I had my yearly follow up with the surgeon today (almost actually 2 years since July 2016) He said everything looks incredible like it should. And he brought up the fact that when this valve needs replacing they will 100% do it via catheter. So I am feeling so much relief even though that is 10 years down the road. But he did say the replacement of the replacement (so the 3rd heart surgery) would go back to open heart and if I needed a 4th it would go back to catheter. But in 8-10 years when I need a replacement for my first valve medical stuff should be pretty advanced from today! Updates from my website are coming. I travel back to my friends cabin in the rocky mountains next month and then in June down to San Antonio again for a week with some of my favorite people. I am also working on a trip to San Francisco and maybe even sneak in a trip to portland or seattle too this year. The site is Trimbergertravels.com and you can find it on facebook to under the same name. I post new updates to that page and distribute it out to FB world that way as well.
In honor of the 2nd national valve disease day I thought I'd give an update. My year follow up ended up being my 1.7 year follow up but the good news was my echo was flawless still. It was so good that my cardiologist said I can stop taking the BP meds over the next two months. We think that was causing exercise issues as the first 20-30 mins I would get my heart rate high I would feel awful. No oxygen to my legs, exhaustion, no stamina, or power. What they think was happening is the BP med is designed to artificially keep my heart rate down so it was working to suppress it when I was trying to raise it which caused unpleasantness. I have played 2 hockey games on the lower dosage as I work my way off of it and I feel so much better exercising! As I mentioned before I started a travel story website Trimbergertravels.com where I have started documenting my travels. I just got back from Los Angeles, San Diego, and Tijuana. Next week I head to Atlanta and Alabama. I am also working on planning trips back out to Colorado and a new destination in San Francisco! So if you are looking for something to do give my site a read as they go into great detail of the things I did on each trip!
Its been a while since I posted here, but I am 1.5 years post aortic valve replacement. I think I am doing well. I had a 3 month MRSA infection that we don't think was heart related but other then that I have been great! After a rough year of recovering in 2016, I set out to make 2017 a travel year taking 9 trips out of the DFW area. After a year of people asking me to share stories, I finally made a blog! For anyone having a rough time, curious about my story, or anyone needing to distract from their recovery time by living vicariously through me, check out my posts. This is the heart surgery post, but I have a lot of post surgery travel posts as well. https://trimbergertravels.squarespace.com/home/2018/1/4/open-heart-surgery-12-july-2016
Today is my one year anniversary since AVR surgery. I got back on the ice in mid november 4 months after surgery. I didn't start feeling normal until December/January. I made it my goal this year to travel more for pleasure as opposed to work. In the year since my surgery I have traveled 14,487 miles on trips to Atlanta, Birmingham, Baton Rouge, New Orleans, Far west Arizona, Houston, Las Vegas, Grand Canyon, Hoover Dam, Birmingham, Denver, Colorado Springs, Rocky Mountains, San Antonio, Nashville, Birmingham, and the Smoky Mountains. Im still working on getting back into great shape and I still have days where I don't feel great, but overall I think I'm doing well!
Yesterday was 8 months since surgery. It doesn't feel like that long but also feels like yesterday. People have generally stopped asking what happened so i think that is a good step in moving on. Im back to playing hockey in the top two rec leagues I use for training. Not sure I want to play professionally again. Its a lot of work to get back in that shape and I haven't been playing that great since i came back....im not ruling anything out but not really sure what to do either. either way i need to get off my butt and make a decision. In my 8 months since surgery I have been hiking in georgia, alabama, and just got back from a hiking trip out in western arizona. I have a trip planned in april to go to Vegas/hoover dam/ Grand Canyon. I still have days where I'm pretty tired and my chest still gets sore and achy sometimes and my incision is still rudolph's nose red but overall I am well.
I haven't posted in a while, but found out this week that my ejection rate and heart function is almost 100% normal now just shy of 6 months. well...I guess it actually took 4 months because thats when I had my last echo that they are basing that off of.
Its now been 5 months since surgery. I finished my 36 rehab sessions 3ish weeks ago. Back on the ice...slowly. Thats the frustrating part. Im not coming back to anywhere close to the level or ability of where i was in the spring. I must of lost over 50% of the strength in my arms/legs/core. Surprisingly my leg endurance was beyond terrible. I thought rehab would have built that up since they were pushing me hard during it. I guess I never really thought that I would lose all that muscle and strength. I figured i'd do rehab and be back to somewhat normal but now I understand why the surgeon and cardiologist said I won't feel good on the ice until at least january. I almost signed up for phase 3 rehab since it was $20 for a whole year but I think I will skip that since as of this week I have started back very slowly with my personal trainer 2x's a week and have been on the ice coaching and getting in net more and more during the week. My goal is to get back in shape and playing at high level again in time for pro camps in the fall. That was also the recommendation of my cardiologist and he has been right about everything so far. So I think this year will just be written off as a "lost year".
Got my letter from the hospital today that the afflicted heart-lung machines that are currently under investigation for bacterial contamination are in use at Medical City Dallas. They say that they have been no illness at MCD reported from it yet but to be on the look out for the symptoms. They listed a patient help line number to call for questions so I will call tomorrow and see if there is some sort of blood test I can take to see If that bacteria made its way in. I think that would be better then just waiting and see if symptoms come up. http://www.cdc.gov/media/releases/2016/p1013-contaminated-devices-.html
12 week update: 99% of the pain is gone. My incision is still not healed up yet...almost though. I have good energy levels and haven't needed a nap in a few weeks. I have finished 22 rehab sessions and they are beyond easy. My heart rate gets up and they are "pushing" me but it doesn't phase me at all. Which is good! I meet with the surgeon on thursday and I'm hopping he will give me a final time line on when I can get back on the ice and back to training as I finish my blood thinners in like 15 days. Pro training camps have started now so I'm hoping I can get back to 100% by january and maybe catch on a team in AA or A again for 2017
8 week post check up went well. My wound is still healing and the pain in my ribs is gone. My collarbones were hurting really bad this weekend, but have seemed to clear up with rest. Hopefully this will be the start of being pain free finally. I'm finally starting to gain strength and endurance back too. Its been about 2 weeks since i needed a mid day nap, and am finally heart wise at least feeling better then I was before surgery. So when I can start training again I'm going to be stronger then before. I have also talked it over and decided to give pro hockey another year. I should be 100% by january and will have the spring and summer to train and get back in hockey shape from this "lost season". I know i still have 1-2 AA teams interested but might see if I can drop down to single A in the spring or start there in the fall and play well enough to get a contract back at the AA level.
today is 7 weeks since surgery. Im starting to get my strength back. Im napping a lot less now then I have been. My wound is almost all healed. My only challenge currently is when I get rid of pain in one area it comes back in another area. Right now my left rib(s) hurt when I take a sharp breath in to yawn, burp, hiccup, etc. It feels like I'm being stabbed. Hopefully its just another muscle spasm and clears up soon
6 weeks post surgery. My open wound is healing nicely according to the surgeon and the tests from my ER visit came back normal. He thinks that it was just a really bad muscle cramp in my ribs and back. So he suggested I get a massage and he wants me drink
Update posted on...
August 17, 2016
Just when I'm feeling pretty good. I get a day where I have the most pain since I left icu. It feels like I'm being stabbed in the ribs when I breath in. My upper chest/ shoulder is killing me too. This evening my back also started to kill me. It's like there is a big ring of pain that goes around my ribs and torso tonight. If it gets any worse I'm going to head to the Er.
It's now been 5 weeks since surgery. I still have some pain that comes and goes (last night was bad) Its in the upper chest/shoulder/back areas. My incision/wound is healing well according to the surgeon. I have a little more energy each week. But am having trouble sleeping at night now. The depression and anxiety has also gone away for the most part. Rehab has been easy. They said they will increase it since I'm barely sweating or breathing hard. The surgeon said whatever rehab does to increase the difficulty still won't phase me much because of how athletic i am/was. I'll be happy when I'm well enough to hit the ice and start on ice work outs again in a few months
This is what happens when your stitches dissolve before they should. I think my body hates me.lol
Update posted on...
August 9, 2016
I had my 4 week follow up with my surgeon today. My heart, lungs, bone, and new valve all look and sound good. My incision has separated a bit because my body has dissolved some of the stitches faster then it should have. My working theory is my body hates me. But I'm ok just have to keep it covered and pack it for a few weeks. They also want me walking a mile a day. I also started rehab last week. Its easy so far, but I do sleep for a while afterwards. Still having pain issues in my upper chest/shoulder/back area. But have been assured everything is fine and normal with everything. The surgeon wants to see me back next week to re-re-check the incision. I also drove for the first time yesterday. Which was very uncomfortable but it was nice to know i have that freedom again.
Its my 3 week post surgery update. I woke up this morning with the most pain I have had since I left the hospital. It was like a stabbing shoulder pain. I also started rehab yesterday. It wasnt to bad except the 2.5 hours of meetings which was really not needed. We exercised for 12 mins which wasnt to bad, but my chest and back were fairly sore last night. The 3 week mark is supposed to be the turning point in feeling better....so if that can start soon that would be great.
How long did it take for your ejection fraction rate to recover? I had an echo done before i left the hospital (6 days following surgery) and they said my eject rate was still 40-45% (borderline heart failure) but expected it to get up to 60%. That threw me for a loop. My thinking was once the valve was replaced my eject rate would be instantly better. My nurse friend said the only thing he could think of was my heart was still swollen at the time and as swelling decreases the seal will increase. Is this fairly normal and it will go back to a normal eject rate?
Its was 2 weeks from today that I had AVR surgery. The pain is so so and manageable with the pain pills. The worst is waking up, that's when it hurts the most. I am up to around a half a mile a day in walking but it tires me out. I start cardiac rehab next Tuesday. Right now the worst of it is the random spikes of depression, anxiety, and panic...which I have been assured are very normal after having my heart stopped and being on the heart/lung machine and having such a major surgery and they will abide over time. But am very happy to have access to ativan! It is very much needed. The emotional pain is very real and just comes in waves. So it helps to have the access to the emotional pain pills as well. The other battle is boredom. There is only so much Netflix and Hulu one can watch before it just becomes tedious. The summer Olympics can't get here fast enough.
was moved out of the ICU last night at 11pm after 5 days. got my first sleep of more than an hour since surgery. still in pain off and on. it mostly starts as a headache and moves to body ache. The surgeon said the only concerns now are fluid on my right lung and my heart rate is still going crazy....mostly at night. They have delayed taking the pacing wires out for 3 days but they tell me for sure will come out tomorrow and a discharge of Tuesday.
I don't remember much of surgery of recover but omg one the drugs wore off I was in such much pain nothing would stop it for 2 days. Even morpheme had issues. Ran in an awful night nurse the 2nd night and a quote you just had major sirgery you won't be painless the whole time. "Yeah I get that but he was never on scheduled for pain meds and I'd specially have to beg for them. He said the goal isn't to sleep through the whole reocover the whole situation almost came to blows with my family as he basically dropped me on my bed I'm writing and screaming in pain he wants to give a to give us a about pain pills. I told everyone to stop and gone have me something that's take the pain off one bit. He also almost sent he into aniflectic Shock with a pill that was listed on my meds but I happen to ask about everything. Before taking. We were assured I would never have to deal with him again. Day 3 started off good. I finally ate a few table spoons of oatmeal but quickly turned badly when I was. Was Close throwing it up turns out the narcotics they gave me to take the pain away had backed me up so much nothing was getting through. So they ended up shoving a tube down my nose and through to auction things out. I was awak the whole time not to metion throwing up everything and they ended up suction out 500ml of backed up stuff. The feeling gave me several panic attacks and my really good nurse didn't like there plans and drugged me out with iv drugs till morning. But it still didn't stop me in my unconciousness from ripping the tubing out and going back to sleep. But it all worked out. Day for I have feel relatively great. Got to eat lunch and dinner liquids and had moved my bowels several times since was the issue. They also had me walk some more and took out my chest drainage tube with was hurting a ton. They said they might transfer me to a regular room tomorrow and also take out the pacing wires. A lot of people have said a 27 year old recovers quicker but your nervous are a ton more sensitive. Sorry for any grammar or spelling issues writing from my phone which doesn't like the site a ton
Just got the call from my surgeon that I might have to have my aorta fixed in addition to my BAV. The cath they did yesterday didn't give them a good enough determination so they want to go ahead with the CTA monday. They said having the aorta worked on doesn't change anything but a bigger incision and longer surgery. So I hope thats the case if it is needed.
I went in this afternoon for the heart cath so they can make sure everything was where they thought it would be. They were going to try and do all but one of the pre op testing today, but decided to hold off on those since they wanted me to come in on monday for a CTA test. so now they will be doing all of those pre op tests monday. I was hoping they could get all of that done today preferably at the same time so I would only have to get stuck once as opposed to a bunch of times...but I guess I can't be that lucky. The cath went well. I remembered 75% of the last cath but this one, they gave me a relaxer through the iv when i got on the table and then 5 mins later they "knocked me out" or at least my brain stopped recording. I ended up waking up 3 hours after the procedure when it was time to go home. Did well the rest of the evening except when I bent down in the car to pick something i dropped and felt like i got shot. OMG! I was in serious pain for about 30 mins. Lesson learned!
Just got the call officially today that I will have the heart cath done tomorrow to make sure all my heart anatomy is where he thinks it should be before he cuts into me. They are also going to try and do the pre-op testing while I'm there. Then I went ahead and scheduled the aortic valve replacement for tuesday july 12th in the morning!
Met with another surgeon today and he was amazing! It was a much much much better experience then the meeting with the first surgeon! He listened to me and answered every single question I had and more where the first surgeon did neither of those things! The textbooks say that for my age I should go with mechanical but he agreed that me being so young and active and wanting to play hockey for a bit longer that he had absolutely no objection to doing a biological valve instead of a mechanical so I can get back to a nonrestrictive lifestyle for at least another 8-10 years. His goal is to get me back on the ice playing professionally and stronger then ever! He said that my heart currently is like a babbling brook and 50% of my blood is regurgitating back instead of flowing like a jet like it should so he was surprised I was able to be so active and train so hard as I had been. So the plan now is that he wants my cardiologist to do a heart cath so he can get an updated view of my heart before he cuts into me. It has been 4 years since my first and only prior cath. So I know that it is pretty easy but still not the most pleasant thing. He said as soon as I have that done I can schedule the heart surgery and we can get that done as soon as I want. So hoping to get everything taken care of in a week or two. But it will depend on how quickly we can get things scheduled. He also only opens the top portion of the sternum instead of a full open heart surgery. So the recovery shouldn't be as bad as having my whole chest opened.
I am meeting with my potential surgeon on weds to talk about my aortic valve replacement due to BAV. Any questions I should ask him? Right now I have recovery time, and how many of these he does per year but anything else I should be asking besides OHS or TAVR and valve type. He is the #1 cardiothoracic surgeon in Fort Worth and is also the director of cardiothoracic surgery so I would assume he is a good and competent dr and one of the best options but would still like to vet him a bit.