Hoping to meet with Dr. Pettersson

[ocunurse]

Hi,

You all have a wonderful website! I have read through most of the post, and its comforting seeing all the support from fellow users. I am 24 years old, a Registered Nurse, and I have a Bovine AV that is failing after 7.5 years. I was born and raised in Dallas, TX, where I had my original AV replaced by Dr. Steven Leonard at Children's Medical Center. Wonderful Surgeon!

I spent the next wonderful 7 years, moving to New Orleans, experiencing the strength of resolve of that city after Hurricane Katrina. I then decided to go to school in Oklahoma to get my BSN because I always wanted to be a nurse from being in and out of the hospital as a kid. Met my wife there. We moved to the suburbs of Detroit, MI to be closer to her family. I switched jobs in April, We got married in May, bought our first house in June. After going to my pediatric cardiologist for the first 23 years of my life, I had to find a new one in April for the new job. At that point he said my pressure gradient of my bovine valve was at 38 and that I would need surgery in my 20s.

I was devastated in April because my original discussions with my surgeon in Dallas led me to believe my valve would last 15-20 years.

Now fast forward towards the end of August/September, I start getting this crushing chest pains, shortness of breath, and a couple instances of dizziness. I had already rescheduled my check-up in October, so I just pushed through to make the appointment. Before the appointment, the chest pains were coming five or six days a week. My activity intolerance was booming. My Echo ON Oct. 11 showed a pressure gradient of 50 and at that time the cardio recommended a mechanical valve. His practice works with partner surgeons, so I wasn't able to pick my surgeon. I wasn't thrilled about that, but I went ahead with the pre-op screenings. I got my CT scan done, but when it was time to meet with his surgeon, something just didn't feel right and I didn't want to feel forced into having surgery with this guy.

I began to look around, and I discovered the Cleveland Clinic was only three hours away. I called the Resource Nurse, where she was the first to tell me about the ON-X valve. I was thrilled, what an exciting day that was.

Correct me if I am wrong. As of now, people with On-X valves are still required to take coumadin until this study is complete in 10 years?

Thanks to this forum and the resource nurse, I discovered Dr. Pettersson. The resource nurse told me I needed to get my operative notes from my surgery in Dallas to send to the CC. I was bummed because that process was going to tack on a few weeks before I could mail everything to CC, so my anxieties led me to just give Dr. Pettersson's office to see what they required.

The receptionist there said I just needed all my notes from my current cardio, echos, CTs, and that should be enough information.

I worked my overnight shift last night, got all the pieces together this morning, and overnighted them to Dr. Pattersson's office. Everywhere on the CC website, it says it takes them about 2-3 weeks before they can call you back.

I am anxiously awaiting that call, but I honestly feel a little better than before my cardio appointment. I'm not sure if the emotional stress/uncertainty was causing all the chest pain, but it has dropped in frequency. I have developed night sweats though, which is a new symptom.

This is a roller coaster ride, that I've been through once already in my relatively young life. I am looking forward to feeling better, so I can get back to living life with the same zeal that I did before.

Nice to meet all of you,

Trey

 

[Greg a]

Trey, WELCOME TO THIS FAMILY OF OHS BROTHERS AND SISTERS !! Sounds like quite the journey you have had in a mere 24 years I want to wish you Godspeed and hope everything works within the parameters you wish.

 

[Lynlw]

Hi Trey,
My son is close to your age, nice to meet you. You also might really like the forums at the Org for Adults with CHD. http://www.achaheart.org/community/discussion-forum.aspx I was wonderring, do you go to cardiologist or a center that specalises in Aduts with CHD or CHD? If not Beside Dr. Peterson, I would probably also get opinions from a CHD center.

As for your questions about the ON-x valve, yes right now unless you are in part of the trials you still need to take Coumadin, If you are in the trials, you might either take coumadin but at a lower INR, or Plavix and aspirin, so will still need some form of anticoagulant. FWIW some people believe other mech valves are as good or better than ON-X, but it depends who you talk to.
Hopefully you will hear back soon, and you might be right that the stress could be making your symptons worse, but with a gradient of 50, Im sure surgery will make you feel better.

 

[ocunurse]

Thank you all!

I'm meeting with Dr. Petterson's nurse on Wednesday and a local surgeon on Wednesday. Anxiety/excitement are cranking up, but hopefully, I'll be able to keep my mind occupied tomorrow. I have plenty of lawn work to do before winter comes up here in Michigan.

Lyn, I did try to schedule with a CHD doctor, but I when I moved up here I couldn't get in for about three months. In order for me to pass my physical, I needed something quicker. I asked my nurse manager if she knew of a good cardio, and I hooked up with my cardio. I'm comfortable with him, and I've looked into going to the University of Michigan CHD doctors, but I'm puting that on hold until after I meet with these two surgeons.

 

[Bina]

Hi Trey, and welcome.
Yes this is an anxious time, but it's best to deal with it and move forward.
If it helps to calm you, make a list of any miscellaneous questions that you may have.
Have a productive visit on Wednesday

 

[ocunurse]

Well I had my appointment today with the surgeon at the hospital I work for...He said that my aorta root needs to be replaced because it is 4.0 cm along with my AVR. He said this increases my mortality rate to 5%. I told him I thought that number was on the high side, and I'm quoting his response. "I'm like an appraiser, when you see a house at 500k, then I come in and appraise it at 275k, I'm a pessmist, the number is probably much more in your favor, but I have to say 5%." He also seemed to prefer me to get a pericardial valve and that hopefully this one would last longer than my bovine valve. He said it would last 10-15 years and by then the FDA may approve leaflet repair via catherization. He didn't seem to high on the mechanical valve.

I'm not sure if its my bias towards the hospital where I work or I didn't really appreciate his nonchalantness towards my survival on the operating table. He then went on to bash my pediatric surgeon for putting in a 23mm valve when he said it needed more like a 25-27mm.

I was devestated this morning. I think I forgot about the peaks and valleys during this whole process. I am thankful for my friends, my family and this forum to voice my feelings.

I then waited anxiously for the cleveland clinic to call me. Vicki, Dr. Pettersson's nurse clinician called me and we had a nice conversation. She said the films I sent her were unclear from my current cardio at the hospital I work at(no bashing, much more professional) and that she wanted for me to see a cardio in cleveland then meet with Dr. Pettersson with surgery scheduled tentaviely for Dec. 19th only if things fall into place. If it does, I'll probably either be in the hospital or in hotel for x-mas!!! Yay, I haven't taken a xmas trip in a while.

She also mentioned that in the CT-A report, my root was 3.7 and at that measurement they wouldn't replace it.


I know that I just need to give all my worries to the Lord, and I'll be just fine.

Thanks for listening.

 

[Luana]

He also seemed to prefer me to get a pericardial valve and that hopefully this one would last longer than my bovine valve. He said it would last 10-15 years and by then the FDA may approve leaflet repair via catherization. He didn't seem to high on the mechanical valve.

If it were me, I would be looking for another surgeon. Hopefully this one will last longer? 10 or 15 years? It's a crap shoot! You can hope all you want. It might last longer; it might not. At your age, you could be looking at about 5 or 6 more surgeries with tissue valves.

Sorry, but unless there is some really sound medical reason why you cannot have a mechanical valve, I'd be running as fast as I could away from this guy. I would put no stock into how a valve can be replaced in the future. You have no way of knowing if you'd be a candidate for that or not, and this next valve may not even last as long as the one you have now. You may need another two or three replacements before the catheter method is actually in use, and, again, no guarantee you will be a candidate for it.

 

[escargome]

Trey, were it I, I would first like you said put it into the Lord's hands. Next, see the cardio in cleveland, get additional opinions from all the doctors and then select the road that seems the best for YOU. I had my AV replaced at 57 but when I spoke with the surgeon we discussed the options presently available (mechanical, bovine, porcine) But had I been your age, I'm fairly certain that I would have been pretty set on mechanical. We can talk all we like about what might be happening in the future with heart valves but I think in the end the decision needs to be made around what is presently available. I will keep you in my prayers that the Lord give you insight into what will be the best for you. Stay positive and strong.

 

[scott.eitman]

As for Valves, I believe in working with your Cardio. They are a little more detacted from their skills vs what is right for you. Once you make a decsion, you can find a surgeon that will do what you need. I am confident that Dr. P can do it.

Assuming you asked, if you do not want to hear the numbers, don't ask. There is always a mortality rate for all surgeries and surgeons. If you do not like her skills, keep looking.

I hope to see you in Cleveland...not that I am biased

 

[ocunurse]

If it were me, I would be looking for another surgeon. Hopefully this one will last longer? 10 or 15 years? It's a crap shoot! You can hope all you want. It might last longer; it might not. At your age, you could be looking at about 5 or 6 more surgeries with tissue valves.

Sorry, but unless there is some really sound medical reason why you cannot have a mechanical valve, I'd be running as fast as I could away from this guy. I would put no stock into how a valve can be replaced in the future. You have no way of knowing if you'd be a candidate for that or not, and this next valve may not even last as long as the one you have now. You may need another two or three replacements before the catheter method is actually in use, and, again, no guarantee you will be a candidate for it.

Yeah, I've completely moved on from Dr. Shannon in Detroit. I probably met with three surgeons when I was 16 and this one had the absolute worst bedside manner. Who knows? He could be a great surgeon, but he was unable to exude confidence in my future success with whatever valve I choose. I'm looking forward to meeting with Dr. Pettersson. If things don't work out with Dr. Pettersson, then I'll move onto the university of michigan health system. Back to waiting I go, but hopefully not for long. Scheduled to meet docs in cleveland nov 22-23, but still waiting for confirmation. Next step is to go to the dentist a week from today.

I think I'm handeling my emotional stress better because the crushing chest pains are infrequent. I've pretty much shut myself down though when off from work, so I haven't expierenced SOB or dizziness. I have to work two 12 hour overnights now, wish me luck. .

 

[Greg a]

Keep us posted how Cleveland goes 22&23 I have you on the calendar for the 12/19th for now

 

[John & Joann]

Dr.P is absolutely the best cardio surgeon in the WORLD. We have the highest respect for his character and medical skills. Joann's surgery was in 1999. (first in 71). The cardiologist just told us yesterday that Dr. P. still talks about Joann. You are in good hands at Cleveland Clinic. We would be most pleased to talk to you via telephone if you have any questions. Send us a PM.

 

[ocunurse]

Just got back from visiting the Dr. P. He has a unique sense of humor, but he seemed incredibly knowledgeable and confident that the surgery was going to go well. I can breathe a sigh of relief, knowing I'm in the bast hands at the CC. I'm still scheduled for surgery on 12/19 and the plan is for him to put in a On-X valve, possibly participate in the study with other coagulation, and he is planning to manually decrease my aortic root in size. I was extremely happy about that! He agreed that taking the root out was a bad idea incase of another Re-Do.

My mean gradient is up to 78 with a peak of 109. I'm really starting to get hit hard with fatigue/shortness of breath. I'm at work now, but I'm planning on talking to my managers about starting my leave sooner than a couple of days before surgery. I'm exhausted and my patient group tonight isn't all that hard. I fathom to think if it were a more acute group.

Happy Thanksgiving to everyone!!! This time around, I'm excited to feel better! I always have the little nervousness/anxiety creeping in the back, but I'm confident my procedure will go well and I'm in the best hands.

 

[John & Joann]

What cardiologist will be involved in your case. We are so pleased that your meeting with Dr. P. went very well. You have one of the very best in the business. Being well rested before the surgery would be a great decision. I would expect that you will be able to return to work in 4 to 6 weeks. Keep in touch if you have any questions.

 

[sarahsunshine]

Sorry I didn't see this earlier, and sorry to hear that your tissue valve didn't hold up as long as expected.

I just thought I'd let you know that I'm particularly interested in your story because my step-son (12yo) will be having OHS (mitral On-X and aortic repair/replacement). There's a good possiblility he'll need a redo around 17years old if they can't put in an "adult sized" valve.

Hope all goes well! What better Christmas present than good health?

 

[Lynlw]

Glad to hear your meting went so well and you are confident things will go well with Dr. peterson, i really belief that goes a long way in your recovery. Hopefully you'll even be home for Christmas if your surgery is on the 19th.

I know you didn't ask, but i personally would give alot of thought before deciding to take part in the study, Justin has been in a couple and something not even studies, just theory since there weren't that many people needing what he did, but the one thing I always took into consideration was the "worst case' senerio and if it is something i could life with knowing it might not have happened if he didn't take part. Like a stent instead of surgery, knowing if it worked he'd put off surgery a while, if it didnt he'd need the surgery we hoped to avoid, or things like that, in this study, since the worst case COULD be an increased risk of stroke, and the early results showed a slight increase in stroke/clot in the lower INR compared to a slight increase in bleeds at the normal range, is it worth it to us to take part and risk it?

 

[bradvo]

Hi Ocunurse, I'm around 3 weeks now with my on-x valve. I'm impressed with how quiet it is, most times I never hear it at all. My surgeon put in the largest size available for myself, I'm 56 and hoping this valve will carry me till the end . I'll have more questions for him when I meet up with him this coming Tuesday, it will be our first post op office meeting.
I also wanted to be part of the study, it does come with some added benefits including echo scans, paid drugs and home blood monitoring. Everyone has to take the warfarin for the first 3 months . I found it to be pretty attractive myself with the added medical test and free drugs. I'm not sure of the negative consequences and would not even know how to get info on this. It sounds like you made a good choice in surgeons now from what I read, I would highly recommend more time off before the operation.
My bosses wanted me out when they heard I was having OHS, I kept coming in and doing my job, then on the second week as the date got closer I realized I was not focusing on my job as much , so decided to exit until I got fixed. We were all happier with my decision, I felt relieved to be able to have time off before surgery. I ran around and fixed all the little things around our house that needed attention.
I really feel you will be happy with the on-x choice, lets just all pray this will be a valve for life. :smile2:

 

[ocunurse]

What cardiologist will be involved in your case. We are so pleased that your meeting with Dr. P. went very well. You have one of the very best in the business. Being well rested before the surgery would be a great decision. I would expect that you will be able to return to work in 4 to 6 weeks. Keep in touch if you have any questions.

I met with Dr. Underwood, but they said the cardio will probably change by December 19th because of rotations. I kept pushing to be seen by cardio there post-op, but the preop nurses kind of looked at me weird. I'm still have yet to speak with the research nurse regarding the on-x trial, so my postop care is still up in the air as of now.

I know you didn't ask, but i personally would give alot of thought before deciding to take part in the study, Justin has been in a couple and something not even studies, just theory since there weren't that many people needing what he did, but the one thing I always took into consideration was the "worst case' senerio and if it is something i could life with knowing it might not have happened if he didn't take part. Like a stent instead of surgery, knowing if it worked he'd put off surgery a while, if it didnt he'd need the surgery we hoped to avoid, or things like that, in this study, since the worst case COULD be an increased risk of stroke, and the early results showed a slight increase in stroke/clot in the lower INR compared to a slight increase in bleeds at the normal range, is it worth it to us to take part and risk it?

Oh yeah, when I talk to the research nurse, I will have tons of questions! Especially if there is an opt-out clause, and what penalty there is for opting out, along with risks.

I just thought I'd let you know that I'm particularly interested in your story because my step-son (12yo) will be having OHS (mitral On-X and aortic repair/replacement). There's a good possiblility he'll need a redo around 17years old if they can't put in an "adult sized" valve.

Wow sounds all too familiar. They toyed around with the idea of using a balloon repair for when I was your step-sons age due to the "size issue." I had my aorta replaced when I was 16, thankfully I haven't grown too drastically since then, but the surgeons are thinking of increassing the size of the valve from 23 to 25, but Dr. P said he would have to make that decision at the time of surgery.


Ahh, I'm tired of quoting, and its probably taking up way too much space, SOOOOOO bradvo. Hi, my name is Trey. I'd love to keep in touch with you since our surgeries will be spaced out about six weeks apart and if I take part in the study. I'm anxious to hear from the Nurse. Dr. P said the study is worth it for the free home monitoring alone. LOL. We'll see, I'll have to make that decision in the coming weeks. I forsure need to click on the banner on the top of the boards to get the 150 bucks. Did your research nurse ever mention any consequences of wanting to get out of the study?


This board is awesome!!:smile2::smile2: Makes me feel more confident and better everytime I come here. Have a nice weekend everyone.

-Trey

 

[Lionheart]

Hey Trey,
Dr. P. did my valve and at the same time repaired my enlarged ascending aorta. He is very skilled. You will be in good and competent hands.
Best,
John

 

[bradvo]

Trey, I never brought up getting out of the study, if I become a 100% guinea pig for this I intend to commit to the study.

AS far as staying in touch, I'm pretty sure I'll be around this place for quite awhile :thumbup: