Cleveland Clinic

[kjack12046]

My brother had a dissected aorta and emergency surgery 4 years ago almost to the day. He was scheduled for further surgery this past Tuesday, but they cancelled it at the last minute due to the blood test for HIT (Heparin-induced thrombocytepenia) was too high and they were not willing to operate due to probable fatal results.

His hematologist has told him that he probably should go to the Cleveland Clinic to have surgery done.

The surgery scheduled was for an redo aortic root, and I believe a possible replacement valve. It is complicated with a bacteremia infection, which has caused endocarditis.

My question is this. He and his wife are thoroughly worn out at this point with all the different direction they are getting, and quite frankly, are financially stripped. I am hoping they choose to go to the Cleveland Clinic, but would like to hear anybody's experience with them so I can relay the messages to them that they should go.

They have been told that there are not many hospitals that would be willing to do surgery on him due to the fact that he is allergic to Heparin because he would most likely fail. I know there are synthetic Heparin substitutes out there, but believe that the CC would be the place to go for him.

Can anybody please weigh in on this and give me some opinions? I would really appreciate it.

 

[Phyllis]

It's late and you may have to wait until tomorrow, but I am sure you will hear from many satisfied Cleveland Clinic survivors here. They are the best and I would urge your brother to go there for an opinion. If you go to their site, http://www.clevelandclinic.org/heartcenter/, you will find an area where you can arrange to have a second opinion for a fee. In the meantime, I hope this helps.

 

[kjack12046]

Thank you for the help. I will keep watching tomorrow.

 

[ALCapshaw2]

The Cleveland Clinic is the #1 Rated Heart Hospital so that is the place for COMPLEX cases. Their on-line second opinion service may be a good way to start.

Another option (since you are in Michigan) is Beaumont Hospital in Royal Oak. Someone said they actually perform more Heart Surgeries than Cleveland Clinic. I'd want to verify that, but I see they were rated above U of M for Heart Surgery

Your brother will DEFINITELY want to find a Surgeon who has EXPERIENCE with his issues.

Good luck !

'AL Capshaw'

 

[Marty]

I usually advocate staying as close to home as possible. However, in such a complicated case I would recommend Cleveland. Social workers there may be able to help with the finances. Good luck.

 

[kjack12046]

His first surgery was at Beaumont Royal Oak, but his surgeon mainly practices out of Troy Beaumont now and would do the surgery there, but would do no follow-up after surgery. It would be assigned to someone else post-surgery. The surgeon is the one who cancelled the surgery, so I'm not sure Royal Oak Beaumont will even do it at this point. I can't imagine if the surgeon from Troy refused that he would be willing to do it through Royal oak?

Thanks for the idea though. We are currently looking into that idea as well.

 

[Lynlw]

Hi I'm sorry your brother is going thru this. I would also make a post w/HIT info neededas the subject.People that know about HIT and meds might offer some advice, but missed this post about CC,
I know Janet's little daughter Katie has a problem w/HIT,so probably has been doing lots of research. Katie has her surgery at U of M (but hasn't needed any since the HIT)so maybe that is a possibility since finances are tight, it could be worth looking into.
I can't helpwith financial for medical ect, BUt IF theyhave totravel,I think I still have links for alot of Angel flight type groups that will fly patients and some familymembers for free for medicalreasons.
Al Lodiwck our resident anticoag expert may also have some info that could help about the HIT .
I do agree that he needs to go very a expereinced center.
Lyn

 

[Ross]

I would have no trouble at all recommending the Cleveland Clinic. I don't think there is anything that they haven't dealt with before. You have the best surgeons, the best facility for the job etc. They are #1 for a reason.

 

[John & Joann]

Joann would NEVER go anywhere except Cleveland Clinic. They are the BEST!

You will not go wrong with any of the surgeons or cardiologists. We are most pleased.

The facility is very large and can overwhelm someone who has never been in a large medical facility. I would also recommend staying at one of the motel/hotel facilities on the campus.

Let us know how we can help.

John & Joann

 

[Turkey Hunter]

Joann would NEVER go anywhere except Cleveland Clinic. They are the BEST!

You will not go wrong with any of the surgeons or cardiologists. We are most pleased.

The facility is very large and can overwhelm someone who has never been in a large medical facility. I would also recommend staying at one of the motel/hotel facilities on the campus.

Let us know how we can help.

John & Joann

Ditto. No where but CCF for me.

Ben