Can't have surgery

[pearl]

I need some information about the alternatives to valve replacement. My mother is not a candidate because of her numerous surgeries and dialysis. Does anyone know where she can receive other types of treatment? Is there anyone in the New York area who you can suggest. thank you. Her aorta value is severely narrowed.

 

[Nancy]

Any chance she could go to Cleveland Clinic and get their opinion on her situation. Usually, if a valve needs replacement, then it needs to be done.

Cleveland Clinic is probably the best place in the country and possibly the world for people with severe problems. Sounds like that's where she needs to be.

There isn't any other permanent treatment that I know of.

And welcome to this terrific site. Lots of wonderful people here.

 

[pearl]

reply

reply

thank you. Where is this Cleveland Clinic? And who is the best to see there.
thank you again.

 

[Nancy]

The CC Heart Center:
http://www.clevelandclinic.org/heartcenter/

The top surgeon:
http://www.clevelandclinic.org/hear...d1=&keyword2=&specialty=Cardiac+Surgery&cnt=2

 

[Kathy]

Pearl,

My surgery was done at the Cleveland Clinic. My roomate was 86 years old and had been told by her local cardiologist that she was not a candidate for surgery. There was another man from NJ on our unit who had been told the same thing. They both had successful surgeries.

I travel to NY frequently and travel through Cleveland. I believe it is an eight hour drive from NYC and about a five hour drive from Rochester.

 

[pearl]

In response

In response

My mother is in a very difficult situation. She is a diaylsis patient, breast cancer survivior, and numerous other surgeries, diseases, macular eye disease and a stoke in her left hand. I believe more surgery would be fatal.

I am looking to find alternatives to this surgery. I am sure there are other people who are in her situation and can't have value replacement surgery?

Thank you for your response.
Glenda ( Pearl's daughter)

 

[Ross]

I only wish there were another way, but when it comes to valves, there is no alternative. If I were you, I'd get a consult from a High Risk Cardiothoracic surgeon and see what his position on the matter would be. As Nancy pointed out, The Cleveland Clinic would likely be your best bet. Your between a rock and a hard spot. I'm sorry I don't have any good news to deliver. Please let us know what you decide and do.

http://www.clevelandclinic.org/heartcenter/pub/appointment/make/default.asp

 

[pearl]

Mother is not a candidate for surgery

Mother is not a candidate for surgery

We went to a top surgeon at Columbia Presp Hospital who stated that surgery for my mother would not really be advisable. She has to many other illnessess-- she probably would not survivie the surgery.

So, with that news, her time is limited. I need to find a cardiologist who will treat my mother with medication. Who will help her when the breathing attacks occur, and will do whatever possible to extend her life as long as possible without pain and suffering.

Other than this heart problem, she is a vibrant 76 year old and truly a survivior. We need to find a Doctor who is willing to treat her.

Any suggestions? Of course, it must be within the radius of the East. With her 4 dialysis 4 times a week, it makes it difficult to travel.

Thank you all for your help
Glenda

 

[pearl]

another thought

another thought

Spoke to her about traveling by car to the Cleveland Clinic if that is the best place.We would go by car if necessary. But, surgery is definitly not an option with her muliple diseases and illnessess.

Any suggestions about a Doctor that can help.
Thank you
Glenda

 

[Ross]

Glenda I sympathize with you here. I don't think I'd throw in the towel until the best of the best told me the same thing. In her condition, they may, but I'm in no position to guess at theirs. I'm guessing that because of renal failure, they don't want to chance it, but if it were my mother, I'd try all avenues first.

Outside of Cleveland, please call 800/223-2273 and ask for extension 46697. Please call this number and speak to someone and see if they cannot help in anyway.

Should they not be able to help, there should be very good Cardiologists nearby to you. You certainly wouldn't want one far away given her current condition. You may have to do a lot of shopping, but I'm sure someone competent can be found.

Let us know how it goes.

 

[KathyH]

Hi, Sorry to hear about your Moms health issues. Maybe you could contact someone at the Cleveland Clinic and send her records there for them to review. That way she wouldn't have to travel as I know how difficult it can be to travel with someone on dialysis. Afriend of mine's mother had to make a trip and they had to plan months in advance so she could get her dialysis while she was away.
They may be able to make some suggestions to her local cardiologist. Provided that your local Dr is responsive to this. I would think they would understand that you are trying to do the best for your Mom. Good Luck... and oh, Welcome to this great site.
KathyH

 

[bvdr]

Pearl,

I don't know of anything other than surgery. Medications might manage some of the heart failure and other problems that accompany valve problems but the only fix is surgery.

There are some less invasive methods that are being used on selected aortic valve patients. I don't know if your mom would be a candidate or not. It is her choice if she wants to try being a survivor one more time.

I hope everything works out for you and your mom. Life is fragile, handle with prayer.

 

[pearl]

in reponse

in reponse

Thank you for all your responses. I will contact the Cleveland Clinic. Maybe they have Doctors that treat people in my mother's situation. And yes, sending the records is a good thing, the trip could be too much for her. Because of her multiple illnessess you would not survive the surgery. There must be some medications out there that will make it easier to breath when they breathing attacks occur. I understand that the "cure" is surgery, but that surgery she can not have. I wil keep you posted.
And thank you
glenda

 

[MelissaM]

Hi Glenda,

Sorry to hear that your mother is dealing with such complicated issues. My mother was also on dialysis with numerous issues including heart issues. At the end of her life, she chose to end dialysis rather than continue to fight an uphill battle to retain diminishing quality of life. For her, I believe, it was the right thing to do. We had the privilege of spending our last days together, had the priviledge of saying goodbye on our own time and the knowledge that letting her go set her free from the bondage of her bodily limitations. Hospice was great in helping with the transition from life into death. If your mother wants to be made comfortable as she nears her twilight, find a doctor that will do it. If she has a prognosis of less than six months, then you might consider contacting hospice. Best wishes to you and your mom.

Melissa

 

[pearl]

in response

in response

Thank you for your honest and direct response. However, her prognosis is not less than 6 months. Did your mother have value replacement? Was the Doctor at Cleveland? I am looking for a Doctor who has dealt with patients who are not able to have surgery. Do you think that Cleveland Clinic is the place to call? From the other responses, people say it it is the best in the country. What is your experience? Thank you, Glenda

 

[bvdr]

Pearl, I guess the bottom line is that most of us would not accept that she couldn't have surgery until she was told that by one of the very best surgeons in this field. Is it a matter of" she doesn't think she can" or "doesn't choose to" rather tjan she actually can't?

Is your mom bedridden?

 

[MelissaM]

Glad to hear that your mom still has fight in her. Give CCF a call - yes, they are known for taking the hard cases and are known for working miracles where others cannot.

 

[dawnwit15]

NY

NY

Pearl
you said you are looking for someone in the NY area and you tried one of the top docs at NY Presbyterian. By any chance was it Dr. Mehmet Oz? He just did a valve repair on me in 1/04. If your mother has not had the opportunity to get a consultation with him yet, I highly recommend him.
Dr. Oz actually opened me up and cut out all the scar tissue to rid of the stenosis in my mitral valve. I was initially scheduled for a repair, but once he opened me up, he felt this was a better resolution to the problem. My valve was 1.9 cm and is now 6.9cm open. I truly trust his judgement.
If you cannot find what your looking for in NY, how about University of Pennsylvania Hospital?
Please keep us updated here. Best of luck.
Dawnwit15

 

[pearl]

in response

in response

No, it was not Dr. Oz but Dr. Craig Smith. I believe they are in the same office. I have read Dr. Oz's book. Interesting. I am aware of the alternatives he speaks of.

Again, because of her mulitple illnesses, she is not a candidate for this kind of surgery. She would not make it. It has been said to her more than once.

I will consult the Cleveland Instuite. Hopefully, they will have some ideas. And no she is not bedridden. She is an incredibly strong, very educated, brilliant, sensitive woman-- determined and more.....

Thank you all for your help.
Glenda (Pearl's daughter)

 

[pearl]

Another site for help???

Another site for help???

I guess I am in the wrong site. This site is for people who CAN have surgery. There must be another place where there are people who have lived with this condition and can not have surgery due to their multiple illnesses. They must be researching alternatives, places, foods and doctors all over the country and in europe.

Please direct me to these people or these sites for help.

Thank you
Glenda
(Pearl's daughter)

I am looking into the Cleveland Clinic. But for second opionins through the mail, medicare does not pay. My mother is on a very fixed income. She does not have the money.

Does any one know of a grant or funding to help in these cases?