GETTING YOUR LIFE READY FOR POST-SURGERY

Mike Clements with wife Margo

Please note that the following is one person’s experience and may not apply to your situation. Different states have different rules and laws, therefore, please consult with an expert, and make sure you have a full understanding of the consequences of each action, before applying for any benefits listed below.

by Mike Clements

As a 6-year survivor of mesothelioma, I’d like to share my hard-earned knowledge of what you need to do to prepare your life for post-surgery and avoid unnecessary financial losses. The reason I’m sharing my losses with you is to ensure you will understand how significant your failure to act promptly will be.

Getting diagnosed with mesothelioma is a stunning event. It puts your entire life on hold while you try to understand what is going to happen and what you can do to improve your survival. Your initial focus will be on the medical issues you face; but don’t forget that the rest of the world will not go on hold until you are ready to deal with it.  Before I address the financial issues, you should know that help is available with regard to the medical issues. The Mesothelioma Applied Research Foundation (Meso Foundation) is a 501(c)3 non-profit organization dedicated to ending the suffering caused by mesothelioma by funding research and providing support to patients like you. This organization has vast amounts of knowledge and resources available to assist you. I urge you to call Meso Foundation’s Mary Hesdorffer, Nurse Practitioner, who is an expert with over 14 years of experience with mesothelioma treatment.   Her contact information is mhesdorffer@curemeso.org; US toll free 877 363 6376 or 703 879 3820.

Before Your Treatment Starts

It’s VERY important to begin several financial processes BEFORE your treatment starts.  Afterwards, you may not be physically or mentally capable of dealing with the issues (you won’t believe what painkillers and anti-depressants can do to your mind… until you experience it). Your personal caregiver (spouse, etc.) is going to be overwhelmed trying to care for you and managing the routine household tasks like cooking, cleaning and paying the bills. She/he will not have the time to deal with initiating these vital processes. Also, you will probably encounter some other medical-related issues for which you can do some advance preparation.

  • Get a Will (or a Living Trust), a Durable Power of Attorney, and an Advanced Health Care Directive prepared.
  • Apply for Social Security
    • Start the process soon after diagnosis. SS pays benefits no earlier than 12 months after filing; so if you wait longer than a year to file, you will lose money.
    • SS recognizes mesothelioma as a 100% disability. I found the people I talked with to be very supportive and proactive.
    • The process took about two months. I lost 14 months (over $14,000) worth of monthly benefits by failing to file immediately after diagnosis (the result of the drug stupor and my wife being overwhelmed with her day-to-day burdens).
    • Twenty-four months after you receive your SS disability, you will be notified that you have also been enrolled in Medicare Part A and Part B.
    • Look carefully at Part B. The rules for accepting/declining it are based on your/spouse’s coverage “while CURRENTLY working”. If you are retired, declining Part B can result in a 30% penalty for life when you accept it at age 65. Weigh the monthly cost until age 65 against the cost after 65 and determine what your “break-even” age is and how likely you’ll be to exceed that age.
    • When you reach full retirement age, your disability ends and you are put on social security for the same exact amount. This is a technicality, but be aware of it, so it doesn’t come as a surprise.
  • Apply for VA benefits, if you are a veteran and had exposure in the military.  You may be entitled to lump-sum compensation and a monthly pension. There is NO retroactive provision before filing; benefits start based on the filing date. If you wait to file, you will lose money.
    • The process is not set up for asbestos-related claims.   Make certain that you get and fill out an asbestos questionnaire.
    • Be careful about contacting the VA directly, a misstatement or verbal question or challenge can delay or even cancel your application. Use an advocate to avoid such errors.
    • You will likely be examined by a VA doctor and have a pulmonary function test performed by the VA.
    • This is a long process. I applied 8 months ago and it has not been determined yet.  This is one of my MAJOR errors, I have lost 45 months worth of monthly benefits by failing to file immediately after diagnosis (the result of the drug stupor and my wife being overwhelmed with her day-to-day burdens and lacking the knowledge of my military history). UPDATE: I was approved for 70% disability as of 3/10. Unfortunately, as I noted the VA only pays retroactively to when your claim was filed…  I lost over $63,000 in monthly benefits!
    • You need  to ask your VA advocate about the “Individual Unemployability” form. In order to qualify, you need your doctor to state in writing that you are unable to hold a job now or in the future. If you’re approved, you will get 100% disability. This is only retroactive to the day it is filed.
    • Check your state’s regulations for possible property tax reductions for disabled veterans. In my case, in California, there is an exemption for 100%-disabled veterans.
  • 3rdParty Claims (Asbestos manufacturers/suppliers/installers/etc.
    • You will need an attorney
      • Ask in your local community and find an attorney with significant asbestos experience.  Consider using a firm that philanthropically supports the Mesothelioma Applied Research Foundation, and thus has demonstrated its commitment toward research for better treatments and a cure.  A list of law firms supporting research can be found at curemeso.org/legal.  Only settle on working with an attorney that you feel comfortable with.
      • These processes can be very long. Settlements can take many months and some will go on for years. Be prepared to learn that most companies have been through bankruptcy and are paying only pennies on the dollar.  Do not expect to receive million dollar settlements as was the case in the early days, but you will ultimately receive some significant compensation. IT WILL NEVER BE ENOUGH FOR WHAT YOU ARE GOING THROUGH. You will gladly give back every dollar you receive, if only you could get your life and body back and live without pain.  You may not see the end of the process, but the outcome is critical to your family/estate.
      • You may be required to undergo depositions. Document all your exposure history that you can remember, dates, places, companies, etc. while you are still feeling good. You have no idea how hard it will be to answer an attorney’s questions when you are in pain (from the surgical, radiation and/or chemo damage you will likely experience) and under the influence of multiple powerful pain drugs such as Morphine, Oxycontin, Vicodin, etc. The opposing attorney’s questions are designed to minimize his client’s liability; not to help you receive fair compensation for your exposure. Listen very carefully to your attorney’s advice on how to answer questions and practice answering some questions with him before the deposition.
      • I have read and been told to be careful what you post regarding the possible sources/causes of your mesothelioma. Apparently, some attorneys “troll” websites and will use your own comments against you in settlements.
      • If you don’t want to go through a lawsuit, there may be situations where you may be able to collect compensation through a bankruptcy trust. The amounts you receive may not be as significant, but it is not an adversarial legal process with depositions.  Talk to your attorney about this.
  • Discussions with and Considerations for your Doctor
    • Talk to your doctor about whether he or she will approve your need for Disabled Person Plates/placards for your car(s) and apply to your state Motor Vehicles office is appropriate. This decision will be made after your surgery, but you can learn the process ahead of time.
    • If you have a Long-Term Care policy, review its requirements and discuss them with your doctor and caregiver. If your post-surgery condition qualifies you for compensation, he will be able to help you document the need.  In my case, I have a policy which pays directly to me, not to a care facility. So, even though my wife provided all my care, I was entitled to receive benefits. Unfortunately, for the reasons I explained at the beginning of this article, neither I nor my wife remembered the policy until after my condition had improved to the point where I no longer qualified for compensation. We lost many months or possibly years of compensation.
    • Talk to your Utility Company about whether they offer a “Medical Baseline” allowance.  Again, this will require your doctor’s approval and the decision will be made after surgery. You may find that after surgery and being on drugs, you become exceptionally sensitive to heat and will require air conditioning. In my case, I became nauseous if the temperature exceeded 75 degrees! My tolerance has improved somewhat, but temperature is still a significant issue for me.
    • This bit of advice is going to be hard to follow, but it is very important. Talk to your doctor about regaining your strength and range of motion.  You will have to take “baby-steps” and you won’t feel up to the task. But, if you give into the pain and don’t try, thinking “I’ll start when I’m feeling better”; months, or years, will pass and the road back will be even harder.
  • Oxygen
    • Anticipate that you may require oxygen. In my case, it was at over 4,000 feet (when you fly, all commercial planes are pressurized to 8,000 feet).
      • Be aware that some prescription painkillers such as Vicodin are respiratory depressants and they make you more dependent on oxygen.  After getting off Vicodin and other pain medications; I can now go to 8,000 feet without oxygen!
      • Each airline has its own rules about flying with oxygen. Generally they require both a medical certification of need (possible on their own form) and a valid prescription.  The requirements to use your own oxygen bottles are onerous. Generally, the airlines will provide oxygen for $100 per flight segment with advance notification (there are seating restrictions) and once you tell them of your need for oxygen, they won’t let you fly without it… unless they don’t offer it (usually on short connecting flights), then it’s fine to be without it!
        • Consider using a POC (Portable Oxygen Concentrator).There are now a few models that are approved for use on most airlines. The airline requires it be operated on battery power and may require spare batteries to permit up to 200% of the flight time. It gets complicated when you have connecting flights and a limited amount of time or access to recharge the battery(s).
        • Your medical plan may, or may not, cover the expense of rental or purchase of a POC. Investigate ahead of time to determine what to do.
          • The most important thing to know about POCs is that only units which have continuous flow can be used at night. The smaller, lighter (cheaper) units with only pulsed (demand) flow can only be used when awake.
          • The second most important thing to know is that while you may need, you won’t like it.  After 2-3 days, your nose, ears, and cheeks hurt from the canula, and it doesn’t get better over time. Use a saline gel in your nostrils, available w/o a prescription, to prevent or minimize chafing.
  • I hope this helps.  My thoughts are with you.