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Old 07-01-2009, 12:41 PM   #1
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Question Help! 40 yrs dilated descending aorta 5cm and no insurance

I just got diagnosed with a dilated descending aorta. The aneurysm is at 5 cm and they want to do stent graft replacement surgery. I need advice/help on several issues here. First, here's a background on me and my case:

MY HEALTH STATS:
The doctors can't figure out why I have this. They all look at me with question marks in their eyes. I DO NOT have Marfan's syndrome. No one in my family has it. No one in my family has had any heart related health issues ever. No history of heart attack or cardiac arrest. Most of my family have died from cancer. I'm 5'8" and 125 lbs (thin and slightly muscular) I'm half Japanese. My blood pressure is 115/69. I work out 2-3 times a week without lots of cardio (mostly do yoga and isometric exercises). I recently quit smoking (but when I did smoke a pack would last almost a week so approximately 3 cigarettes a day). I smoked from age 18 until now, several times quitting for several years at a time, so I guestimate that I smoked for approximately 15 years. I own a business since 1996 and it has been a huge source of stress for me at times a major disappointment as I become close to my "employees" and suffer heart break when some leave on bad terms. I was diagnosed with a heart murmur at around nine years of age. The doctors said then that it was mild and wouldn't cause any long term effects. Most of the doctors who listened to my heart recently said they couldn't even hear it.

MY PERSONAL RECENT HISTORY:
I just came out of the most traumatic and stressful 6 months of my life. I had a very, very disappointing break up with someone I was with for seven years. My mother has been in and out of the hospital for various brain surgeries, I moved my business and worked like a dog 12 hours a day every day for 8 weeks straight, right through Christmas, New Years and my birthday to remodel the new space. Three of my employees quit at once (for different reasons) and left me with a staff of 50% of what it should be. I became extremely depressed and started having chest pains in February 2009. I became suicidal and felt totally hopeless because the man I thought I would have children with left me after seven years for two younger women. It was only after I realized my closest friends cared so much for me and needed me in their lives, that I cleaned myself up, quit drinking and quit smoking in March 2009 and found an old friend I've known for 14 years, was in love with me and wants to start a family with me.

The chest pains were about one inch left of the center of my sternum between my 4th & 5th ribs. It was a dull throbbing ache that pulsed with each heart beat. Nothing sharp about it. They never moved and never radiated. Sometimes I had back pain between my shoulder blades from poor posture while standing for long periods of time. Sometimes it was difficult to sleep or lay down on my left side, but I mostly sleep on my back anyway. It seemed the pains went away after deep breathing (I tend to "hold my breath" when I'm thinking a lot or stressed). I noticed the pain more when I had been standing for long periods of time. I do have slight scoliosis curvature in that area.

At the end of March, I began to see acupuncturists for fertility treatments, and told them about the heart/chest pains. They gave me herbs which helped immensely.

MY DIAGNOSIS:
In April 2009 I got a chest x-ray at a clinic because my TB skin test was questionable. I got the TB test because the state of Hawaii requires a TB test for their Tattoo License. I did not have any cough. (I am a tattoo artist of 15 years and was applying for the Hawaii State Tattoo License) The x-ray ruled out TB, but showed a dilated descending aorta. 6 weeks went by, no one contacted me. On June 3rd, someone contacted me and referred me to a hospital. Three doctors listened to my heart via stethoscope they couldn't do the CT scan then, because I might have been pregnant. The three doctors said that it didn't sound so bad and we could wait two weeks to see if I was pregnant or not to order the tests. and I got a CT scan on June 18, 2009 which showed the aneurysm in the descending aorta. The GP said it was 5.6 cm. I needed to come back for a CT scan the next day. They only scanned the thorax area, but the surgeon needed a scan down to the pelvis, so the scheduled another scan for June 22nd. After the surgeon reviewed the scan, he said the aneurysm is at 5 cm. He recommended stent graft replacement. I'm afraid of surgery, since it is a "young" procedure only being around for 20 years, and I plan to live another 40 years minimum. I don't know how long these stents can last in the body. I also don't have insurance and the $30,000 or so will break me financially. (wouldn't that add more stress?)

SELF-RESEARCH:
I want to get a second opinon asap. But I smell something fishy already. If it's so crucial I get surgery now, why are they now making me wait ten days to get my results from the second CT scan (when they got the results from the first one in less than 4 hours?) So they're telling me it's really dangerous, but not so dangerous for me to stay in the hospital? I started doing my own research and found a few bits of information out. I do want a second and maybe third opinion. Here's what I've found out so far, via google....

1. Yale published a paper that followed 3000 people with dilated aortas and found that the "hinge point" for the descending aorta is 7 cm. They recommend surgery before the descending aorta gets to 6 cm. Here's the link:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2605304

2. I found a message board with people with aortic aneurysms who are taking Losortan (a BP medication - I think it's a beta blocker) which has been shown to have the nice "side effect" of shrinking the diameter of the dilated aorta. Does anyone have any information on this. I asked the surgeon and he said it was a BP medication and ignored my question about it shrinking the diameter of the aorta.

3. Also found a med called Propranolol anyone know of or seen this in use?

MY QUESTIONS
I have a lot of questions, and hope that some "experts" here can help me fine tune getting a second opinion and what my potential possibilities are. So, please bear with me.

Please keep in mind that my first priority is to make my heart healthy enough to sustain a pregnancy as soon as possible. I'm 40 and would like to have one child as soon as I can.

1. Will drugs like Losartan help reduce the aortic size? How long will it take for reduction if I'm vigilant on reducing stress and improving my exercise habits and diet?

2. How quickly will this aneurysm grow? How quickly can it shrink?

3. Can it shrink on it's own? Or is it once the walls of the aorta are stretched, they never return to "normal" sizes.

4. I can't find information on pregnancy with dilated aortas WITHOUT Marfan's syndrome... does anyone have any statistics of pregnancy results for non-Marfan's patients who have dilated aortas?

5. What's causing my aneurysm? Especially if my risk factors for heart disease are basically nil.

6. Any other types of treatments out there that are non-invasive like surgery? Are there herbs, or life style changes I can make to get my aortic diameter to a "healthy" level for pregnancy?

7. Can I pass this onto my child?

8. Should I give up hopes on pregnancy?

9. What are my chances of aortic dissection?

10. What are the success rates of stent graft surgery? (can't find these online).

11. What are the chances of risks or complications from stent graft surgery.
(the surgeon told me some, but I feel they may gloss over some information in order for me to just get the surgery done.

12. What is the average cost of stent graft surgery? (One friend of mine had it and it cost him $30,000 the hospital I'm at won't give me a definite answer and this is frustrating me). Everyone says, "I don't handle the money part..." but I have no insurance (was in the middle of applying for insurance for my pregnancy but now afraid no one will insure me).

13. Is it realistic to think that meds and lifestyle changes can reduce this dilation?

14. Can taking beta-blocker meds like Losortan or Propanolol mess me up if I don't have high blood pressure?

15. Does anyone know of other meds that can shrink a dilated aorta and is safe for someone planning to conceive?

16. What are the dangers of traveling with an aneurysm of 5cm. My boyfriend lives in Thailand and I had to cancel my trip for the 23rd to deal with doctor's appointments. I miss him and have a very relaxing lifestyle there, much more than here in Los Angeles. Can I travel to see him before surgery? It is around 20-27 hours of travel time to get to Thailand. I travel well, and do not stress on being on flights.

17. If I get the surgery, what are travel restrictions for after surgical stent graft?


I know there are a lot of questions here. Even if you don't have the answers to all of them, please answer what you can. I appreciate it so much! Thank you!

Last edited by ETStanley; 07-01-2009 at 12:59 PM. Reason: add more detail

 
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Old 07-02-2009, 05:08 AM   #2
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

Quote:
Originally Posted by ETStanley View Post
I just got diagnosed with a dilated descending aorta. The aneurysm is at 5 cm and they want to do stent graft replacement surgery.
What is your confidence in the accuracy of their measurement?

Quote:
My blood pressure is 115/69.
Blood pressure varies from hour to hour, and from day to day. BP usually is lowest during the morning and then increases throughout the day, and then gets lower during the evening.

Do you know the daily range of your blood pressure? With a dilated descending aorta, you would want healthy blood pressure levels 24 hours around the clock.

Quote:
I will get the results of my CT scan tomorrow and want to meet with one or two cardiologists asap with my reports.

I need advice/help on whether or not my condition will allow for a normal pregnancy. Whether or not medications such as Losortan or Propranolol could help.

If anyone has a recommendation, please help. Thanks in advance! I appreciate it!
Healthboard members, like myself, have no professional medical training, experience or education, so we can only respond from personal experience.

That said, I hope that you are able to locate the best, competent Cardiologists that you can find, and, with luck, perhaps their interpretation of your Aorta problem might not be as bad as previously diagnosed.

Best of luck!
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Old 07-02-2009, 06:14 AM   #3
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

My husband has this. He has been living with a 4.7 cm aorta for the last 15 years. He has been on toprol---only 25 mg, because he doesn't have high blood pressure.

Losartan is being studied. You should be on a beta blocker---why not try that one??? Maybe it WILL turn out it really does shrink the aorta.

Pregnancy usually increases the diameter. Please use birth control until you get insurance!!

This probably is a connective tissue disorder. There are people who just have enlarged aortas without marfan. But, if you have questions, the marfan association will help you.

We travel all over, but it does make me nervous!! What's most important is the stability of your aorta. If it grows more than .3cm in a year, it's important to have the surgery ASAP.

Hope this helps. Any more questions---I will keep checking this site! I didn't really care about Obama's health plan---but for your sake, I hope it becomes a reality. You must get insurance!! You will become bankrupt otherwise.

 
Old 07-02-2009, 04:43 PM   #4
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

I cannot get insurance now. No one will insure me with this as a pre-existing condition. I was in the middle of applying for two different health insurance policies, until this was sprung upon me. Trust me, I was trying to get insurance before I got pregnant. Even though I pay 4 times the taxes as the average individual, I did not want to "rape" the system. I was trying. Now I'm screwed. I can't even get MediCal because I'm not pregnant, have no children and am under the age of 65. I'm totally screwed. I need references to a cardiologist that will allow me to pay out of my own pocket. But most doctors won't even see me because I don't have insurance.

I just got news that my surgery will be approximately $112,000

Nice.

If anyone can please help, I'd appreciate it. Thanks for the replies!!!!

 
Old 07-02-2009, 10:54 PM   #5
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

Hi Machaon!

Thanks for your input... today my BP was 130/60 (right arm) and 130/70 (left arm) at approximately noon. The previous BP was taken around 7 PM.

The measurement of my descending aorta is now confirmed at 5.1 cm via my CT scan. Previous "estimate" was between 5.0-5.6 cm, but that was an estimate.

I'm hoping someone has an idea about how I can get a second opinion and get treatment with meds like Losartan.

I found an intriguing article published by Yale that recommends surgery for the descending aorta to happen before it reaches 6.5 cm (which buys me a bit of time to try Losartan to shrink it)

Here's the article:
http://www.uptodate.com/patients/content/abstract.do?topicKey=~DE8E81I452juyjT&re fNum=15

Some other sites mention surgical intervention at 6 cm for the descending aorta. Why are they pushing me to get surgery at 5.1 cm? Can't I try drugs instead?

Does anyone have ideas on who can lend me an ear and let me try getting prescribed Losartan? Thanks again!

 
Old 07-03-2009, 12:03 AM   #6
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

Quote:
Originally Posted by ETStanley View Post
Hi Machaon!

Thanks for your input... today my BP was 130/60 (right arm) and 130/70 (left arm) at approximately noon. The previous BP was taken around 7 PM.
Those two readings aren't too bad, especially the second number (Diastolic), which is the "constant" pressure between pumping.

I still wonder if, at some times, there might be higher readings or peaks, as a contributing factor to the dilation of your descending aorta?

How about the beating of your heart? Ever notice your heart racing, or thumping, or skipping beats?

Any immune system problems, or nasty allergic reactions?

Just kinda thinking out loud............

Quote:
The measurement of my descending aorta is now confirmed at 5.1 cm via my CT scan. Previous "estimate" was between 5.0-5.6 cm, but that was an estimate.

...


I found an intriguing article published by Yale that recommends surgery for the descending aorta to happen before it reaches 6.5 cm (which buys me a bit of time to try Losartan to shrink it)
Are you then thinking that, because of your financial and insurance situation, you would accept the health risks and delay surgical intervention, get on some kind of medication, and then check it again in another six months to a year, to determine either a progression or improvement in your Aorta?

Quote:
I'm hoping someone has an idea about how I can get a second opinion and get treatment with meds like Losartan.
When I look up Dilated Descending Aorta, I see many articles recommending beta blockers, which slow the heart, and reduce the force of the heart, and lower the blood pressure. Your blood pressure, according to the few measurements so far, trends fairly healthy. A Beta Blocker, or an Angiotensin II Receptor Blocker like Losartan, would lower the blood pressure even more, and could cause problems with light-headedness, fainting, etc..

I've got Heart Failure, which, in my case, means I suffer from a significantly dilated Left Atrium and a mildly dilated Left Ventricle. My Aorta is fine.

In my research I have found that the most effective medication for helping to rebuild the heart, and reduce dilation of the heart, and improve heart disease, is the Beta Blocker Coreg (Carvedilol). It is one of the most tested heart medications made, and it has all kinds of beneficial actions. And....... it is available as a cheap generic, for $10 for a three months supply, without insurance. For me, it is truly great stuff and has made a big difference!

You might want to look into Beta Blockers and Dilated Aortas.

Beta Blockers, like Carvedilol, block the action of the adrenal glands and often cause side effects like tireness and lack of energy, among others. If I were trying something like Carvedilol for the first time, I would try a very low dose, like 3.125mg, once every other day, just to see how well I tolerated it. In fact, in my case, I have been playing around with the dosage for the past year, and I hope I have finally found the dose ( 18.75mg per day), that is most effective for me, and that I can tolerate.

Quote:
Some other sites mention surgical intervention at 6 cm for the descending aorta. Why are they pushing me to get surgery at 5.1 cm? Can't I try drugs instead?
Could be more a decision that is based partly on health and partly on business.

Best of luck and health to you. I hope that things work out well for you.

Take care................
__________________
CHF, A-fib, HBP, Insulin Resist & Asthma much better

⇒ I avoid common ordinary but unhealthy household items
⇒ Balanced, healthy diet
⇒ Exercise
⇒ I alter my Circadian Rhythm
⇒ I LOVE COREG!

Last edited by Machaon; 07-03-2009 at 12:10 AM.

 
Old 07-04-2009, 03:35 PM   #7
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

I have put your comments in italics, since I can't figure out how to divide your comments from mine...

I still wonder if, at some times, there might be higher readings or peaks, as a contributing factor to the dilation of your descending aorta?


I'm not sure of that as I don't have the means to take my blood pressure on a regular basis, but I will now try to take note of it during different times of the day. But I'll have to go to the local drug store to use their machine.

How about the beating of your heart? Ever notice your heart racing, or thumping, or skipping beats?


My resting heart rate is usually around 65-70 beats per minute. I do notice some "spikes" when I'm awake late at night or exposed to stressful situations usually my heart rate goes up to around 80-95 bpm. I've never noticed it higher. Now that I know I have an aneurysm, I check it when I feel stressed.


Any immune system problems, or nasty allergic reactions?


NONE! The doctors are mystified by my problem as well.


Are you then thinking that, because of your financial and insurance situation, you would accept the health risks and delay surgical intervention, get on some kind of medication, and then check it again in another six months to a year, to determine either a progression or improvement in your Aorta?



Yes, but in my research it seems that a dissection in the descending aorta (type b dissection) is more rare than in the ascending aorta (type a dissection). Also a paper published by Yale called: "Thoracic Aortic Aneurysm: Reading the Enemy’s Playbook" which I linked to in my initial post... I'll link again here:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2605304

It follows a database of 3000 patients with dilated aortas or aneurysms and found that a "hinge point" for aortic dissection is at 7 cm (again, I'm at 5.1) and the "average" growth rate is 1mm per year (if I'm average, then this would mean I have a lot of years before my likelihood of complications jumps three times). The odd thing is that the statistics show that at 5.1 cm, I'm LESS LIKELY TO HAVE "LIFETIME NATURAL HISTORY COMPLICATIONS" THAN SOMEONE BETWEEN 3.5 - 4.25 CM! And that my chances of dissection, death or rupture only double at greater than 6 cm. These findings also prompt this study to cite recommendations of elective surgery to be performed before the descending aorta gets to a diameter of 6.5 cm. Now, I'm not saying this is true of everyone, but seeing as I don't have a lot of risk factors, and I'm relatively young and healthy otherwise, I've got a little bit of time to "play" with by trying meds. At this point in the game, according to this report, my chances of complications in surgery double the chances of complications without surgery. And if in the meantime, I can intervene with drugs and other avenues, and get to a point where I can have health insurance (at whatever inflated rate they decide is "fair" - interject sarcasm here.) THEN I will opt for surgery. Or, if my case decides to be abnormal and dilate at an increased rate, (I will not wait for 6.5 cm) I will consider surgery at 5.7 cm.


When I look up Dilated Descending Aorta, I see many articles recommending beta blockers, which slow the heart, and reduce the force of the heart, and lower the blood pressure. Your blood pressure, according to the few measurements so far, trends fairly healthy. A Beta Blocker, or an Angiotensin II Receptor Blocker like Losartan, would lower the blood pressure even more, and could cause problems with light-headedness, fainting, etc..
In my research I have found that the most effective medication for helping to rebuild the heart, and reduce dilation of the heart, and improve heart disease, is the Beta Blocker Coreg (Carvedilol). It is one of the most tested heart medications made, and it has all kinds of beneficial actions. And....... it is available as a cheap generic, for $10 for a three months supply, without insurance. For me, it is truly great stuff and has made a big difference!

You might want to look into Beta Blockers and Dilated Aortas.

Beta Blockers, like Carvedilol, block the action of the adrenal glands and often cause side effects like tireness and lack of energy, among others. If I were trying something like Carvedilol for the first time, I would try a very low dose, like 3.125mg, once every other day, just to see how well I tolerated it. In fact, in my case, I have been playing around with the dosage for the past year, and I hope I have finally found the dose ( 18.75mg per day), that is most effective for me, and that I can tolerate.


I took your research a bit further (and thank you so much for this suggestion!) and found that beta blockers don't do much for aortic aneurysm reduction... the key set of medications I should be considering are "angiotensin-receptor blockers" or ARBs. These are medications such as Lorsatan, valsartan, irbesartan and candesartan (I guess drugs that end with "sartan")

Here's an interesting article on ARBs:

http://www.medpagetoday.com/Cardiology/Prevention/9934

I looked into Carvedilol and couldn't find any correlation to aorta diameter, although it's probably great to reduce the amount of lipids deposited in my aorta.


Could be more a decision that is based partly on health and partly on business.

Best of luck and health to you. I hope that things work out well for you.


Yes, I couldn't agree more. I have a suspicion that not only are they trying to drum up a bit of business from me, but also they are involved in a new trial by Medtronic (the supplier of the stent) and could have a vested interest in "using" me as a paying guinea pig. Not to mention, that because of my relatively good health otherwise, they may want to include my case in the trial to show the 'success' of the device.

At this rate, as I said, my risks of surgery double the risks of leaving it alone. I don't want to leave it alone, I'd like to try the angiotensin-receptor blockers and check back with another CT scan in a few months to see if this has any promise for reducing the size of my aneurysm. Wish me luck that I can find a cardiologist or cardiothoracic specialist who is open minded enough to give this a try.

Take Care and thanks for the well-wishing! I need it!

 
Old 07-05-2009, 05:19 PM   #8
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Re: Help! 40 yrs dilated descending aorta 5cm and no insurance

I am also uninsurable because of a pre-existing medical condition (high blood pressure and arrhythmia). I've been getting medical treatment from Harbor UCLA medical Center in Carson, CA, where they have low cost health care available to uninsured patients. For routine clinic visits they charge a reduced fee of $80 per a visit and this includes any diagnostic tests (blood, CT, EKG, etc) the doctor might want to run.

I am not sure how they do services like surgery for uninsured patients, but I believe that you are assigned a social worker and you must bring in your financial information and they will work out how much you can afford to pay.

The information can be found here:
http://www.ladhs.org/wps/portal/Patient

Also California offers a high risk insurance pool for people who cannot normally be insured. Its pretty expensive with high deductibles, the monthy premiums run from $500-1000+. Also there is a huge waiting list to get in and benefits are limited to $75,000 a year which would not even cover the cost of your surgery. After 3 years in the program you are then offered guaranteed coverage insurance where your yearly benefits are increased to $200,000.

I've read that California's high risk insurance plan is pretty weak compared to other states, since this is a life threatening condition you might want to consider getting resident status in another state and applying for their high risk pool, here is the full list of states that offer high risk insurance:

http://www.cobrahealth.com/statehighriskpools.html

Another option (short of moving to Canada) is to become a full time student in order to take advantage of the school's health insurance, as many school's insurance plans do not have pre-existing condition clauses.

Last edited by ofacto; 07-05-2009 at 05:40 PM.

 
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