PBC Foundation

Health Records On A Flash Drive

At the time that all of this started in May 2016, I did not even have a Primary Care Physician as I was rarely ever sick, and I had not had one in over a decade. However, gaining 40 lbs. in 3 months last year and having an entire laundry list of symptoms which would appear shortly thereafter, that would soon change.

I found a Primary Care Physician who diagnosed me with Hypothyroidism, then proceeded to refer me out to a:

Cardiologist for a High Blood Pressure, Heart Murmur and Palpitations

Pulmonologist for Asthma, Allergies, and other Breathing Issues

Gynecologist for Mammogram, Yearly Pap, Incontinence, and Uterine Fibroid Tumors

Gastroenterologist for Elevated Liver Enzymes, Pain in my Stomach, Heartburn, and Pain on my Right Side

Neurologist for Daily Migraines or Headaches, Dizziness, Narcoleptic Episodes, Insomnia, Fatigue, Raw Nerve Endings, and Ringing in my Ears

Rheumatologist for Severe Joint Pain, Back Pain, Musculoskeletal Pain, and Issues with Walking

From there between the Gastroenterologist and Rheumatologist I would be diagnosed with PBC and would end up being referred out to a Transplant Hepatologist and Transplant Surgeon.

I learned very quickly in the beginning, however, that even though these doctors would refer you out they did not transfer your records or any testing results that had already been completed, and I was being asked to pay for duplicate testing which is quite expensive and not to mention time consuming. So I bought a Flash Drive, a 128 Gig Flash Drive that had enough memory on it to carry ALL of my Medical Records, MRI and Ultrasound Images, X-Rays, Lab Results, and Summary Pages from every one of my doctors visits... the doctors loved me for the convenience and it saved me a lot of time and money that I would have spent in duplicate testing.

So I guess the moral to this story is be prepared and get a Flash Drive.

Just FYI... Even though I may have PBC I have managed to lose 25 of those 40 pounds that I had gained and I am still slowly losing weight so not all is bleak. 😊

10 Replies
oldestnewest

Good job on the weight loss! Very impressed with your records management.

2 likes
Reply

Thank you... just thought I would share as I am sure I am not the only one to encounter this situation.

1 like
Reply

Yes, the US can use a overhaul of its medical system from coverage, cost to systemic management. This is why healthcare costs so much in this country & the results still are not as good vs those in lower spending countries. But that is not a discussion for this site. So I will get off my soapbox. 😉

2 likes
Reply

🤔🤷‍♀️🤫🤗

1 like
Reply

My primary care doctor sent all my scan results copies of blood tests etc to the specialist which is good medical practice i live in ireland

2 likes
Reply

My Internist sent all mine to GI. Didn’t have to pay to do labs again, thank goodness.

1 like
Reply

Thats the way it should be

2 likes
Reply

Being a veteran, I can download my records at any time. I try to do it at least every 3 months after I have had a checkup or something.

1 like
Reply

Great idea. I bring my lab spreadsheets to my doctors and they love it. The spreadsheet has all the lab histories in a chronological order so they can see the trend. The lab results are grouped by functions including CBC, Metabolic panel, liver function, renal function, lipids, thyroid function, pancreatic enzyme, vitamin and mineral level.

I originally did this for myself to track the progress with all the meds/supplements I am taking. It helped me with the questions to ask the doctors. My doctors were impressed and seem to take me more seriously.

1 like
Reply

I love that... great idea!

Reply

You may also like...