I haven't seen a post from you in a while and was wondering how you are doing. As I wait for my surgery on 9/8, I am very anxious and continue to read journals on this site. It seems to calm me. I have a question......now that you've been on the coumedin for a while longer, how are you feeling and are you having any issues with it?
I was reading through your journal and so happy that you are progressing well. I have to get a Aortic Valve Replacement and was wondering why you decided to get a mechanival valve. I believe you originally wanted a tissue valve. What kind of side affects, if any, are you having on the coumedin? I am so stressed about picking the best surgeon and the type of valve. This site has calmed me a little though.
It's great to read everyone's story and how great they are feeling after the surgery.
Beth, your days sound a lot like mine. I have started to avoid the naps and that helps me sleep through the night. I initially had a lot of back/shoulder pain but that is getting better too. If I sit or lay for a while, I have some pain around the incision but it feels more like muscle than the skin. I start rehab on Tuesday and my wife goes back to work on Thursday. It's going to be a lonely week until I get permission to drive. I'm glad you are doing so well. It's hard to believe where we were just a couple weeks ago. Jon Farmer
So happy you are doing so well. This is not an easy surgery to get over and still be upbeat, but you have done it! I know God has guided the Dr's and has protected you. You continue in my prayers each day, and I am thrilled that you may get to go home this week. When you feel up to it, give me a call and we will come and bring lunch. We all miss you.
Beth, glad you are doing so well but you have not posted (or else I did not see) what they replaced the mitral with (mechanical or tissue) and also did they do anything to your other valves that also had some regurgitation. And is your pulmonary pressure back to normal. I am interested in this because my surgery is July 12 and I have a couple of the same issues...and am going to CCF in Ohio. Thanks - when you feel like posting more details, but no hurry
Beth, we are waiting to hear from you husband - if he reads this, please post we are getting anxious to hear. Thanks - know you are doing fine, but he is probably like my husband's going to be - not wanting to leave my side even to set up laptop.
Hoping to hear from you soon and keeping you in my prayers
Beth, you are all "Prayed up" now a wonderful vision I use when I am in a situation where I have no control and the only one that does is our GOD, then I picture myself curled up in his lap like a little child under that tree with all the other little children kneeling looking up to him (we have all see that picture as children I'm sure) It comforts me to know that he has his arms around me -- as I drift off. GOD bless you. Emilyrae
Hi Beth. I have been thinking about you all day. I have tried to stay busy but my mind often drifts away to what awaits us. I hope you are holding up well. I hope you don't mind me saying this but it's comforting to know I'm not alone. I'll be praying for you. Jon Farmer
You are totally in God's hands, He is the Great Physician, and we are claiming His promise that "By His stripes, you are healed." All of our SS class as well as my family--church and personal--are praying for a swift recovery and back to normal very soon. Love you, girl. Caron
Hello Beth! We are getting closer to our day. I have ben spending some quality time with my kids and just preparing things for the recovery. I am really looking forward to getting this behind me and getting my life back to normal. I hope you are doing well. I believe we will both be fine and look forward to seeing the journal entries of your recovery. Jon Farmer
Beth, Emilyrae again. Do you know what your numbers were for the pulmonary pressure? Do you have alot of symptoms?
You know GOD works miracles - doctors doen't know everything - "Believe" - I love that word - I have it all over my house and found some beautiful garden stakes at Plow and Hearth that say Believe (with faires but I pretend they are angels) so now I have Believe outside too.. You are in my prayers.
Beth, this is Emilyrae Helfen, I noticed that you said that you had static pulmonary hypertension. Part of my mitral regurgitation is coming from pulmonary hypertension. It is not coming from my lungs, it is coming from my heart - they call it stiff heart or dystolic (sp) disfunction. Drs say my lung capacity is great. Obviously there are two different types of pulmonary hypertension - one comes from the lungs (leads to copd, etc) and the other one comes from the heart and leads to congestive heart failure. My number is 48 but goes up when I exercise but drs tell me if I don't correct the pulmonary hypertension now (which fixing the mitral valve will do) I will eventually have the hypertension even at rest and eventually go into Congestive Heart (which is what my Mother died from - I still have a copy of her echo in 95 and her mitral valve and chords were in very bad shape, as so were the triscupid (but not as bad) - I honestly believe there is a heredity factor involved - she lived to be 85 - I figure I get this valve fixed and I should be good for 95 (LOL) - so is your pulmonary pressure coming from your mitral valve? - My surgery is July 12, when is yours - who goes first?
Beth...from learning the hard way re writing stuff and it disappears. I discovered if I took a lot of time doing an entry, like when I'd write some, be interrupted, do something else, and then get back to writing the journal entry,I'd find it wouldn't upload....seems maybe there is a time out in the system when one is logged in. What learned to do was to write the entry in Microsoft Word, or such, and then copy and paste into the journal. Also, when I have made an entry, just before clicking on the submit button, I copy the entry. Then if it doesn't actually submit, I can paste it back into the entry box and try it again. Also, sometimes it would seem it didn't load and I'd click on submit again, and then discover it loaded several times, so I would have to delete some number of duplicate entries. Even sometimes when I only clicked submit once, it seems it picked up multiple submits and I had duplicate entries to delete. ...not perfect, but the jounral is valuable...Adam Pick has provided a great service. ...Barry on the Mtn in NM
Beth, you did not mention any other problems that your niece Tammy referred to (blood disease, lungs) if you do have other things going on, you would need to get the best. I try to stick with a saying I have in my kitchen "Do your best, say a prayer and let GOD do the rest"
Did they tell you how high your pulmonary pressure was - that could help be an indicator on how urgert the surgery is - mine was 48 mmgh had been up to 54 mmgh. Bless you and may GOD direct your decision. If you want to write me off line my email is firstname.lastname@example.org
..on the droid. Glad for you, Beth, that you have the CC appointment. Re keep running, just completed the Albuquerque Run for the Zoo...all 5 K with no walking..and beat my goal time of under 40 min with 35:42 per my Garmin. Thrilled...guess it is 7 wks post heart valve job surgery. Those CC team people made it possible
Mom has told me all about your health. I am sending prayers and thoughts of healing your way. Where I do agree about getting second opinions, sometimes we have to trust God when situations arrive suddenly. We had to trust God with Mark's surgeons as it happened so quickly. We just worry that with your blood disease, your lungs and heart that you don't need to wait too long. Mom and I love you very much and we will be here for you what ever you decide. Tammy
BTW, Beth, when I chose Dr. Mihaljevic, the only reason was I knew he was the one I had seen on You Tube doing the same procedure I needed. I didn't know then he is one of the top cardiac surgeons on the planet, if not the top, cardiac surgeon. But, Cleveland Clinic has a whole staff of top surgeons and I'm really not qualified to say one is any better than another. I know they work together and I know the Team they have assembled is tops. If you choose CC, depending on which of their surgeons you might choose, I suppose it could make a difference in how soon you get the appointment. Barry on the mtn in NM who 7wks and 2 days after my valve job willd run the best I can in the Albuquerque Run for the Zoo 5 K tomorrow, run as best I can and hope I can do the whole thing without any walking..but don't bet any money on it.
I agree with the second opinion as well. Your doctors may be able to help you get a quicker appointment into Cleveland clinic. Don't give up and I know time is of the most importantce. Hang in there. Prayers are being lifted for you!
Re how long did it take me to get into Cleveland. As I recall it was about six weeks when I asked for the appointment, which was probably a week or so after I sent my records, copies of echocardiogram, TEE, and angiogram for them to review. Vickie asked me which doc I wanted and I said Mihaljevic and she made the appointment. I had a fever the Mon of the week for which I was scheduled for Fri surgery, and got a new date for one month later....They did good work and I did a triathlon two Sundays ago, I guess it was the 5th week after surgery. I still can't run a whole 5 K without some walking, but I can run and bike and swim already because of those guys and the robot. ...barry
Although we have different diagnosis, mine is mitral valve prolapse with regurge, we both shared the pulmonary hypertention. My robotic valve repair in December completely aleviated the PH. You need to consider the best overall option with the lowest overall risk with the best possible outcome.
Discuss with you cardiologist or several if need be!
when I asked if the mitral valve regurgitation was causing a problem with the shortness of breath - they said no it was the reflux. And mitral valve not bad enough to replace yet - well, I am convinced that when a dr or hospital doen't know how to do something or does not feel comfortable doing something, they will wait until it gets worse enough that you have to have a replacement - because they know how to do a replacement, not a repair.- I think that is what they were waiting for with me. CCF says they are 80% sure they can do a repair and if not it will be a live tissue valve. Check out your dr and hospital and find out how many valves they have replaced - 2009 published statistics for CCF is 4,128 total heart surgeries, of that 2,677 were valve procedures Mortality rate world wide is 1.1% during this time, CCF was 0 - it covers 2005 to 2009. Hope this helps and GOD BLESS.
Beth, you did not mention who your doctor or hospital is. For something like this you want the best. I agree with the previous post here, I am a fan and patient of Cleveland Clinic. I went up there in Oct 08 to get a afib ablation and again in Feb 09 to get a PVC ablation. I was having 32,000 pvc's a day, my last monitor was only 147. My local hospital and doctor told me that a pvc ablation could not be done on me because I had had previous open heart surgery for a small hole in my heart in 1984 at 40 years old - scares from this surgery prevented them being able to get to the pvc site - but CCF did - Dr. Walid Saliba - in fact I now have a bumper sticker on my car that says "GOD AND CLEVELAND CLINIC HEALS MY HEART" - CCF is going do heal it again in Aug 2011. While I was up there in 2009 for the PVCs,, they saw that I had high pulmonary pressure - 84 mmg (norm is 30-35) no symptoms then but in the last year and half while local doctors have been running tests on me, I have started with some shortness of breath (however can still do treadmill but not as long and I hve to push through the first 5/10 min then I go for an hour. After a yr and half of tests down here, they said shortness of breath was from reflux and I have distolic dysfunction - gave me an ace inhibitor and said hve a good life. I asked if my mitral valve refurgitation had anything to do with it because I always get copies of my echo and I had noticed over the years it has gone from mild to moderate to moderate to severe - they would do another echo and get differenct numbers, but my atrium was also increasing and now out of spec.
I though I'm, going back to CCF and take my tests for them to review. It took them only 3 minutes to spot something on the test they did not like and they scheduled me for a stress echo - they explained to me that pulmonary pressure (with exercise) which is what local drs told me I had would eventually extend to at rest - I thank GOD I got this in time and that he lead me back to CCF. I would be more than happy to talk to you - my email is email@example.com. GOD bless.
Still praying for you girl, no matter what the dr says or does, you are still in God's hands and He is the Great Physician. Remember, by HIS stripes, we are healed. Claim it, pray it, count it as a promise. Love you, Beth, Caron
RE: I just still have to make that big choice of mechanical or bioprosthetic, any thoughts?"
Beth, my thought is "big choice of mechanical or bioprosthetic" is a faulty delimma, to start out with. The very first question should be can the existing valve be repaired. That question, my opinion, should only be answered by someone that is a recognized expert in valve repairs and who does more valve repairs than anyone else you can find, not anwered by someone who is not and who will sell what he/she knows how to do best. Depending on the issue, some of the surgeons make the determination of repair or replacement when they actually get to the valve and see it. I have learned the repair experts will ask you, just in case they can't repair the existing vavle when they see it, then which type would you prefer. If that becomes the case, to replace it, then, my "lay" opinion is to go with the animal valve because it will not require you taking coumadin for the rest of your life. My opinion, summary, you are not advocating enough for yourself if you do not get an opinion for a doc that is as experienced as you can find in doing the repairs. I found Cleveland Clinic Foundation and so glad I did, who I suspect are the best on the planet for this stuff. I am positive there are others that are perfectly good to do it. As I interviewed, I started out my questions with do you take my insurance, and went from there. Barry on the mtn in NM, who BTW, because of the super docs and team that took care of me, is doing serious running, biking, and..well...swimming I never was good at anyway, but doing it..and did a sprint tri last sunday...sunday before went out to do 5K run (3.2 miles) and did 5 miles....and tomorrow will be 6 wks post surgery for me. It is the team of people that took care of me that deserve the responsibility, the credit, for me being able to do this. If I had the local guy recommended saw my sternum, who had my wife completely sold (it was a sell) that no one else could do it better..if he had done it no telling what he would have done.