No date-but he wants to send me to CC

[Taysgrama]

I just talked to the scheduler at my surgeons office and she said that he was sending me to Cleveland Clinic for my surgery instead of doing it here in Dayton. My insurance will not pay for Cleveland Clinic because we have a heart hospital here and if I have to go to Cleveland, then I will be waiting for at least a month just to see the surgeons up there and then I would have to wait for surgery (my luck, another month). On top of all that, my husband HAS to work everyday, except for the day of surgery and the day after and Cleveland is too far from here. I would also have to pay for hotel rooms for my family to stay up there with me and we just cannot afford it. If DH does not work, he does not get paid and since I will be off work for 8 weeks without pay, this is soooo not an option.

What do I do now? I told her that I cannot go to the Cleveland Clinic, but she said that he was quite adamant that I go there. She is going to talk to him after surgery this morning (she said between 11am and 1pm), but I am not dealing with this very well now. Thanks for listening all!

Diana

 

[Ross]

Diana if he's that adamant, there is a very good reason. Perhaps your more complicated then first thought and you need CCF's experts to help.

 

[Taysgrama]

According to what he told us on Monday, this is a routine surgery for him. I have a feeling that he wants to send me to Cleveland Clinic because he cannot figure "Why" my valves starting leaking. He seems to be more concerned with the why at this point. When we saw him on Monday, he said that he wanted to talk to a doctor friend of his at Cleveland Clinic and then he would schedule the surgery. I really can't wait for 2 more months to get this fixed. If the valves don't kill me, I am afraid that the stress level will.

I ended up in ER last night due to chest pain and shortness of breath. They did an EKG but said they thought it was just stress related and gave me a valium for last night and sent me home. I do not want to end up in there again.

Thanks for the input!

diana

 

[kfay]

Diana, first of all you may be completely wrong about the time frame if you go to the CC. They might get you in to see a Dr. much sooner than a month and if surgery is really pressing, I would think there is no way they would make you wait another month. Also, as far as your insurance goes, if your Dr. recomends that your surgery is done there because it can't be done locally in Dayton, they may very well cover it. You won't know that for sure until the hospital tries for approval and even that is appealable. They may also have housing available there for people unable to pay for hotel rooms. We had a hotel room the whole time I was at the Mayo, however, my husband only spent the 2 nights I was in ICU there. The rest of the time he stayed with me. As far as the whole work issue, is there any way your kids can come and stay with you so your husband can go back to work? Hopefully you won't need to be in the hospital for longer than a week (possibly several days shorter).

Wait and talk with your Dr. locally instead of the scheduler and try to understand his reasoning. My Dr. at home immediately told me I needed to go to Mayo to get the best....I did it without a second thought.

You might want to pm one of our members, alpha 1, who just very recently was there for her son's surgery. She might be able to give you ideas about hotels, etc.

Kim

 

[Taysgrama]

The major problem with having one of my kids come up there would be the money issue again. I would have to pay for the food, etc. and since I will not have an income for 8 weeks, I can't my way clear to do that. The other issue is my DH would not leave me there without him. Thanks for all the advice and help! It is greatly appreciated.

Good luck to all who have their surgeries scheduled. You are all in my prayers!

Diana

 

[Karlynn]

If you doctor is insistent that you need to go to CC because you cannot be handled well there, then the insurance company should be able to give out-of-network approval. You may also want to get a 2nd opinion from another cardiologist. He has to know that the cost would be extremely prohibitive if insurance isn't covering the surgery.

 

[Phyllis]

Diana,
Here is a link to the Cleveland Clinic website for places to stay- many of which offer reduced rates for family of patients:
http://www.clevelandclinic.org/socialwork/HotelsintheArea.htm#guesthouse

I am sure if you need to go there and contact the hospital's social service's dept., they will have many solutions.

 

[Dawn-Marie]

Diana ~ I don't have any answers for you, but i wanted to extend my best wishes and prayers for a successful outcome for you. I hope you find a way to get to Cleveland Clinic if you need to. My doctor, too, wants me to go to Cleveland Clinic, but Medicaid (i have both Medicare and Medicaid) won't pay for the transportation there for me. I'm paralyzed from the upper chest down so i require a wheelchair van, which costs a fortune. They said it will be much cheaper to send me to nearby Erie, PA., so that's where i have to go. The cardiologist in Erie said i definitely should go to Cleveland because of other medical issues i have, plus the fact that the surgeon i'm going to hasn't performed very many aortic valve surgeries. He mostly does bypasses. I guess he will be the one doing the surgery though. He said doing the valve replacement will be the easy part...with me it's the breathing and coughing issues i have. I know how stressful it is for you...i bet i start sobbing several times a day from the stress i've been going through. When i called Cleveland Clinic they told me also that i would have a 4-5 week wait just to see a doctor there. Must be they are busy right now, because some people seem to get in right away.

I hope your doctor can get a out-of-network approval for you to go to Cleveland Clinic. Try to stay as calm as possible as it truly can be so bad for your heart (i know, easier said than done). Please let us know how you make out with your dr. and insurance company. ~Hugs~ Dawn-Marie

 

[Susan BAV]

Diana, I wonder if there's a different angle to this situation. Maybe there is something your doctor knows about and/or has serious reservations about in regard to the other hospital and/or surgeons there. Maybe this is just her best way of steering you away from that one?

 

[ALCapshaw2]

Several years ago (April 27, 2004) I started a thread entitled "Heart Hospital in Dayton, OH (or Cincinnati)" in the Heart Talk Forum.

Here is a link to one of those posts from which you can scroll through the entire thread to view all replies.

http://www.valvereplacement.com/forums/showthread.php?p=79481&highlight="Dayton+hospitals"#post79481

=========

Comment on your logistic and monetary concerns:

While those issues are important, they are trumped by
Life and Death Considerations. If the Local Surgeon tells you he thinks you need to go to Cleveland Clinic, he has a reason, which very well may be related to SURVIVAL. There is a Wide Range in capability of Heart Surgeons. Someone who focuses on Bypass Surgery is probably NOT the surgeon you need for a complex Valve related issue.

For starters, you should ask WHY he wants you to go to CC. Then ask if there is another surgeon / hospital in or near Dayton that could do what you need.

Finally, if your local surgeon does not want to risk doing what you need, that should be enough to convince your insurance carrier to consider an out-of-network referal. Hopefully your local surgeon could write a letter to your insurance carrier stating why he believes you need to go to CC.

Sometimes you need to Fight Insurance Providers to get what you need. Assistance from your Doctors carries a LOT of weight.

'AL Capshaw'

 

[Nancy]

It isn't often that any surgeon would send a patient off to another facility. Joe always said, "He's a surgeon--he wants to cut!" and he was right.

So please think about this with a clear head. Yes, you have major problems with the trip, but you have one opportunity to get this right, and if the local cutter doesn't want to cut on you, then he has a VERY good reason.

Maybe someone in your family can brainstorm with you about your concerns and try to deal with them one at a time and see if there are viable ways to get you to CC.

Your doctors may have to write to your insurance carrier to help you out there. CC may even be able to do that as well.

This is your life. Your surgery may very well need better facilities than what is available locally.

 

[Taysgrama]

My doctors nurse finally called be back at about 5:30 tonight and said that he was offering Cleveland Clinic as an option to me since I had mentioned it to my cardiac doctor when he wanted to put me on high blood pressure (I have extremely low blood pressure) medication for 6 months before sending me to a surgeon. All that happened before he did the TEE echo and saw the amount of leakage that I had.

So, bottom line is AVR at Dayton Heart, hopefully sometime next week, if his calendar is not full already. He also asked his nurse to see if I would rather have a repair instead of the St Jude Valve, but after doing all the research, I do not want the repair since it looks like mostly everyone that has or had a repair is having or has had surgery a second time. I do not want to have that worry hanging over my head for the rest of my live. I would much rather have the replacement now and have more peace of mind.

Everyone on this forum is to be commended for their thoughfulness and information. You have no idea how much you have helped me and my family through this ordeal! Once I have a date, I will post it. She is supposed to call me in the morning with my choices.

diana

 

[Rick]

Repair vs replace, CCF or local

Repair vs replace, CCF or local

I'd ask the cardiologist and surgeon if they felt a repair or replacement were better suited for you. I'd have a hard time making a decision like that talking to the nurse. Though repair is hard, maybe your valve specifics would work out. This is a big decision and your MDs need to weight the risks of reoperation versus additional years of the thromboembolism / hemorrage risks associated with a mechanical valve. I suggest you ask them.

Rick

 

[Taysgrama]

The decision to replace and not repair was made weeks ago with my surgeon and not his nurse. He just thought I may have changed my mind. My husband and I have done all the research and the chances of having the aortic valve leak again and have to be either replaced or repaired is too high for me to take. I do not want to go through this surgery more than once unless it is positively necessary. I think it main issue was the coumadin part. He was not sure that I would want to be on it for the rest of my life. Like I told him, I already take 2 medications that I have been on for 15 years, adding another one will be easy and since I already have to take the others forever, one more is not going to matter!