Anyone have any experience with recurrent pericarditis?
In May 2015, I had OHS to repair my aortic valve, which was damaged from endocarditis. I had pericarditis ...Read more
Anyone have any experience with recurrent pericarditis?
In May 2015, I had OHS to repair my aortic valve, which was damaged from endocarditis. I had pericarditis a few weeks after surgery and then again 2 months later in July 2015. In July, it was treated aggressively with Prednisone (steroids) for a couple months plus a 6 month course of Colchicine, which has been shown to have some efficacy with pericarditis. I was tapered VERY slowly off the Prednisone.
Much to my dismay, 2 weeks ago I got pericarditis again - for the 3rd time. I am back on Prednisone and Colchicine and hoping for the best. There really aren't any other treatment options that I know of, except maybe IV Immunoglobulin, and even this is not supposed to be a silver bullet. Recurrent pericarditis seems to be uncommon, understudied, and not understood that greatly.
Has anyone out there dealt with this or know of any experts that might be able assist me?
Thanks!
Jeff (41 years old)
Infection after surgery - major scare
Hi Everyone -
I just wanted to share something I went through recently, as I haven't heard it discussed on this site. ...Read more
Infection after surgery - major scare
Hi Everyone -
I just wanted to share something I went through recently, as I haven't heard it discussed on this site. Last Sunday, 5/24, which was 3 weeks after my aortic repair surgery, I had a fever. At the recommendation of a nurse on-call I talked to, I went to the ER. I was admitted to the hospital and stayed until last Friday (5 nights total).
I am fine now, but the fear was that I may have contracted a serious bacterial infection, such as endocarditis. I was put on IV anitbiotics immediately and, I endured numerous blood tests, CT scan, X-rays, pleural fluid test, over the week I was in the hospital. As it turns out, the doctors believe that I may just have pericarditis (inflammation of the pericardium) or post cardiotomy syndrome (inflammatory response due to heart surgery). I am back home now, feeling pretty good, but still taking anitbiotics intravenously through a PICC line for another week.
I hope everyone out there is feeling good. I am curious if anyone in the community has dealt with a similar situation.
Keep on tickin'
Jeff
I'm sure that was a major scare, Jeff!
It's good you called the nurse, and got to the hospital, when ... Read more
I'm sure that was a major scare, Jeff!
It's good you called the nurse, and got to the hospital, when you did!
I'm glad you are back home....and feeling pretty good.
Antibiotics another week is a good thing!
Praying for your continued healing!
Tammy Pilcher Jeff, I'm so glad you're doing better! That would be a scary thing that soon after surgery. Prayers ... Read more
Tammy Pilcher Jeff, I'm so glad you're doing better! That would be a scary thing that soon after surgery. Prayers and best wishes for your recovery!
Ray Lockhart Great decision on your part and a great heads up from the nurse. Glad that it is worked out for you ... Read more
Ray Lockhart Great decision on your part and a great heads up from the nurse. Glad that it is worked out for you without any further problems.
Ray
Kenneth Cole I had no problems except for some afib. Your infection might explain your pain, I still have some di ... Read more
Kenneth Cole I had no problems except for some afib. Your infection might explain your pain, I still have some discomfort after 6 weeks but it's minor, most of the time I don't notice it. God bless you, hope you heal good soon.
13 Days post-op:
I can't believe how good I feel. I mean, I don't feel perfect. I still am taking Oxycodone daily. But I never thought I would feel this ...Read more
13 Days post-op:
I can't believe how good I feel. I mean, I don't feel perfect. I still am taking Oxycodone daily. But I never thought I would feel this good not even 2 weeks out. I sleep 7-8 hours straight every night. I take a few walks around the block every day. I'm up and about in my house. I can fix myself a simple meal.
The post-op stay in the hospital was tough. There was a lot of pain and it took a bit to figure out what medications were best for me. However, after flying back home from the Cleveland Clinic, things have been going really well.
I have a meeting with my cardiologist in early June. My plan is to start cardio rehab after that meeting and head back to work in mid-June. I think it will take some time to do the activities I enjoyed before the heart issue (lap swimming, mountain biking, running around with my little kids), but I'm confident that I'll get there.
For those with upcoming surgeries, best of luck! You can do it. Go in with a positive attitude and I believe you, too, will be shocked about how good you start to feel.
And to those recovering, I hope things are going well and you are experiencing little successes.
-Jeff
Adam Pick Awesome Jeff!!! There is nothing better than hearing such a great, early recovery update. Thanks for ... Read more
Adam Pick Awesome Jeff!!! There is nothing better than hearing such a great, early recovery update. Thanks for sharing. Take it nice and easy! Also, be a little careful with the Oxycodone. That stuff can be a little addictive as I learned.
Summer Lane This is great news!!!! Keep it up and take it easy. Don't over do it. Love seeing all the positive st ... Read more
Summer Lane This is great news!!!! Keep it up and take it easy. Don't over do it. Love seeing all the positive stories on here
Jennifer Miller That's great, Jeff! I'm sure you'll be running around with your little ones sooner than the other act ... Read more
Jennifer Miller That's great, Jeff! I'm sure you'll be running around with your little ones sooner than the other activities, but by giving yourself enough time to heal, it's all possible. Staying on top of the pain makes a huge difference, doesn't it?! You'll see you need less pain meds if you don't push yourself too hard. Happy recovering!
I'm just getting back from dinner at my mother-in-law's house. Bonnie really is such a great cook! She made this cheese, blintz souflee that was yummm-eeeeee. :
Day 5 -
Getting out of the hospital tomorrow. Feeling a little bit more clear-headed and stronger every day. The narcotics made me really dizzy, disoriented, ...Read more
Day 5 -
Getting out of the hospital tomorrow. Feeling a little bit more clear-headed and stronger every day. The narcotics made me really dizzy, disoriented, and messed with my GI tract, so I am now only taking high doses of Tylenol and Motrin.
I'm just beginning to wrap my head around how long this might take to lead an active life like before surgery. It's going to be a lot of work and frustration, but I feel like any sports related (or old man) injury I get in the future will not feel like such a big setback anymore.
I have a long road ahead, but I am so thankful that my surgery was a success and I got to keep my original BAV. My friends and my wife's friends have shown so much support and character that I am also glad to have had this opportunity to take a "friend inventory" and see who I mean a lot to. I now know which friendships are worth investing in. Seeing my funeral attendee list is a little too late.
Anyway, just some thoughts here on Day 5.
-Jeff
Kenneth Cole Good for you Jeff. If you see my posts you can see my progress, but I'm a bit older then you so ever ... Read more
Kenneth Cole Good for you Jeff. If you see my posts you can see my progress, but I'm a bit older then you so everyone heals at a different rate. Be kind to yourself for a few day's after this surgery, don't rush it my friend.
Bob Bemben Hang in there, Jeff. I am 8 days post op and healing up a bit faster than I had anticipated. Walkin ... Read more
Bob Bemben Hang in there, Jeff. I am 8 days post op and healing up a bit faster than I had anticipated. Walking has been a little easier than I expected and I am walking further than I thought I would at this stage. Even the chest soreness (which is still with me, believe me) is easing a little bit every day. I am beginning to believe that my biggest problem will be the patience required to let that big broken bone heal. Keep the faith!
Dan D. Good to hear that you're leaving the hospital. Though I'm 10 days out of surgery, I'm also accumulati ... Read more
Dan D. Good to hear that you're leaving the hospital. Though I'm 10 days out of surgery, I'm also accumulating a "friend inventory" as something to distract me from the upcoming life-altering event. I'm floating between calm determination (mostly) and anxious terror (sometimes).
Tammy Pilcher Yay Jeff! Congratulations on your great outcome and prayers for continued recovery!
Wiliam Height Looking forward always seems longer than looking backwards. Each week will give you renewed strength ... Read more
Wiliam Height Looking forward always seems longer than looking backwards. Each week will give you renewed strength and at 12 weeks, you will be back to close to normal as far as active lifestyle goes.
Tim Goff getting out was a huge plus as I felt- ok I am on to the next phase of recovery. Keep up the positive ... Read more
Tim Goff getting out was a huge plus as I felt- ok I am on to the next phase of recovery. Keep up the positive thoughts and you will progress just fine. Dont let the setbacks hang you up for long
Jennifer Miller Great news, Jeff! Will you be able to fly home today? I can imagine how badly you must want to see yo ... Read more
Jennifer Miller Great news, Jeff! Will you be able to fly home today? I can imagine how badly you must want to see your kiddos!
You're right: it'll take a LOT of hard work & frustration on your road back, but you WILL get there. Try not to compare your progress against any one else's, either: that's a sure fire way to overdue it & end up very frustrated.
Take care, Jenni
I'm at about 72 hours post surgery. I'm less sore and able to get in and out of bed with more ease. However, I am extremely foggy headed. Has anyone else ...Read more
I'm at about 72 hours post surgery. I'm less sore and able to get in and out of bed with more ease. However, I am extremely foggy headed. Has anyone else experienced this haze? How long did it last for you?
Pat Bluemel are you on narcs? I had to go off them on day 3 due to complete brain fog and hallucinations.
Tammy Pilcher I think it could be meds too, if you're taking them. I didn't have anything like that after I got ho ... Read more
Tammy Pilcher I think it could be meds too, if you're taking them. I didn't have anything like that after I got home, but I was only taking Tylenol by then.
Tim Goff Wait you had hallucinations! I must not have taken the right meds! Kidding aside the adverse effects ... Read more
Tim Goff Wait you had hallucinations! I must not have taken the right meds! Kidding aside the adverse effects of the pain killers can be minor for some, like myself, and nasty for many others whom I feel bad for. If the pain killer causes other problems then those patients are in a tough spot. Jeff, I would say that the sooner you can get off of the pain killers and deal with just tylenol or ibuprophen the better. Once out of the hospital I was only taking 1 pill 1-2 times per day and within 10 days I was down to 1 per evening and all done by day 14. I hope it gets better for you and glad to hear the pain is subsiding. It gets better, for the most part, each and every day.
Glad you are less sore and moving easier! General Anesthetic can have an effect on you for a while, t ... Read more
Glad you are less sore and moving easier! General Anesthetic can have an effect on you for a while, too.
God Bless You as you recover!
Terrie Syvertsen 66 years! Congrats on being on the other side! Seriously Jeff, what you are experiencing is more than ... Read more
Terrie Syvertsen 66 years! Congrats on being on the other side! Seriously Jeff, what you are experiencing is more than likely your brain dealing with the anesthesia leaving your system coupled with the meds you are on. I had pain pills that I couldn't tolerate and ended up on Tylenol only(which for me worked) so it is a matter of waiting it out a bit and letting the nurses know what is going on and they, will work it out with you until you are more "balanced".
I also found that the more I walked the halls In the hospital or remained seated it seemed to wear off "kinder", less pain meds needed. Take it easy and even with your first walks take your time kid. It is great that you are able to get in and out of bed easier-just don't be in a hurry! Isn't it a great feeling to be through the surgery!!! Happy for you! Happy Healing.
Terrie Syvertsen Forgot to say hello to Jeff's wife Sarah! Happy for you both and wanted to wish you luck while caring ... Read more
Terrie Syvertsen Forgot to say hello to Jeff's wife Sarah! Happy for you both and wanted to wish you luck while caring for your husband in the recovery phase. Hats off to all the people who step up and care for those of us who have had surgery as it is an important job and I want to say "Thanks to you all"
especially my husband Gary who is still living with a patient who is always
in a "fog"! Take care Jeff and Sarah and Happy Healing!
Pat Bluemel Tim yes, we knew there was something up when I asked my nurse Rachael why she was wearing a dream cat ... Read more
Pat Bluemel Tim yes, we knew there was something up when I asked my nurse Rachael why she was wearing a dream catcher and various other feathers on her pony tail when she didn't even have a pony tail. Jeff ask your nursing team if you can try other non narc based meds like Tramadol and others and see if that helps. I couldn't even read a sentence or use my phone while on the heavy stuff. Duane, I missed all that fun stuff in school!
Greg Johnson Check out pump head. Similar symptoms to what you describe. Goes away for most.
Jennifer Miller My nurses all said the older the patient is having OHS, the less pain they have because nerve endings ... Read more
Jennifer Miller My nurses all said the older the patient is having OHS, the less pain they have because nerve endings die as we age. Since you're so young, it's no surprise you may need narc pain meds longer. The haze/fog is all part of post anesthesia too. Rest, relax & stay on top of the pain--you'll heal faster!
Hi all, this is Jeff's wife sarah. I just wanted to let you know that Jeff's aortic valve repair was a success!! Yesterday, Dr. Svensson at the Cleveland clinic ...Read more
Hi all, this is Jeff's wife sarah. I just wanted to let you know that Jeff's aortic valve repair was a success!! Yesterday, Dr. Svensson at the Cleveland clinic met with us and said that there was a 70% chance that a repair would work. Well, I am happy to report that the surgery went very well this morning. No complications. Jeff is able to keep his valve!! Jeff has told me repeatedly how wonderful this site and it's members are. It has been such a great source of comfort and support for him. Thank you all. ❤️
Debbie Poole Great news! He's on the road to recovery. I will keep your family in my prayers.
Tammy Pilcher Great news! Praise the Lord! Thank you, Sarah, for the update!
Jason Lathrop Fantastic news! Congrats on the great outcome. We've all been wondering how his big day went. Thanks ... Read more
Jason Lathrop Fantastic news! Congrats on the great outcome. We've all been wondering how his big day went. Thanks for the update.
Janice Powell God Is A Awesome God!!! Praised God he made it possible and he deserve all the glory Amen!!! I hope h ... Read more
Janice Powell God Is A Awesome God!!! Praised God he made it possible and he deserve all the glory Amen!!! I hope he recovered quickly Iclaim it!!! I claim it!!!!
Robert Osmachenko Good stuff. It must bring you peace of mind knowing that he has his original valve. Peace.
Steven A Husted great news praise the lord for another success amen
Ben Hyman Awesome news. I hope you have "smooth sailing" from here on out
Greg Milis Great update. God help him to have an easy recovery.
I'm going to the Cleveland Clinic in a couple weeks for an aortic valve repair and I'm a little concerned about my care when I return home. The issue is that ...Read more
I'm going to the Cleveland Clinic in a couple weeks for an aortic valve repair and I'm a little concerned about my care when I return home. The issue is that I have 2 really small kids (ages 2 and 5), so not only will they not help out, but my wife will be running around caring for them.
Has anyone had any experience with hiring a home health aide/nurse? Do you need someone available to assist 24/7? If I were to hire someone, how long post-surgery do you think it is necessary?
Thanks everyone!
Jeff
Lewis Garlisi There have been some recent discussions about this issue on this site. People have different opinion ... Read more
Lewis Garlisi There have been some recent discussions about this issue on this site. People have different opinions, but my take is that your wife could use some extra help with things like preparing meals, running to the store/pharmacy, and with watching the kids while she helps you shower. You have the benefit of being a young ohs patient and may heal quickly, but the first few days back from the hospital can be quite difficult. I had my sister stay for a while to help my wife, so i didn't need to hire anyone.
Daniel Spurgeon My Dad stayed with us to watch my little kids. It would have been a lot to ask of my wife otherwise. ... Read more
Daniel Spurgeon My Dad stayed with us to watch my little kids. It would have been a lot to ask of my wife otherwise.
As a wife to the patient in a few weeks coming up, I am very concerned with our house not being restf ... Read more
As a wife to the patient in a few weeks coming up, I am very concerned with our house not being restful enough for my husband once he comes home. Our kids are 5 and 10. I know so many of you have done it, so it will work out one way or another! Will definitely be relying on family! I am forever grateful for all of these responses too!
Jeff Lashins Thanks for your thoughts everyone. My parents and my in-laws both live on the other side of the coun ... Read more
Jeff Lashins Thanks for your thoughts everyone. My parents and my in-laws both live on the other side of the country from my family. They'll be flying in at different times for coverage, but this is when it's hard not to live near relatives. :(
Jason Lathrop Just did a mitral valve repair with a 3 and 6 year old in the house. Had moms or sisters stay with us ... Read more
Jason Lathrop Just did a mitral valve repair with a 3 and 6 year old in the house. Had moms or sisters stay with us for a couple of weeks to help out. Honestly, we really only needed it the first week. It's been tough on my wife, but she's holding up pretty well. By about a week out, I was pretty self sufficient, so as long as she takes care of the kids, I can get by.
Our local friends put together a meal train for us, so we've had lots of dinners delivered. That's been as useful as anything, not really having to cook at the end of the day (when we're exhausted and the kids are going bonkers).
Curious what you have told your kids? We gave ours the very simplified version and they have been champs about it, which surprised me. They are usually (like young kids are) impulsive and narcissistic. In this case, they've been so gentle and loving with me. I can see that my boy, the six year old, is pretty sad sometimes. Before all of this, I was super fit and a very active dad who played and wrestled with him all the time. That will be back, but it seems like forever to him.
The most frustrating part is that my three year old has all kinds of power now. I used to be able to just pick her up and move her or restrain her if I needed to, but now all I can do is talk to her. Which isn't that helpful when she's throwing a total three-year-old tantrum. Anyway, reach out to me if you have any specific questions about recovering from heart surgery with young kids! On this site or at my email jason [@] jasonlathrop.com
Hi all -
I'm new to this site. I'm 40 years old and recently got over a case of infective endocarditis. Unfortunately, the bacteria created a perforation ...Read more
Hi all -
I'm new to this site. I'm 40 years old and recently got over a case of infective endocarditis. Unfortunately, the bacteria created a perforation in one of the leaflets of my bicuspid aortic valve. I am now lookiing into getting this leaflet repaired.
Does anyone have any experience with this type of repair?
Thanks!
Jeff
Guy Blachman Hi Jeff - I had MV repair surgery last December and have 3 kids under age of 3 in the house with no f ... Read more
Guy Blachman Hi Jeff - I had MV repair surgery last December and have 3 kids under age of 3 in the house with no family help. My wife and nanny took complete care while I recovered, which took 3-4 weeks plus another few weeks to complete the "3 months no lifting" restriction. It wasn't easy but went ok.
Jeff Lashins 3 months with no lifting? Wow! I didn't realize that. When were you able to go back to work?
Jeff Lashins 3 months with no lifting? Wow! I didn't realize that. When were you able to go back to work?
And 3 kids under 3. That's just plain crazy! It'll probably be a blast in a few years.
Guy Blachman Ya apparently its around 90 days of "no lifting more than 10 lbs" to allow the sternum to fully heal. ... Read more
Guy Blachman Ya apparently its around 90 days of "no lifting more than 10 lbs" to allow the sternum to fully heal. Yes, 3 little kids is a handful..sometimes a blast :-)
Planned to take 5 weeks off work, but got 'cabin fever' after 3 and went back to work early..
Jennifer Miller The 10 lb. rule applies not only to lifting, but also pushing or pulling things, like opening heavy d ... Read more
Jennifer Miller The 10 lb. rule applies not only to lifting, but also pushing or pulling things, like opening heavy doors. It's tough! I imagine not being able to lift your little ones will be hardest (my "baby" is 23).