Here are Some Thoughts and Ideas for Recently
Diagnosed and Struggling Acromegaly Patients

Doctors are going to want you to meet with their students.

You absolutely have the right to say no. If you do say yes, the students are generally very appreciative and want to learn about the disease. This will help the next generation of doctors.

The doctors are going to ask you questions, but you need to ask too

  • Make notes in between appointments on things you have concerns about. It is easier to ask when the doctor is in the office than trying to get them on the phone
  • Trust your nurse/physician assistant/nurse practitioner. He or she is a skilled medical professional and would love to help you. If they don't know the answer to a question, they can probably find it and explain in non-medical terms quicker than you will find it
  • Issues that may be on your mind, even if it is embarrassing may include: issues dealing with libido, joint pain, tiredness, and anger issues. Discuss them so your medical professionals can help with your life issues

Be your own patient advocate.

  • If you have questions, make sure you ask!
  • Quality of life issues are very real. Talk to medical experts or other acromegalics on how to achieve a feeling of normalcy
  • If you have concerns, express them. Doctor or not, no one is going to worry about your health as much as you will. Make sure you do!
  • Keep a journal of your health. Write down your good and bad days- and why you felt good or bad! Not only will this help you, but you can also share it with your health care providers. This will give them a much clearer picture of your entire health profile.

Do your best to track all medical information from all doctors.

  • Start a file of paperwork and medical correspondences.
  • If you work with multiple medical offices, they are not necessarily communicating, much less sharing information about individual patients. Make sure that all testing is sent to each doctor.
  • Keep a special file for medical bills and give them to your accountant for income tax purposes

Familiarize yourself with your healthcare insurance coverage.

  • If you switch jobs, make sure your coverage does not lapse. As long as you maintain insurance from some company, no one should be able to tell you that your previous condition is uninsured.
  • If you do lose or quit your job, make sure there is no lapse in coverage; even if you have to pay for COBRA coverage for a couple months
  • Some less expensive insurances have prescription ceilings, or lifetime ceilings. Check into this before you need specialty prescription deals.

Talk with your doctor about psychological counseling

  • You have a long road ahead of you, and you have a tumor that will play havoc with your emotions. Get help before you need it!

Not everyone has the same treatment path; learn what your options mean

  • The three major avenues for treatment are surgery, medication, and radiation. Collect information from the experts on all your options and what the benefits and drawbacks will be.
  • Try to consult people who have traveled your potential paths before making your decision. (side effects, realistic recovery time, frequency of treatment, long-term issues)
  • Not too many doctors truly understand what or how long recovery takes from various procedures. Expect to be tired for several weeks after surgery or several days after radiation. Individual short-term meds have their own issues too. Ask before the medical procedure starts

Make sure you keep administering your medications AS PRESCRIBED!

  • As a tip, keep a consistent schedule on your calendar
  • If you have an electric calendar, consider having recurring appointments as a reminder of ‘medication day' and ‘order meds'
  • If you are reliant on insurance and you have difficulty with ordering, right now all you can do is just make a best effort to order meds far enough out to receive your meds on time.
  • Don't wait until you start to feel lousy to take your meds. If you maintain regular doses on the prescribed schedule, you are less likely to suffer extraordinary symptoms

Your friends and family may say something to the effect of ‘It's not cancer? Great! You have nothing to worry about!' --- Please do not listen to these people. Remember, if you do not receive the proper medical care, you will probably have problems. But if you are treated, you can lead a nice healthy life.

Acromegaly does not define us. We do not let our diagnosis hold us back from living a full and enriched life. Some have found passion, purpose, and inspiration through their diagnosis. These people bring inspiration, and we call this our "Faces of Hope".

Say hello.