Mollie, Thanks so much for sharing your story. You are in our hearts and prayers and we would count it a privilege to help in any way. You are blessed with a wonderful, supportive family and we know that God is guiding each step of this process. We love you, sweet Mollie.
Carol & Jim Shaw
This morning, I found a scripture I wanted to share with you:
One thing have I asked of the LORD, that will I seek after: that I may dwell in the house of the LORD all the days of my life, to gaze upon the beauty of the LORD and to inquire in his temple. For he will hide me in his shelter in the day of trouble; he will conceal me under the cover of his tent; he will lift me high upon a rock.
Thank Jim for including me in his E-mail to everyone. I know your anxious in so many ways. It will be OK. With all the prayers you are and will be getting, all will be well! Love you. Lori PS...will be checking in often. Hope you "enjolie" my messages. LOL
Being my fc, I know about "our" indecisiveness; however, I feel that you have made a good research based decision. I am praying God's hands on every doctor, nurse, etc. that come in contact with you. Ps. 91:11 His angels will take charge over you....Also "Be still and know that I am God Ps46:10....
I hate that you are having to go through all of this, but you will just have a bigger and stronger heart than ever!
I love you fc....Luanne
You certainly have done your homework regarding this surgery....
When I told a couple of my friends about this wonderful site I stumbled on months ago.....they told me I should "stay away & not know too much".....what????? Knowledge is power! You don't go into a surgery like this blind....I believe it is essential to a good recovery....and thats what we strive for....to be better than we were before we were wheeled into that OR!
Although I will go before you.....I will still "keep an eye on you".....and keep watch on my new heart sister. :)
Congrats on taking charge of your life, finding the best doc for your "broken little heart" and "fighting like a girl"(one tough one that is) in this whole process. You make me proud! :)
Stay strong as you wait..
Hi Mollie, Sounds like you are ready for your big day. Your doctor is right, to have knowledge about this. The more you know the better you are. You will be doing fine going up this mountain and soon you will be going down the other side. Good luck to you, keep busy it will help with anxiety issues.
For the long haul
Glad to see you are finally online here. You will find it so helpful. I know how tough your decision is, not just on type of procedure but what surgeon. Go with the one you feel most comfortable with. I think both these guys are probably equally good and both are known in TX for the Ross. If you like both personalities it is tough. Do you feel a little more confident in one versus the other? Definitely speak to other Ross patients they have done and try to get "older" ones too (meaning not so recent a surgery). On the valve journal here, I only know of me and Chris Dixon (besides Adam Pick), who have had the Ross. Let me know how I can help. (Note: I am on vacation June 10-17 FYI)
We live in Houston and my husband had the Ross procedure done on 2/27. In our research we heard of both Ryan and Oswalt, but we decided if we going to have to leave home our best option was to see the surgeon that had done the most Ross procedures in the US. So we went to NYC and met with Dr. Stelzer. That was the best decision we could have made. Chris was Stelzer's #508. You can read over his journal to see what our experience was like and why we adore Dr. Stelzer. We will be praying for you.
Hi Mollie. Although I chose to go to CCF, I did have a consultation with Dr. Ryan and felt based on my research that he was the best in the state of Texas. I believe Adam's book lists Dr. Ryan as one of the top 20 surgeons in the US known for having an excellent bedside manner.
Trent has done some great research and agree with his advice that it comes down to who you feel most comfortable with.
Along the same lines as Linda's recommendation, you might also consider which of the two surgeons has done more heart valve surgeries and which has done more Ross procedures, overall and on a yearly basis. These statistics should be readily available. As you have probably heard, the most significant predictor of a successful surgery is the surgeons experience.
Mollie, I did not have the Ross procedure, but I do know that it is a complicated procedure, much more so than a "regular" valve replacement. I also know that with any of the valve surgeries, the experience of the surgeon with that particular procedure is key. I went to Cleveland Clinic from South Carolina because I wanted to be where they do these surgeries every day, not just a handful every now and then as it is here in South Carolina. It was inconvenient, but I haven't regretted it one bit! Do you know "how many" Ross procedures both of these surgeons have performed, their "success" rates, etc? The centers of excellence publish these numbers for you to see, therefore no surgeon should have a problem giving you this info. Also, have to talked to Adam Pick directly about the Ross? He is very accessible and will help you if you like. Good luck with your decisions, I know these questions are difficult, but they are so important. God bless!
Linda Dixon, AVR 3/13/12
I never even considered traveling for my procedure. Many persons told me our local hospital, Hartford Hospital, had a great cardiac surgical team. I also have friends of the family who are nurses that I spoke with and they were very reassuring with our choice of hospital, surgeon, procedure(sternotomy) and valve(biological) if a repair was not possible. Initially I had a fleeting thought about contacting Cleveland or elsewhere, but the retired friend that mentioned it has had two surgeries, one if CT and one in FL. I also wanted my family by my side for the entire time and wanted follow up visits to be closer to home. Im sorry I cant speak as to the TX or OH hopsitals or procedures, but just sharing my two cents.
Thank you for your info. I have heard great things about Dr. Ryan and look forward to meeting him Wednesday. I have already met with Dr. Oswalt and liked him very much, but I guess I just feel like I can't have enough opinions. Even though I am heavily leaning toward the Ross, it is so hard to commit to such a life changing decision. I wonder sometimes if I'm taking an unnecessary risk with a double valve replacement, but I have just about convinced myself I do not want to take coumadin for life.
I will be thinking of you and keeping you in my prayers. Are you feeling very anxious and/or nervous, or mainly ready to get this over with?
I am having a different procedure than you, however Dr. Ryan will be my surgeon for my mitral valve repair in ~2 weeks at Baylor Heart Hospital in Plano. I am 110% confident in his abilities and reputation, and cannot say enough good things about him. Dr. Ryan will spend as much time as you need to understand and agree on the planned approach, and has a wonderful personality. His office graciously put me in contact with several of his recent patients with the same procedure that I will have performed. Next to the HVJ that was immensely helpful to understand, discuss, and feel comfortable with what I am about to undergo. I only hope I am able to repay the favor for other patients in the future in person and on HVJ (although I have tough competition to keep up with DVB and Tom's detail or Selma's wit).
I have also heard nothing but positive feedback on Dr. Oswalt. Both Dr. Oswalt and Dr. Ryan are the two names that consistently come up as the top valve specialists in Texas from my discussions with past patients , research online, and asking around the medical community.
It comes down to which surgeon you feel more comfortable with, what the planned approach is with the best long term outcome, and eventually where you want to have the surgery.
I would say you are speaking with the two names that I have heard the most in Texas, and you will be in excellent hands which ever one you end up choosing.
I also have a bi-cuspid aortic valve, but mine hasn't advanced as much yet, so still in the monitoring stage. I can't answer any of the what-to-expect questions, but just wanted to wish you well.
I think you will get a lot of good advice and information here that will really help you. This website has been a big help to me.
Hi Mollie, Welcome to HVJ. Like you I found it hard to get on here as I am rather shy esp on computer, but I did and I am so glad that I found this site. It is wonderful and it helps a lot. Everybody has a lot of different feelings but I have found that we all have the same thing, fear of the unknown. There is a lot of info here and I am always searching it out. You will do just fine. If there is any thing you need to know someone will have an answer for you. Good luck to you.
For the long haul
I had two valves repaired last October, and for me, the "Ahhh Bra" was perfect for about three months after surgery. It is very stretchy and offers just a little support, so it probably wouldn't be good for larger breasted women. It was super comfy for me and didn't touch my incision at all ( I had a mini sternotomy).
As for kids at the hospital, I think if you prepare your kids for what to expect (lots of tubes and a very pale you!) they will probably be okay. If they are worry warts or have high anxiety about all this, then they might not be able to handle it. Most kids are pretty resilient though and will probably just be relieved to see their mom.
I don't think you will need "round the clock" care when you get home, but you should have someone with you for at least the first week home. I think you will be amazed at how quickly your body recovers considering all it goes through.
Good luck and Godspeed. You will be in my thoughts and prayers.
Welcome to HVJ. I think you will find a lot of support here. While we do have our family and friends to lean on these friends we meet here are experiencing the same emotions and health issues we are so they can be very supportive.
If you check my journal I have an 11 yr old son, Matty. I was at first wondering about having him see me after the surgery. He is an integral part of our family. A few months ago my husband had a hip replacement so we pulled him out of school so he could be with us at the hospital and see his Dad when he came out of the OR. This was going to a bit different with all the wires, IV's and breathing tube. The nurses and surgeons told us that it was up to us, but warned us that I could look very pale and scary. Matt assured me he would be fine. The morning of one of the prep nurses told him he couldn't see me in ICU with the tube and could see me the next day and he burst into silent tears as did my husband and daughter. He did manage to get in and be there when I awoke with the tube. We actually have a pic of him with me laying there looking terrible and him smiling brightly. He even commented yesterday to me that I did not look that bad. If either of your daughters would want to talk to Matty to ask him how his experience was I am sure he would be happy to chat.
As far as what to bring, I prob brought a bit too much. You have so many wires/tubes for a few days that you need to be in johnny, I did bring my own slippers which I used daily, I then brought 2 pairs of pjs and a robe. Quite honestly I wore the pjs one the second to last day prior to discharge and then on morning of wore my clothes home. I did bring a bra and tankini but found the tankini restricting and had no desire to wear the bra. (Still not wearing today as I wear underwire and the incision is so low I think it would rub. I brought sweatpants and a pair of flip flops, if you think you may be unsteady you may want sneaks, but I was fine and at my hospital they brought you from the room to your car in the wheelchair. I did also bring 2 family pics to have in my room and some of my own toiletries. I brought 2 books (one 50 shades of Grey) and some mags. I perused a few mags and maybe read my book twice. When I wasn't walking or visiting I was napping. I hope this info is helpful. If you want to talk offline my email is firstname.lastname@example.org
Another thought...about your daughters at the hospital...you will be on the ventilator for a period following surgery. The length of time varies with each patient. I don't know if you have ever seen someone on the ventilator, but it might be a little frightening to the young girls. Also, most of us gain fluid weight while in surgery from the fluid used while on bypass. I gained 17 pounds! Don't worry, I lost it all before discharge. However, I looked a little like the Pillsbury dough boy at first. I think you might not want your girls to see you while still on the ventilator.
Hi Mollie, welcome to HVJ! I had aortic valve replacement in March. I did not have the Ross procedure, so I can't tell you much about recovery from that. You might want to read the journals of Chris Dixon and Jeff Shebovsky. They both had Ross. I can tell you that you probably WILL want the recliner. They did not want me sleeping on my side for a while after surgery and the recliner was sort of a "cradle" for me to sleep on my back for a while. Also getting in and out of bed is a little difficult for a while. I already had a recliner, but I purchased an electric model for surgery. I wish I could have rented one instead, but I live in a small town and there just weren't any rentals. Another thing you might want to get is a travel pillow. Most people complain of neck and shoulder discomfort after surgery and the donut shaped pillow helps support your head and neck and was a lifesaver for me. About the bra...I never found one that was really comfortable. My chest tube incision was midline, right where the band of bras hit. Many ladies say the Ahhh bra works, but I think that depends on how "endowed" you are, lol. My incision wasn't a problem as far as the bra goes, it is right in the "cleavage" area and isn't really touched by a bra. It was that chest tube site that gave me the most problem. I had the mini sternotomy, my incision is only about 3 1/2 inches, but I guess you will have the full sternotomy if you have Ross. Check out Chris and Jeff's journal. If you have other questions that I might can help with, feel free to ask.
Oh...I left the hospital bra-less, lol, just wore t-shirt with a lightweight hoodie on top.
Linda Dixon, AVR 3/13/12