Wednesday, October 17, 2018

Scared. Anxious. Frustrated.


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:

Theresa Allinger said...

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!

Irene Dwinnell said...

Kristen, thank you for sharing this update. I join you in in whatever capacity I can from afar. Sending you light and love, Namaste������

Judy said...

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.