Ericka's Guestbook

Bob M  From a Chicagoland heart brother: I pray that your surgery will be textbook and your recovery will be uneventful. Tomorrow will be a new day for you with a fixed heart. God bless and rise up!

Ericka Carlson  Thank you all SO much, It feels so good to have you in my court. I will be posting about what a breeze this was in a few days, so be ready. :)

Ericka Carlson  Dan, my heart brother, we are going to be rock stars. We have one of the BEST teams in the nation behind us, success is not an option!

I can feel a crying jag coming on, they seem to be happening more often, but I always feel better after. I think it's just the steam valve letting off pressure.

Love and healing thoughts to you and your family, I can't wait to read about how amazing you are in a couple of days!

Dan D.  Thanks, Ericka, my heart sister. Sometimes I'm really anxious and sometimes I feel almost numb, like my mind is just shutting down in the face of all this, if that makes any sense. Anyway, I'm sending positive vibes to you for a quick recovery.

Ericka Carlson  Yup, I'm having the same thing with my mind, everything feels so surreal.

I did take a nice long walk with my dogs in the forest preserve today and took time to look, smell, and feel everything, it was very calming.

Today I am going to make lists of things to do and what to pack, lists are good for me. :)

Dan D.  Yeah, I've made a bunch of lists as well. I'm all packed and ready to go. Spending the evening with my wife and son (who is here from NYC). Have to be at Hospital tomorrow @ 5:30 AM for a 7 AM surgery. I'm Dr. McCarthy's first of the day. Hope he's well-rested. Good luck on Tuesday. Maybe we will run into each other in the hallway.

Ericka Carlson  Hi Dan,

Thanks for the response, I think that I did manage to cover most of your excellent questions that you listed here.

I didn't ask about who would be in the operating room, did you get a response to that question?

I also asked if we'd be shaved before, the nurse said that they did not do that at Northwestern, I am pretty happy about that. :)

Hope you are well!

-E

Dan D.  I'm doing mostly OK. I didn't get to that question about people in surgery room either.
Were you reassured that there would be updates on how your surgery was proceeding?
Did she tell you that McCarthy calls from OR, but will see you (and family) in ICU?
I hope your tests went well and that you're doing fine. Dan

Ericka Carlson  They called, my tests all look great and I am ready to go for next week. :)

She didn't specifically say how the doc would communicate with my fiance after the surgery, just that she would talk to him sometime after while I was sent to ICU. I guess after all of the recent family member health issues I've learned that at hospitals things will happen as they come, generally at the time that is best for both patient and doctor. There really aren't hard and fast rules, usually the situation dictates the response. The best route is to go with the flow and worry about the things you can control, leave the rest to the professionals.

Unfortunately my aunt is back in the hospital, septic and under sedation with multiple organ dysfunction, my dad is still recovering from his abdominal aortic aneurysm surgery and likely won't have the stamina to make it downtown to visit, and my mom will be a wait and see now that she's standing vigil with my aunt, on oxygen full time, and still has slow days from her cancer treatment. My fiance and I pretty much have to tackle this alone so there aren't a lot of family members I have to worry about making happy throughout surgery day. I'd say that if you have family able to be there to cheer you on you're a step up, be grateful, focus on those positive things. :)

I myself am just concentrating on keeping my stress levels down, eating well, moving a lot, and enjoying my fiance and pups. It felt good to hear the nurse say to me today that I was "A breath of fresh air", and she had no concerns that I wouldn't come out of this a superstar. I loved her confidence, it helped mine. I keep replaying her words in my head and they make me smile.

And among all the other things Dan, I will be there, right behind you, in the same hospital feeding you all of the positive energy I can. You should be leaving ICU just as I am starting my journey, you aren't in this alone my friend.

Dan D.  Hi Ericka, I trust things will go fine. My wife, son and daughter will be there. I just read Dirk's post below and hope our surgical adventure goes as well. All the best.

Ericka Carlson  Hi Dirk, I am heartened to hear about your positive experience, each story I hear like yours makes me feel so much better. How did you find the food? Thanks for the advice on the phone cord and mug, I will add those to my list!

Dan D.  I'm also having my aortic valve replaced by Dr. McCarthy. I'm glad to hear your positive remarks, though I'm not sure what you mean by "conservative." I'm glad that this operation as become routine to the people who do this operation. To me, it's not routine. I've never had surgery. Still, your remarks help bolster my positive feelings.

Nancy D  Dan-although surgery is routine to the people in the room with you, it is their sole purpose to do an excellent job and for you to do well post op! The entire team will do their utmost best so you can do your best in recovery. They understand it is NOT routine for each of the patients they care for. I hope your experience is as positive as mine was and sounds like Greg's and so many others here have had. Stay positive, do your best, and breathe deep!! Take good care!

Greg Johnson  Dan. By conservative I simply meant relying on procedures and methods that have been tried and proven to have good results.

Ericka Carlson  Hi Greg, thank you so much for the note! I keep reading your positive words over and over again, letting them soak in. My head knows I am in some of the best hands in the country, but my heart is not getting the message all the time, I am sure you know what I mean. lol

Ericka Carlson  Hi Dan! I don't mind you asking at all, I wish I could remember what Dr. McCarthy said verbatim, but I remember him talking about having to cut through a lot of muscle and likely nerve damage. I do plan to have the mini-sternotomy, though you never know what happens once they get you in there. As of right now just my valve needs replacing, no root, no aneurysm.

Do a web search on "Post-thoracotomy Pain Problems" and you'll find a plethora of stuff to read.

I hope this is helpful, I think it's good your asking questions and if you want more info from your doctor I would contact NW directly and ask them, they really want their patients informed and comfortable. :) Don't be afraid to ask!

Ericka Carlson  Here's some reading to start you off Dan.

http://ejcts.oxfordjournals.org/content/36/1/170.short

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2453516/

http://yorkspace.library.yorku.ca/xmlui/bitstream/handle/10315/14333/KAT136.pdf?sequence=3&origin=publication_detail

http://cdn.intechopen.com/pdfs-wm/28635.pdf

Ericka Carlson  Oh, I love Janice, I am sure she will be super helpful! You just reminded me that I need to contact them with my new primary care's contact info, thanks! :)

Dan D.  Janice has been very responsive & patient with my various questions though I only met her in person very briefly. The chronic pain issue seems to be a significant problem with thoracic surgery.

Ben Hyman  I'm looking into this myself.

I Googled this and found a an article of this procedure performed on a male patient in his early 40's at University of IA Hospitals. His name was Damian Wilcox and the Surgeon's name was Dr Robert Farivar. It said that he was out of the hospital in 3 days and back to work in less than 3 weeks.

Dr Farivar is now head of Cardio Thoracic surgery at Abbott Nortwestern in Minneapolis and I have a consult with him in early May.

If you Google his name and include minimally invasive heart valve surgery, you should find the article yourself.

Ben from Minneapolis

Duane Beeman  Ericka: the article you posted here is related to lung surgery. It entails a totally different incision than the right anterior thoracotomy on male patients for aortic heart valve replacments.

Ericka Carlson  Hi Dan! My weekend was nice, fairly productive, lots of housework and some progress on the bathroom remodel. I wish the weather had been nicer yesterday, but I think that helped us to just get to work instead of play. :)

I think my symptoms too are very subtle, but looking back i think that they have been creeping up on me for the last year. Things like tightening in the jaw or slight dizziness during heavy exertion. I am still active though, I take my dogs hiking in the forest preserve several times a week and am always busy with working on the house. It will be interesting to see how I react mentally to being forced to slow down so dramatically for at least 2 months.

I love the playlist idea, though I am a huge heavy metal fan so I am not sure "soothing" would be the appropriate adjective... lol

How are you doing mentally, any better? I feel differently about the whole thing I swear every day, what a roller coaster!

Dan D.  I'm doing OK mentally and, like you, it's up and down, but my downs aren't so low as before. I've had some deadlines to meet that distracted me. But there's always that shadow following me. Socializing on this Website has helped a lot, particularly knowing that so many people have gone through this and come out fine (after a while) on the other side.

My taste in music is wide-ranging (pop, hip hop, rock, Motown, r n b) but, when younger, took my son to see lots of classic heavy metal from Metallica to Anthrax and from Slayer to Megadeth and all points in between. But, that's not my vision of hospital music - I'm going for ambient stuff, like Eno, and pop stuff from my youth (60s) - nostalgic comfort music.

Wiliam Height  Stay in the moment, working is a great distraction in recovery too. Being 100% focused allows for nothing, regardless of how upsetting it is, to enter.

Ericka Carlson  Hi Janet, thank you so much for the comforting words! I know Dr. McCarthy is one of the best, aren't we lucky to have such talent at our disposal??
How were the accommodations at Northwestern? Is there anything that you suggest I belting with me?
I love the theme song idea, I'm going to try that. :)

Janet R  Hi Ericka, The ICU and your Step Down rooms are both private and everyone was very sweet. Upon arriving for your surgery appt time, please note, they are very prompt. They will not keep you waiting long. The checkin and the pre-op goes very quickly, lots of people coming in to see you before they wheel you out of pre-op. I do not even remember leaving pre-op which is a good thing. I held my Heart Pillow very close to my chest while in the hospital and for weeks afterwards. I also had everyone at NM sign it. NM will provide the Pillow to you if they have any. I purchased my own just to be sure that I had one. I also purchased a couple of surgical bras which were very good to have in the first 4 weeks. Bring your pajamas and your toiletries and your own shampoo and conditioner unless you want to use the hospital shampoo. Bring a few extra blankets in the car that you go home in and your sunglasses. It was nice to have the blankets and pillows around you in the car for the ride home in the back seat. We filled all of my prescriptions at the Walgreens in the Galter Pavillion before leaving and plan your pain pill timings so that you can take one before you leave. I also found the electronic lift recliner at home to be most beneficial and I slept in it for about 3-4 weeks. My husband was able to sleep in the recliner chair or window bench in the step down room with me for 5 days, even though he had a room across the street at the Hyatt. We checked into the Hyatt the day before surgery so that we could be there and relax for the evening and that morning at 5am we just simply walked across the street while playing Geronimo :o). All the best to you and prayers to you for all the preparations leading up to the big day.

Ronald Gatan  Hi Ericka,

I've heard great things about Dr McCarthy. You're in great hands.

It will vary for each person, but here's how I feel:

1) Overall, very well considering The circumstance. My back muscles throughout are sore and achy because my ribs were opened for surgery. Get a heating pad or electrical blanket to keep your back muscles loose when either sitting or lying.

2) it has been 10 days and sometimes the sleep has been inconsistent because of the pain. Using an IPad and listening to positive or sleep affirmations have helped get into deep sleeps. You can get the affirmations on YouTube.



3) Be patient if you are out of breath. Follow their instructions for sitting and walking frequently but don't get frustrated if getting your lungs back takes a
while. I saw a great improvement at Day 9 post surgery.

Let me know if you've more questions.

Ron

Ericka Carlson  Hi Bill, thank you so much for your response! Your positive experience is an inspiration to me, I will definitely go read your story.

Ericka Carlson  Hi Dan, I went with Dr. McCarthy's recommendation on the bovine valve, which is risky considering I am only 41. I'm counting on the TAVR being perfected for my next replacement. I asked him "Well what about the third I will need??" He chuckled and said "Who knows what we will be able to do by then!" I thought that was an excellent point.

I chose bovine primarily because I am very independent and did not want to live with the risks associated with anti-coagulant meds. I also know that the noise of the mechanical valve would most likely be a source of anxiety for me. It was really a decision to either be nervous every day about my health with the coumadin and valve noise, or go through this anxiety every 10-15 years (I'm younger, it won't last as long for me). I chose the latter.

The angiogram was not a big deal, my advice is have them go through the groin. They tried to do it through my arm and were unsuccessful, so I was left with a useless painful right arm for a while, annoying when you spend all day on a computer. You also can't lift over 5 lbs for a week, that's like a slice of bread!

Pat Bluemel  I'm 42 and chose bovine for all the reasons Ericka stated. There are risks associated with both types of valve. It's a personal choice for sure. There will probably be a time when I have a mechanical valve and I have to take meds, that time isn't right now for me and hopefully won't be for 10+ years.

Ole Bore  I'm 35 and chose mechanical as I wanted to be done with surgeries and have no issues with the coumadin or the ticking. I'm incredibly active and have been able to resume my activity level

LaDonna Mangile  I'm 60 and chose a mechanical valve. I don't want to repeat in 7 to 10 years and know many people who have been on Coumadin successfully. They have a new home monitor also, its a personal choice.