Even With Recovery Challenges, Josh Feels “New Lease On Life” After Heart Valve Surgery

Congratulations on the speedy road to recovery, Josh. Thanks for sharing this inspirational bit of your experience!

Hi Josh,

Great to hear the good news. My husband is facing the exact surgery sometime in the future. Out of curiousity, can you tell me what size your aneurysm was before they decided to do surgery? We are playing the waiting game now

Jane

Hi Josh, I am facing the same thing you went through.My questions are what symptoms did you have and I would also like to know the size of your aneurysm before you had surgery? Thanks and hope you keep doing great! Betty

Hi Jane and Betty-

Thanks for your well wishes. I’ll try to answer your questions to the best of my ability.

As for the exact size of the aneurysm, it was somewhat difficult for me to get a clear answer from my cardiologists. The reason is that I had several echocardiograms in the past year, as well as a CT or “Cat” scan, and the results were never entirely consistent with each other. After the first set of echos and the CT, my doctors thought that the aneurysm was approximately 4.7 cm at it’s widest. But then after the last echo, the cardiologist recorded a measurement of 5.1 cm at a certain area. This was 4 months after the previous echo and CT, so that increase certainly caught my attention. From all the research I’ve done and from speaking to the doctors, I’ve found that there are two important considerations: 1) the size of the aneurysm and 2) any significant increases in size over a relatively short period of time. As far as size, I’ve read that surgery is usually suggested when the aneurysm is somewhere between 5 and 6 cm, with 5.5 cm being a number I’ve seen referenced frequently. Then I’ve read that an increase of 0.5 to 1.0 cm in the span of 6-12 months should be considered significant. Although I didn’t meet either of those precise calculations, my doctors and I did feel that the time for surgery was warranted. Please realize that I’m not a doctor- this is not in any way a professional medical opinion; it’s simply my experience with my situation. There are many other considerations involved as far as age, health, etc. and only professionals should make these recommendations and decisions. I happened to be very proactive in my research and brought all of these things up with my doctors; but it was they who made the appropriate diagnoses and treatment recommendations. An important additional note- the cardiologists and surgeon all acknowledged that the exact size, location and potentially related issues with the aneurysm could only truly be determined once they were inside the chest cavity during surgery. The echos and CT scan are obviously very helpful diagnostic tools, but the very fact that they are pictures and X-rays, and not the real thing meant that there was somewhat of a “fudge factor” or “guesstimation” involved.

As to the issue of symptoms, this was also a bit of a grey area. I’d known about my bicuspid valve since I was very young, and I recall being told that the symptoms I would eventually feel were dizziness, shortness of breath, difficulty climbing stairs, etc. I’m not sure I ever actually felt those symptoms exactly. Did I ever get short of breath? Yes. Did I ever feel dizzy? Yes. But it seems like everybody has times when they feel those things and it’s most likely not related to a valve issue. I also had funny “pangs” in my chest from time to time- but I was never really sure if it was related to my condition or it was something else (i.e. gas, muscle soreness, etc.). You can drive yourself crazy (or at least into a hypochondriac) trying to figure out what symptoms are real, what are imagined, and what are related to your condition.

In the end, I felt that there were indeed some physical symptoms manifesting themselves that were related to my narrowed aortic valve. That fact, and the results of the diagnostic measurements of my aneurysm on the echos and CT scan, along with some intense conversations with my doctors and family brought me to the conclusion that it was time for my surgery. And I don’t have any regrets whatsoever.

Best of luck to you and your loved ones,

Josh

Josh… Reading your briefing reminds me…. of me. I’m 58 years young, however, and had my aortic valve replaced on 2/25/09 at Massachusetts General. I was discharged 5 days after surgery. And was able to stop all of my pain medication upon discharge. I did not like the side effects of the Percocet.. irritated eyes etc. I chose the Carpenter Edwards Magna pericardial valve primarily because of my outdoor lifestyle and the fact I didn’t want to deal with the issues of Coumidan. My family, friends and, quite frankly, I can’t believe how I’ve bounced back from surgery. I’m respectful of what has been done, and am “listening” to my body, not pushing it quite yet… but I plan on it soon.

hi josh, my name is jeff and i had the same surgery(including the anuerysm)in september. i too recovered quickly with the exception of a brain bleed(stroke). and i also had those shakes by 9 or 10pm every nite. but after i came off the pain killers, the shakes stopped suddenly.by the way i’m 46 and also consider myself having a new lease on life as you put it.if you care to ask any questions or just talk to someone with a very similar experience, email me at jeffstoveken@yahoo.com. best of luck on your continued recovery, jeff

Joshie,
Not surprised at all that it took 4 days. Pansy.
Will come out to Portland and we’ll eat some crabs and you can show me what they did to you.

xo
Davey

Anybody have an answer to the “chills”? I still occasionally get them after 5 months post Open Heart Mitral Valve replacment. They seem to just go thru the whole body. Have any other people had them? I have not been on pain medication since 1 month after surgery, but still on Coumadin.

i can say that i had the chills very badly after my surgery. im not quite sure what they were from, but when i was in the hospital for my brain bleed, they disappeared after just 2 days. i was on mega-antibiotics because they thought that i might have sepsis.i seem to have had an infection in my lung from the surgery.when i went into the hospital 3 weeks after my surgery i needed blankets wherever i went and i shook almost uncontrollably. soon afterwards my wife noticed that my hands were warm again and i could actually be in bed without blankets up around my neck! i am on coumadin also but i dont think thats the cause of chills. i would persue that because of how long(5 months)they are lasting. jeff

Hey Josh:

Glad to know you’re doing so well..I know your recovery will be inspirational to all who read this….

Fred

Thanks everybody!!!

These are all great comments – both inspirational and educational!

Keep on tickin!

Adam

Congratulations on getting this life-saving experience behind you, Josh!
My own experience was also at St V’s in Portland! Like you, I was out of there as soon as possible to being the healing process at home, in my case the surgery was Monday and I was home Saturday.

Being older, at 65, I was advised to take it a little easier and not push it too hard. I slowly worked up to 30 minute walks and at 8-1/2 weeks since surgery am in the 3rd week of Cardio-rehab at Good Sam hospital here in Portland (I highly recommend it) doing the full 1 hour workout under supervision of a nursing/pt staff.

I am still on a 5 lb restriction for the workouts for the next two weeks (again caution by the cardiologist due to my age-bracket) so the sternum will be firmly fused.

My asending aortia had a 5.4cm anuerysm and was replaced with a Dacron tube with a 300 year warranty 🙂 I too went with a bio-valve to replace the bi-leaflet valve fused by stenosis.

I had some strange cramping aches in my lower left side which went away when I dropped the pain medications a week after getting home. Decided the moderate discomfort was better than being on oxycodinone.
It gets better by the day, as I’m sure you will.

Monday will be 9 weeks since surgery and most of the numbness from having nerves and muscle cut has reduced to what I’d expect. Full recovery of the nerves, from what I’m told, could take up to one year.

I believe the key to recovery for all us valve patients is what Adam highlights in his book; diet, exercise, diligence, positive attitude, support, and faith in our ability to put adversity behind us.

Best of luck; you sound like you are doing great!

josh,

thank you so much for your insight, i feel much better about what i’m going through. i had the same surgery as you, only mine was done on an emergency basis. i had no time to plan or really prepare for all this. i was operated on in early february. since then i’ve dealt with the wide ranging emotions and mind-crunching pain. also the basic need to sleep has been thrown for a loop. i just can’t get comfortable. granted, it’s gotten so much better, but i find i have good and bad days. the bad days really stink. we are part of a very exclusive club, i have discovered. glad to hear you’re doing well!!!

best wishes,
catherine rodriguez, modesto, california

Hey Josh –

You are doing great! I had the exact surgery January 7, 2008 at Abbott Northwestern Hospital in Minneapolis, MN. I too recovered quickly. You are doing the right thing as far as the exercising goes. I had surgery on Monday and was released Friday. Saturday, the first full day at home, I was on the tread mill! I missed only one day in 8 weeks and steadily increased the amount of time. I am now 14 months post op and the only way I know I had surgery is the scar. I feel great and so will you. If you want/need to talk further feel free to contact me at: oneshot@comcast.net

Good Luck,

Erik Wangstad

i actually wish that mine was an emergency operation like catherine’s ! i was scared when they found my anuerysm in the E.R.that night and i had a month of waiting time, between deciding on a surgeon,valve,etc. the wait was torture. fortunately i am capable of not over thinking bad situations. my only saving grace was being able to think about when its all done with, having my deadly anuerysm repaired and being done with that valve replacement that ive known about for 5 years. it can be a double edge sword having time to plan it but also having too much time to think about it! its all how you look at it.i do wish i read this blog first though. i never realised that this was such a common illness. i hope everyone awaiting this surgery gets the information and positive opinions they need by reading these experiences ! jeffstoveken@yahoo.com for any questions or comments . sincerely jeff