Persistent elevation of absolute immature granulocytes 7 months 0.04

Oh, one more thought : I noticed the majority of patients sharing on this thread are women, or identify as such. I’m interested to know if any of you have heard men share stories similar to our own, and if so, are they are as remotely distressing as the experiences we’ve endured? I often think there is a glaring difference between the treatment of male vs female patients, esp regarding rare conditions and autoimmune disorders. I’d love to hear y’all’s thoughts on this! -Molly

Hi Molly (@chiennoir1981). While you’re waiting for @lightgoddess to reply to your shared diagnosis, I wanted to officially welcome you to Mayo Connect! You’ve certainly had your share of medical drama over the past few years and I’m so sorry to hear that you’re among so many of us who have been treated dismissively by our care providers.

I read your bio to see that you are now working with a group to help address the medical inequity among all patients. Reminds me of our own Mayo physician, Dr Victor Montori, who has started a global initiative with that premise in mind. It’s called The Patient Revolution.

The Patient Revolution by Dr Victor Montori
https://www.patientrevolution.org/
It seems like your oncologist is respective of your health issues but your rheumatologist is not. Do you have an option for changing rheumatology providers?

My husband was diagnosed three years ago with MDS and his immature gran % last month was 1.4 and .09 in 2022. What drew their attention was also that he had a .1 reading for NRBC's. His Oncologist doesn't seem concerned. They are watching his hemoglobin levels without alarm to the other readings. However, they did a bone marrow biopsy to diagnose the MDS. It's hard to stay patient when you're concerned what's going on in your body. We are fortunate to have a PCP that knows when to refer you to a specialist. My suggestion would be to stay informed and google. Don't hesitate to push when necessary.

My neighbor has been going through the same experience of Vasculitis and lack of doctor communication. The vasculitis was the reason she had to go onto dialysis. She goes to her nephrologist, PCP and the surgeon that watches her poet almost every week. Her hemoglobin runs around 8.8. She’s tired ALL the time and still follows the diets for being on dialysis. Shed change doctors but doesn’t want to go through all the extra testing. She feels like she’s in a corn maze with no help out. Any words of encouragement from you, I will gladly pass on to her. Prayers for strength to face each day.

Thank you so much for letting me know about Dr Montori’s project! I’m excited to peruse the website and see if I can help in any way. I feel a change in the air when it comes to increasing interest in the necessity of compassion and understanding in medicine. As a sociology graduate who fell into medical billing, coding and accounts receivable analysis, I’ve observed over the last decade that insurance is increasing deductibles and premiums, denying claims with disregard to CMS federal guidelines and contractual provider agreements, while decreasing level of coverage. The majority of Americans are forced into choosing between basic necessities like food and housing, over paying exorbitant fees for medical insurance which doesn’t actually pay for anything. Thus people often ignore early signs of illness bc they can’t afford to seek preventative care, which in turn causes overcrowding in trauma/ER departments. Uninsured and underinsured patients now fill hospital waiting rooms, presenting with milder symptoms which would normally be treated by outpatient primary care physicians. For these and several other reasons, healthcare costs have risen exponentially in a short period of time. Unfortunately, most of the financial responsibility then falls to the patient, who is suffering from illness while trying to choose between saving their home vs seeking treatment for diseases like cancer 😤 I have a problem with this interpretation of the Hippocratic oath, considering a medical professional’s sole responsibility is to treat every patient with respect and dignity, try to improve their quality of life, dedicating themselves to the service of others- particularity those who cannot fight for themselves. I personally believe healthcare is a basic human right, and a person’s wealth (or lack thereof) should have no bearing on level of care. I myself have been treated poorly by several doctors due to the fact that I am on Medicaid, meaning I don’t have the financial means to pay for my own medical care. In addition to my economic status, I am also bipolar with a psychiatric history, as well as in long term remission from alcoholism. Many physicians make presumptive judgments about me, which is not only unfair, considering they generally speak with me in an exam room for less than 10 minutes. But it is incredibly demoralizing to feel that a stranger’s assessment of my character (or lack thereof), based on a cursory glance at my medical record which has nothing to do with the reason I’m currently seeking help, has shamed me into thinking I’m not deserving of proper care (which I know is not true, but I avoid going to any new doctors now bc of this). So I am not able to receive adequate relief for debilitating chronic pain, despite my inability to accomplish even the most basic of daily activities, i.e. showering, vacuuming, cleaning, laundry, grocery shopping, etc. I have tried everything else available to me while I wait for months on a referral for physical therapy, and a neurosurgeon for spinal osteoarthritis and vertebral stenosis/radiculopathy. The rheumatoid arthritis was never an issue before my Vasculitis diagnosis, which has exacerbated every other physical disability. Many days, I can’t even get out of bed, and yet my concerns are rarely taken seriously. This is a very familiar story among every patient I’ve been blessed to connect with via the Vasculitis Foundation, who emphasize the importance of patient advocacy and developing a strong medical support team. Many of our patients have seen specialists at the Mayo Clinic, so I did some research on financial assistance (since they don’t take out-of-state Medicaid), and requested a referral from my PCP in hopes that I’ll be able to get a second opinion from experts in my disease. I pray that I may find a team of doctors who treat me like a human being and communicate openly with not only each other, but also with me. Because every patient MUST be involved in their own care, as an active participant in developing an individualized treatment plan, and most importantly- to receive the respect and care they deserve, no matter their socioeconomic, ethnic or personal “status.” We deserve better, and must push for visibility through community action and legislative reform. Thank you again for your input, I will definitely check out patientrevolution.org. It sounds a lot like the initiative our committee is proposing, and I’m a huge believer in collaboration! -Molly