputation do that. All of the Mayo valve patient stories I've seen have been extremely positive.

    Best with it,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------



  • 31.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-20-2021 09:02
    Erin:

    I’m 14 months past surgery to replace my BAV and repair an ascending and arch aneurysm at the Cleveland Clinic, with a very smooth and fast recovery. While many places here in Texas offer this procedure, I decided to go with CC just due to the fact that they typically do many hundreds of these exact procedures each year, rather than at most 25 or 30 with only one or two experienced surgeons at the local options. In short, nothing they could have found in the surgery would be beyond their experience. I’m lucky to have been monitored for this for years, with time to prepare.

    There are a number of excellent options - Cleveland, Mayo, New York Presbyterian/ Columbia, Johns Hopkins, and many others. There can be pressure to ‘stay local’ but do what is right for you. Luckily Cleveland Clinic was in my insurance plan, and in my case was extraordinary in providing care. My local cardiologist was shocked and amazed when I walked in three weeks post surgery at how well I had recovered. I was back to work in a little over five weeks.

    Having a written list of questions was helpful in my case as well.

    Best wishes, and our prayers are with you.

    Keith


    Sent from my iPad




  • 32.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-21-2021 19:57
    Hi Keith,
    Just out of curiosity how long did it take from first discovery to surgery? I know everyone is different but I am trying to figure out the speed at which this develops.
    Thanks,
    Zoran

    ------------------------------
    Goran A
    ------------------------------



  • 33.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-20-2021 08:51
    Hi Goran,

    My recovery was pretty straight forward. I was back to my old walking routing (with steep hills) 2 months post-surgery. That's also when I started driving. I had a full sternotomy and my wife was adamant that I wait the full two months, and while in the car sit in the back seat with the heart pillow over my chest. As silly as that sounds, I will say my chest never really hurt and healed exceptionally well.

    The only complication I had post-surgery was something called ileus, was some gastro distress, medically referred to as ileus – something that can immediately after surgery. (I'll spare you the gory details.)

    The good news: It resolved itself in a few days, with a highly restricted diet. The bad news: When they did a scan to make sure I didn't have any blockages, they found what appeared to be an abscess on my prostate. That set off all sorts of alarm bells because they don't want some infection in your body with a new heart valve, which is vulnerable for the first six weeks.

    That led to a spirited debate between the urologists and infectious disease team and my surgeon at the Cleveland Clinic on whether I should have the abscess drained. The urologists and infectious disease folks thought I should have it done. (This was about four days post-surgery; you can imagine how that made me feel.) This is where having a surgeon who is also has his PhD in something dealing with blood disorders comes in EXTRA handy. He had never before seen a post-surgical prostate infection as a valve risk, which is kind of funny because he has seen pretty much everything. But he said one thing that wasn't going to happen is me having somebody fiddle around with an abscess immediately post-surgery because that has risks of its own.

    Instead, he sent me home with a 6-week coarse of an oral antibiotic AND a nasty intravenous one. That meant having a PIC line snaked through my arm to my heart (not as bad as it sounds, though anybody who tried telling me that at the time got the reaction you are probably having - I FREAKED OUT!) Then, I would sit with a drip in my house for an hour and a half a shot 2x a day for 6 weeks. That meant home infusion people and a nurse once a week to check on me, take blood and clean the line. My wife was responsible for doing the actual hookup. That wasn't as bad as it might sound, but initially....SHE FREAKED OUT. (Because of the PIC line, the actual connection is just a twist on device. Pretty easy.)

    In the end, I viewed it as a big annoyance because my heart recovery was going so well. A CT scan at 6 weeks showed no access.

    Other than that, I was sitting at my desk working (which meant writing) most days once I got home, which was Day 11. I didn't feel a need to sit and do nothing. (Always resonating through my head at this point was a conversation I had with Vic, who started this thread, who admonished me pre-surgery to take it easy. Sorry, Vic, doing nothing would have been worse for me. Then again, sitting at my desk, limiting my phone calls and keeping my brain active seemed to work.) It took awhile for my brain to come out of the haze. The speed of my writing, plus my energy, seemed to improve and get "back to normal" at the same rate with my exercise tolerance.

    All of this, Goran, is a long-winded way of saying: No real roadblocks, thankfully. I will say that having read this forum and others for years, I have seen many many many stories of "roadblocks" that must've caused great concern by everybody involved at the time...but in the end turned out OK. See's Ira's posts here for a lesson on that. You know going in that there are risks and I think it's important to get your head around the fact that this is surgery and complications/incidental findings are real and possible. But so is walking outside (or the older we get, inside) your house with no surgery. In the end it's not always but usually "all's well that ends well." It's all part of the journey. I tried to keep a pretty upbeat attitude and a sense of humor through it all. Self-deprecating humor, in fact, was my best friend.

    Cheers,
    Herb

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------



  • 34.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-21-2021 19:55
    Hi Herb,

    Thanks for sharing the best way to learn I think is through what others have gone trough. I ask because the more you know the more you can monitor yourself and make better decisions. In my case I did not expect this kind of condition at 44 so it floored me and to tell you the truth I did not pay too much attention to my cardio since I was an athlete in my youth and nobody in the family had any hart problems (some blood pressure maybe but nothing bigger than that). According to my Cardiologist the BP had a lot to do with my aneurism so I am watching that as a hawk. Let's see how I progress.

    Erin stay strong and it is a good idea that you are brining your husband to the appointment. I brought my wife both times and she caught things that my doctor said and I missed. She also thought that I ask too many questions however they were all well thought trough.


    ------------------------------
    Goran A
    ------------------------------



  • 35.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 06:56
    I believe you can never ask too many questions in situations as this. I like to be informed and want to be prepared prior to any type of surgery. I'm so glad I'll hopefully be getting some clarity today. I say hopefully because, well, as we know not all doctors provide clear answers. I felt the same as you... shocked!!!!

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 36.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 14:18
    Yeah I remember how poor at communication my Cardiologist was right up until I started learning all I could about my condition, and treatment.  Suddenly he was so much smarter and helpful. Turns out we were just speaking different languages.

    Make sure you write all your questions down and tske them with you. It's too easy to get sidetracked and forget. I also recommend a journal to document any symptoms or issues so you can share that information as well.

    Good luck, hope you walk away fully informed snd more comfortable with your situation. We're all rooting for you

    ------------------------------
    Warren
    TucsonAZ
    ------------------------------



  • 37.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 16:57
    ��--
    Victor Fabry, CEO
    Greylock Advisors, LLC





  • 38.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 20:34
    Saw the cardiologist today... he confirmed everything. He is of the mindset to do nothing until my aneurysm gets to 5.5 depending on my symptoms along the way. Having a cat scan on Monday to get a better 3D image of the size of the aneurysm and also to make sure I don't have one in my stomach as well. Other than that... not to lift more than 30 lbs, no straining, start moderate walking but no weight lifting and eat more fruit/veggies, lay off the salt. Two new meds to take that "may" help but won't hurt. 6 month scans for the aneurysm and yearly scans for the valve. Nothing can "fix" the issues other than surgery. However surgery won't happen until the risk of waiting is worse than the surgery. Once I get the scan results from next Monday new scan, then I will get a 2nd opinion from Mayo at some point. 





  • 39.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 21:46
    It sounds like you had a good visit with the cardiologist and are on a sound path.  The second opinion at Mayo can't hurt.  I notice he said to lay off the salt.  I'd interpret that to mean keep your blood pressure under control.  Given that you've got aortic dilation, this makes good sense.  I'd keep an eye on it at home if you don't already.  Home machines are a good investment.
    Best!

    ------------------------------
    Ed M
    ------------------------------



  • 40.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-23-2021 07:04
    It was a good visit I guess. Was kinda hoping I'd go in and he would tell me they had misread my echo and I was just fine!!! And yes... watch the BP... I used to have one but will probably get another. All in all it gave me some more clarity.

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 41.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 22:22
    Great report! Just a suggestion - I would get the second opinion before you hit 5.0. There are all sorts of calculations that go into this but... peace of mind. Caveat: I'm just a guy with a medical degree from Google U, so take what I say with a grain of the sale you should reduce!

    ------------------------------
    Herb Greenberg
    San Diego CA
    ------------------------------



  • 42.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-23-2021 07:00
    Oh I so agree... it may take a couple months before I get it but that's my plan.

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 43.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-22-2021 22:41
    Thanks for the results of your appointment,  Erin. Sounds like a sensible plan. And the importance of your situation merits a second opinion at Mayo.

    I hope you're feeling empowered and supported

    Good luck!

    ------------------------------
    Doris Edwards
    Retired RN
    Dublin, Ohio
    ------------------------------



  • 44.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-23-2021 06:56
    Thank you Doris. In this situation I feel that 2nd opinion is extremely important!

    ------------------------------
    Erin Feaker
    IA
    ------------------------------



  • 45.  RE: Newly Diagnosed BAV w/moderate stenosis and dilated ascending aorta

    Posted 02-23-2021 09:43
    in addition to Warren’s advise to write down your questions before you see the doctor , leave room on the paper to write down the answers. In our “excitement “ we often misremember what the doctor said. Also it’s important to bring someone who hears well ( spouse) to come too. 4 ears remember better than two

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655