With a list of complex, complicated, and misunderstood illnesses, sometimes the healthcare system can feel like it is letting you down. With fights to be taken seriously, falling through the cracks because your case seems impossible, and even being listened to.... REALLY listened to... Can seem like it is almost impossible.
Through 15 years of complicated illness, I am now lucky enough to have a list of physicians who I like and TRUST. This takes a long time. It is not often that you feel safe putting your life in the hands of so many different specialists, so I want to give credit where credit is due.
After a lengthy process, I had an appointment today with a Hematologist.
For starters, I want to point out that my appointment was scheduled for 1pm and she walked in at 1:03pm. This is almost unheard of in the medical world, especially with a specialists who is highly respected and sought after.
We did not even stop talking until after 2:30pm.
The appointment was similar to the first consultation I had had with my incredible Internal Specialist a while back.
After informing me that she actually spent over an hour looking through my file on her own, at home, the night before, she told me that she actually ran out of time and will be reassessing my chart more thoroughly after today. She wanted as much information as humanly possible about my experiences with health - all the way back to when I was a kid.
She asked me loads of questions - and only to improve her understanding. She did not seem to have any other agenda than to just listen with objectivity; she was not looking to prove or disprove anything, and did not disregard my thoughts and opinions. She was also very blunt and candid in explaining HER general thoughts and assumptions.
I have never wanted things sugar-coated and I have always appreciated openness.
So here is the basic summary of what went down:
- she is unsure about the concept of an immunodeficiency per se. She, instead, believes that when my T cells were 'learning' how to properly function as an immune system, this process was either disrupted or incomplete - so my immune system never learned how to properly protect. She worded it a 'immune system dysregulation'. The best way to describe it is that my entire system never learned proper immune responses, and therefore, I am auto-immune as a whole. Which could explain why I seem to get diagnosed with new auto-immune diseases every year or two.
- she is sending a referral to a Hereditary Angioedema specialist (one who is already part of the 'magical' comprehensive care clinic that I mentioned a couple of blog posts ago).
In this instance she actually asked ME if I thought I could benefit from further investigation and possible treatment / which I do.
- she would like me to get relatively regular C1-Esterase Inhibitor Deficiency bloodwork taken. This is crucial in making a specific distinction as to whether I have type 1, 2, or 3.
- she will be evaluating more recent bloodwork to see how my immune responses have worked in regards to the vaccinations done earlier this year. My initial responses were pretty good, and now she wants to follow-up and determine if those responses have maintained.**
- she is sending me for specific bloodwork to check for Diabetes (as per suggestion from my Ophthalmologist).
- she wants to figure out if immunoglobulin replacement therapy would be beneficial, and she is toying with the idea of a medication to completely kill my B cells, then have them build back up. The goal here would almost be to kickstart or reboot my immune system in hopes that it would begin to develop a more normal response.
- she has prescribed two more anti-nausea meds (that I had NO idea existed!!!!!!) to help battle the constant nausea. (This could mean being finally able to shower again without vomiting afterwards!)
The truth is, she is not sure that we will ever be able to figure out a connection between all of the disorders I've been diagnosed with. I will see her again in a couple of months to follow up, and I will be seeing an HAE specialist in the meantime (in theory).
** Following up on whether my body has maintained the initial positive response is something that happens rarely. In most cases, if you have one set of bloodwork results that looks normal or expected, no follow up bloodwork is ordered. It is important to check and re-check bloodwork results if the SYMPTOMS are present. That way it can rule out anomalies or false positives/negatives.
So:
A great conversation.
A commitment to continue investigating.
More anti-nausea medication options.
A referral to another important specialist.
An updated medical chart.
AND - the appointment started ON TIME!!
For chronically ill patients, there is nothing better than when YOU are asked to explain your symptoms, thoughts, notions, experiences, and then encouraged to ask questions.
When she sat across from me, intrigued by the case, and BELIEVING me, it restored my faith in being properly taken care of.
The system has its flaws - but I am lucky to live in Canada and I am incredibly lucky to have physicians who truly care about me as a person and my quality of life... As opposed to ONLY viewing my case as a puzzle that needs to be solved or only focusing on improving bloodwork, regardless of symptoms.
Fingers crossed that her interest and intrigue is not diminished until we have investigated every avenue :).