Urgent: Treatment of severe aortic stenosis and pulmonary embolism

My mom, age 78, has been diagnosed with multiple issues, including a pulmonary embolism, severe aortic stenosis, cardiomyopathy, thoracic aneurism and some blockage of her carotid artery. I am visiting her in Michigan from Chicago, where I have been the full time caregiver for my fiance Dino for a number of months. (Dino, age 50, was diagnosed with stage IV lung cancer Dec. 7, 2010, with 15 cm tumor in left lung, invasion of ribs, mets to brain,spine, lymph nodes and soft tissue of arm). I have found great support and information from the Lung Cancer group at Inspire and now, I am here in Heart Disease. As you can imagine, I am a wreck.

My mom has had a series of incompetent doctors and I am here to find her a team at U of M. We thought she needed a valve replacement, and that the minimally-invasive procedure that is somewhat new but not uncommonly performed would be the best course of treatment. I attended a visit with mom and her cardiologist. He said it could not be determined which treatment would be best without a TEE and a heart catheterization, neither of which could be done while she was on Coumaden for the pulmonary embolism. We asked how they would know when the pulmonary embolism was gone and the cardio doc said there was no test, that they just disappear, ALWAYS. I asked how they found it in the first place if there is no test to measure its progress or continued existence. I asked about a CT scan. Doc said they do not do CT scans to check progress of clot. He was unaware that the hospital had already performed at least one CT scan. I am certain that he has not looked at her recent hospital records.
Mom has a persistent cough, unproductive but frequent. She has very weak legs, can hardly walk a half a block and has now developed severe shortness of breath. The cardiologist did not mention Mom's cough and we asked about it. He said, we do not know what that is. I think Mom needs to see a pulmonologist. I have zero confidence in this doctor. My sister and I asked for ALL of Mom's records and the receptionist was quite reluctant to do the work needed to copy them. It is only paper, since the doc has not looked at any films. I am really stunned. There is more but you get the picture.
I have been close to a nervous breakdown all day. Between my fiance's massive problems with stage IV lung cancer and side effects of treatment, have not been able to see my mom as much as I want to. On top of all of it, I am starting a new job next week. I am the only caregiver and HAVE NO CHOICE but to work full time. I don't want to lose my house or have to pull my son from college. I am losing my mind! I am an attorney at a big firm in Chicago and the new job will be demanding.
I have two sisters and a brother who live in Michigan in the same town as my mother. BAsed upon my experience with Dino's cancer and caregiving responsibilities, I have explained to the sibs what kind of records to keep, questions to ask, journal of notes, list of meds, update of symptoms, and supervision of every appointment mom has. They are doing the best they can and were even before my input. Mom cannot manage her treatment by herself. She cannot keep track of her meds. She is confused, afraid, and in denial.
We are trying to work together to put a file in place and gather mom's medical records. Sorry for the long email, but I desperately need help and will have to leave Michigan this week to go back to Chicago and prepare to start the new position. Some specific questions:
1. Mom's breathlessness and coughing. Shouldn't she be seeing a pulmonologist who specializes in the lungs? Mom's cardiologist signed her out of the hospital a couple of months ago. A pulmonologist stopped by and noticed that she was leaving. He was appalled that her coumaden level was under 2. He asked if she had had her shots. What shots? Finally, she got them (whatever they were, I was not there and sibs do not know).
2. The severe aortic stenosis. This worries me a great deal and seems to require immediate treatment. Mom's leg weakness is getting worse. So is her breathlessness. Is the valve issue causing this or something else? I asked the cardio doc and he did not know. Just said that the embolism was the biggest threat and no tests could be done on the heart until another month of coumadin.
3. Pulmonary embolism -- is it true that there is no way to tell if it is gone? I cannot believe the doc's promise that they "ALWAYS" dissolve at some point. And when, if it will? We need to get mom's valve replaced. And will the valve replacement help her cardiomyopathy (which by the way we only just heard about today).
4. MOST IMPORTANT: Does anyone have advice regarding how to assemble a top notch team of doctors, cardiologists, internist, pulmonologist, and so on, in the Detroit area and specifically affiliated with U of Mich? Any specific recommendations? Please help us.
Thank you so much.
Susan

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Susan -

I went on the U of Mich Hospital website and first looked for a pulmonary doc. There were a few who are primary care doctors but also are pulmonary specialists. Maybe getting one of them as the key doctor is the way to start and then let them gather the team. It seems that the embolism has to be #1 priority and perhaps that specialty should be the leader going forward. You need better answers about the embolism and when it will be gone (and how will they know). It also seems they will better be able to manage the coumadin - and most likely- the cough.

Good luck with this. . . I will keep you in my thoughts and prayers.

Annie

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I have a suggestion: Since you are now employed with a big law firm in Chicago, why not ask around the top partners about contacts they may have with local doctors who, in turn, may know top notch doctors in Detroit? If you're lucky maybe that may open a door for you so that your mother can be seen by a doctor who cares. Also, even though 78 is not old, relatively speaking, age may be a factor in framing the docrors' attitudes. Some doctors don't take old patients as seriously as they should. You will want to eliminate those off the bat. I had that experience in getting medical help for my father and for my mother-in-law. Remember the serenity prayer and also the old adage: don't let the bastards grind you down. Good luck.

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Annie and Wilbill,
Thank you. I am hoping the U of M team will help. I was with Mom for five days. She is getting worse. Cannot walk more than 10 steps without stopping to catch her breath. I hated to leave her. Afraid she will have a heart attack before we have a chance to consult a new team. I don't think she should be alone. Maybe she should go to emergency and be admitted. So today I came home to my fiance, who said that his insurance company has refused payment and is arguing pre-existing condition. He could not get his chemo today. No need to respond, just thinking out loud.

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Willadino-

Your plate is sooooo full. I feel for you and will keep you in my prayers. Take everything one day at a time, one minute at a time as you plow through.


Annie

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