Remember To Be Your Own Health Advocate

When you have to deal with a chronic illiness, you must be your own health advocate.  If it is one thing I have learned is that you need do to ask for all medical reports, encluding copies of scans that you have.  You are entitled to them. They are your health records.  Be prepared to read things, number one you don't understand.  And two, you find out things that you really don't want to know about what is going on in your body.  But...and I say but...you need to be prepared when ultimately no doctor will need to ask for your records, which can delay you in anyway for treatment.  I have heard horror stories of lost scans, etc.  Remember people who work in medical facilities are human.  They are no different than the people that work with you.  Things happen. You need to take full responsibiliy for your own health.  No one will do a better job, especially when you face an illiness that can take your life.

I spent an entire day at John Hopkins Hospital yesterday.  The place was unbelievable, and I was only in one building of the campus.  I expected to go into the Doctor's office, one place.  Then go to another place for all the Pre-op that needed done..........Wrong!  I stood in more lines to register, wait, called up for registration to once again sit back down and wait to be called in.  Dropped my paper work off, then wait once again to be seen.  Several times!!  But when seen, I was told, "You have been such a great historian with your medical records.  This will make it easy for us."  That is what you want instead of being aggravated with waiting and making another trip back.  And may I say the paper work you fill out is "many".  Some repeating the same information. 

I did see the surgeon yesterday that explained what will need to be done.  I was very surprised to find out that because of the tumor in my lung, I have already lost 18% of my lung capacity that can not be restored.  The tumor is sitting right at the air passage of the brochial branch.  It has blocked that area of the lung, causing the collaspe.  They will remove the tumor and the damaged part of the lung, recreate a sleeve there and reconnect the air passage.  It will be a 4 hour surgery. 

This all happened so fast.  I received a call Wednesday. Before I got off the phone, I was told when my appointment was, when my pre-op was, and when my surgery is, May 5th.  Just so happened the doctor had an opening.  He is a very renouned thoracic surgeon.  Everywhere I went after that, told me he was the best.  He did say, he was glad that my oncologist was so insistent of getting a hold of him.  (May I add you want a doctor that will spend time with you, fight for you.  If you don't, find one.  It is crucial to your health and well-being.)

I found out more that I ever knew about my disease.  My cancer is rare, but not for John Hopkins.  They see patients like me, because the place to go with rare disease is a research hospital.  They deal with the unusual. I was told that they were not surprised that I had blood clots or that I was hypo thyroid.  This disease messes with my whole endrocine system.  They did tell me that there is a study going on to find out if it is genetic.  Something no one has been able to find out. 

Am I scared, fearful?  You bet!  But I have no other choice.  I know now that it has been twice that I had no idea these tumors were in my body.  God has revealed them thru other medical conditions and tests.  They were all incidental finds with not one symptom of cancer.  I have to remember that God is on my side.  He has let them be seen so that they can be taken care of.  Now could have God just healed me?......YES and He still can.  But I would not be writing this blog if He did this right now, now would I?  (LOL)  Oh, He has a purpose for me.  It would not be the one I have chosen.  But, isn't our purpose in life to help others?  Be His mouthpiece, His comfort?

The answer of course is YES!  And I will be obedient and trust in Him always!