Joanne's Journal

Joanne Heckmann  ... and just made that appt for Jan 15.  Called Dr Gerdisch's office, they hadn't gotten the insurance authorization yet for the CTs, the person handling that is out until Monday.  And of course my insurance is changing on Jan 1 to original Medicare + Plan N.

At least my ferritin level is up.  It was 28 (iron deficiency without anemia) a month ago, now 54, so the trend is good.  Least side effects iron supplement is a chewable meant for bariatric surgery patients.  Still rough though.

Richard Munson  It has not been a good week for you. There is only up from now on. No class having a baby and axing your appointment. Its all about choices. Lol. I had to reschedule my first surgical consult due to his getting covid and i was upset. If he had pulled a maternity leave on me i would have been seriously ticked off. 

Kimberly Eisenhut  Sorry to see you are having difficulty with scheduling, I sure can understand. Better days are ahead and just take it a day at a time. I'm learning myself to have a short list of calls, then just leave it rest of day and try to concentrate on the moment. Try not to let it consume you. Also, leave messages in my chart to Drs so you have proof of when you contacted them and what was or was not said or answered. 

Valerie Allen  They usually ask you to stop herbal supplements for a while before surgery so everyone should check with their surgeon.

Joanne Heckmann  Some herbs are fine, as noted by this herbalist, who both had a young son who needed several surgeries, and who had a hip replacement herself.  Most allopathic doctors are not taught about herbs and will knee-jerk deny them.

J Alexander Lassally  All I can say is you will have so-so-so many drugs the day of surgery and after, that you will want to check with the surgeon and most importantly the anesthesiologist before hand... 

Richard Munson  That is why i sometimes go to the doctors office or the pharmacy in person and lay down the law. They see a 6-5 inch angry man staring at them, it can shake things up. I did it once for nancy at cvs and she was grateful. I think she was anyway. She was getting the runaround on the phone. 

Rose Madura  Good point. I once went to CVS in person and said I would stand here and wait for them to go through the shipment to get the drug my husband needed.  Runaround on the phone was that it wasn't in. It was..they just needed to unbox it. 

Deena Z  It’s hard enough to deal with heart issues, let alone access to meds and docs.  Good for you to remedy.

Joanne Heckmann  Just an update... local cardiologist agreed to fax script to a Canadian pharmacy, but it takes 4-6 weeks for processing and shipping from them, running out now, so asking for them to fax just a month's worth script to a local RiteAid that has a relatively low (but still much higher than Canada) non-insurance price, to get me through the wait time.

Joanne Heckmann  The continuing saga... the script was faxed but for 30 tablets not 60.  Got that corrected, they sent it to the wrong pharmacy.  Got that corrected, the pharmacy doesn't have it on hand and has to order it, but that should only be a day delay.  The pharmacy personnel have been very helpful, but still, having to follow up with everyone is such a chore. 

Joanne Heckmann  And then something like a month later I get messages and calls from the wrong pharmacy, to pick it up,  ignore them figuring they will just restock it.  Then get the insurance statement saying insurance paid that pharmacy 3x what I paid out of pocket to the other pharmacy.  Called insurance, they say it was reversed and should show on the next statement.  

Joanne Heckmann  Grace, I have had to research and learn on my own and go outside the local area for information.  Thank goodness for this site.

Joanne Heckmann  Rose, not in this situation!  The heart is trying to compensate for the leaking mitral valve by working waaaay too hard.  The heart rate is way up and so is the EF.

Richard Munson  Joanne is taking control of her situation which we all should do. All my readings improved after my mitral valve surgery including a reduction in ventricle size. When i get the results of my annual echo i always pin down my cardiologist for exact measurements and questions. He welcomes them or he would be history. Go joanne.

Joanne Heckmann  Rose, here is the recent interview with Dr Gillanov where he mentions high EF.  https://youtu.be/sFmkGZWtCDA?si=kmAXTrgl8VlMAphR&t=3321

Richard Munson  Joanne, i love it. You’re fired. Next. I have been lucky of late. I trust my doctors and actually like them. Can’t deal with a doctor i don’t like. Maybe alexander was right, its like bar hopping.

Suzette Schear  Hi Joanne a bit late in the conversation but in retrospect you’re doing very well because you’re aware and constantly checking.  My dad always said marriage is like trying on a pair of sneakers, keep trying them on until you find the right one that fits.  A little humor but I think you can apply that in this situation. I love and trust my surgeons and doctors implicitly.  Don’t settle for anything less. You got this

Anna Rakowicz  Hi Joanne,
Can I ask where you had the TEE done ? Will you be getting surgery at the same facility?  Interesting that you have all of this detail , My TEE report showed no numbers or measurements.  

Joanne Heckmann  Hi Anna, I had the TEE done locally at Rochester General Hospital in Rochester, NY (not University of Rochester, which is the other hospital system with a good rep but poor performance in my experience).  I always insist on getting and keeping my own copies of records, so obtained a copy of the report (from MyChart) and a DVD of the images which I copied and sent to Dr Gerdisch in Indianapolis.  I would NOT consider getting this surgery locally, Barlow's mitral valve surgery is tricky, and for any valve surgery patients should be looking for a Level 1 valve center.

Rita Savelis  I hated metrapolol, so after a year my cardiologist put me on ivabadrine, 25mg morning and night. It's been 8 years. No problem. This was after double valve replacement.

Yumiko Ishida  Never been on ivabradine but I was on digoxin before my valve replacement. I was put on metoprolol and digoxin after going into afib. Metoprolol lowered my blood pressure too much so that was switched to propranolol but I didn’t have any issues with digoxin. Was on it for a year and a half until my surgery. Still on propranolol but on a much lower dose.

Joanne Heckmann  Rita, I don't like metaprolol either.  Ivabadrine is hundreds of dollars per month, and I see a lot of controversy in studies and editorials on PubMed regarding the pushing of this expensive drug over inexpensive, and in some ways superior, older drug digoxin.  

These two drugs are not beta blockers and do not affect blood pressure.  They only affect heart rate.

Rita Savelis  I don't have blood pressure problems (mine tends to be low) but  high heart rate. I live in France and I don't have to pay for my meds, hospital visits or surgery.
We pay high taxes but medical care is covered for everyone.
 The govt negotiates lower prices for meds with pharmaceutical companies. I don't know what ivabradine costs but certainly not US prices. Cardiologists are very much solicited by big pharma because cardiac issues don't go away and patients stay on drugs for a lifetime. So I hear you and I know doctors are influenced by sales reps. Betablockers made me feel slow, low energy, depressed. I would rather have taken nothing but my cardiologist prescribed ivabradine. I have had no problems on it, which does not mean others don't. Ir's a hyperpolarization-activated cyclic nucleotide-gated channel blocker. Whatever that means.  In a perfect world I'd stop all my meds. I ask my cardiologist all the time (it's been 9 years) when I can stop. Take care, Joanne, and stay with an older med if it works for you. My anticoagulant is old and cheap. I'll ask my cardio about digoxin.

Yumiko Ishida  Do you have an underlying condition that is causing your higher HR? Not sure if digoxin is very effective on its own if your primary goal is to lower your HR. It does lower your HR but it was prescribed to me for afib along with a beta blocker. I still had a clot, so until that was gone I couldn’t be cardioverted or take antiarrhythmic meds. The Canadian doctor who originally prescribed it considered it a short term solution, and suggested I try to get off of it as soon as possible. American doctors don’t seem to have issues with long term use of digoxin, but it was the first drug to go after my surgery. Like most people, my post surgery HR was high, so I chose to stay on propranolol but am weening myself off of it. The prescription is from a cardiologist but it just so happens that propranolol is my neurologist’s choice of sleep aid, so I figured it doesn’t hurt to continue to take a low dose before bed. 

Jill Porter  I have been on Digoxin for a year now. It is about 1 year since my surgery. I haven't had issues with it but I think they want to discontinue it at my next visit. I believe I was on it to help me stay in sinus rhythm after 5 weeks of post op Afib.

Joanne Heckmann  Rita, ivabadrine is almost $600 for 90 pills.  It required a pre-authorization from insurance, so I messaged the cardiologist and told her I couldn't afford it.

Yumiko, I have MVP and regurgitation; I had an initial video visit with Dr Gerdisch in Indianapolis and he gave me much more information than I was given locally:  Barlow's valve, and the regurgitation looked severe to him, on one of the images, the jet extended all the way to the wall of the left atrium.  When I compare the LA size to a previous echo 14 years ago, it has doubled in volume.  An EKG showed incomplete right bundle branch block.  So my heart rate is in the 100's just standing up.  My FitBit keeps congratulating me on getting as many "zone minutes" in one day as are recommended for one week.  More PVCs on a recent Zio patch than on a Holter a year ago.   One recording of aFib via my Kardia 6L.

The downside of continuing the beta blocker is it depletes essential  nutrients.  https://www.coastalpharmacyandwellness.com/drug-induced-nutrient-depletions-not-listed-on-rx/

I did more research and found several studies on PubMed that mention Wenxin Keli, a Chinese formulation based on TCM that normalizes arrythmias whether aFib or PVCs.   So I ordered some.  I also found studies stating that the PC6 point below the wrist, the same one used for anti nausea accupressure wrist bands, in combination with Wenxin, works better than either alone.  I'm trying that as well (my wrists are so small I have to get the child size bands).

Lily of the Valley extract has a similar effect to digoxin.  I have made my own extract and have it on hand.

Yumiko Ishida  Digoxin is probably worth a consideration for you. I also had an enlarged LA, in my case from MV stenosis, and it lead to afib. It sounds like you are going through a similar situation. Sorry you are experiencing that. Afib is the worst! Just be forewarned that beta blocker may be unavoidable if your HR spikes to dangerous levels. (100-110 is uncomfortable but I’m told is safe in and of itself. It’s the arrhythmia that is unsafe.) Your surgery is in November? (I just read your previous post.) Hopefully whatever drug you need to take now is only until then.

I did not know about nutrient depletion. Thank you for sharing the information. I saved the list! 

Suzette Schear  Hi Joanne I had mitral valve regurgitation and was going to work and had a difficult time catching my breath.  I was trying to do everything the same way but finally slowed down to make it not get worse.  Nov sounds far away.  I slept propped up and that helped also If you’re extra thirsty you need to keep an eye on your water intake.  The fact that you’re walking and doing all that probably helped it to keep it in check for awhile.  You’re not alone here.  Wishing you the best and it’s okay to stop and rest if you need to

Joanne Heckmann  Thanks, Suz.  I have an adjustable bed with a new mattress, and it's in a similar position to a recliner with both ends raised, the foot raised even more.  I take Swanson herbal water pills 2x/day and that helps too.  Some days I wake up, feed the cats and just go back to bed until noon.  

Suzette Schear  I totally understand that.  Try not to give into it even though it’s hard.  It won’t always be this way.  I understand that feeling but try find pleasure in the little things here’s something to make you smile

christine blackway  I got my surgical opinions (3) with only the TEE. If the echo results are questionable and they can't clearly tell what would be needed then they might request the TTE before determining you are a candidate. I got my TTE once my surgery date was scheduled. 

J Alexander Lassally  Hey there Joanne - just logged on and saw this.  A TEE is definitely needed and advised, but you can still have a consult with a surgeon based on Echo alone. If you are a clean cut case, you can meet and discuss with surgeon.  But, a TEE is the gold standard pre-op. 

Yumiko Ishida  I think you can get opinions with just the regular echo. You probably want to wait on a TEE unless a doctor specifically requests it. You have to be sedated, so the doctor will likely want to combine it with other procedures, like a diagnostic cath. There are certain information you can only get from a regular echo, and vice versa. I never got a CT or CMR for my heart, so those for sure are only needed if a doctor thinks are needed for your particular case.

Allen Carkner  Depends on how good of echo “windows” they have. I did have a second echo just a month after my first “severe” echo with a second opinion cardiologist just so they could get another confirmation.

Robert Miller  I had a similar experience as Christine. I got a regular echo and that pretty much determined that I needed surgery. From an echo they can see your leakage, your ejection rate, size of chamber, etc. I then got a TTE but that was mostly to determine the exact status before the surgery. So to answer your question, yes, an echo is enough. You might want to get a second echo, though. The echo (and TTE) can show very different results depending on the current state of your heart. 

Joanne Heckmann  Just an update - I had an initial call with Dr Gerdisch and he wants a TEE "by someone who knows what they are doing."  He said there was one image on the TTE that showed a jet going all the way to the back of the left atrium.  I took his comments to mean that the quality of the study was not up to his standards,  there weren't enough images showing the jet, and they should have taken more at the time.   So, TEE about a week away, at the smaller hospital system here that is associated with Cleveland Clinic.

Grace Mason   Joanne,
I recently met with a surgeon at CC and specifically requested rigid fixation. I was told they normally do not do for people under 100kg. Then he said sometimes we do for 90kg, and I guess we could do for you.(I am 80kg) We don't do it for the "little old lady". It didn't leave me feeling very confident about receiving it. However, if you want it, anywhere, ask for it.

Most hospitals use wire because of cost. I believe you will have to advocate for it, if it is important to you. One hospital exception I know uses it every time is Franciscan Heart Health and Dr Gerdisch.

Grace Mason   https://www.heart-valve-surgery.com/heart-surgery-blog/2019/11/13/sternalock/?utm_campaign=shareaholic&utm_medium=email_this&utm_source=email

Grace Mason   You are welcome Valerie. It is important to me. I feel like it is one thing I want to know will happen before going into surgery, since I won't know if a repair or replacement will be done beforehand. Gives me a little sense of control in a situation where you feel you have very little control over what happens to your body. Plus the benefits of rigid fixation too!

Valerie Allen  Grace, did you get the sense that CC would take this approach if requested? I am probably closer to what you named as instances where they would use it. But I don’t know about the little old lady part 😉

Grace Mason   Well, I would like to think they would, but if you don't specifically tell your surgeon, I will have my surgery here, if I can have rigid fixation, I don't think they would automatically do it, even if you are 90 or 100kg.
I don't know why this surgeon even found it necessary to add the little old lady comment.

Brady Busch  When first talking to my surgeon,I said sternum plates were my preference,after hearing about them on this site.The doctor said,they use a combination of wire and plates,because plates are not always secure and can move around.

Marie Myers  I bet the “ little old lady” comment has to do with your ability to not try to do any crazy strenuous activities before the sternum is healed.  I had the traditional wires, and really followed the dont “ lift anything over 10 pound “ rule. It was hard since I am an active little old lady, but I managed to avoid too much activity, lifting, ect, and healed my sternal wound without complication. I am sure the younger patients, especially the younger guys, have a tougher time holding themselves back from doing too much too soon.

Rita Savelis  I had a traditional surgical sternum cut with no pain afterwards. I was told by my anasthesiologist beforehand that the sternum doesn't hurt (like ribs) when cut and that proved to be true. No special sternal plate, just wires. I trusted my surgeon to make the right surgical choices for me. Occasionally some patients do not do well with wires, but that seems to be a minority. But many procedures are now being marketed directly to patients... Take care. 

Grace Mason  
I think it is good, especially as you can lift 30lbs(15 in each arm) immediately after surgery and lift arms above your head. I believe it will help mentally, to see yourself as "normal" and less restricted immediately after surgery, and it is beneficial for those who don't have someone to help them at home after surgery. 

Another info article found here at HVS:
https://www.heart-valve-surgery.com/heart-surgery.../rigid-sternal-fixation/

Joanne Heckmann  Grace, thank you and I agree with you.  Patients deserve better.  Dr Gerdisch explained in a YT video about this that cardiac surgery is the ONLY specialty that hasn't caught on to rigid fixation.  It's SO MUCH better for the patient.  IMO if a surgeon poo-poos it he's not well informed.  I had a feeling even though CC is a member of ERAS, they might not be fully committed.  And that "little old lady" comment... shameful.  We've lost so much ground that was gained in the 70's.  https://www.erascardiac.org/about/eras-cardiac-society

Valerie Allen  Marie, yes it is listed as a “Moderate” recommendation under During Surgery/ERAS Recommendations. The critical ones are deemed “Strong.”

Miriam St.Clair  I had rigid fixation devices plus cotton ties (I'm allergic to the nickel in wires) placed at the Cleveland Clinic. I was a re-do sternotomy and I've had radiation treatments so I had a "hostile" chest. My sternum was damaged from the previous surgery and radiation plus it adhered to the underlying blood vessels and tissues. I required 16 units of blood products during the surgery because of trying to get through and lift off the sternum plus several units of cryoprecipitate. I think they didn't want to take ANY chances that my sternum would come apart post-operatively so the sternalock blu fixation devices were used and the ties.  I've done well and had very little pain after the first day of surgery and no pain now at all. I do know they have no intention of ever trying to open my sternum again so another reason for the strong closures. I'm definitely a little old lady who weighs 105 pounds (48 kg).  I was driving and easily lifting heavy objects after 6 weeks. No pain or discomfort or creaking in the night since the surgery. Good luck!

Anna Ma  It shows 404 for both links. I have been wondering too what data and criteria USNews have been using for their ranking. For example, when I drill down from the general cardio/vascular ranking further to aortic valve surgery, the rankings are totally different. All the top 10 well known hospitals fall to after 20, actually only cedar sinai and cleveland made to before top 50... Nevermind, I just realized that they don't actually have a rating for valve surgery, it is in alphabetical order, no wonder it doesn't make sense. LOL

George Gardopee  Joanne - I had repairs to my mitral and tricuspid valves done at the Cleveland Clinic in November of 2021. We are on Medicare and a United Healthcare Advantage policy. My total share for the surgery and hospitalization was $200. It was all seamless and easy except for a little trouble getting confirmation for pre-approvals for pre-admission testing.  BUT - the UHC plan we are on is not available to the public - it is for retired CT teachers, so I can’t claim you would have the same experience with a different UHC Advantage plan. Good luck!

Joanne Heckmann  George, thank you, nice to hear from you.  I read through your journal, well done, very detailed and very helpful.  Like you (not an engineer but retired IT, private pilot and experimental aircraft builder) I have been analyzing my echo data.  Yes I will consider AARP UHC, that's what my ex has and he just had a carotid "roto rooter" surgery;  he's doing ok and I will ask about his insurance experience.

George Gardopee  Nice to meet you Joanne. I am also a private pilot - I should say “was” as I am severely not current.  Just curious and perhaps too nosy - but has your heart condition influenced your ability to pass the 3rd class physical? I don’t expect to be returning to flying, but I did wonder if I would have been able to pass either with a severe leak (prior to surgery) or now that it has been repaired.

Herb Greenberg  I had regular Medicare with a supplement and my $180k bill cost me zero. Only cost was plane travel and the cost of lodging which can be a tax deduction, if you qualify.

Joanne Heckmann  George, I sold my Avid Flyer years ago, it's currently flying in Ohio.  I had a C5-7 cervical spine fusion and the risks of flying (or really, landing) became too great.  Amy Laboda wrote a nice 7 page article in EAA Magazine here:  https://tinyurl.com/EAAAvidFlyer .

Joanne Heckmann  Herb and Ana, thank you... I was wondering how many here were using original Medicare with a Medigap plan for this.  I just found today that CC has partnered with an independent Medicare broker to help answer the coverage question.   I was able to find the MA plans in my area which include CC in their network (basically all UHC and Humana PPO plans).   Not sure what that will mean in terms of total costs.  Still researching.

Joanne Heckmann  According to a very useful Medicare Advantage plan comparison chart created by a local nonprofit agency, one of our local hospital systems (the one my cardiologist is in) is not in network for Humana.  So that narrows it down to UHC.

Louise Moore  Hi Joanne, I had my surgery at CC and I have Medicare and Plan G with UHC.  CC accepted Medicare and my Florida Plan G covered the 20% or more excess.  It's great that you chose CC for such an important surgery!

Joanne Heckmann  Thanks Louise, glad you are doing well and are pleased with Dr Gillinov.   My thoughts are that Medigap is 10x the cost of the PPO here, being single that's an important consideration, plus going to Medigap is a one-time, one-way decision.  I don't have anything else pushing me in that direction.

Joanne Heckmann  New info thanks to more research and a kind soul on Reddit.  NY is one of the few  states where underwriting is not a concern for Medigap, so you can switch back and forth between Advantage and Medigap from year to year.  And in NY, if you qualify for EPIC, you get a "get out of jail free card" in the form of a SEP that allows you to switch any time during the year, every year.  So I can switch to a UHC PPO by 3/31, on 4/1 submit my application for EPIC, and plan for either plan F or G when the time comes.  Whew.  Going to double check this with a local Medicare insurance broker, but I feel a lot better now.

George Gardopee  Joanne -that sounds like an excellent outcome for you. I bet you will be pleased with the CC.

 I read the Avid article -I am extremely impressed. I restored a ‘59 Alfa myself some years ago (a 2000 Spider). It took me 10 years. By my calculation, that would mean it would have taken me about 80 years to build an Avid. 

Joanne Heckmann  I subscribe to a couple of medical industry email newsletters.  This article was in today's Healthcare Dive newsletter.  It's about how MA plans (including UHC) use AI to deny benefits.  Don't read it to get angry, read it to be informed.  https://www.statnews.com/2023/03/13/medicare-advantage-plans-denial-artificial-intelligence/?utm_source=Sailthru&utm_medium=email&utm_campaign=Issue:%202023-03-13%20Healthcare%20Dive%20%5Bissue:48740%5D&utm_term=Healthcare%20Dive

Joanne Heckmann  George, that's amazing.  It's such a beautiful little Swiss watch of a sports car.  Did you autocross it or show it?  Mine had a chrome air cleaner that everyone lusted for.  

George Gardopee  Just showed it, mostly. I suspect it would have been too large and heavy for anything like auto cross - the model was not nearly as nimble as the Guilietta.   I sold it about 8 years ago when I lost my appetite for another round of rust repair.  Here is a link to a page that has several photos of it at the Pittsburgh Vintage Grand Prix. All the ones of a car with a tan interior are of mine.

https://www.conceptcarz.com/view/photo/295356,10543/1959-alfa-romeo-2000-spider_photo.aspx

Joanne Heckmann  Wow, what a beautiful restoration.  Nice memories.  Yes, rust was the problem with mine as well, you could watch the road go by through the floor.  Autocross is just so much fun regardless, you never get out of second gear... My current 2006 NC Miata GT (just turned 25k miles last summer) isn't competitive without an RX7 rear swaybar at the very least.  The local SCCA club incorrectly put me in the same class as the NBs, which made it look a half second faster in stats.  I took an instructor with me on a few runs and he said my approach was "aggressive"; well, he was telling me to go faster!   My father grew up racing dirt track so I guess it's in the genes.  I was navigator on a few road rallies as well - nothing like hanging on in a 90-degree turn in an original Mini on a state forestry road at night in the middle of nowhere in snow.  I learned to read tulip maps :-) .