A few weeks back I had an abnormal CT scan of the abdomen and pelvis. FINALLY! GI doc said it may be causing some of the symptoms, all of the symptoms, or none of the symptoms. Sent me back to my PCP for a referral to Urology. I spent two days calling all over the state to get an appointment with someone who A) takes my insurance and B) can see me before the end of 2015. Found a place just over an hour and a half away but they could take me in a few weeks. Perfect.
Well had that appointment today. As I mentioned in my previous post, this was one of the last hopes I had before hitting the chronic, undiagnosed illness wall…-again- Now, it’s hard enough to travel ANYWHERE beyond the corner store when you have a chronic illness. But my husband and I load ourselves in the car and start our adventure down South and up a mountain. GPS gets us lost and we end up in the middle of nowhere, over to east bumblefuck, and finally to the main highway up the mountain. Rushing because they wanted me there 15 minutes early to fill out paperwork. We’ll be lucky if we make the actual appointment time. I call and luckily they are very nice. I HATE being late to the doctors, mostly because more than anything I hate waiting on them, so why should they wait on me? And make the next appointment wait. It’s just unfair… but I’m getting off topic.
We finally make it, 1:30 on the dot. It’s a cute historic building in an old downtown, very small town, but adorable nonetheless. Good choice, Doctor. Classic. I’m promptly checked in. They ask me if I have records, they’ve been calling my PCP but no one would answer and then magically the fax machine is down… again… pretty much every day since February. My husband pitches in, “they’re useless”. He’s had the pleasure of attending my appointments these past few weeks. I think he finally sees my frustration. Good, I feel validated. I try to lighten the mood, “I’m actually looking for a new doc….” It’s not a lie. I just don’t have my hopes up anymore, but we’ll see how that appointment goes. I hand over my giant book filled with records from the last five years… tests, doctors notes, referrals, pictures… the ones that magically disappear in the faxing process. It’s easier if I do it myself, after all. I fill out my new patient paperwork and then we are promptly brought back to the exam room.
Almost immediately, the assistant comes in. He seems nervous. Was it my extensive organizational skills intimidating him? Or perhaps, it was all the tests with no answers and the copious amount of doctors that gave it a shot, minimally of course. Well, it was neither. He explains, he saw the CT report I sent in with the referral shortly before lunch. But they figured we were on the way already, not worth having us turn around, and now I am sitting in the exam room having already paid my co-pay. Although Nutcracker Syndrome does involve the left kidney valve, it’s actually NOT something they would see or treat. I’d actually have to see a different specialist. He takes my blood pressure. My husband’s temper is about to take off, I feel the pressure change in the exam room. He says the doctor would be happy to tell me what he knows about it and discuss the cyst on the left kidney as well. He leaves. My husband is not a very happy man at this time, after all the way we’ve come and what hope we had in maybe finding some answers. I tell him, “Well, we can at least find out if we need to worry about cyst and possibly a referral to the RIGHT specialist”. (Look at me being the positive one for once… again… my husband is no finally seeing how awful this experience is).
The doctor comes in with a textbook. Here we go. He reiterates what his assistant says, this is not his area of expertise, BUT at least he knows what Nutcracker Syndrome is. He tells us the size of the cyst would cause no symptoms. Actually, it could be the actual size of the kidney and cause no problems or symptoms. Good to know. I learned ONE thing new today. He opens the textbook to a diagram of the veins surrounding the kidney. He shows me the renal vein and it’s relationship to the Superior Mesenteric Artery and the Inferior Vena Cava. He put’s into plain terms. I get it, though. I’ve done my research. He’s chatting on about how it can be compressed and how sometimes that things like this can influence other things, I’m playing along. After a bit of time, I ask, “So I know the vein is still flowing but is dumping into my lumbar plexus, which is associated with nerve endings in the abdomen. Am I right? Could this explain some of my symptoms, or be related to the flank back pain and pelvis pain, which could ultimately influence my digestion or radiate pain upward?” He’s onto me, he know’s that I know too much. He apologizes that he couldn’t be more help but he can send a note if the PCP needs to know why I need a different referral. Like they’d ever get the fax. But I thank him for his time.
My husband drives us down the mountain and back up the highway to be home. He missed work for this and I have been on leave from work to get better. Another wasted day. Now I’ll have another full day of phone calling every vascular surgeon in the state to see who is accepting new patients with my insurance and see if I can get in before the end of 2015. Also, add another day of fighting with my PCP to get a referral elsewhere, which, again, I will not only have to find the specialist but fax my own records as well.
I often wonder, after weeks like this, when is it time to stop searching for an answer? Maybe I should suffer through each day, slowly killing myself, for mediocre? It would be less stressful. I’m running out of time, I can’t NOT work forever. We’re not rich and I do like my job. Haven’t gotten a paycheck in almost two months. I’m still appealing. I can’t find a lawyer close to me to take my case. I’m having to drive an hour and a half away, in the other direction, to find help. Doctors, Lawyers, Everything is too far away when you’ve been so sick, let alone hours away. But it’s not going to get better, especially without a diagnosis. Or a plan. Or a gun. (just kidding). In all seriousness though, the true dilemma is finding a way to balance work, school, coordination of care, appointments, friends, family time, ME time, without sacrificing my health. It’s too fragile as is. I’m already paying for our trip today.
“I know I need
To lift my eyes up
But I’m too week
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn”