Trent's Heart Valve Journal

Everything is going well, and I have a graduation date of the 22nd from Cardiac rehab (I think they are ready to get rid of me). I honestly don't feel like I just went through what I went through, and it is a weird sensation to read the surgical reports and think about YOU being the guy on the table.

One problem that I am having is the numbness on my right shoulder and right side of my head. Spoke with surgeon's PA and they assured me that was very normal (as I am still "newly" out of surgery) and that it can sometimes take 8+ months to go away. Not bothering me, so not worried about it at this point.

I am ready to go to the lake and am almost water proof at this point, so will see where that stands next week.

Hope everyone is doing well,

Trent V

Sprung (man it was hot outside)

Almost free of wires and tubes

The cool towel and neck pillow help

Gorey Details (Right Thorocatomy)

After (realy wasn't as bad as I look)

Morning Of (6-18-12)

Nice socks

Trent and Thomas H @ Baylor Heart

Feel great, but can't figure out why I am still finding tape residue...I have scrubbed and scrubbed, but still find some tape leftovers every once in a while.

One other thing is my head is still "dull" (versus numb) on the right hand side where I had the jugular port, but they say that is normal and getting better as time passes.

I am returning to work on Monday, and will be glad getting back into it. The life of leisure would be fine with unlimited funds to travel, buy planes and stuff (or an echo machine).

Hope everyone is doing well,
Trent V

I would like to put together a dinner or lunch for the local DFW valvers. No idea on time, location, or schedule for this, I simply want to put that bug in everyone's ear.

I live in Plano, but can find more than enough places more centrally located when we get a list of attendees (I find "Babes chicken dinner house" is always a good choice, but there are so many others.

Email me at trentv@gmail.com for anyone that is interested.

Would help if we had our calendar up and running on the site (wink wink to Adam) ;-)

Trent V

Here are some items that I had intended to include in othe posts (and very well might have), but figured I would add them for posterity anyways.

- I never had to take Coumadin, just 2 x 81mg Aspirin once daily
- I had a bought with A-fib (fluttering in the chest is how I perceived it), and they put me on Amiodarone 2 pills twice daily for 10 days, and scaling it down from there. They sa I have another 3-4 weeks on that. No further episodes of A-fib, even during cardiac rehab...so fingers crossed on that one.
- I was able to drive short distances after about 2 weeks, mainly because of the pain meds and not the surgery itself.
- I am still not ale to get in the pool (or lakes/rivers) as I am still not water tight. Dr. Ryan said once the incisions turn white and all the holes aree closed in a few weeks It will be fine.
- I should be able to re-apply for my pilot medical after 90 days, since I had a repair. (my flying is only recreational, but will good to be cleared on that).
- I will post some picture of my incisions shortly. Everything is looking good now, and I haven't posted them as the iPad won't let me.
- I am still on weight restrictions for a few more weeks (no more tha 20-30 lbs).
- So far I have zero out of pocket for the surgery, as I had already met all max out-of-pocket and deductibles. I think we're at about $150k so far. I hope I don't jinx myself by writing that.
- I did have some charges that insurance denied from the lab, as the hospital contracts out the lab work and insurance said they already paid that as part of the main hospital bill. I called and explained to insurance and everything should be good now.

I have no idea if any of that will help anyone, but it always helped me reading everyone else's posts on the "logistics" before and after the surgery.

Trent V

Roughly 4 weeks ago today I was just getting out of surgery. I am back in the hospital today (for cardiac rehab and some simple bloodwork). Feels weird as it is really the first time that I have had a chance to look around the place (very nice as everyone had said). I stopped by to say thank you and hello to a few of my nurses and PA's. Somehow "thank you" just doesn't seem like enough, but that is really all that you can say.

I hope everyone on either side of this is doing well. I keep checking the site and try to keep up with everyone. If anyone has MVP repair via port-acces, more than happy to help however I can....the worst part was definitely the waiting (and the tape).

Thanks,
Trent V

Met with Dr. Ryan and eveything looks great and healing up well. No sign of a murmur, and no fluid in lungs. Reducing the amiodarone in 2 weeks and metoprolol in a few months.

I also put in a plug for HVJ and what a valuable asset it was for before, during, and continues to be after surgery.

I also confirmed with cardiologist that we ARE doing an echo at my 8-3 checkup (don't know if they changed their minds to do one or misunderstood them at the last appt....probably the later).

Started cardiac rehab today and felt very good to get moving again, and it kicked my rear.

Hope everyone in all stages is doing well.

Trent V

Had checkup with cardiologist on Friday, and everything looks good. Regular sinus rhythm and everything.

Only disappointment was that they didn't do an ECHO. I had really wanted to "see" how things were working on the inside. They said they would do one at 6 months, but I "suggested" that I wasn't willing to wait that long. So we will see.

Checkup with the surgeon is on Thurs, and will see if they do an ECHO there.

The first sneeze caught me off guard and I couldn't get to my heart pillow fast enough. My mind raced with "oh sh$t this going to hurt". In the end it really wasn't that bad, one of the benefits of the thoracotomy I guess (and being a few weeks post-op).

I honestly don't feel like I had open heart surgery two weeks ago today, but then I do something and get reminded. My wife and I still argue about when they removed what tube, I think I am right (but I was still under the fog of surgery so she is probably right).

Had checkup with my primary care doc today and said everything looks good and couldn't hear any murmur. few skipped beats, but said that was to be expected. So that is pretty awesome.

Incisions are healing well and no pain, except for a stiff shoulder occasionally. A heating pad and a few Advil and it is all good. I have been off the pain killers for over a week now, didn't really need them and they were causing "other" issues that were worse than the benefits.

To all those in recovery I wish you all the best, and to those in waiting mine wasn't nearly as bad as I imagined it (though I would prefer not to do it again). If anyone has any questions about right thoracotomy mitral valve repair, send them my way.

Trent V

I have not been as diligent at my updates as others, and for that I apologize.

First let me say that Dr. Ryan and his staff could not have provided me with a better surgery in my opinion (but have only had the one). I will also say many times Baylor Heart in Plano is awesome, and I would recommend it to anyone requiring heart work. My procedure was a "Port Access" procedure via a right thoracotomy and the bypass was via s groin incision in the left side.


The basics of the event are follows:
Surgery day -
- 5:30 AM - went straight upstairs into a room, showered, shaved, and placed IV. Went to surgery prep area and was there about 20 mins before anesthesiologist came in and went over finals about procedure.

- 7:30 - Was rolled into OR, anesthesiologist was making small talk, I noted the OR looked nice, they moved me onto table, and he said "good night and see you in a little while".

~ 1:00 PM -'Then I woke up in recovery, confused, no vent tube, and in no pain. I was told the nurses called several times to update my wife at different points during the process, and various volunteers (whom have actually had similar surgical procedures kept stopping by the waiting room to answer questions and/or get things for the family).
Recovery was in the same room as my perm hospital room (as with all rooms at Baylor Heart Hospital) and I had a dedicated nurse for the first 24 hours. I remember not liking the removal of the central line from my neck or getting up for the first time out of bed.

5:00 or 6:00 PM - I had about 12 drips going at one point in time, and it was determined that it was time for me to get out of bed. Several practice runs, and a big heave-ho and I was up on my feet. The morphine and other mix of cocktails made things a little dizzy. Shuffling one foot in front of the other, we made it over to the chair...all while clutching my heart pillow. Then we we seated and I remained in the chair reclining for several hours.

Day 2 - Day 2 was pretty uneventful and consisted mostly of glucose checks and other vitals on an hourly basis. I sat in the chair most of the day, and went for my first walk around the unit with the physical therapist. Did pretty well, and like Selma said "I walked like a new baby duck". My left legs was (and still is) a little numb from the femoral incision and anesthesia. Getting better day by day. The food at the hospital was actually excellent, and everything I had was better than what I have had in some restaurants.

Day 3 - Finally was able to get a few solid hours of sleep, had a few conversations with the night nurses regarding pain med distribution, and had foley removed (probably should have had frank discussions about performance of duties prior to having that removed....lesson learned). More walking and breathing exercises and lines started to be removed (atrial line in arm). Had my pacer wires removed.

Day 4 - more walking, eating, and lines out. Walked a lot by ourselves and was nice to avoid the continued glucose checks. Vitals all looked good. Had chest tube removed late in the day, and that felt awesome to have that out. Didn't hurt at all, and the improvement was immediate. I had a stabbing pain inside previously, and that was 100% the tube. Felt very little pain at all after that, and could go several hours past the pain dosage time without being in much discomfort. I had the option of rushing things along and being discharged on thurs night. However, I felt it would be better to stay another night. Had to drink some wonderful cherry soda to get things "moving along" and spent most of the early evening dealing with that and other diuretics.

Day 5 - Got some great sleep (4 whole hours at a time), and was able to get up and down as I needed without any problems. The day was mostly spent waiting for discharge and to PA's to make their rounds and check on tenderness in my groin incision. I figured that was important to get looked at before leaving the hospital.
I was discharged and rolled out the door about 5 PM. It as slightly disorientating to be out in the heat, big open space, and with fast moving cars whizzing by (or maybe just my wife's driving....haha).

At home - still taking the pain mess, but could probably do without them...but not ready to chance messing with the pain just yet. Had first shower at home, made me tired, and took the best nap of my life today...can stress that enough, best nap of my life. I am getting in the pattern of taking my meds (just reminded my self that I forgot one), and trying not to annoy my wife too much.

Still dealing with some gastro issues like Adam mentions in the book, and got some supplies to deal with that.

We are having some friends over tonight, and will be nice to see some faces (that will not be stabbing me with needles).

All in all, I have to say that WAITING truly was the worst part, and the surgery was not near as bad as I had imagined it. I wouldn't say that I look forward to doing it again, and I definitely do not want jinx myself by saying that.

Thank you to all my friends, HVJ and others, for the continued support and thoughts through this ordeal. I know that it isn't over, but I feel that things are looking up and with God's help I will be able to make it through this.

Trent V

Not much to say other than that...man that feels good.

1. One thing that I have figured out in the hospital is that each shift change has their own idea about "dosage timing" with pain management. I have had a clear and frank discussion with my surgeon about "staying ahead of the pain". Most of the shifts seems to get this, and have the relief ready BEFORE the drugs were off (which is my and my surgeon's unedstanding of staying ahead of it). However the. Ight shift is something that I am struggling to bring onto this same schedule. Their interpretation is that the pain meds can't be pulled out of the machine until AFTER the allotted dosage time has passed.

I am getting this worked out on my end, just a word of advice that there is a difference between have the pain meds ready to impact your pain at 2AM, versus you call nurse at 2:15 AM and it takes her 20 mins to pull it out of machine and you take does at 2:35 AM (with drugs being allied to your pain shortly thereafter).

2. Another thing is temperature regulation, I am hot and cold ALL of the time. Warm blankets and AC cranked up have been the easiest ways to transition between the two states for me.

3. Other than the occasional miscommunication about dosage scheduling I am "enjoying" my stay at Baylor Heart Hospital in Plano. I have informed a lot of the staff about this site, the food is excellent (no possum here). My surgery staff was excellent, as well as the majority of the nursing staff. I also dont want to jinx my outlook by saying how well I am doing (but I did walk almost 900 ft yesterday combined). More work to be done and get these chest tubes out (among other natural movements that are required for exit from this portion of the ride).

Hope everyone is well,
Trent V

It is me now, and will post more tomorrow. Thanks so much for everyone's thoughts and prayers.

Hi everyone. Trent is doing great. He sat in a chair yesterday evening after only 7 hours out of surgery. He is being smart and trying to stay ahead of the pain. This morning they got him back in the chair and will have him up for a short walk later today. They have taken all fluids and oxygen off. Dr. Ryan came in this morning and said he is doing great!

The tube is already out (a worry fo Trent)! And he is sleeping. Dr. Ryan said it went great with no tears or leaks. Praise God!!

The nurse just called to say Dr. Ryan is closing and it went well! We are just waiting for Dr. Ryan to come and personally tell us how it went. We have his room number and can't wait to see him, but the volunteers said that although the doc will tell us we can see him in 30, that the nurses won't let us back for at least an hour and a half....Just want to see him ASAP : )

Just got our 2 hour update. Everything is going well. Dr. Ryan is putting the ring on the valve. They said he should be done in an hour and a half. God is hearing our prayers and guiding Dr. Ryan. Thanks for all of your prayers and kind words!

Hi everyone, this is Amanda. They just took Trent into surgery. He was in good spirits and is just ready to get it started and over. I will keep you posted with updates as we get them : )

Headed that way and will see everyone on the other side.

My wife, Amanda, will be making updates from here on, and I will be back as soon as posssible.

Thanks and have a good day,

Trent V

I am overwhelmed by the number of updates, and people reaching out to provide me some comfort. I appreciate each and everyone one of you and I will try and respond individually (but I am running out of time before my nice Bactro-Ban) shower and off to bed and then back up at 4AM.

I feel weird that I am not more nervous, but I am really just "in the machine" as another HVJ-er said.

I cannot express how better prepared I feel thanks to all of you, I cannot imagine facing this experience in any other manner.

Thank you all, and I will try and post something short in the am.

Good healing to all, and comfort for those still on the waiting side....I am "almost" excited to get going so I can be on the other side. (I just hope I don't have to eat possum like selma, even if they are low in salt).

See you on the other side,

Trent V

Was able to meet up with Thomas Hunt today, and it is really awesome to talk with someone that knows EXACTLY what you are about to go through in the next few days.

Really appreciate it Tom, and hope I can return the favor down the line.

To all those waiting good luck, and those in recovery I hopes things progress smoothly.

Trent V

Finishing up some last min items on the check list, making sure I have everything packed for the hospital, buying snacks (and new TV) for my recovery at the house, and bugging the nurses at my surgeon's office to make sure all the paperwork is submitted.

Planning to continue much of the same for the weekend, and smoke a beef tenderloin on Sunday for all of the family coming into town.

The day is almost here, and I can't say I am "excited" about it, but getting straight in my head that the time is finally here.

Hope everyone in recovery is doing well, and for those about to take this ride with me....we can (and will) do this.

Trent V

Off to NYC for a few days, and then back to the grind for 3 days, then Pre-Ops, and then showtime on the 18th.

As it gets closer, I keep thinking "maybe I should put this off for a while"....then I kick myself and get back in gear of getting this over with and moving forward. Things are going to get better on their own after all.

Hope everyone is doing well.

Trent V

Things seem to be getting real now!!! I am ready and these next 2 weeks will go by very quickly. My wife and I are going to NYC this coming weekend for our 5 yr anniversary.

Mom and Dad came down this weekend and helped organize on the house, and things are mostly ready to go. I am blessed with more than enough people willing in to help, I just need to make up my mind when and what I need them to do. Most of the help will involve wrangling two little boys (3.5 yr old and 1.5 yr old). I know I will want to see them when I get a few steps down the recovery trail in the hospital, but realistically I don't think it will be a great idea for them to be here when I first come home.

I am ready so let's do this....

On another topic, I wanted to compliment my surgeon, Dr. Ryan at the Baylor Heart Hospital in Plano, TX for putting me in touch with some patients who recently underwent the same procedure I will be having. Combined with HVJ I feel that I am as comfortable as humanly possible with the plan. So to all new HVJ'ers you have reached the right place, and don't hesitate to ask you surgeon for past patients....they can't give you names and addresses but they can reach out and ask who would like to participate. Every "valver" that I have met is very interested in helping you through the process.

I want to say thank you to everyone that I have meet on here, and hope everyone is doing well.

Trent V

I have read several people's shopping lists for post--op, but didn't see anyone mention a blood-pressure monitor or anything of that nature. (I keep telling myself I need to learn how to do that before the day gets here).

Amazon had one for ~$50.

This is the third time I am attempting to write my update about my 2nd opinion today, and somehow I keep hitting the "hide this form" button and everything is lost (twice). What is the definition of insanity again??

So one more time.. I had my 2nd surgical opinion today and mercifully it was the same as the first. I would have been thrown for a loop if the second doc had come up with a different course of action. Dr. Smith was excellent and very thorough in his review of my information. As he put it "the data doesn't lie, and you will have to do this sooner or later". As DVB had said in an earlier response, the longer you wait the worse your chances are of returning to a normal life expectancy.

I did learn that my particular mitral valve issue is a bi-leaflet prolapse (both leaflets will need repair). Which was defined as a more "complex" repair (not really fond of the word complex in relation to what I already deem an extremely complex procedure). That being said, repair is still the plan via a right thoracotomy.

I asked about the length of bypass using the thoracotomy versus the sternotomy, and was told the bypass time should be no more than via sternotomy. However, due to the complexity of my repair it might require a longer bypass. Not great, but still a repair.

I am good to go, just need for 18th to get here. It seems like first week in March was a long time ago and that it would take forever to get here...but it has gone by pretty fast and will be here before I know it.

Also, thinking about Selma, Tom, Paul, and everyone else in various stages of the process.

I have passed the 30 day mark, which means that I had better get busy on my "To-Do" list that hasn't progressed very far.

One of those items is the submission of my Short-Term disability stuff for work. No agent seems to have the same information the previous agent was using, so understanding the difference between vacation/pba time versus when the Short-Term Disability services begin after their mandated 7 day elimination period (I don't like their verbiage on this) is a challenge to say the least. One agent says that all vacation time needs to be used prior to Short-Term kicking in, and the next agent says that is not the case...so weeding through this mess so it is one less thing to worry about when I am actually in the hospital.

My thoughts are with those that are in the middle of the recovery process (and to those figuring out the insurance components of this as well).

Trent

Rainy Day

I am very sad to hear about Cindy, and even though we never met we all knew her. It just sucks all around.

As for me, I have made lists of things to get accomplished pre-op and it doesn't seem like I have checked off that many or a good portion I have downgraded until "after" I get feeling better.

My wife and I are making a trip to NYC 2 weeks before the surgery for our 5 wedding anniversary. Will be nice to get my mind off of all of this. I will try to have all of my primary "to-do" items checked off prior to the trip so that I am not rushed when we get back.

Hope everyone is doing the best that they can....

I was thinking of a suggestion for the site. It sure would be nice to have a calendar for those that "op-in" to display there surgery date, possibly only available to members and only as users choose to post this information. Most members post their dates in each of their individual journals, this would simply be a central place to correlate the data into a single view.

Not sure there would be any HIPPA or privacy regs involved, as it up to the user to post their information.

Just a thought....

I know that is always recommended to seek a second opinion (even reinforced in the books several times), however I am considering NOT following this bit of wisdom, a based on the reasoning below:

1. Surgeon selected for the procedure is widely regarded as one of the best in the ountry (even list here as in the top 20. I am comfortable eith him and although is am stilled on the fence between thorocatomy and mini-sternotomy. This is "THE" guy in DFW, and have other friends in the surgical field ask about him, and the other Cardio Thoracic surgeons (one on same top 20 list) all respnded he would be the one to perforppm their surgery if required.
2. if the above is true, then i am not sure what anyone else will be able to tell me different then what
I hsve been told.
3. My main reason to not get a 2nd is the fear that 2nd opinion providers start puttinng alternative surgical methods in my head (robo-DaVinCi, etc), i will be worse off mentally than i am now, as am great to go with what we have planned. I wouldnt mind someone saying they would domthe same thing, and i dont think given the test results would tell me to not khave the surgery. I just dont want to question what i am aleady comfortable in this process.

***i forgot to mention the plan is for MV repair versus replacement, so good to start out witht that being the plan***

Thoughts from the gallery??

Seems like an eternity from now, and really find myself forgetting about the fact that I have to have this done. Life marches on, and I have to remind myself that this is on the horizon.

We decided on this date based on the wife being out of school for the summer, and the ability of family members to help in watching the kiddos while I am in recovery mode. I would prefer to have had this done yesterday, but realistically need to make sure this works into everyone's schedules (since it is not an emergency).

It is a strange feeling to feel completely normal, and think about having to put yourself through this. I am 100% certain this is the right course of action (and if I didn't do it now, I would have to do it later at a time not of my choosing). Just a strange thought to put yourself at so much risk for something that hasn't directly impacted you (yet).

I find myself wondering if I should wait, and spend more time with the kids and wife "just in case" something does go wrong. I know that you cannot dwell on those thoughts, but I doubt there are many people out there that have been completely absent of those.

Really wasnt bad at all. Dr. Krock is great at what he does, although i am starting to wonder what all i say when coming out of the anesthesia.

I am just getting started at this, and have been trying to read everything that I can on the site. I am very impressed with everyone who contributes and the wealth of information Adam has compiled to help the group through the process.

I am very pleased with my surgeon, Dr. William Ryan in Plano, TX. He was HIGHLY recommended by my cardiologist, and the fact that he is more HIGHLY recommended by every patient that I can find who has been under his care.

Now we are working to determine when we should schedule the surgery, and I am ready to get moving. Seems the actions of planning and the motion of the process help keep the mind from wondering to unpleasant thoughts and concerns....so I would like to keep things moving.