Today’s blog post is a
major medical update--it is a lot of news and rather clinical. I began writing
this blog in 2013 with the purpose of giving my health updates to those near
and far--this is one reason I write. The last few weeks have been emotionally
and physically draining. Here we go:
As most of you know, I
have been battling chronic pain since last May due to a bladder condition
called Interstitial Cystitis, along with an inflamed kidney that I have been
trying since June to get taken care of. Due to some extremely unprofessional
care on the part of some doctors, plus the system itself, and many insurance
disasters, I had to wait months to finally be seen by the kidney
specialist.
I will spare you all
the many details that I have been chronicling for months in case there is a
grievance or even a lawsuit ahead of me. For many of you this is a review, so
hang in there.
In June I had a scan
that showed I had an inflamed kidney and obstructed ureter. I had this scan
because I went to my primary care doctor in extreme pain. She referred me to a
urologist and it took five weeks for that to get authorized and for me to be
seen. He told me this was partly my IC condition (flare up), but he wanted to
refer me to a kidney specialist. This was on July 11. It took my insurance and
the medical practice until September 9 to get me seen by this specialist
(months of continued pain while I waited). When I saw him on 9/9, he could not
find my scan image nor my notes within my chart! Let’s remember that I am at
UCSD which is supposed to be one of the top medical institutions in the
country! And somehow my images and notes go missing? So he scheduled me for a
new scan and told me to come back in three weeks. And then,
to top it off, my insurance and his office made many mistakes and I did not get
the scan for another month.
Last week I finally got the scan. I attempted to get an
appointment within the week to have the doctor read the new scan and was told,
“He has a very busy week.” With a few extremely firm phone calls, they finally
gave me an appointment during his “very busy week” to read the scan. I also
called the Imaging Office so I could march in to pick up my own copies of the
reports and CD's so I could be assured if I took them myself, he would have
everything in his hand. I took copies of the CD’s and reports from my
scans dating back to April. I am telling you all that I have to be my own
advocate in this health and insurance system and so do you. The problem is that
it is so exhausting, frustrating, and time consuming.
With my arsenal in
hand—the copies of the CD’s, the written reports, advice from my two doctor
friends who gave me questions to ask, I headed into the appointment last
Thursday.
These are the results
of the scan: I have a severely inflamed right kidney and obstruction in my
right ureter. (Duh—excuse me, I have known this and FELT this pain since June).
The scan also showed a mass in the pelvic region (not attached to an organ)
that seems to be pushing on the kidney giving it “distress”, thus causing more
pain. The scan did not show cancer in any of my organs, but the mass needs a
biopsy.
I left his office with
an action plan. He put in orders for STAT/URGENT because I told him that if he
doesn't do that, then my insurance takes their sweet time.
The first order is for
a biopsy of the mass. I do not like hearing the word mass. I do not like
hearing the word biopsy.
The second order is
for a procedure to put a stint (plastic tube) in the ureter so the kidney can
drain, and this should alleviate the inflammation. This will be under general
anesthesia, a short procedure and out patient, so no hospital stay. The stint
could be in up to three months and he will check by scan to see how the kidney
is doing.
So where am I today,
one week after I was seen by the kidney specialist? I was given an appointment
for the biopsy consult for today, however, OF COURSE, even though the orders
were URGENT, after speaking with my insurance yesterday, it was still NOT
approved. This resulted with a cancelled appointment this morning.
Yesterday afternoon I
spent four hours—equaling my entire afternoon (I told you all that this is a
part time, almost full time job) on the phone with nurses, schedulers, my nurse
advocate, insurance, and finally Thomas who is a liaison between my primary
care practice and insurance. Thomas has been a soldier for me as he intervenes
and gets things done when I call with my insurance woes. By the end of this
long afternoon, Thomas had all my nurses and schedulers phone numbers and names
and was directly calling them and my insurance to ensure that orders and
authorizations and appointments are in process and will get done. I know it will
happen, because he has done this before with great success. Thank you Jesus for Thomas!
As of right now, I
have a biopsy consult for Monday, October 22, and an appointment for the stint
procedure on November 14. I still need to get the biopsy procedure and I need
authorization for all appointments.
How do I feel during
all of this? Scared. Anxious. Frustrated. Scared. Anxious. Frustrated. On
repeat. Exhausted. Overwhelmed. Wiped Out. Exhausted. Overwhelmed. Wiped Out. On repeat.
I
will leave it at that today. I know this is all very clinical, but it lets you
into a window of my world right now. Thanks for being my champions with your
love, support, and prayers.
3 comments:
Oh Kirsten, I'm so sorry this has all been so hard. I'm praying for you and I am available most any time if I can be of any help! Please let me know!
Kristen, thank you for sharing this update. I join you in in whatever capacity I can from afar. Sending you light and love, Namaste������
Oh damn. What a mess. Know that I join many others in continuing to think about you and pray for you. This is all so unfair. Wish there was more that I could do for you.
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