Denise Kirchner posted a note for Holly that says:
Hi Holly: it has been awhile but wanted you to know I am scheduled for a mitral valve repair redo on September 13 at Cleveland Clinic with Dr. Roselli. My regurgitation has progressed to moderately severe with some symptoms developing over the last 6 months. I hope all is well with you!
Denise Kirchner posted a note for Holly that says:
Hi Holly! It is good to hear from you. I am so happy to hear you are still doing well. It is hard to believe 2 years have passed since we walked this journey together. My 2 year anniversary is coming up on May 29th. I am doing well and am scheduled for my Echo Stress Test on May 20th, but won't know the results till I see my cardiologist on June 10th. I have been really consistent with my 20 minutes of cardio in the morning and 20 minutes when I get home from work every day, so I am hoping that more remodeling has taken place and that there is an improvement in the valve regurgitation. I will probably not post anything until after I see Dr. Malone on June 10th. We shall see. You take care of yourself and stay in touch!
Nancy B posted a note for Holly that says:
So good to hear you're doing great! I feel great too and feel my surgery is in the distant past. I've been exercising a lot, it feels nice to have confidence that your heart isn't going to cut-out if you stress it, isn't it?
Congratulations on your 1 year anniversary. I am just now having my 9 week anniversary. I too had MVP with severe regurgitation
and was told that I had less then 5 years to live if I did nothing. Needless to say, I went through all of the emotions that most heart patients go through. My heart had to be repaired through my sternum so that meant my check being cracked open. Everything is going so well now. It's amazing that walking up a flight of stairs doesn't exhaust me anymore. I do have on kinda private questions for you as a woman. I was too nervous to ask my doctor. How long did you wait before resuming sex in your relationship? If you want to talk a little more private, please feel free to contact me at firstname.lastname@example.org. Thank you so much.
Congrats on your 1 year anniversary!! It is hard to believe it has been a year since I followed your journey. Your positive attitude and great support to others on this site helped me prepare for my own OHS without fear!!! Many blessings to you, Holly as you continue to live well!!
Good to hear. I was sort of worried about those things after my operation. I had lots of headaches. Sometimes two or three or a long duration one before the operation, but after, I now hardly get any. Unless I don't eat. Then I get what I call my hunger headaches.
I am glad those ocular things went a way. It was tough if I was driving. I had to pull over until it subsided. Now that it has been a year, I have a hard time even remembering the Hospital and all that recuperation stuff. I mean it is still there every time I look in the mirror and see the scars, but hard to think back at all that stuff. Luckily I must have a bad memory about it all. Well all except that tube that ran down into my back. Yeowee....LOL. Have fun and stay healthy.
Your Heart Valve Pal....
I was excited to see your post and read your journal. I will be having robotic mitral valve repair at Mayo with Dr. Burkhart and Dr. Suri in June. I was wondering if there is anything specific you can recommend that I bring to the hospital with me. Was there any part of the surgery/recovery that surprised you, that you weren't expecting? Did they recommend cardiac rehab or was it your local cardiologist? Did you leave Mayo on a lot of heart meds and if so, were you able to get off of them soon? Sorry for all the questions! If you don't have time to answer them, I understand. I hope to start a journal a little closer to my operation date. I have learned so much from reading other people's journals, that I figure maybe I can help someone else who will be undergoing this in the future!
One more question - Do you still have problems with your incision sites and do you still have memory issues? The memory/concentration issues are what concerns me the most. Yikes!
I also had difficulties with the insurance side of paying for my MVR.
That was quite stressful too, it's almost like there are three difficult experiences with heart surgery. 1. learning you need it and picking a surgeon and learning about the whole process, 2. the surgury and recovery, 3. the insurance battles after the fact.
Getting bills for $15K and $87K with sentences like "You owe this amount" next to it, can friek a person out. Then the battle with insurance. Thank GOd we finally got the insurance to cover everything they were supposed to, but it was not fun.
It's getting to be that time when we're all going to hit our one year anniversary! Pretty cool, huh? It's almost surreal.
Glad to hear you're doing well. I've gotten away from checking this site too....been busy raising chicks and building a coop for them (chickens in the house is not a good idea).
Take care! I'll have to come up with something to say on my anniversary. :)
Holly, Glad to see you are doing well. Doesn't a year fly by? Hard to believe we were going through all this not so far back together, and now it seems like forever ago. The stress of getting ready, the nervousness, and then it was all done and the recuperating began. Well life goes on and we get back on our feet and plug along. All with the support of our loved ones and friends. It's good to be loved. It's good to be healthy again. It's good to be alive. We expect to hear from you again, even if it is just the yearly anniversary postings. Good Luck Holly. Go have the time of your life, and enjoy the life of your time. Remember...keep walking and smell the flowers.
It was good to see an update on you in the blog. It sounds like you are doing great - well except for the rejection from the life insurance company - lol! It is good to touch base with those who have traveled this road. I always enjoy receiveing the updates. Continue to enjoy your grandsons - grandchildren can brighten up a cloudy day and make you laugh when you don't feel like it - everyone needs a few of them! Mine are the light of my life. Take care and God bless! Denise K
I have just realised you replied to me and I didn't see it! Thanks for getting back to me. It must be frustrating getting the ocular migraines but I'm glad you're doing so well otherwise, you seem very positive :)
Incase this is of interest, I asked my consultant and he said migraine only relates to 'atrial septal defect' or hole in the heart, and when this condition is treated it cures migraines - but mitral regurg isn't the same. There is obviously a link between the heart and migraine though I just don't know what!
In answer to your question, I don't know when I'll have surgery, but I have severe mitral regurg and a check in April when I might find out I need surgery or if it will have to wait longer!
I'm truly doing great. No after effects other than lately I've been having some discomfort and possibly a little swelling or enlargement of my xiphoid. This was always a problem post surgery there, where it was tight and restricted with scar tissue on the lower right side of the scar/xiphoid. It's not really a big deal unless I extend myself back/arch my back him. And again, if I touch or compress it, it is tender. It does not restrict me in any way at this time and hopefully it won't. Sorry, I don't know anyone in Kansas at all. Too bad you don't live closer, I would take good care of you. And yes, we are extremely busy. There are a lot of people out there that horrible spines that need help. I also got the job here in Orlando, treating the professional minor-league hockey team, The Orlando Solar Bears. So, the this is keeping me busy as well. I had an echo done back in September and it looks fabulous. The doctor said my numbers like an adolescent. I am going back around the one-year mark and I assume I will have an echo then. After that, I think I can go back to every 2 or 3 years follow up schedule or something like that. Still hard to believe I am “fixed”. Somewhere,in the back of my mind it still doesn't seem real. Keep me posted
I am so happy to hear that you are doing so well. I'm sorry about the life insurance issue. I am 46 and my life insurance is up this month. We have an appointment to renew and I was wondering what they would say about the surgery. Will they not cover you at all? My surgery was 7 months ago and I feel great! I also get the ocular migraines. They are very strange how they just come on. Do you know what causes them?
So happy to hear you are doing well!
Holly, We have both been rejected. As I am certain many thousands like us. It really doesn't make sense to me as this procedure was supposed to "fix" us. I mean were we more insurable when we had something wrong with us? Don't make sense...But to the insurance company, we are now "Tainted" by a hospital stay. Kind of like your rates go up when you get into car accidents.
Oh well. Just save a bit more in the investment portfolio or buy some cheap real estate that your family can sell later.
Maybe gold? Seems like a safer bet than insurance anyway. Heck buy some scratch tickets with the saved money....who knows? You might hit the lottery.
so good to hear from you.
No big deal about the insurance...after all, you wouldn't be around to enjoy it! :)
Glad to hear you're feeling we'll and your scars are healing. I barely notice mine.
I know what you mean about forgetting you're a heart patient. This past weekend I started getting a pain in my left shoulder that radiated down my arm and into my chest and jaw....classic heart attack symptoms. it was quite painful and didn't go away after taking two Aleve. I was thinking "am I more likely to be having a heart attack because of my MVR?" . To be honest, I really don't know the answer to that question. I'm 54, otherwise healthy, in fairly decent shape. Am I more or less likely to have a heart attack now that my heart is fixed?
I think the pain was caused by lifting too heavy loads of wood for our stove, although the pain in my jaw and chest don't make sense. I can understand why so many people don't seek medical attention for heart attack symptoms....I'm one of them!
Take care and keep in touch!
Glad to hear you are doing well. Things are great here too. My 1 year will be Match 7th. The life insurance should have at least insured you maybe with a "heart" exclusion or something. That's insurance companies for you! As for your headaches, have you tired chiropractic. I have helped more headaches over my last twenty years than I can count. I'll admit, migraines are tougher than tension headaches but still, I have helped SO many. You should give it a try. The worst that can happen is it won't work for the headaches (though it most likely will), and even if is doesn't, you'll have a healthier spine for it. Headaches are my favorite thing to treat in my practice, because they are often caused by neck issues, almost always get better with treatment, and people are so much happier when they are headache free.
Give it a try. You may also want to try "Migraspray" , which is a natural remedy that helps to both treat and prevent migraines. More info here: www.migraspray.com
Fantastic news Holly. So happy to hear you got that bill dropped. You should never have had to go through all that trouble, but glad there is at least a little common sense over at Mayo Clinic.
We have some similar side effects from the right thoracotomy surgery this far out. I still have numbness, sensitivity and sometimes a tiny bit of pain in the right pectoral muscle area, and I also get ocular migraines every once in awhile.
Wishing you the best going forward and hope to hear some more positive updates down the road!
Awesome news regarding your bill....and as it should be!
I too, continue with pain in the right breast. Per my cardiologist the other day..."it just takes time".....yada..yada...seems like thats the answer for all my questions these days! LOL....but just glad I am here to ask them! :)
As for the memory issues....me oh my...at first I thought it was just me. I was having a real issue with spelling too. I was using two computers when I was journaling on thestatus.com for my family because I couldn't remember how to spell even the smallest of words. When Adam's newsletter contained the "memory issues" from others....I said...Hey...thats me!!! Thank goodness we have this forum to share our experiences. Two weeks ago I forgot a doctors appt!!! that has never happened to me before... I shutter to think what I will be like in 20 yrs!!!... No doubt I will need a guardian...LOL..(just hope he's good lookin'...LOL)...but, sure I won't remember if he's not! hehe..
It was great to hear from you....Take care and enjoy this wonderful time of year!
What a wonderful Thanksgiving gift! I am impressed that you got a phone call from the surgeon's secretary!
I am glad to hear that you are doing well. I still have just a little numbness left in my left breast. My scar is healing nicely - with the help of "Mederma" Gel - it is kind of expensive but a little goes a long way. I have been using it for about 2 months and my scar has faded considerably. You have to use it every day at least twice a day. I use it in the morning after my shower and again before I go to bed. You might want to try it. I comes in a cream and a gel.
I still have numbness in my inner thigh and groin from the seroma surgery, but I am sure that will improve with time.
I notice if I over-due it with cleaning etc. that I get really tired and a little short of breath, so I just need to pace myself, expecially with the moderat leak. Over all I feel pretty good at 6 months post-surgery. I do a brisk walk every morning for 20 minutes and again in the evening for 20 minutes and do some light weight lifting every other day.
You mentioned a problem with memory. I too struggle a little with that along with inablility to concentrate & organize my thoughts at times. I have read about a phenomenon called "pump head" caused by the heart-lung bypass that can cause memory and concentration issues, but supposedly it gets better with time. I talk to Connie Taylor on a regular basis and I think she is having some issued with it too, so it must be a common side effect for alot of heart surgery patients.
I will be posting a 6 month update - hopefully tonight or tomorrow as tomorrow is my 6 month anniversary.
So glad to hear they dropped your surgeon charge! That has to be a load off your newly repaired heart.
I had numbness (and some pain) in my left breast for about 9 months, and then it went away. My surgeon told me it would take 6 months to a year, and he was right. Hope yours goes away soon.
God Bless and take care,
Wow, they dropped a 15,000 fee??!! That's excellent! They must have realized they need to rethink what they can and cannot bill for. Hospitals/doctors customize their charging method according to what insurance companies are willing to pay. It's too bad you had to gothroughsuch a hassle.
I, too, still get occular migraines. I had one just yesterday. Coincidentally, I've also had concerns with my memory. I stopped taking my cholesterol medication thinking that may have something to do with it. Sometimes I feel like I can't even finish a sentence, never mind a thought. I'm not sure I see any difference, it's only been a few weeks since I stopped the statin.
Glad you're feeling well!
I forgot to make it clear in my previous message - the Hospital Bill was separate from the 2 Heart Surgeon's Bill's, so altogether Tristan's Heart Surgery cost $226,798! I couldn't imagine how anyone could ever pay that type of Bill without having Health Insurance, and I'm so thankful for "Obama's," Affordable Care Act which ensures that Tristan can stay covered under my Health Insurance plan until he's 26 yrs. old and then no Insurance Co. can reject him in the future due to his Pre-existing condition.
I just looked up all of my (then), 18 yr. old Son, Tristan's, Surgeon's bills from his Aortic Heart Valve replacement Surgery (On-X Mechanical Valve), in Nov. of 2009. He also had Tissue Ablation at the time of his Heart Valve Surgery, to try to stop him from continuing to have A-Fib (it worked, he's never had it again). Tristan DID have a Surgeon and a Co-Surgeon, with two separate bills & my Insurance Co. paid them both. The 1st, Main Surgeon's total bill was for $31,053. but after the Network discounts he only rec'd. $6,730. The 2nd Surgeon's total Bill was for $27,947 & he only rec'd. $2,063. after Network discounts. He had many different Bills but the Hospital bill was for a total of $167,797 but after the Network discounts were applied my Insurance pd. $134,237. Although I could never put a Price tag on my Son's Life, I am forever grateful to my Insurance Co. for only making me pay $2,500 out of pocket for all of Tristan's bills for his Heart Surgery. He has Bicuspid Aortic Valve and it was severely leaking. He's 21 yrs. old now and doing great, but he will have to take Warfarin for the rest of his Life. I definitely think that you should file an Appeal with your Insurance Co., because it sounds like it's pretty much standard procedure to have a Co-Surgeon during Heart Surgery. I wish you Luck & am glad to hear that you're doing well. Kathy C.
sorry for the last I should have signed, I had my surgery done at Mary Washington Hospital in Fredericksburg, Va by Dr. Na. He was fantastic! Steve McInnis You can also google "From heart surgery to the top of Stony Man in 52 days " they did an article on my recovery or try the whole boring story at www.steveheart.com
So I looked at my bill and no assistant or co-surgeon bill.
It might have been under the operating room charges as those were over $69,000.00.?!
Like I said though call the hospital and talk to the finance dept. Let them know how broke you are now.....;) See if they can eliminate it or reduce it as it is being denied by your insurance company.
I had my AVR at CCF in July. The surgeon charged a little over 20,000.00, however, thus far there has been no bill submitted to my insurance company for an assistant to the surgeon. Like Deb Z, other doctor charges were under $1000 except for the anesthologist. Because Deb Z was never charged for an assistant, I doubt I will either, but who knows....when my father passed, we received a bill from one of his doctors about 8 months later...so I guess anything is possible.
I wish you all the best with this battle. It seems so unfair when a patient goes through such a surgery as we have, there are still more mountains to climb with insurance companies......
I see you are from Enterprise. I live in Concordia, KS. Where did you have your surgery? Salina?? My doc told me I will need a replacement soon of the aorta valve and would like the minimally invasive surgery and I would like to do it in Salina! Any info you can give me would be great!!!!
I had my surgery done at CCF, and I had a mitral and tricuspid repair. The bill for my surgeon was $37,906 for both repairs before the insurance adjustment. After the adjustment it was $28,831. There did not appear to be a bill for a surgical assistant. All other doctor bills were less than $1,000 except for the anesthesiologist. I did ask Dr. Gillinov before my surgery if he would be doing the whole surgery, and he said yes, except for the closing.
Good luck with your battle......that is the LAST thing you need about now!
Holly, sorry to hear about the denial you are in....LOL...Sorry couldn't help myself. Really though I am at work, now but I will check my bill when I get home. I don;t remember seeing a co-surgeon bill though. I know I had an Assistant surgeon named Steve, as he visited me in the room, but I don;t remember how he got billed out. You should call and talk to the hospital. Usually they will work something out or get rid of the bill as it should have all been agreed with by the insurance company and hospital billing dept. ahead of time. At least mine was.
I only paid $2,500 out of pocket. Thank God for my wifes insurance.....Yikes!
I'll let you know if I find anything tonight.
I just looked up the ins claim from my surgeon -- 20,865.00
I was never aware of an assistant but there are two other claims from MDs on the date of my surgery for 13,325. And 1310.
I suppose one of them is from anesthesiologist. I'm not sure who the other md is. The charge details says critical care.
Hope this heps..let me know if you need any other info.
Hi Holly, It is my understanding that all claims should be pre-authorized. If your surgeon's office pre-authorizes, that co-surgeon''s fee has to be included. I know some insurance carriers will not cover that fee. Find out if that fee was included in the pre-auth, and what you were told prior to surgery. The office may not have inforned you of that detail.
Thanks Holly. I appreciate your words of encouragement. Only another heart valve patient can understand the range of emotions that occur, especially when there are complications or a surgery does not turn out as expected. Just when I think I at a good place with all of this, the "what ifs" and "anxiety" rear their ugly heads and overwhelm me. I will eventually work through this. Thanks again! Denise
I am having a tough time trying to juggle full time at work and cardiac rehab - am exhausted most of the time - especially after rehab so it takes the fun out of it. It worries me that this fatigue is due to the moderate leak - am still also dealing with the disappointment that my perfect repair has failed - I don't really relish feeling fatigued all the time especially after what I went through to have the valve fixed, not to mention the complications and knowing they cannot go back in uless the leak is severe (not that I really like that option either). I know I have to learn to accept it and go on but am not there yet - am I making any sense?!?
Anyway, thanks for your concern, sorry to vent, just needed to get my feelings out.
Well, crap, that took long enough!
Ha.....Glad to hear you are finally on the mend with that damn incision. What a ride that was. Now you can concentrate on getting on with life. Congrats on being a Grandmother, AGAIN. Time to put some energy into that little package, seeing as the Holidays are rapidly approaching already.
Is it just me or is anyone else going to have a hard time slicing the Turkey this year? Made you think about that one eh?
Good Luck Holly, and once again be careful out there, and I'm still reading up on these journals as well.
That is good news that your wound is finally closed and no more dressing changes.
Congratulations on grandbaby #3 - each one is so exciting. Our 3rd grandchild was born in October and will soon be 1 year old. I was finallly able to lift again as of last week (after seroma surgery in late July). It was so nice to be able to pick Genevieve up and carry her around without worrying about my groin incision.