We start off having symptoms which we self explain away or try to treat ourselves before we even pick up the phone to call a Doctor. That is normal because of time we have to make for an appointment, expense, time away from work or other obligations. Then we realize we haven't been successful so we reluctantly pick up the phone and call our PCP. Usually you can get in to these within a week or so. They examine order tests which you then schedule time to complete and make a follow-up appointment to obtain results. If you are lucky they do start some form of treatment for the symptoms. Next we return to find out that it will now requires a specialist which falls on us to find then schedule the appointment. This is where it becomes a little more difficult with a longer wait time to get in. If you are lucky you did in fact land in the correct specialist so they order tests, we schedule/complete then wait a long time to get back in for results. Again, if lucky enough to be in the correct speciality they can then diagnose and start the appropriate treatment. If not so lucky you learn that your lab results fall into a different speciality so again start the search for another Dr, wait to get in, have additional tests run, wait for an additional return appointment before we get to start a treatment. By now we are at least 6 months or more into trying to find answers and a treatment.
If we are waiting for confirmation of a heart issue, kidney issue or even cancer this wait time is hurting us if not decreasing our survival rate. For a year I have been in pain, a symptom of an abnormality which has increased to almost an intolerable level even while on a pain medication. A year of knowing my Rheumatoid Factor is excessively high at 267 with the normal being 14. A year of jumping from specialist to specialist having additional blood work and some type of radiology testing completed. Most of these labs are back within a week of being collected but have waited a minimum of 4 months for each return appointment. Now, I also can see the the lab results which doesn't take a lot of time or talent to look up and see what abnormal levels can point to. By my next return appointment I have a good idea what is going to disclosed to me but praying for a different response. Then the director over the Rheumatology Dept comes in and explains that yes a high Rheumatoid Titer is usually indicative of a disorder in our speciality such as RA, Lupus, or even Sjogren's. Unfortunately other lab results do not support these diagnoses. Ok, well that blew my bubble but didn't shock me. She went on to explain that they also see this high level with 2 other conditions; infection or blood cancer such as Multiple Myeloma or Lymphoma. Infection had also been ruled out by this time so now we have to look at what my other abnormal labs are showing. Unfortunately I also have light bands, abnormal proteins, and a few other things that point to one of these diagnosis which also matches the symptoms that I had listed, including the pain and it's location. So now I have heard what I pretty much knew was coming so the next step is moving to the next speciality, Hematology.
I left this visit extremely sick. I had felt bad prior to arriving and all I wanted was to get home, crawl into bed, turn on the heating pad, take a fast acting pain pill and see if I could get to feeling better then I would start the process of finding a Hematologist. This was a little easier as the same group had one on staff but the wait time to get in was 5 months. So now I am a year and a half into trying to find not only answers but even a medication to help me feel better. That is a LONG TIME TO GO FEELING BAD, GETTING WORSE, AND WAITING FOR A CONFIRMATION DIAGNOSIS & TREATMENT. One would think that knowing it is possibly cancer that they could somehow speed up the next appointment. The appointment desk had the referral, had the listed reasons for the visit and what needed to be looked at. When I questioned if there was any way to move this appointment up I was told no, but would be put on the first call list from cancellations. No, I don't think I am more important than someone else but how many in front of me are routine visits? Is it not possible to fit a pending diagnosis in earlier? Next, what other tests lay wait in front of me getting diagnosed? What will the wait time be to return to get these results?
Whether it's cancer, auto-immune, cardiovascular, renal, digestive, respiratory all systems have urgent issues that requires early treatment to prevent advancing or harm. ER's triage their visits according to severity. Is it not common sense to do this with scheduled appointments? What has all this wait time created that early treatment now can't fix? Does this even increase my mortality chances? Yesterday I read a statement released by a well known person who indicated she had been diagnosed with breast cancer. According to her own words, she had her ultrasound, results, and first Oncologist appointment all on the same day. She went from testing to knowing what her treatment plan was. She was so fortunate to be able to accomplish this which makes her survival rate really great. Do we all need to be well known to receive the same advantageous?
What are our options? Do we have many if any? Call around to search for other Specialists with a shorter wait time even if it means leaving our community. Stay on top of calling the office to push for a quicker visit. Try to get your other Drs or PC person make calls to see if this might help. Possibly even talking to our PCP about ordering tests that will be needed by this new Specialist so results will be there on day one. Do any of you have any ideas? This would be a good time to share any experience you may have had to cut wait times. Please respond under comments so I can share. This is a good opportunity to help others just starting this process.
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