I just had a really upsetting encounter with one of Megan's physicians - I actually feel like just breaking out into a full on emotional cry right now. Why should I feel like I am bothering the paid physician to answer a question or clarify a certain test that needs to be performed. It is one that was suggested by the physician and the instructions were to get one of my local Dr's that I trust to have it set up - it is a genetics test/skin culture and labs - is it too much to ask for the actual test code that Mayo uses so we make sure it is done right? I attached the tests via PDF to my email
My question:
The two attached docs are tests through Mayo. Could you please look at them and confirm that this is what we should proceed with? He will be able to perform but we want to make sure we have the right studies before proceeding further.
In the event that these are incorrect please advise the correct test orders.
Response:
They're exactly what is it my email
This is what was in the email which led me to question test codes:
The additional studies are 1) obtaining tissue (it can be peripheral blood lymphocytes) and completing electron microscopy studies on them to look for the presence of the typical lysosomal inclusions that are diagnostic of the disease. A pathologist would know what to look for in this case. 2) Skin biopsy to do TPPI enzyme analysis
through Mayo labs. The skin would have to be grown in culture then sent to Mayo labs for analysis
I did not respond to the very curt answer I got but decided to call to be told by the person on the other end that the Dr. is actually out sick and they were surprised that I got an answer at all. And her being so blatantly curt was passed off as she is sick and she did not have to answer at all.
If you are sick and unable to answer - have an autoresponder on your email that states that so you dont feel obligated.
I did not ask for an answer "TODAY". Did not expect one till next week sometime.
I am not a doctor and have never professed to be one. I am my child's lifeline and advocate though. I never bitch or complain about any fees, appts, wait times, etc. I understand that it is a highly specialized area and there is not a vast amount of help to mito patients and you have to be patient and understanding.
Lastly - I dont care how you feel - this is your profession - this is about my child's life and future - she has a bad day every freaking day - there are more bad days around here than good for everyone. I am tired and emotionally spent - but I am not rude.
Please tell me I am not crazy - why do I feel hurt? I guess it is so disappointing. My faith in the medical field and their compassion for the people they treat in their specialty is rarely there or it seems it is a front when they act like they do care.
For the first time in so long Megan woke up clear in her chest - hope it stays this way. She also has been pretty cranky and I figured out why - she is cutting her six year old molars. Had her in the pool and she had her head back and mouth open and they were staring right at me - puffy gums and all.I am guessing it hurst more cause she does not chew food with her teeth and her gums are thicker - ouch! And - She has broken the 25 pound threshold at 25.2 pounds. Pacemaker was put in a year ago on April 13th and she has gained 4 pounds with it.
