Living Well with Mtiochondrial Disease giveaway!

The mitochondrial community has longed for a REAL book on mitochondrial disease. Not a book written by a doctor that puts together cases and comes up with an idea of what it is like. But a person from the community to write a book that knows what it's like from the gut wrenching diagnosis to the ongoing care that can be overwhelming! I have not read this yet but have heard excellent feedback from a those that have. I can't wait to read this myself and I thought why buy just one for me? Why not buy one extra for my mito friends. I am giving away one of Cristy Balcells new book Living Well with Mitochondrial Disease. Any can join that needs to know more about mitochondrial disease. Whether that is a grandparent, aunt, affected adult, teen, or a parent of an affected child. Leave a comment, ONCE and I'll use an automated number choser to pick a name. This starts now and goes until Saturday 9pm EST.

Why does diagnosing Mito take so long?!

"when you have eliminated the impossible, whatever remains, however improbable, must be the truth" Sherlock Holmes It took my family 6 years of hard searching with highly qualified doctors to find out that we had mitochondrial disease. At first there were a lot of possiblities the genetist and other doctors suggested. The children went through all sorts of testing and blood labs.

Then there was always the wait after a test went out. Was it going to show the problem or were we waiting yet again for a negative finding or worse an ambiguous finding that required more testing. I hated making my children take more and more tests. Slowly the possible problems were cleared from the table. Eventually the only disease left was mitochondrial disease. After a couple years of that being the only possiblity but still no diagnosis my husband and I were stumped. Why not diagnose the kids? One doctor said I won't diagnose your daughter with mitochondrial disease because then there is no hope. How wrong that doctor was. A diagnosis of mitochondrial disease is NOT a no hope situation. It is serious. Another doctor we dealt with said that the mito community was moving towards only diagnosing people when their was black and white lab evidence, therefore anything less was not diagnosable. Again not exactly true if you look at the DSM, Cleveland Clinic's criteria, and other main stream specialists. Eventually testing for mitochondrial disease took a huge leap forward and we were clearly diagnosed. Not long after getting those results back I (a 35 year old had a large stroke). Soon none of our doctors could deny we had mitochondrial disease. Like the Sherlock Holmes saying, "when you have eliminated the impossible, whatever remains, however improbable, must be the truth" Mitochondrial disease was what we were left with. It took years of searching and eliminating other possiblities. For us that is why it took so long to final diagnosis of mitochondrail disease. The good news is, with the recent leaps in testing that LONG wait is being cut down to months or less! The best way to reduce your wait to find out if you have mitochondrial disease or a disease LIKE mitochondrial disease go to a specialist in metabolic/mitochondrial disease. These specialist are often in a position to tease out which tests will be the most revealing and clarify your situation promptly. But there are still times when being diagnosed with mitochondrial disease is an exercise in removing everything else it COULD be to find what it is.

Ways to save money: Starting with the Insurance Company

I know everyone loves to throw darts at insurance companies. I am not going to defend them. They have worked hard to get most of their reputation. Remember though that the people working for the insurance companies are just like you and me.

1) Talk to your insurance company! Contact your insurance company and get a caseworker. That way you are can talk to ONE person and work your way through the various ups and downs of medical needs and bills. Your caseworker should be able to pre-approve needed visits, equipment, out of network issues, etc. 2) READ your insurance policy! Call the insurance company if there is a gray area. You want to be sure you know exactly what is in-network, out-of-network, covered under therapy, durable medical goods, what do they consider clincal trials. Make a list of exactly what affects your medical condition and look for those parts of the policy. 3)Do not try to blindside your insurance! I have had friends go to a hospital they knew was outside their insurance but they hoped was better for their child. They thought that once they were there they could talk the insurance into covering them in the hospital. WRONG. That just means you have to pay more money. 4) Know about and use the appeals process! I live hours from a large city and many of my old insurance's in-network mobility providers. I found out that I could appeal their out of network status of a local mobility provider based on distance and my inablity to get to the large city. I was also able to use an appeal to get in-home therapy because of my condition. I had to provide doctor letters. 5) Understand that your hospital and your insurance company have a deal. Your insurance company should send you a letter that says, "You owe General Hospital $341.00" If the hospital bills you for more then that you need to make some calls and find out why. 6)Look over all insurance claims, and bills! We have found thousands of dollars of billing errors over the years. Simple things like billing the wrong insurance company, the wrong child's name, or social security numbers that are wrong. 7)Never accept that a mistake on the insurance company or hospital's side means you have to pay. I was told that I had to pay for the entire amount of one of my child's births because our old insurance company falsely okayed coverage, then denied 2 years later. The hospital then turned to us for pay despite the fact that at the time of the birth we provided the right insurance company. We had to press the issue but they finally billed the correct insurance and all was taken care of. During this all we were told that despite their mistake because of the length of time involved we HAD to pay. While I am not a huge insurance fan I would MUCH rather have the insurance of my choice then none at all. I highly recommend using a large dose of politeness and honey when talking to your insurance representatives or caseworker. They have information you need and could make your life better. When you are looking at your medical bills and trying to pare down the expenses. Start with your insurance!

Mito Families! is hosting a Christmas Card Exchange!

I am excited to announce that Mito Families! is hosting a Christmas Card Exchange!

If you are affected or suspected of being affected by mitochondrial disease whether you are an adult, teen, or child you are welcome to join our Christmas Card Exchange. This is a worldwide event that based around the love we feel for each other to fight this disease together.

I would like to have us all keep eagle eyes for any person with mito that is in the hospital within 2 days of any of the holidays. We can then send them e-cards via their hospital (if they have that service) so they don't feel alone in the hospital.

There are lots of questions about what is going on and what I am asking from you. Lets keep this SIMPLE friends! Here is the starting place a questionaire I created.

I am open to helping families with the card exchange and with any concerns you may have. You can email me at gfcfmomofmany (@) yahoo.com

Mito tends to bring friends

Mitochondrial disease is a whole body issue. While it may affect some areas more than others due to the exact gene and energy complex affected. The whole body is at high risk. One of the main symptoms of mito is to have more than one major body system compromised.

Simply meaning mito brings friends...

Mito is generally associated with muscle weakness, energy loss, and progressive disease course. Along with that can come mild to severe problems in your eyes, digestive system, autoimmune problems, bone marrow shut down.... and the list continues on and on.

If you think you are experiencing additional symptoms that are not being covered by your current care you may need to seek out additional specialist help.

For example: I began losing hair. Not just a little bit but hand fulls. No doctor had any ideas why. They knew I was suspected of having mitochondrial disease. That was not the cause in their opinion.

I had to do some web searches, call some friends, quiz every doctor I saw for possibilities. One possibility came up several times from several different angles, lupus.

I went to nearby lupus center and had a ton of labs, and tests run on me. The doctor poured over my record. My autoimmune system had gone out of control. I had lupus and several other autoimmune issues.

The doctor started me on medication to get my lupus under control and that helped my mito symptoms. There is a delicate balance that has to be found. Keeping the your secondary issue from causing your mito to progress and keeping your secondary issue from progressing because you aren't treating it aggressively enough.

The funny sad thing is to have mito and another disease like lupus I have had to deal with doctors that could only focus on one or the other. This is where going to a medical center that deals with mitochondrial disease and has a large group of specialists that can talk directly with a mito specialist is helpful.

Mitochondrial disease is not simple, and as the disease progresses it will get more complicated. Be on your toes and encourage your doctors to always check the simple answers, before assuming that mito is the reason behind new symptoms.

Stay strong my friends!

I have a Gtube

At the peak of Mitochondrial Awareness Week I was struck down. I ended up in the ER on Friday with a PICC line infection. The infection had already jumped to my blood and was causing havoc.

I had staph and yeast system wide :( It took a week of IV antibiotics and anti fungals to get everything under control.

The PICC line was taken out and a PEG tube was put in. I now get fed through a tube in my stomach that can be a G tube, meaning it goes into to the stomach only. Or a Jtube which means it can be extended down into my small intestine.

We are starting with the Gtube option because the stomach is a natural holding place for formula and food and will allow a short burst of larger amounts of food. If we have to go down to the Jtube option I will need a continuous feed because there is no place to hold formula.

Frankly the Gtube option is not going well. My stomach just cannot handle the schedule I was sent home from the hospital on. I have changed down to one of the most elemental formulas and that has helped but not relieved the problem.

This weekend I have two posts that I am putting together by request. One is how does a Gtube feel. Many mito kids have Gtubes but are unable to explain how it feels to their parents. The other article goes with the financial article I wrote last. I forgot to show how expensive and cumbersome supplements can be. Lord willing I will add those articles this weekend!

I hope you all have a wonderful, healthy day!

The Financial Reality of Mito

It's pretty safe to say that everyone knows that health care is expensive. The more chronic or serious your condition is the more expensive. These are vague thoughts though. No one near me other than parents of other children with mito truly know and understand fully just how expensive it is to deal with a child/adult that has mitochondrial disease.

Today I am going to try to give you a taste of what it is like. I have asked questions of the mito groups I am with about their costs, mileage, and medications. I will try to go middle of the road. Please understand depending on your situation you could be worse or better than the average that I am going to show you.

First lets just talk in general, what costs are involved with mitochondrial disease?

Health Care: This is generally taken right out from your check. The cost can be hundreds of dollars a month. That depends on your job and what level of care your choose. We have found over the years that as much as we want to stay on the bottom tier, HMO. It is not possible given the specialists we need to see. First extra cost for mito is jumping up from the bottom health insurance tier to a higher more expensive one.

Copays:
Lower level copays- these are for primary care physicians (PCPs), generic medications, basic therapies
Middle level copays- these are for specialists, specialized therapies, in home nursing care (depending on the insurance) and most other medications
High level copays- these are for urgent care runs, ER runs, hospitalizations, expensive medications or special formulas

The Mitochondrial cocktail:
This is a long list of supplements (here is the mito cocktail list from the UMDF.org at least 22 supplements! ) that doctors hope will improve mitochondrial function. If you have a specific deficiency in one of these often the insurance will cover that specific supplement. For the rest of us it is highly spotty as to whether our insurance will cover or not. Most insurance carriers will not because there is no scientifically solid evidence that these supplements work. (Another area we desperately need researchers to work in!)

Equipment:
There can be rental fees for everything from a wheelchair, walker, specialized seat for eating, cough assist vests, to ventilators, and pumps for IVs and feeding tubes. 

In Home Care: 
Some mito patients are bed bound or home bound if for no other reason then they can't go out with such low immunity. That can mean you have to bring the medical help to you. This is usually covered under copays. There is one very expensive exception, babysitting. You have to have a very specialized babysitter to watch a child as medically fragile as a mito child can be. Some states have respite care that is free. Some charge you on a sliding scale as per your income.

Going to the Doctor: 
While most people only have to deal with a PCP and only rarely a specialist if at all. Mito patients talk more with their specialists then they do their PCP. The doctor appointments never stop. There are only a few places in the WORLD that can competently diagnosis, care for, and follow up mitochondrial patients. When I asked a large group of mito patients about how far did they have to go to see their specialist the answer was broken down into 2 groups.
1) Normal specialist covering basic systems but with mito knowledge 4-8 hours drive one way
2) The 'Super' specialist that is the mitochondrial lead doctor, or a doctor that is helping you with an unusual complications of mito like dysautonomia. Those were trip ranging from 8 hours-out of country! Many of these trip required airplane tickets.

Food:
Having mito can mean your body becomes so compromised you get a secondary disease, like fatty oxidation disorder. That would mean you have to change your entire diet and be incredibly strict about it. Perhaps you stomach has shut down or your bowels. The only 'food' you can have is a supplement. That might or might not be covered by your insurance. Even worse is if you cannot have any food by mouth and you have to have TPN which is completely given via IV. TPN is extraordinarily expensive! (about $7500 per month according to the Oley Foundation)


In Hospital:
Recently hospitals have been sneaking in fees that hit us while we are down.
-parking fees-There are still some hospitals that are kind enough to waive or give a set fee while in patient but those hospitals are becoming less and less. You then end up paying the per day fees.
-television fees- To use the television in many hospitals you now have to pay a $5 a day fee. In cash while there or it's turned off.
-parent's meal- It used to be that one parent could accompany a child and get a basic free meal. Not any more, $3-5 per meal.
-sitting service- While a young child is in the hospital they cannot be left alone, even for you to slip out and nap or shower. Hospitals used to let nurses aides sit with your child as you did that. Now in many hospitals you have to pay for a in house babysitter to come and watch your child. Rates very greatly.

That was just a warm up. Here is a typical specialist run. This is considering a middle level insurance carrier and that you didn't stack appointments on one day.
Pulmonologist Appointment: non-urgent
Copay-$35
Lab draw fee-$20
Medication copays (2 medications)- $55
Rental, cough assist vest- $15 a month
Gas to specialist- (12 hours total run)(.51 cents a mile as per federal gov.) a startling $771!
Hotel for 1 night (if you can get in a Ronald McDonald House YEAH! very low cost) If not about $100
Food 4 meals out about $100
TOTAL for a specialist run: $1096 (that does not include the time you or your husband had to take from work)


Yes, there are ways to cut corners. Sometimes you can sometimes you can't. A lot depends on did you have a heads up that you were heading to the hospital, or specialist appointment? Can you put more than one dr appointment on one day so you get as many done on one trip as possible (remember you will have to pay for copays for each appointment)? There are times it is all you can do to get the breathing kit, anti-seizure meds, pillows to prop up your low tone child/adult, extra clothing in case they throw up from some test.....etc. into the car and go?

I sometimes think that simply going to the doctor's and getting there on time should have a reward!

I am writing this not for your pity. Sympathy, more understanding... When the girls get together for a coffee and I say no. I am tallying in my head how much the gas would cost and the coffee and do I have to pay someone to watch my child while I take an hour breather with my friends. Soon you quit asking and I quit even trying because the road of mito just gets tougher and tougher.

Please understand that mito families do the very best with what they have to deal with. Finances are not a pleasant nor popular topic but all mito families are stressed by finances. I hope this gives you a better idea what mito families deal with.