Hi Vel my name is judy willcocks i send you an e-mail earlier.
On April 26, 2012...
Hi Vel! I highly recommend getting yourself a recliner for post surgery. I am still sleeping in mine! I actually bought an electric one prior to surgery, but found I didn't really need it. I have a Best recliner, with a handle and is goes up and back very easily. I have never been a back sleeper, sleep on my side. I was actually told not to sleep on my side when I was discharged. They said "for a while", don't know exactly how long that is, lol. Don't know how much being female has to do with it, lol, but my incision still pulls a little when I sleep on my side. I definitely recommend the recliner, it has been a life saver for me. Also, highly, highly recommend the donut shaped travel pillow for head support, takes a lot of strain from your neck and shoulders.
Linda Dixon, AVR 3/13/2012
Vel Turner Linda,
Any rental recliner must be easy to use, or I won't rent it. So many people have said basic ... Read more
Vel Turner Linda,
Any rental recliner must be easy to use, or I won't rent it. So many people have said basically the same thing you did, about sleeping. (Worse even than you, I am a stomach sleeper!) I will definitely buy the donut pillow! It's so great to get good advice from someone who has been there! Thanks again. Vel T.
On April 26, 2012...
Hi Vel,
I think the previous post must have been by Judy Willcocks. she just recently started a journal.
I can't answer your question about the necessity for a recliner as I haven't had my surgery yet. My husband and I have matching recliners in our family room that are great for napping. I think they're great for reclining and getting weight off your legs. They're great if you tend to have backaches too.
If you're going to rent one you may as well get a power recliner to alleviate the need to work the lever. My mother has one and loves it.
Nancy B
Vel Turner Nancy,
Yes, your were right. That post was from Judy Willcocks.
Vel Turner Nancy,
Yes, your were right. That post was from Judy Willcocks.
Thanks for the recliner advice too! Vel Turner
On April 25, 2012...
Hi Vel, i am 44 and also had rheumatic fever at age 20 this is where my problems start i must get a mitral valve replacement in a few months time. I live in south africa.
Vel Turner Thanks for your response. Do you have a journal? If so, can you send your name so I can read it? V ... Read more
Vel Turner Thanks for your response. Do you have a journal? If so, can you send your name so I can read it? Vel Turner
On April 25, 2012...
Vel
I had Rheumatic Fever as a kid. I remember the time when I had it, although I had a bunch of other problems at the same time so It was never caught and treated. I had it when I was 9years old. And at 17 years old I had my first Mitral valve replacement surgery. My valve was severely damaged and they were not able to save it and repair it. I choose a tissue valve. I am now 5 1/2 month since my 2nd valve replacement surgery. I feel great and I have healed quit well. This time I choose a mechanical valve. I had the full sternonomy both times. This surgery is hard and painful but not so bad that you can't get through it but, I definitely don't want to ever have OHS again. Please let me know if I can answer any questions for you...
Jamie McGuire
Vel Turner Jamie, Your response promted me to read your entire journal this afternoon, and how well you tell yo ... Read more
Vel Turner Jamie, Your response promted me to read your entire journal this afternoon, and how well you tell your story! It is good to know you are now doing so well!
A couple of things from your comments: you mentioned leg massagers. What were they? I have a lot of leg cramping during the night, due to earlier foot surgery and probably in part from my cholesterol medication. I am very concerned about this in recovery, because I won't be able to hop up out of bed and walk it out. In fact, if tube still in, won't even be able to tell anyone... My other question was about the ticking of the valve - you say you have become accustomed to it, but mentioned it quite a bit. I have read that there are "quiet" ones - did your surgeon discuss that with you at all? (Maybe it's just a sales pitch from the manufacturer, who knows?) Anyway, thank you for responding - there don't seem to be too many people who have had rheumatic fever, or at least not too many have answered. You explained the replacement over repair perfectly - it was good confirmation for me. Vel Turner
On April 24, 2012...
I don't have any anecdotal evidence of my own, but here's some science on repair vs replacement:
Mitral valve repair and replacement for rheumatic disease: http://www.sciencedirect.com/science/article/pii/S0022522300702170
Extending the Scope of Mitral Valve Repair in Rheumatic Disease:
http://ats.ctsnetjournals.org/cgi/reprint/87/6/1735.pdf
Long-term outcomes after surgery for rheumatic mitral valve disease: valve repair versus mechanical valve replacement: http://ejcts.oxfordjournals.org/content/37/5/1039.abstract
But see also that outcomes are not universally better for repair: Rheumatic mitral valve repair: 22-year clinical results: http://www.ncbi.nlm.nih.gov/pubmed/21714414
You can print out and discuss these papers with your cardiologist/surgeon/consult.
My conclusions from this and related literature - though I am not a medical doctor -are (1) mitral valve repair is often possible but significantly less likely in rheumatic patients (less than 90% repair rate); and (2) when repairs are feasible and undertaken they can be superior to replacement if done by a high volume center of excellence, but some clinics have poorer results.
If you knew what risk cohort you were in, and matched with relevant studies on outcomes vs treatment strategies, that would be helpful in assessing odds. Still in many cases a judgement call though since information is imperfect.
In general odds depend on: (1) the type of surgery; (2) your health; and (3) the expertise of the team doing the surgery. We with valve problems facing non-emergency surgery have opportunities to make a positive impact in each of these general areas.
-- DVB
Vel Turner DVB - Thank you for your last two entries in my guestbook. You give me a lot to check out and think ... Read more
Vel Turner DVB - Thank you for your last two entries in my guestbook. You give me a lot to check out and think about! Vel Turner
On April 24, 2012...
Vel--you might check with my husband, Jim Smith. His mitral valve prolapse and problems were most probably due to strep/rheumantic fever, but he doesn't remember the exact infection. The more I think about it though, the more I'm remembering back in 1983-84, our infant daughter had what was diagnosed as "scarletina". She had a rash all over her body but got over it pretty quickly. Jim and I both got really, really sick, though, and I actually contracted a lung infection that lasted for several years and landed me in the hospital in 1985. I still suffered from it 2 years later. So…I was reading that scarletina= scarlet fever= strep. If you have any questions, I'm sure Jim would be happy to talk with you--his email is jim@uga.edu
Donna Smith
Vel Turner Thank you, Donna, for your response on behalf of Jim. I think you covered it fine. Unfortunately, I ... Read more
Vel Turner Thank you, Donna, for your response on behalf of Jim. I think you covered it fine. Unfortunately, I lost both of my parents by the age of 15, so have never had the ability to learn much about my illness as a child, but I am quite sure I never had scarlet fever, only rheumatic. Well, what is over is over!
I followed Jim's journal from the day I discovered HVJ until after he went home. What a story! Glad he is back at work! Vel Turner
On April 24, 2012...
Hi Vel, it does take a little getting used to, this journaling business. To make a new journal entry, make sure you are under "My Journal", not my guestbook. Look in the upper right hand corner for "My Control Panel" and click on "Write New Journal". And then write your new entry. It does not erase your previous entry, although that is what it sounds like. Also, regarding your questions about mitral valve repair vs. replacement. My surgeon at Cleveland Clinic, Dr. Marc Gillinov specializes in mitral valve repair and replacement. He has recently written a book entitled "Heart 411" in which he states that "in most cases, leaking mitral valves should be repaired rather than replaced, EXCEPT when the valve is narrowed or stenotic as a result of a childhood bout of rheumatic fever, when valve replacement is usually necessary". Hope this helps with some of the confusion regarding repair vs. replacement. Let me know if I can be of any help and good luck with the journaling.
Linda Dixon, AVR 3/13/2012
Vel Turner Linda, Thank you loads for your response on both fronts. After I wrote you I discovered the options ... Read more
Vel Turner Linda, Thank you loads for your response on both fronts. After I wrote you I discovered the options along the right side of the screen - dumb me for not even seeing that! So I think I am on board with that one. The info from Dr. Gillinov was valuable - thank you! As you can see from last night's entry, I have another "phantom" response, with lots of sites to check out. I'm hangin' in there! Vel Turner
On April 24, 2012...
Vel,
I just read your post to my journal. I went for my initial consultation with Dr. David Adams of mount Sinai Hospital NYC, and was given an almost 100 percent odds that my mitral valve could be repaired, and it was. Dr. Adams feels the valve should be repaired if at all possible. Did you get a second opinion? I highly recommend you do. Also, you are right in both instances concerning prolapse and rheumatic fever. Any other questions you have, I would be glad to answer them.
Theresa Callanan
NJ
Vel Turner Theresa,
Thanks for your response. Yes, I have had two doctors tell me replacement is what is necess ... Read more
Vel Turner Theresa,
Thanks for your response. Yes, I have had two doctors tell me replacement is what is necessary. I am still looking for someone who had rheumatic fever AND also had a repair, just so I can re-posit this to my dr. Vel Turner
On April 20, 2012...
Hey Vel.
Don't have a journal. Just lurk in the guestbooks. Like THE Tiger says, a phantom.
I just did some Googling - always a dangerous thing, but useful to generate questions to ask of the experts. So what follows is from that plus info I've gleaned over the last year or so of my "adventure".
Disclaimer: I am not a medical doctor and this is not medical advice. I do offer peer advice though: get second opinions, do lots of research, ask questions all the time, and figure out what is best for you.
Over the years literally thousands of lives have been the price of the collective learning curve on how to treat valve disease. A little grim perhaps, but each of us that's been under the knife has made it easier for the next patient. The flip side of that is that you don't want to be on the steep part of somebody's learning curve if you can help it.
At the Mt. Sinai site (www.mitralvalve.org) there are videos on mitral valve repair in the setting of rheumatic heart disease. A video there advocates that every mitral valve where surgery is considered should have a repair attempted as long as the surgeon is willing to give it a go. In other words, the surgeon spends the first 45 minutes or so of the surgery working to repair the valve instead of going straight for replacement. Because long term outcomes for repair are significantly better.
What outcomes? Valve repair gives patients back their natural longevity once clear of the operation (30 days or so, during which there is sadly a non-zero loss rate). Looking at the survival curves, valve replacement patients suffer a 2-3x increase in risk of death over time. (For example see figure 3 in http://circ.ahajournals.org/content/108/10_suppl_1/II-90.full) That's roughly the same risk increase you'd get from smoking 2 packs a day. Ouch.
The teams that have the best outcomes are the ones at centers of excellence (like NY Mt. Sinai, the Cleveland Clinic, etc., or a major university teaching hospital like UCLA). There are several reasons. First, they do a dozens to hundreds of surgeries a year, have continuous improvement processes in place, have rigorous training programs, and so are generally the most experienced. That all makes them highly proficient. Second, they have a high repair fraction, typically greater than 90%, which in itself improves outcomes.
The American College of Cardiologists' guidelines state, "MV (mitral valve) replacement in which the MV apparatus is resected should almost never be performed. It should only be performed in those circumstances in which the native valve and apparatus are so distorted by the preoperative pathology (rheumatic disease, for example) that the mitral apparatus cannot be spared. As noted previously (Section 3.4.9), artificial chordal reconstruction does extend the opportunities for repair in some such patients with rheumatic MR." These guidelines are available online at the URL
Have the guidelines in hand for conversations with your cardiologist and surgeon and when going for a second opinion. When discussing treatment, go through the decision trees with him or her. If they are following the guidelines they will be generating data from tests that rigorously support the decision points. Ask to see that data and have them explain their thinking. They should be happy to do so.
Given that the guidelines state that valve replacement should almost never be it strikes me as wise to seek a second opinion. If the second opinion concurs, you'll have confidence that you're on the right path. That in itself is huge. If they don't concur you may suddenly have a better option available. Both outcomes are good. Insurances usually cover second opinions. Lots of folks on this site have gone for second opinions so it is totally ordinary.
Probably wrote too much. Keep the beat bro -- DVB
On April 20, 2012...
Sorry Vel...DVB is a phantom!!! LOL!!! He/she is very smart, very helpful, very encouraging and VERY, VERY SECRET!! Must be somebody VERY famous is all I can figure, lol! If you figure him/her out...let me know!!!
You are so right! Got a long response this time! (see 4-20). Am trying to complete second journal entry and can't figure it out - can you help?
Vel
On April 18, 2012...
Vel: in some situations there are replacement techniques that preserve the subvalvular apparatus. They can have better long-term results than "classic" replacement. Generally anyone who is having replacement recommended might want a second opinion from a center of excellence. Balance this with the ~1-2% risk per month of delay (comparable to the surgical risk). I credit my second opinion with my happy result.
Also, some folks may benefit from pre-operative afterload reducing medical therapy. I was on a beta-blocker for a month prior to surgery to prevent left ventrical remodeling (in response to the mechanical stress from my severe regurgitation) so my heart would be healthier going in to the surgery. Basically, that was to beat down the 1-2% per month loss rate. For me the decisions going in to the surgery were all about getting the best odds I could. Best wishes -- DVB
Vel Turner Do you have a journal I could read? Don't know what name to put in to access it...
Thanks!
On April 17, 2012...
Hi Vel, Welcome to HVJ. This site is amazing and you will get a lot out of it. The people on it are the best and you will meet all kinds of new friends. You are so lucky not having to wait like so many of us including me. Im in SC and am looking at Charlotte also. I decided thru Jan and Jimmy they are do so great. That is when that time comes to me. I wish you the best. Keep us all posted. Good luck
For the long haul
Linda H
Vel Turner Thanks, Linda, for your nice welcome to HVJ.
Since your last post was several days ago, I am wonde ... Read more
Vel Turner Thanks, Linda, for your nice welcome to HVJ.
Since your last post was several days ago, I am wondering about the outcome with your friend's father. So many times we read of serious and traumatic events in the lives of those around us, while we are waiting for OHS...and the reminder that it isn't all "about me" when each of us goes through that thinking, I am sure. (I know I have and do.) Anyway, I am hopeful that there has been good resolution in your lives.
I do believe Charlotte is a good place for OHS. Presbyterian Hospital here has partnered with Cleveland Clinic and that gives me even more confidence!
Hang in there! Vel Turner
On April 17, 2012...
Hi Vel. Be sure you have ruled out mitral valve repair before choosing mitral valve replacement. Repair has better long-term outcomes because it leaves basic structures intact. Repairs account for more than 90% of mitral valve surgeries at centers of excellence. If you have been monitored over time and only now crossing the threshold for surgery, you may be a good candidate for repair. Keep the beat. -- DVB
Vel Turner Thank you for your input. I had been told numerous times that I would not be a candidate for repair, ... Read more
Vel Turner Thank you for your input. I had been told numerous times that I would not be a candidate for repair, but my surgeon yesterday finally explained it - seems that since my regurgitation was the result of rheumatic fever and I have never had any prolapse, repair won't work for me. Good to understand that! Vel
On April 17, 2012...
Hi Vel,
Welcome to the HVJ site!! May 16th is just right around the corner so good news is you don't have too long to wait. I am scheduled for May 7th for Aortic Replacement.
I have been remiss in not answering all my guestbook entries, but thank you for sharing with me. I also am going through the "I have so much to do before my surgery" syndrome, but at the same time, some days I can't seem to get much accomplished. The fatigue factor is rearing it's ugly head more and more these days. Am so looking forward to better health!
May your surgery go well next week, and my you have a great recovery! Vel Turner
On April 17, 2012...
Hi Vel,
Great to hear you found HVJ!
If you need anything, please let me know.
Keep on tickin!
Adam Pick
Vel Turner Thanks, Adam. I had to work at it a bit today to figure out how to respond to guestbook comments, fi ... Read more
Vel Turner Thanks, Adam. I had to work at it a bit today to figure out how to respond to guestbook comments, fix errors in my own postings, etc. Now, if I could just get a Word doc to cut and paste into the picture frame, I'd be in business. (I had to format and crop to get anything that worked...if you are as up on this as you are on the heart stuff, maybe you can help me! Really appreciate it!) Vel
On April 17, 2012...
Hi, Vel --
You've come to the right place! I'm scheduled for Mitral Valve repair on May 11th so I'm sure we'll be comparing lots of notes.
Selma Kaplan
Over the past few weeks I spent considerable time checking out HVJs' diagnoses, and separated out several dozen names of people with the same thing I have, so I remember you! (It is also interesting that my given name is really Velma - what a coincidence!)
Vel
On April 17, 2012...
Vel - I a from Charlotte and had my surgery 2/20 at Presbyterian uptown by dr Andrews. He is awesome. You should look into him. I am doing awesome 8 weeks post op.
How pleased I was to get your response, being from Charlotte and all. In fact, it was through googling the name of Dr. Andrews that i discovered HVJs through a post from Jan Beale. At that time, my doctor had given me two names, Dr. Andrews and Dr. Barry Chan. More recently it seems they honed in on Dr. Chan, so I am moving forward with him. I have heard nothing but raves about both of them, however.
Vel Turner
On April 16, 2012...
Hi Vel and welcome to HVJ. Its a great support community and a treasure trove if info. I just had my mitral valve replaced and all is going very well. It's wonderful that you've already chosen your surgeon. That's half the battle for a lot if folks. Take care. Lily Cardlin
By the way, for beginners, here's aime help with th acronyms. OHS is open heart surgery. AVR is aortic valve replacement. CC is Cleveland Clinic. I'm sure there are others but these are the ones that come to mind
Just realized in reading through my guestbook that you were the one who kicked it off for me (with the first entry) and I never thanked you! I was having a bit of a time navigating at first, but have the hang of it now. Also appreciated the acronyms.
I just read your entire journal (good writing, BTW), and did see that you started it post-op. So, I have a few questions for you - were you told beforehand that a replacement was needed, or did they try to repair first? I have been told replacement it must be, because of my childhood rheumatic fever. Different things cause different damage results, it seems. Also, did you get a tissue or a mechanical valve? I was really ready for the tissue, even though it might require another surgery in ten years, but then my dr. said I would in all likelihood end up with AFib anyway and need the anticoagulants.
Am getting more and more anxious to have this over and done with! Vel Turner