Maureen's Posts

Yes, infection all healed up, but the very top of my sternum still has a scab, which I am hoping heals up, especially before my echo this week! I do think that I have more stability this time following surgery. I didn't end up using my pillow as much because it just didnt' seem to make as much of a difference. I didn't think I would have wires again, but my surgeon chose to do the LSS plates/screws with the wires and doesn't think I will ever have any issues!

I have a few wires with the Sternalock Blu plates, but so far🤞🏼, they do not cause any issues. I think I would feel like a "bionic woman", if I had metal working parts, like a mechanical valve or pacemaker, instead I identify with Mrs. Frankenstein 😄,because of all the various parts stitched back together 🪡 Hope your echo is looking good 👍🏻

Thank you Grace! I hear what you are saying, LOL! The #s on the echo look good, especially the valve area is so much better! No wonder I could feel such a difference. The surgeon will analyze it when he is back in clinic next week. After my echo, the top part of my incision "popped" like a blister, so not sure what that is all about. It looks like it is where my other scar overlapped the new one and perhaps fluid built up? So strange as I didn't have any issues with my last incision. (This was a re-op.) And didn't realize you had some wires, but that makes sense! Glad you have done well! I am hopeful that I can get more back to "normal." I started cardiac rehab, but I am hypersensitive to the hydrogel in the leads and broke out! And not sure I want to do wireless monitoring for 3 hours a week since I am sensitive to EMFs, so we shall see! I honestly am so excited about walking more as the fall weather becomes a little cooler. Thanks again for your input!

Thank you so very much to all of you for the encouragement, prayers and well wishes! I am still consulting with Northwestern (about the Ross) on Monday -- and then preop test Tuesday and surgery Wednesday at Vanderbilt! Starting to seem a bit surreal and the thought of the days aheah is a bit overwhelming, but came through it once and have to trust that I will again!

Thank you for all of your comments and encouragement! I did have a successful Ross Procedure and am so thankful! Had a few bumps in the road (bottom of my incision got infected and had to be readmitted for 2 days for IV antibiotics and to do a CT scan to make sure the infection was contained just to the wound.) All seems to be good and just finished 8 days of antibiotics at home! Feel like it slowed up my recovery somewhat, but am thankful to be home and can tell my heart is working well! I just have to recover from the soreness, poking and prodding from bloodwork and nosebleeds from the short-term meds! Will be a month tomorrow that I had my surgery! It actually got moved up to June 2nd -- and turns out that prosthetic valve was severely compromised, so thankful to be alive!!! It was trulyl a life-saving procedure!!!!

That is wonderful news about your successful Ross procedure Maureen! Welcome to recovery ❤️‍🩹 Now you have another day in the year to celebrate in each year to follow, like a second birthday. So glad you advocated for yourself and hope you have looked for a new cardiologist that isn't going to put you at risk when intervention is needed. So glad to hear you are already feeling better. Wishing you a smooth recovery going forward.

Thank you Grace! I have had a few bumps in the road and had to be readmitted 2 weeks afterwards due to an infection at the bottom of my wound! Thankfully, it was extrernal only, but was hard being in the hospital for antoher two days for the IV antibiotics and CT scan, especially since I get so bruised from being poked and prodded! Still "packing" that wound and seems to be getting much smaller and healing, hopefully! The oral round of antibiotics at home has caused some other issues, but overall I am on the mend! That prosthetic valve was so severely compromised that it is truly a miracle that I am here!

Hi Maureen, I had a Ross procedure a year and a half ago. I would definitely consider Ross at your age. I highly recommend going to a Ross center of excellence where they do this procedure often as it is a more complicated surgery (though recovery is not much different than a single valve replacement). Check out Ross procedure org for a list of surgeons that specialize in Ross procedures. If you have other questions, I'm happy to give my best answer 😊. I would get more than one opinion as well. I opted to go with Dr El-Hamamsy in NYC for my surgery. He is amazing! His whole team is wonderful! I was able to have a zoom consult with him within a few weeks of calling his office.

Thank you so much for your input! I will have to check out the videso Susan -- and Grace -- Thank you for the information on the Ross as well! Yes, I planned to get a second opinion -- and it is hard to know what to do based on the travel, etc. The surgeon I met with at Vanderbilt is the head of cardiac surgery -- and he has done most of the "re-ops" from my retired surgeon (Dr. Petracek) -- who was world renowned. Vanderbilt isn't one of the top Cardiac Centers for the Ross, but I do think the surgeon is well qualified, so will get a 2nd opinion and weigh my options for travel, etc. It is a little scary that you have to watch tow valves, but they are live valves that could last my lifetime, so definitely worth trying this from everything I have researched! Thank you again!!!

I would ask the surgeon you talk with how many Ross procedures they have done, whomever you consider. If less than 100, I would continue looking. My surgeon does a Ross several times a week, for example, and probably somewhere around 700 over his career now. I think it is a little worry that there are two valves to watch now but I felt the benefits outweighed that concern. My hope is that this correction of my bicuspid is the best option for lasting longer than a tissue valve and with less risks from clots and the risks that accompany blood thinners using a mechanical valve. My aortic valve is a live valve which is great because it has the greatest pressure. My pulmonary valve was replaced with a donated valve but it is not living, but inert, like a tissue valve (no rejection issues) but it sees much less pressure than the aortic valve so it should last longer in that position.

Thank you for that advice! Yes, we went to ask him -- and while he seems to have done a lot of procedures, definitely want to know how many! I didn't even think Vanderbilt was an option for this, but seems that they do the Ross Procedure more regularly. My retired surgeon didn't offer this as an option last time in 2013 -- and still had kids in school, so we opted for the tissue valve b/c I can't take bloodthinners and am chemically sensitive. The current head of surgery said that they have worked through a lot of issues with the Ross at this date in time -- and that is perhaps why my other surgeon did not offer that last time (b/c there were still some issues.) Did you do the titanium plates instead of sternal wires this time?

Yes, I requested the Sternalock Blu titanium plates. They do not normally do them at most hospitals(except at Franciscan with Dr Gerdisch), unless you meet certain criteria. I didn't, but one of my consults I did before my surgery was with Dr. Gerdisch in Indianapolis. I learned about the plates from him and read more about them here on Adam's site, as well. Dr Gerdisch doesn't do Ross procedures but he did give me a couple of names of surgeons if I was interested in a Ross, the first one being Dr El-Hamamsy. Once I talked with him I felt really certain he was the one I wanted to do my surgery. Dr Gerdisch said if the plates were important to me I should talk to the surgeon about that as an option beforehand, so that is what I did. I don't think a Ross procedure was as much in favor 10-12 years ago, mostly because it's a more complicated surgery and most surgeons just don't have the training. Now that there have been more studies, since they began doing them, showing that it can offer recipients a great long-term outcome, there are more centers and surgeons learning and performing them. I know Dr El-Hamamsy travels all over and shares his expertise. Glad you are getting several opinions and asking lots of questions, especially since you are chemically sensitive.

Thank you so much Grace! This is such helpful information. They just told me they do the titanium plates now instead of sternal wires (which I have) -- and will have to research the Stenalock blu plates! You are so knowledgeable and can tell you have done your research! I really do have more questions that I need to ask and am still really worried about getting through the CT scan with iodinated contrast dye! I can tell that I am becoming more symptomatic -- and I know the Trifecta valve I have has outpeformed most, even though it was the "up and coming" valve when I had it replaced. They are concerned it could tear, so likely looking at surgery ASAP once I get through the CT scan. I still plan to do the 2nd opinion with Dr.Johnston/Northwestern -- and wonder if I should reach out to additonal specialized heart centers. The traveling would be difficult as I mentioned, but it if is worth it, we will have to work that out! Thank you again for the advice -- and hope you had a wonderful Easter!

Thanks Susan. Yes, it was recommended to me by the head of cardiac surgery at Vanderbilt and the surgeon is well skilled, but while Vanderbilt has been rated well, it is not listed as a specialized "Ross" center. I am also trying to get a consultation with Northwestern, but know traveling isn't easy after heart surgery (Since I live in TN.) I just had to reschedule my CT Angiography with contrast b/c while I am doing pretreatment for a reaction to the dye, I had to have a specialized plan due to my mast cell issues/chemical sensititivies. Hoping I can get through all of this before having any severe issues with my Trifecta valve (mine has outperformed and chance it could tear...) Appreciate your input!