Consult at Emory questions

[Sheila2old]

Ok y'all, I go to Atlanta on Monday to see a new surgeon on Tuesday named Dr Omar Lattouf at Emory Crawford Long Hospital. I'm trying to get my 'questions' list going and wondered if any of you have anything to add?

All of you seem so knowledgeable about this and I'm so terrified he'll say no that I can't think straight! I've been told I'm 'inoperable' by my cardiologist, and 'Nope too risky for me' by Cardio/Thoracic surgeon that did my 2Thoracotomy surgeries, 'not a candidate for surgery' by my Pulmonary Dr but they all say 'Yep, you NEED it done!' So what do I do but keep looking for someone to fix me.....but I'm so scared that he'll say no, that I can't get my mind around the questions to ask if he says yes!

And in the meantime I'm so stressed by it all and so tired of feeling like cr*p and staying exhausted. My hubby is a wonderful man but right this minute I want to choke him cause he's so calm and when I mention any of it he just listens and don't say a word! How do I get him to WANT to know all the things I've learned on this site??

The Dr office RN that I spoke with talked with Dr Lattouf while I was on the phone and he told her that he would be "glad to see me and would help me find another Dr if he couldn't do it"......and at the same time they said I would probably go in for surgery within a couple days of my visit since all my tests (EKG, Echo & Cardiac Cath) have been done so recently! UGGH! So when I see him on Tuesday, IF he can do it, I might be in surgery on Thursday?!

I have read, read, read this site since finding it a few weeks ago and I THANK ALL OF YOU for your previous posts that are full of information & laughter too. Thanks to you all, I'm not insane just yet but today it seems like my 'padded cell' is looming closer!

Here is my list so far....please tell me what I'm forgetting because of my fear of rejection again??

Questions about the surgery itself
1. Is this surgery advisable? How High Risk is this?
2. What will likely happen if surgery is not done? How long will my heart last?
3. Will I feel better/have more energy afterwards?
4. Will you be available for complications after the operation?
5. How long does the surgery usually take?
6. Will someone update my family during surgery?
7. How long in the hospital?
8. What kind of follow-up is expected after the procedure?
9. What type of long-term follow-up does one need in the years after surgery (i.e. Doctor visits, echos, EKGs, etc.)?
10. Are you the Dr that will do the surgery? Have others to help?
11. I?m terrified of the ventilator! Don?t want to be aware of it if possible ok??
12. How soon should this be done?

Questions about the surgeon & rate of success
1. How many valve replacements/double valves have you done?
2. What has been your success rate? Your long-term success rates?
3. Have you had much/how much experience with Radiated hearts?
4. What is your mortality rate?
5. What about Transplant List options?

Other Questions Regarding Pre-Op and Post-Op Care
1. Can my husband stay with me or be allowed in when he wants?
2. What is 'Plan B' if the surgery cannot be performed for some reason?
3. What would have to happen for you to revert to 'Plan B'?
4. What effect will my Osteoporosis (-3.2) have on the sternum healing?
5. What type of materials are you going to use (valve type)?
6. What will you do for nausea - will you give medication to treat it? How liberally? (Can?t take Phenergan!!)
7. What will you give for pain meds? How liberally?
8. What kinds of post-op medication will I have take (e.g. aspirin, blood thinner, blood pressure med, etc.)? For life, or approximately how long?
9. Who will be my cardiologist afterwards?

 

[PJmomrunner]

Sheila:

You seem like you are keeping it together remarkably well; your issues could be overwhelming for one of lesser mettle.

The only thing that occurred to me when looking through your list would be to ask the surgeon what challenges he would anticipate when working on an irradiated heart versus a heart that had not been through so much, and what steps he would take to deal with those challenges. Having been turned down so much already, you probably know the answers to these questions, and I would think he'd tell you before you ask, but if he doesn't and you do ask, his answers will give you a way to gauge whether you think he's up for the challenge.

I hope you do find yourself in surgery on Thursday and on your way to a life of renewed energy well away from the padded cell!

 

[MikeHeim]

You list looks pretty good - and certainly a whole lot more complete than mine was at the time. My surgeon covered most of your first block of questions in his opening speech to me (lasted at least 15 minutes before I even had the opportunity to ask a question). Most surgeons (as I would hope) are pretty proud of their success rate, so you can expect that to be covered as well. The rest of your questions are good and probing - you've obviously thought about this for awhile.

As far as your husband goes - make sure that you're being fair to him. I can tell you that I sure wasn't fair to my fiance. On the outside, I tried to be really calm in the weeks leading up to surgery. I constantly quoted success rate statistics and commented on how valve surgery was almost "routine" at this point. Of course, on the inside I was going completely crazy. I must have done a great job of acting calm because my fiance seemed pretty calm and nonchalant about the entire ordeal. She told me later that she thought that I wanted her to be calm about it. HELL NO! What I really wanted was for her to be torn up, worried sick, and constantly fretting the way I was - on the inside that is. Her calmness made me furiuos at her and we had more than a few fights in those last weeks before surgery. All my fault, I admit. Anyways, I don't know your particular case, but I just wanted to relate mine. Hope it helps.

Mike

 

[Tom F.]

At University of Chicago Hospital there is one surgeon, Dr. Jeevanandam, whose specialty is very high risk surgeries. I know its a ways away from you, but I would keep it in mind.

 

[Granbonny]

Shelia

Shelia

I, too, live in Georgia. I believe that the hospital..Emory Crawford Long..is in downtown Atlanta. Not the big Emory hospital...that we have had several members have their surgery. I had mine at St. Joseph's in Atlanta.We have had several active members have their's there.I know 1 member who went to the hospital that you are talking about. I will PM you her name.Maybe you can e-mail/PM her?..Bonnie

 

[Kate]

I think your list looks great - no suggestions of questions to add. However, since you know you're nervous about the meeting, you might want to identify the questions that need to get asked to make the decision to go ahead or not (like what the risks are, surgeon success rate etc.) and put those all at the top. Then, if you decide it seems like a good idea, you can go on to ask procedural questions about who will speak to your family, being sedated with the ventilator,etc. By having the most important questions up top, you're less likely to miss one or get into details that won't be necessary if you decide this isn't the right situation for you. I hope all goes well, Kate

 

[DeWayne]

I just had surgery at Emory 2 months ago. Not sure what part of Crawford Long is a part of Emory but you might want to check out this site. http://www.emoryhealthcare.org/departments/cardiology/heart_failure/therapy.html


If you look at the list of Doctors in the Heart FailureTherapy, Dr. Wendy Book is my cardiologist. She is terrific. She tells it no holds barred but lets you know what and who should be the right person for surgery, at least she did for me. As for me I am a part of the congenital heart program.

I am at 2 months removed from a pretty big surgery, and have been told I am good to go, no problems no limitations no anything other than come back and see us in 6 months. You can see who my surgeon is on my tag line below.

Excellent place. Just not sure what the connection with Crawford Long is, I believe they might just handle different parts of the program there.

 

[StretchL]

I think the above suggestions are great... and I hope you hear what you want from the surgeon on Tuesday!

 

[twinmaker]

I didn't have my OHS at Crawford Long, but had many other procedures done there...pacemaker implantation, A-V node ablation, cardioversions, and many other hospitalizations. Emory Crawford Long Hospital is part of the Emory University system in Atlanta. Crawford Long was acquired by Emory a while back. It's in downtown Atlanta. My cardiologist there was Byron Williams. He is wonderful. I also had an electrophysiologist there. I wish I could give you more help about surgeons there, but I can tell you that I was hospitalized there several times during a five year period and received excellent care. And I've been in a lot of hospitals. One nice thing about Crawford Long is that all the rooms are private. That meant that insurance would cover the entire cost as if you were in a semi-private room because private was all they had. The nursing staff was excellent. Of course, they got to know me really well on the cardiac floor...which may not be a good thing. I'll be interested to know how things go for you. Keep us posted. LINDA

 

[DeWaynesWife]

Sheila,
If you want to know more about the Emory Healthcare system you might start here:
http://www.emoryhealthcare.org/departments/heart/index.html.

You'll find a bio there on your Dr. Lattouf there. You will also find "Emory University Hospital" #15 on the list here under Heart and heart surgery. It gave me comfort.

http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm

From a non-patients perspective my experience with the Emory system at Emory University Hospital and the Emory Clinic was a blessing. They were very organized and helpful at every turn. I can't speak for Crawford Long Hospital, but if there is competence by association, they should be good. If your Dr. Lattouf wants you to be at Emory U. Hospital, you will be in good hands.

I was able to stay with my hubby 24 hours a day in the hospital once he was out of ICU. They did provide a few progress updates during surgery. His surgery took 2 hours longer than estimated. I learned after that wasn't unusual. So anyone waiting for you shouldn't panic.

One thing you can NOT expect (from any Dr. or Hospital) is black and white answers to some of your questions. They will do their best, but I think it's that they know each person is unique so they are never sure. Especially the "how long...." questions. You'll get a feel of that reading about everyone elses experiences on this sight. No two are quite alike.

DeWayne posted his view on his experience there for you too.

I'll pray they have good news for you next week.

God bless,
Gwen

 

[ALCapshaw2]

EXCELLENT List of Questions Sheila.

Two additional Questions come to my mind:

I suggest that your #1 Question for the Surgeon be:

Have you ever performed Valve Replacement Surgery on a patient whose heart has been damaged by high dose Radiation Therapy? and if so, what challenges do you expect to find. Same type of question for your other issues. That should give you a good feel for his experience with your issues!

(FWIW, Dr. McGiffin at UAB is the ONLY doctor I ever talked with who KNEW off the top of his head what to expect ahead of time in the way of radiation damage).

The second question is: If YOU do not feed capable of handling the risks my case presents, would you be willing to write a letter to that effect and to recommend another surgeon (either IN or OUT of your insurance network)?

With support from top in-network surgeon(s), most insurance companies seem to be willing to find a way to cover an out-of-network EXPERT if the situation warrants it. You may have to be TOUGH and PERSISTENT to get them to acquiesce. Letters from In-Network Doctors carry a LOT of weight.

Good Luck next week!

We all will await your report with baited breath.

'AL Capshaw'

 

[ALCapshaw2]

One last suggestion:

Type out your list of questions with room for answers after each one and make copies to take with you, one for the Surgeon, one (or two) for you (to write down answers), and maybe a copy for your Cardiologist and other Doctors involved in your care.

'AL Capshaw'

 

[ALCapshaw2]

And yet another:

Take someone with you, preferably your husband, or another medically knowledgable friend, to help take notes and remember what the surgeon said. You might even want to ask if he would mind if your tape record your session so that you can review it when you are less stressed.

I've found that doctors are more likely to act in a "Role Model" manner if there is a witness.

'AL Capshaw'

 

[Sheila2old]

THANK YOU THANK YOU THANK YOU!! You all are the dearest people!! The Lord was watching over me the day I found this site for sure! I am feeling a bit calmer today thanks to you lovely people and a short fishing trip with the hubby last night...I sat on the tailgate of my truck and watched him 'try' to catch some catfish.

*PJMom, Thanks for the vote of confidence and the cell might be farther away today!

*Mike, the hubby did finally talk a little while fishing last night, he's just trying to stay calm until we know more about this Dr and figures I'm panicked enough for both of us

*Granbonny, I pm'd you and Thanks!

*Kate, Thank you and yes, I need to rearrange my list a bit yet

*DeWayne & Gwen, I've already been all over Emory's website and have learned a lot, I hope my experience goes as well as yours did! Thank you!

*Twinmaker, I am familiar with downtown a little as my family spent a long weekend up there last month to visit my hubby's sister while she was in town with the Kenny Chesney concert at Philips Arena....got FREE VIP tickets and had a great time! Learned my way around down there in a good way!

*Al, you dear man, I have added your suggestions to my list and the hubby has his TDY orders to go with me and be my NMA (non-medical attendant). His Unit supports his going with me 100% and if they didn't, I think he'd be AWOL anyways! And Dr McGiffin is my next goal if this doesn't work out.

*Tom, thanks and I'll definitely keep him in mind!

*Stretch, thanks for the support and congrats again on your 'date'!