Where's Your Line? Navigating Repeated IV Attempts with a Rare Disease

My experience with a rare disease, which was the same for my mother too, is that our health is complicated, and so is our medical care. Not only do I require frequent doctor's visits, but every year I have a list of medical tests that have to be completed, and then some.

The reality of a rare disease medical itinerary

My mother tried her best to instill in me a “get-it-done-and-over-with” attitude when it comes to medical tests and procedures. I haven’t fully adopted this attitude to the degree that she did, but I have done so decently. I don’t believe I’ll ever handle medical procedures with the same dignity and grace as her, but I am of the mindset to get medical tests over with.

I am so aligned with this mindset that I am left completely baffled when told by others that they only give one or two chances for an IV to be started before they leave and reschedule the test or procedure.

I fully understand the pain and frustration that comes with repeated IV attempts; however, if I leave, then I’m only going to have to return, and I expect I’ll receive a bill of some kind for the IV attempts I received if I leave without a successful IV. This mindset of leaving after one or two unsuccessful attempts sounds completely privileged and unrealistic to me. I stay and allow as many attempts as are required for a successful IV.

Am I the only person who feels this way? As people living with a rare disease or other chronic illnesses, we don't feel like we have a choice—we have to get our tests and procedures completed.

We have such a full medical itinerary as it is; to leave after one or two attempts means having to reschedule and fit everything back into our hectic schedules again. That’s not necessarily the easiest thing to do. For many, a lot must be arranged for the appointment in the first place, including work and school schedules, transportation, caregiver schedules, provider schedules, and diet restrictions. Not to mention the mental preparation that some of us require before medical appointments—especially when pain is involved.

Navigating difficult veins and repeated IV attempts

My veins are no longer reliable after decades of medical tests and treatments. They are deep and branch off a lot into smaller veins. They blow and collapse easily. I know to expect difficulty starting an IV, and I know that even when an IV is successful, it doesn’t last long for me, so I’m going to need another one sooner than I would care to. Therefore, if I were to leave after one or two unsuccessful attempts, I’d only be delaying the inevitable on repeat.

When the ultrasound machine and patience run out

I underwent a recent CT scan that required six IV attempts—two of which blew. I had never before had a technician tell me that they would try one more time and, if it wasn't successful, I would have to reschedule my test. But they did this time. I’m unsure if it’s because they couldn’t find any possible veins even with the ultrasound machine, or if it was the time of day, since my test was in the afternoon and they had already spent an hour and a half trying to get an IV started.

Mentally, by the fifth attempt, I was starting to become tearful, but when I was told that I might have to return to do this all over again, the trauma of another visit sent me overboard emotionally. I was fortunate that the sixth attempt was a success and I was able to complete the CT scan.

Finding your line: When is it enough?

At what point do we finally say, "Enough, we have to reschedule"? For those of us living with a rare disease, drawing that line is never a simple choice. We are constantly forced to balance the physical and emotional trauma of repeated needle sticks against the exhausting dread of having to reset our hectic schedules and do this all over again.

So, I turn the question to our community: How many attempts do you endure before you call it a day, and how do you decide when it's time to draw your line?