Similar to Sasha below, and to you, I was diagnosed with endocarditis after dental work under the new "no prophylactic antibiotics needed" guidelines. I eventually had AVR on 12/12/12 and just finished a 6 week course of antibiotics this past week. The cultures from the valve during surgery were negative, so it would seem that the drugs did their thing leading up to surgery, but I am also somewhat terrified of contracting it again. I am also trying to avoid thinking the worst as soon as any kind of symptom appears. So far, things seem good, except for the effects to my colon of being on antibiotics for the past 9.5 weeks, and 20 of the past 60.
I hope you are still doing well and I am looking forward to the days when I post my 6, 12 and 24 mon th anniversary posts to this journal!
Just wanted to say thanks in giving me hope. Looks like we share similar stories, I was diagnosed with strep endo and currently am on antibiotics via picc line. As a 33 year old, I struggled how a simple dental cleaning caused such mess. I am a candidate for AVR, but I am scared to wits about the recovery, and returning "back to normal".
Your journal gives me hope that this is 'overcomable', and things can go back to normal. As you mentioned, I am scared about endo coming back, and another OHS - but I guess thats all of our fears.
Regardless, I wanted to say thankyou. Your journal brought many emotions out of me, but most important emotion hope.
So good to hear from you and hear you are doing so well. This is Mary, Danny's mother, he is doing very well, too. He is attending college and working out like crazy and playing hours of basket ball, of course. I understand your need to back off from your journal. I ALWAYS have to be in a very good place (feeling confident about Danny's recovery) before I can come on and read other's stories. We've had a few scares (like when he had strep throat and ran a high fever) but am trying to make peace that he is a normal young man who will occasionally run fevers and be sick like normal young men. Of course, you understand that we can't EVER let anything just slide and assume it is a normal fever. He is doing very well and seems to be in his best physical shape ever. Of course, he is just 22 now. I'm a grandma for the second time and they both bring me great joy. So, so good to hear from you and that you are doing so well. Take good care of yourself and enjoy life. Sincerely, Mary
Sorry, I didn't realize I would be showing up as anonymous. Still getting used to the site. Hopefully it's not like facebook, where everytime you get it figured out they change it. LOL.
My name is Terri and I started a journal on here this afternoon. My website is www.terrigrimes.com and has my email info if you want to drop a line. I'd love to hear your experiences!
Dr Pollock has agreed to do a paranormal experiment with me during surgery. He is going to say a word or phrase to me while I'm on the heart/lung machine and after they pull the vent out he's going to ask me what he said. I'm hoping to be able to tell him. If anyone can it will be me. I write paranormal romance novels and also belong to a local ghost hunting team. They're very excited about the possible paranormal aspect of this. I'm so glad I can be their test subject and take one for the team. Ha ha.
I too am in Louisville and will be having my valve replacement at Babtist East. I was wondering which surgeon you used and also you mention something whihc leads me to believe you may have had "an experience" perhaps during your surgery. I'm having my surgery Oct 19th and I've discussed the paranormal side of things with my surgeon today-Dr Sam P. I firmly believe in the other side, having been in the white light before. And I embrace that part of the experience. I just wondered what other people are experiencing during this surgery. I don't mean to pry and if you'd rather not discuss it I certainly understand.
Glad to see a fellow Louisvillian have such a postive experience! Congrats on your 1 year anniversary!
I so enjoyed all of your posts, and could relate to a lot of it. I wish you nothing but the best life is to give you, may you go through it uneventful for the remainder of your journey. I will miss your posts, your outlook on things, and your humor throughout it all. God speed my friend, and remember to sit back, enjoy the ride God has given you and enjoy the view..
Thank you for sharing your journey with everyone here. It's actually a good thing when you can share your rocky road because it points out the possible reality of heart surgery recovery. While all recoveries are different the key is the word "recovery". Does it really matter how straight the road to good health is as opposed to the welcome at the end of the trail? Life is grand. Continued healthful success on your journey. Cheryl, Ontario
Wow, I just found your journal and read what all you've been through. You have an amazing story to share and I am glad you have progessed so well. I'm new to this site and I'm trying to get some advice. I have Aortic Valve Replacement Survery set for 9/8/11 and still can't decide on what type of valve I want. I was wondering what type you got and if it's mechanical, how are you doing on coumedin blood thinner. I know the pros and cons of mechanical vs. tissue, but I can't seem to make a decision. My surgeon said either one would be fine.
This is Mary James, Danny's Mom, it was very good to hear from you and to find out you are doing well. Danny is doing AWESOME, as well. In fact, at 21 he believes he is indestructable and seems out to prove it. He is back to his rigorous workouts (500 push ups and 800 sit ups a day) and hours and hours of basketball, of course. I have to be in a very strong, good place to come on hear and read people (especially yours) stories. Really Danny feels better than he ever has, even after his first surgery. They are not sure whether his endocaritis was lingering from the very first surgery and that is why he didn't feel as strong. I had him to the doctors (several different ones) in between that time and when they FINALLY diagnosed the endocarditis. A few weeks back he ran a fever and was starting with chills and we were both a physical, an emotional wreck. He got over it very quickly, however, waiting for the blood culture results (which I INSISTED they do) was very heart wrenching. I know that you understand this. Nothing showed up and he is fine. You are so right about BELIEVING that you are really recovered (and your love ones, too). We both know, however, that your can't let ANYTHING slide after what you both have been through. On a more positive note, Dan starts back to college next week. He is very excited and has a new girl friend. I want you to know that as much as it SCARES me to read your story; it really has helped me. Another positive new event is that I'm going to be a Grandma again. My daughter, Aimee, who incidentally is a Cardiac Nurse, is expecting in March. She has a two year old, Tyler, who is one of the greatest joys of my life. So glad your doing well Jerry, You and Danny are my heroes. God bless you.
Yep doing the lawn again. No problems, actually feels really good. Bikes are in getting new tires and getting them serviced. Then we'll be good to go. Can't wait! I feel pretty darn fantastic. I still get those spells, but going to a new rheumatologist to see what they can come up with. I really think its Lymes, but guess gotta go through the process. Time will tell. But, for now, all is wonderful. Coming up on one year shortly, June 2nd. Amazing, absolutely frickin amazing, you know!
Good luck with your rock wall. I'm going to pull some weeds in our rock garden now. Beat the rain, I hope.
Talk again soon,
Good to hear from you.
The flooding sounds really scary. I live on top of a mountain ridge, so no worries about any flooding here. We do get very strong winds tho.
I have a doctors appt. on Monday and I will chat with him about thoracic outlet syndrome. I do feel that it just might be something to do with nerves. But, the fever has me a little stumped.
Mowing the lawn was great. I actually enjoyed doing it. Sounds weird, I know, but has been the first since surgery and another step toward normalcy. I know you know what I mean.
Enjoy your spring and summer, don't overdo, k? Take a little time to enjoy at a slower pace for a little while.
No, haven't gotten the bikes out just yet. Soon tho, I hope. I live in Central PA, and old man winter just doesn't want to let go just yet. Probably will have them out in May. Looking forward to that. Its been a while since we have had them out. Miss it!
Its good to take a slower pace for a little while. Just one of those hiccups you have to work through. Your doing great tho. Hang in there my friend, it keeps getting better with time.
I am so happy to hear that all is well and no infection of the valve. WHEW!!!!!! Big sigh of relief! You know Jerry, I went through some of things you just went through, some tests too. Put me in the hospital for a few days because I had the symptoms of a valve infection. Chills at night, some were pretty violent in nature, low grade fever, still don't know what it was, because all the tests came back negative. But, those symptoms have seemed to have wane away now, and I'm feeling better than ever. Some days better than others, instead of some good, some not so good.
Maybe you were going at it too fast, too soon, and was a way for your body to say, "slow down so I can catch up". Take a deeper breath and savor the moments instead of plowing into the next experience. You continue to be in my thoughts and prayers. Diana
One step at a time. The cultures sound positive. I had the TEE done in October when they thought that I had an infection in my valve. I insisted they put me to sleep for it, so they did. So, I don't remember a thing. Just waking up in recovery telling me all is good. Keep the faith, my friend. Your in my thoughts and prayers, as always.
You are definitely in my thoughts a prayers. I hope and pray that things go positively as you move forward. It is amazing what the doctors can now do. (I am 25 days post op for aortic valve repair and aneurysm removal/ aortic root replacement.) I, too, had a set back and rehospitalization due to an ulcer, but I am back on the road to recover as I know you soon will be.
I am sorry to read you may have to go through this yet again but you are young and will be able to battle what you must. I realize you are suffering great disappointment that this could happen. I hope your doctors are able to enlighten you as to why the luck is landing on your doorstep and perhaps they might find the solution so you don't have to go through this another time. I shall also be praying you keep your spirit high as you face this challenge. Keep us posted.
That goes without saying, your in my thought s and prayers. Your outlook is amazing, keep good thoughts and all will work out. God only gives us what he knows we can handle. You made it before, you'll do it again, if you have to. You bounced back so quick before, with your attitude and positive thinking, you'll be ok. Do keep us up to date, Jerry, and hang in there. Hopefully its only a minor hiccup, and you can get back to doing what you do best,........living!
I hope the tests come back with good news. I can't imagine what you're feeling right now . . . but as you said, you're catching whateveritis early and I hope that they'll be able to stop it in its tracks.
Don't fear hospital food . . . we'll sneak good food in if we have to.
It's was so wonderful to hear you are doing so well. 2010 was quite a year for many of us and it's great we're feeling so much better than this time last year! I hope that gives hope to those who are where we were a year ago.
Take care - hope you can stay off the yogurt and probiotics!!
I so look forward to your posts, because it so upbeat and positive.
Can I ask you a question? When you had your valve infection, what were you symptoms? I am so terrified of the possibility of that. Silly, but with the few scares I have had, that was the one thing they checked for thoroughly. Including the TEE.
I'm feeling wonderful at this point. I do get very tired at times. Some days better than others, and I'm almost 9 months post op. My incision still gets sore, especially when the weather changes, my sternum doesn't feel bad until I give a good sneeze. I've gained a good 20 pounds since surgery and I'm fighting to get rid of them, but I'm afraid its a loosing battle right now. But, I'll continue to try.
I'm anxious to get on my motorcycle and ride in the wind once again. Its been a good year or so since I rode, and I sure do miss it. Look forward to the warmer weather so that I can ride.
I wish you nothing but the best and look forward to your post near your 1 year anniversary.
All my best,
What a great entry. Life is good and God is good. Looks like you have a lot to look forward to doing. It will be great to take those trips with a healthy heart and body--enjoy, you deserve it.
Hey Jerry, Thanks for checking in on my journal. Sounds like you are doing great! I'd like to talk to you about your experience since I am still trying to decide about the valve. If you don't mind sending me your phone number you can email me at email@example.com.
We have never met but I have such respect and admiration for you and your empathy and compassion for my son Danny. We are FINALLY home! It has been the hardest time of both of our lives. I stayed over night at the hospital the whole time except for one night (when my FAMILY and his Doctors INSISTED I take one night off). His father stayed with him. It has been a NIGHTMARE and I know you understand that. I pray for your continued good health and am so glad to hear you are resuming your life with such ZEST. Danny lives to play basketball and I have NO DOUBT he will be back on the court soon. The night before his first surgery he played basketball for 6 hours in the blistering heat of July. He is very athletic and did 500 push ups and 1000 sit ups daily (before surgeries, of course). Danny developed a VERY BAD reaction to one of the many drugs in the hospital post op. His skin was on fire and he was covered head to toe (literally) and was miserable. They think it was probably the vancomycin, or the gentamycin. Were you on either of these meds? Did you have any problems with these anti biotics? He is on Daptomycin at home. The nurse is coming today to demonstrate how to administer this drug. His kidney functions which had ALWAYS been normal rose substantially but have thankfully come down to the closer to normal range. All of these complications and they punctured his lung while inserting his new pic line (old one pulled out to eliminate possible infection there). They caused a pneumothorax while doing so and delayed his going home for two days. He was SOOO ready to leave that place. Thanks for you VERY genuine concern for my son. He is an AWESOME 20 year old. I have three children and love them all dearly but this one is especially unique. I hope I haven't talked your ear off but I feel such a connection to you and your health situation. I will keep you in my prayers and thank you sincerely for responding to my son's situation. With deepest gratitude Mary James
Happy New Year Jerry and all the best to you. Enjoy life to the fullest.
Like you, I reflect many times how I was before surgery and how I am now. It totally blows my mind how far I've come since surgery. Modern medicine at its best, by far.
I wish you nothing but the best. I loved reading your post. I think you summed it up pretty good.
You look awesome, my friend. Including the scar. I'm proud of my scar, too, because its a reminder, in my mind anyway, that I survived. Continue to heal, enjoy life, you certainly have a lot to be thankful this year.
Happy Thanksgiving and have a wonderous Holiday Season.
Thanks for all your insights and for keeping us all who are about to take this on in your
I very much appreciate your perpesctives and life lessons.
Sounds like you have wonderful things going on in the next year!! Enjoy--
I know that they have done cultures in the hospital when I was in, in October. Lots of them. They also did chest xrays, ekgs, echos, ultrasounds, and lots and lots of different blood work, urine analysis, and God knows what else. What are nail splinters? I have not seen an infectious disease specialist. I was actually wondering about Lymes Disease because of living in the woods. I also had Rheumatic Fever when I was a kid, maybe why family doctor is sending me to a rheumatologist, but they did blood work in the hospital for that, and came back negative. So, I don't know, I'm at a loss. All I know is when that pain hits, it is like no other pain I have ever in my life experienced. Oh, no stomach or colon issues.
Thanks for your input, Jerry, its all appreciated.
Hi Jerry thanks for your heartfelt note, (no pun intended) I always love to read your entries, you are so expressive. However, when I read about your fall I could not believe it. It reminded me of my fall after my thoractomy incision of my ASD repair and a few weeks insisted I get on a ladder and clean windows. Down I went struck R side of chest @ incisional site as I was falling. My children were small watching could not believe the scene. Thanks again for your support I will get through this mess as well and will continue to keep my spirits intact and express my gratitudes each and everyday
Keep in touch and stay on your feet
Found myself holding my breath as I read this last entry. You do live on the edge. Did you get the food poisoning at a restaurant and if so,hope you reported them to the board of health. What a lot of exciting trips you are looking forward to. Enjoy life and your repaired heart. I look forward to your adventures.
Enjoy the journey of life - it is all we have. I would encourage you to listen to your life and all that it offers.I have been dealing with a cold now and the sneezing has been rough. Iam glad that I am 7 weeks out. Best of luck on the journey!