Kathryn Wylde - Heart Valve Journal

My Journal

269 days ago

Adam Pick reacted to this

I'm interested in knowing what peoples true experience is with minimally invasive surgery, especially women. I've been seeing comments here and in the Facebook ...Read more

I'm interested in knowing what peoples true experience is with minimally invasive surgery, especially women. I've been seeing comments here and in the Facebook group about it being pretty painful/uncomfortable regarding recovery, and issues with nerve damage. Can anyone share their experience with it?

Adam Pick This is a great question Kathryn. Fyi, next weekend I'm going to attend The Society of Thoracic Surg ... Read more

Adam Pick This is a great question Kathryn. Fyi, next weekend I'm going to attend The Society of Thoracic Surgeons Conference. I will do my best to get you some feedback from the surgeon's perspective about their techniques and their thoughts on any research regarding the patient experience. That said, I'm hopeful some of the women in our community may respond to you directly about their experiences. Stay tuned!

Kathryn Wylde Thank you Adam, I really appreciate that!

meg oconnell Hi Kathryn, I had a mini aortic valve replacement May 2024, so I am 8 months post-surgery. I of cours ... Read more

meg oconnell Hi Kathryn, I had a mini aortic valve replacement May 2024, so I am 8 months post-surgery. I of course have nothing to compare it too, but I found the procedure to be great. The recovery was good. I would say 90 days post surgery I was feeling like my old self again. The first few months my heart rate and blood pressure bounced around a lot, but I was told this is normal as your heart is recalibrating with the new valve. I don't seem to have any nerve damage and as for pain, I would say it was minimal and my scar is about 1 inch. So, pretty remarkable all in all. If I can answer anything else let me know.

Kimberly Eisenhut Adam, Can you please ask some questions about Tricuspid regurgitation and if it is always best to wai ... Read more

Kimberly Eisenhut Adam, Can you please ask some questions about Tricuspid regurgitation and if it is always best to wait until it is at the severe stage, I really want to know if what I am being told and advised is the best advice. It is so difficult getting straight answers for Tricuspid. Thank you, Kim

Dan Fouratt Kathryn, I am not a women but had minimally invasive valve replacement and it went well. I was walki ... Read more

Dan Fouratt Kathryn, I am not a women but had minimally invasive valve replacement and it went well. I was walking the day of the procedure and discharged 4 days later. I took only tynenol for pain and that was only for a week. I did what my doctors said. Two months post surgery I was able to become the caregiver to my wife what broke her heel and was on crutches not able to do anything for 3 to 4 months. You got this, just do what the doctors tell you and get active post and pre surgery. Good luck on your journey

Joanne Heckmann Hi Kathryn, are you still planning to have Dr Chikwe do your surgery? Reading through your posts, we ... Read more

Joanne Heckmann Hi Kathryn, are you still planning to have Dr Chikwe do your surgery? Reading through your posts, we seem to think alike. I'm driving 9 hours to have Dr Gerdisch do a robotic mitral valve repair (billowy Barlow's valve with severe regurgitation).

Kathryn Wylde posted an update

328 days ago

I'm really interested in the wires vs rigid fixation for a sternotomy. It makes so much more sense to me to do the rigid fix - would love to hear from anyone ...Read more

I'm really interested in the wires vs rigid fixation for a sternotomy. It makes so much more sense to me to do the rigid fix - would love to hear from anyone who had that instead of the wires, or opinions in general about the two.

Valerie Allen My particular surgeon does rigid fixation based on a larger body type. I was/am heavy but not in the ... Read more

Valerie Allen My particular surgeon does rigid fixation based on a larger body type. I was/am heavy but not in the obese category, so I was at the low end of when he would agree to do it. As I understand it, some docs are not as stringent. I believe I have a couple wires plus several plates (rigid fixation). No problem with either. PS I think I was told they still did a couple wires in case they had to get back in quickly.

Geoff Curtis I had a hemi-sternotomy 10/15. I have two plates and five wires.

Rita Savelis I have wires, no problem.

Chris Charbs My surgeon did both, wires and a sterna lock. My recovery has been great with no issues. 5 months p ... Read more

Chris Charbs My surgeon did both, wires and a sterna lock. My recovery has been great with no issues. 5 months post op

Tammy Gonzalez I've opted to go the rigid fixation route with Dr. Marc Gerdisch on April 2nd. I haven't really been ... Read more

Tammy Gonzalez I've opted to go the rigid fixation route with Dr. Marc Gerdisch on April 2nd. I haven't really been given any options for minimally invasive surgery from any of my consults, so the rigid fixation looks much more appealing from a recovery standpoint. I have 3 valves that need repair and/or replacement as well as a bypass and possibly a completion of a mini-maze procedure that I've already had. Open heart/thoracotomy is my only choice. Rigid fixation just seems to make more sense.

Kathryn Wylde posted an update

330 days ago

Thank you to those who've answered my first time questions. I really appreciate it.

I have another - Johns Hopkins doesn't take any medicare advantage ...Read more

Thank you to those who've answered my first time questions. I really appreciate it.

I have another - Johns Hopkins doesn't take any medicare advantage insurance, which is what I have, and I understand neither does Mayo and probably others. I can go on straight Medicare but then there's the 20% thing. I can't get on a supplemental unless I move to another state as I'll be denied. How have you all worked with Medicare, those who are eligible, for your surgeries?

Richard Munson I have medicare with blue cross medex. I think i ended up paying 5 grand out of pocket

Rose Madura It's my understanding that you can be refused from Medigap for prior conditions unless you are in you ... Read more

Rose Madura It's my understanding that you can be refused from Medigap for prior conditions unless you are in your first six months on Medicare. But an insurance specialist should be able to better answer those questions.

George Gardopee I was on a Medicare advantage plan when I had mitral valve repair at the Cleveland Clinic. They had ... Read more

George Gardopee I was on a Medicare advantage plan when I had mitral valve repair at the Cleveland Clinic. They had no issues with my advantage plan. My total out-of-pocket for the surgery was $200. Some of the pre-surgery testing had copays but the charges were less that $100 in total if I remember correctly.

Anna Rakowicz I’m surprised that some don’t take Medicare Advantage, but imagine it depends on the plan as some ... Read more

Anna Rakowicz I’m surprised that some don’t take Medicare Advantage, but imagine it depends on the plan as some are contractual to the state.

Kathryn Wylde Anna, I know it's kind of unbelievable that a well known hospital would cut out a whole swath of pati ... Read more

Kathryn Wylde Anna, I know it's kind of unbelievable that a well known hospital would cut out a whole swath of patients who won't be able to use their physicians and services.

Joanne Heckmann Thank goodness I live in NY. Switched from UHC MA to original + Plan N (annual premium increases are ... Read more

Joanne Heckmann Thank goodness I live in NY. Switched from UHC MA to original + Plan N (annual premium increases are supposed to be less than Plan F/G) and can switch back next year. Dr Gerdisch was in network with UHC MA for me.

Kathryn Wylde posted an update

330 days ago

Hello, this is my first post as a newcomer! It's been a weird journey to now considering having mitral valve repair surgery. Two years ago the results of an ...Read more

Hello, this is my first post as a newcomer! It's been a weird journey to now considering having mitral valve repair surgery. Two years ago the results of an echo and TEE showed moderate regurg but severe left atrium enlargement, and the docs didn't seem concerned and said to just wait. I moved to Maryland this year and went to a new cardiologist who got very concerned when he saw those test results and said I should have surgery asap.
He then did a TEE and heart cath in August and came out saying it wasn't as bad as he thought, volumes and pressures are good in all chambers, but atrium still super enlarged, so wait. Just saw him for a 3 month check up and he went back and forth about taking it seriously but also waiting. So confusing! Then had his colleague call yesterday to say they thought I should have surgery sooner rather than later. My gut says to just get it done.

I can't find any information on this presentation of moderate regurg and severe enlargement, and I don't have any other indications of things that might cause the enlargement, including hx of high blood pressure. Anyone here have anything similar? And has anyone gone to Dr. Gammie at Johns Hopkins?

Thank you!

susan harris my sons cardiologist at john’s hopkins is stellar. very impressed w the hospital, too. it never hur ... Read more

susan harris my sons cardiologist at john’s hopkins is stellar. very impressed w the hospital, too. it never hurts to get 2nd opinion. trust your gut! ask your cardiologist and surgeon to explain it more to you. they should be able to give you answers!

Richard Munson Not being a doctor i can only say what i have read and been told by my surgeon for my severe mitral v ... Read more

Richard Munson Not being a doctor i can only say what i have read and been told by my surgeon for my severe mitral valve regurgitation and enlarged chamber. The chamber becomes enlarged to try and compensate for the mitral valve not closing tightly which allows some blood to travel in the wrong direction. Its like any valve ,it’s meant to keep whatever the fluid is to go in one direction. My chamber was enlarged but after my last echo i was told it had reduced its size now that my mitral valve has been repaired 3 years ago.

Rose Madura Of course, I vote for a second opinion. I'm not a fan of waiting. Johns Hopkins is a very good hospit ... Read more

Rose Madura Of course, I vote for a second opinion. I'm not a fan of waiting. Johns Hopkins is a very good hospital so you are in good hands. But a second opinion will most likely give you some peace of mind. As Susan mentioned, ask lots of questions. Write them down. Please keep us posted.

J Alexander Lassally Gammie's assistant is super super knowledgeable - I spoke with her an hour when in the process (Philo ... Read more

J Alexander Lassally Gammie's assistant is super super knowledgeable - I spoke with her an hour when in the process (Philomena)... I never met Gammie - and strangely, no patients here have blessed (or not) the experience there. He is high volume reportedly. Good luck

Barry Brasseaux I had both my heart surgeries at Hopkins. You will receive great care at Hopkins. I am familiar wit ... Read more

Barry Brasseaux I had both my heart surgeries at Hopkins. You will receive great care at Hopkins. I am familiar with Dr. Gammie. Before coming to Hopkins he was at Univ. Md Medical so very knowledgeable in cardiac surgery. Happy to answer any additional questions you might have.

Yumiko Ishida My left atrium was enlarged due to mitral stenosis and my BP is generally very low (typically 90/60), ... Read more

Yumiko Ishida My left atrium was enlarged due to mitral stenosis and my BP is generally very low (typically 90/60), so without knowing your other health conditions, I would say your LA enlargement is directly due to your MV regurgitation and there isn’t much benefit in looking elsewhere for an explanation. My stenosis was mild for the longest time, but the LA enlargement was severe for some time. A couple of hears ago, my enlarged LA caused afib, and to make a long story short, the afib prompted me to go ahead and get the valve replaced. Doctor recommendations on timing of surgery ranged from “wait” to “ASAP.” If it weren’t for the afib, I would’ve waited for the valve surgery. I hardly had symptoms for the stenosis, and if I were able to wait a little longer, probably could’ve gotten away with one OHS. I decided to get a tissue valve, so sometime in the next 10-15 years I will very likely need another replacement. If you are asymptomatic you could probably wait. Just make sure you don’t exert yourself and manage your stress to avoid pulmonary edema or afib. In the mean time I will get second or even third opinions so you know what to do when the time comes. Hope that helps?

Yumiko Ishida If you do decide to go ahead with surgery, whether it’s a repair or replacement, make sure you get ... Read more

Yumiko Ishida If you do decide to go ahead with surgery, whether it’s a repair or replacement, make sure you get the maze procedure done at the same time. Without it I’m sure I’ll be back in afib.

Joanne Heckmann In my case, the LA enlargement is due to the mitral regurgitation, the pressure surge of the jets cau ... Read more

Joanne Heckmann In my case, the LA enlargement is due to the mitral regurgitation, the pressure surge of the jets cause it.