Can someone help please......really need it again...

[Guest Julia59]

Hi everyone,

First of all I would like to Thank all of you who responded to this Man---(Steve)---who is struggling with some pretty scary issues---and has no family, job---and has lost his home. thank you so much LisaColumbus for you generous offer of getting a computer put together for him.

----I'm posting for Steve who is very ill with POTS---but has a more rare type with high blood pressure.

I had told you all about his Blood work---well now I have the actual values..

D-Dimer-----is 537-----means he can throw blood clots

Troponin-----is 0.69--------liver damage

Alt------------is 104--------indicates heart damage

catecholamines-------291 supine

1021 standing

He is on Wellbutrin, Neurontin, vicodin, nexium, toprol, norvak, lexapro, and Baer aspirin

As you can see by his blood work he should be admitted in a hospital-----this man is not stable.

He's had TIAs----and one which put him in the hospital for two weeks.

He has seen POTS doc at Cleveland Clinic who has not told him any test results. He has had to ask for his tests results or he would have never known. He saw a neurologist at the CC---as his POTS came directly after a head injury. There was an MRI done----and the neurologist said is was normal---so he couldn't help him. Yet this man has right side pain in his head, and gets really sick if he strains-----could be dangerous actually.

He made an appointment with Dr. Grubb -----but he can't get in until June. I want to give him my appointment in April, but he is a fist time patient-----mine is just follow up---so I don't think they will let him have my appointment, but i'm going to try anyway. His situation sounds so urgent-----i'm not sure he can wait until June.

And get this---to add insult to injury---his SSDI was denied---and his attorney said he needs to wait two years for a hearing-------------he lives alone---and has no family, how is he supposed to eat?

Has anyone cancelled an appointment with Dr. Grubb recently? Or is anyone about to cancel?

In you opinion----don't you think his blood values alone warrent an emergency situation?

I mean----wouldn't you think the neurologist would have a clue that if the guy vomits instantly when he shines a light in is eye that something is not right?

I know that most of you aren't medical professionals----but this just looks obvious that he needs better care then he is getting---AND QUICK!

Julie :0)

[gwen]

is he eligble for medicare? Can't the specialist see him or have him admitted? What about Catholic charities or some church based org? Sometimes the have drs who in "special cases" will admit. I would go to a church and see about assistance at this point. you may have to help, I hope you have the energy. I'll pray to st anthony and st jude.I'm sorry i'm too far away. Get a different Lawyer fo sure!!!!:-)

'

[Poohbear]

Julie,

I'm a bit confused. From what you post about his blood work, his D-dimer is within normal range (anything less than 552 is normal, his troponin is elevated but it's not considered positive until it is 0.99 or above.

His catecholamines are high upon standing which goes along with POTS.

I understand that he is sick but it doesn't appear he needs to be hospitalized based on his bloodwork.

Sounds like he definately has something going on and needs treatment but it doesn't sound like he needs to be hospitalized.

In terms of SSDI, as sad as it is, they don't care if you have no money or become homeless; they only look at "Can this individual work? Does his illness interefere with his ability to do work? and Do his records support this? And "Will this condition last more than a year or result in death" ...if they don't have the objective evidence to support his claim they deny it. It's is incredibly unfair how the system is set up but that is the reality. The best advice I could give you in this dept. would be to have him contact his local congressman and ask for help. I would also urge him to obtain all of his medical records himself to provide to Social Security and to request his Dr complete a functional capacity evaluation of him to submit to social security along with a letter from the Dr stating he is not expected to recover or be able to work for at least over a year.

Here is some additional info on a high ALT from a website

"WHAT CAN CAUSE THE LEVEL OF ALANINE AMINOTRANSFERASE TO BE TOO HIGH?

To begin with, since there are many reasons why ALT levels can be high it is important that additional testing is done to determine the exact cause. When an organ or body tissue is injured, increased levels of ALT are released into the blood. The greater the degree of tissue damage, the greater the degree of ALT that is released. When ALT is high, the most common cause is liver damage. The liver is the largest organ in the body and is responsible for filtering (removing) harmful chemical substances, producing important chemicals for the body, and other important functions. Long-term or sudden liver damage can cause a rise in ALT levels.

Damage to other areas such as the heart, muscles, lungs, pancreas (a long organ in the back of the belly) or the kidney, can cause the levels of ALT to increase. The kidneys are two organs located on each side of the spine, behind the stomach. The kidneys filter (remove) wastes from the blood. Inflammation of the heart can also cause high ALT levels. The ALT levels usually are only mildly increased after a heart attack.

If the ALT levels are very high (up to 50 times higher than the normal range), chances are that the cause is liver damage caused by viral hepatitis (an infection of the liver that causes liver inflammation), drugs, or chemicals. People with hepatitis may have ALT levels that are 20 to 50 times higher than the normal level. However, patients with tumors (types of abnormal tissue) of the liver or cirrhosis (a type of disease that destroys the liver) usually only have ALT levels that are 2 to 4 times the normal level. People that have mononucleosis may have high ALT levels. Mononucleosis is an abnormal increase in a type of white blood cell in the blood. A cell is the smallest, most basic unit of life, that is capable of existing by itself. White blood cells help the body fight against infections.

People who abuse alcohol may have mild to moderately increased ALT levels. In addition, high levels of ALT can also happen when people drink to much alcohol and take acetaminophen. Acetaminophen is a substance that fights against fevers and infections. An example of a medication that contains acetaminophen is Tylenol. Taking narcotics can also cause ALT levels to be high. Narcotics are types of substances or drugs that relieve pain and cause feelings of pleasure. Medications that can cause liver damage may also lead to raised ALT levels. Such medications include heparin (a blood thinning medication), tetracycline (a type of medication that fights infections), and metyhldpopa (a medication used to treat high blood pressure).

Severe burns, shock, and polymyositis can cause high ALT levels. Polymyositis is an inflammation of many muscles, and is usually accompanied by deformity, abnormal fluid buildup in tissues, difficulty sleeping, tension, sweating, and pain. Dermatomyositis, which a disease that causes destruction of muscle tissue, can also raise ALT levels. Rapid growth can cause mildly increased ALT levels, especially in pregnant women and young children. High ALT levels can be caused by seizures (sudden, violent, involuntary muscle movements). A type of infectious virus known as Epstein-Barr virus can also cause high levels of ALT. "

Medicare, food stamps should be options for him. Also, call your local United Way and ask what services are available in his area that could assist him. The Salvation Army is also a good resource to call.

[Guest Julia59]

Thanks Poohbear,

I'm glad the D-dimer is within normal range----he thought the results were high----I think he compared them to the reference range. He may be confused, as he has had no one explain any of this to him.

His heart and arota are enlarged. His blood pressure is 140/95----average-----that is the lowest they can get it right now. It just doesn't sound like he is getting the right treatment at all.

I was thinking about writing to his congressman-----Michael G. Oxley ® regarding the SSDI----but not sure how far I will get.

I want to talk with him before I do anything on his behalf though.

He said he is getting medical care---(medicare)---------but has been denied SSDI benefits. This man is not able to work---he is too weak to pick up a 6 pack of pop. He has worked since he was 15---so that makes it about 25 years of continuous employment. He can't lift his arms over his head without throwing up----and he also had right sided weakness/numbness since his TIA. He said he vomits about 3 times a day on average. They should be running more tests.

I have no idea what the blood work means other then he though it was abnormally high.

I'm concerned about possible vascular issues in his brain---( he did have a brain injury)----none of this was going on until the head injury.

It may or may not be an emergency situation----but I think it's urgent---and he should have a lot more testing-----neurologically-----and some additional cardiac testing. He could not last more then one minute on the treadmill when they did a stress test----his hear rate and BP shot up extremely fast.

I know I have missed a lot of other health issues----he is just very, very sick. It is obvious---and big red flags are wagging in the faces of the Docs he has seen that much more needs to be done.

Thanks so much poohbear & gracie78 for responding--------------

[Poohbear]

Julie,

I agree he needs care and it sounds like something bad is going on!

Did he say what the reason was the SSDI gave him for denial?

If he is able to share that with you I might have some more advice for how to pursue that avenue.

[Guest Julia59]

I'll let you know Poohbear----I'll probably talk to him early next week, if not before.

Julie :0)

[briarrose]

Actually depending on the lab that ran those blood tests, their reference ranges can very.

His D-dimer is positive but many people have positive D-dimer's, it's inconclusive.

The hospital where I work, any Troponin >0.10 is positive. Troponin is a test commonly used to check for myocardial infarction. Other things are sepsis, hypovolemia, atrial fibrillation, congestive heart failure, pulmonary embolism, myocarditis, myocardial contusion, and renal failure, can be associated with an increase in troponin level

You said he has an enlarged heart, there can be many reasons for this - Coronary artery disease, Cardiac Ischemia, Myocarditis, Heart valve disease, Previous heart attack, thyroid disease, Obesity, Hypertension, Marfan syndrome, excessive iron build up, severe anemia, abnormal protein build up.

Sounds like he really does need help, I hope some people from Ohio are able to give good suggestions. I don't know if you guys have a state medical assistance program. Does he qualify for food stamps? How is he able to buy his prescriptions? Does he have any family that can help?

[Guest Julia59]

Thanks Briarrose-------he does not have any family. He has a 15 year old daughter, and she sometimes helps him at the grocery store, and also has a male nurse friend that looks in on him.

He really needs support---he was so happy to talk with someone who knew a few things about his POTS---and what he is going through. I could not give him medical advice, but could give a few opinions and ideas. He was just happy to relate with someone who understands. He felt validated when I told him that his doctors should be doing more to help him, and that they should be discussing his test results with him.

I also told him about University Hospital in Cleveland----a couple people have had good luck there with a cardiologist who works with dysautonomia patients. But I think he is just going to go to Dr. Grubb---he does have an appointment as you can see in my post previously----but it's June---- Dr. Grubb is closer---about 45 minutes, and University Hospital in Cleveland is about 2 1/2 hours away. He definately needs to find other medical care, as the care he has right now is rather incomplete.

I don't know about food stamps----and I don't kow how he is paying for prescriptions.

He does have medicare---or medicaid-----I think he has a lot of work credits to qualify for SSDI----so I assume it's medicare. But right now all he has is medical coverage---no income that I know of. He can't work.

He has had very high blood pressure---and they are having trouble getting it under control, so maybe that could be the cause for the enlarged heart and aorta.

Julie :0)

[Guest Julia59]

Poohbear,

D-dimer was highlighted on his bloodwork sheet----ideal is 280-331---and his doc said his was very high at 537.

Troponin------highlighted also 0.41-0.60 is their reference---and his was 0.71----grey area---myocardio damage.

I talked to him today.

He doesn't drink---and in the past very little---1 or two drinks.

Julie.

[Jacquie802]

Hi Julie,

I wish I had some sort of advice to help, but let your friend know he's in my thoughts and prayers...I can relate about not having any money at all.

Jacquie