What a Difference the RIGHT Doctor Makes..,

I haven’t written many blogs on the totality of what has gone on this year with the physical challenges, and trying numerous times to get some  help.   Today, I saw a surgeon who is compassionate, kind, and smart.  He’s a military doc, so I’m guessing he’s had to do a LOT of really intense things- my gallbladder will likely be like popping a zit compared to putting a blown up soldier together again.  But he made me feel like MY concerns were just as important as anybody else’s.    Surgery is scheduled.  It’s gonna happen.

How this has played out this year:
– late January, I started noticing right upper quadrant pain
– early February, getting worse- but now kidney function labs look pretty bad, so off of “good” reflux med, and the battle to stay hydrated got much worse.
– went to see surgeon, who said gallbladder needed to come out.
– went to GI appt. to see if I could get some help with fluids (i.e. a j-tube) to SAVE MY KIDNEY FUNCTION – not an easy way to get drunk (I don’t drink alcohol).   That bitch of a nurse practitioner lit into me like I was the last living Nazi, and ordered tests for something I’d had tested, and was not the reason I was there- it all felt very punitive.
– FINALLY saw nephrologist (order got lost, but when I asked about it, I was told they’d call me… well, not if they don’t have the order.
– got news that kidney issues were related to dehydration from nausea (gallbladder). He gave me instructions on what to do with meds if I couldn’t keep enough fluid on board, and told me to keep putting the nasal tube into my stomach to get fluids in, however it had to happen.
– got OK to go back on good reflux med.  Easier to get fluids in.  Pretty much down to liquids and foods with no fat and little protein.
– broke ankle June 2
– 7 weeks of ankle splint, and still not back to normal.
– made appt to go see surgeon again, who (3 hours before the appt I’d waited weeks to get)  wouldn’t see me until I got the UNNEEDED GI tests done- and wouldn’t even let me come to the appointment to talk to him AND show him a split in my abdominal muscles with a bulge that he might want to see before surgery.   Would. Not. Even. Let. Me. Come. To. My. Appointment.    (Thanks, Dr. Barteau- but really, THANK YOU- I found a doctor who is willing to include me as part of my own healthcare).
– got referral for palliative care to focus on symptoms, and quit trying to get blood from a medically deficient turnip.  Nurse came out.  Never heard from anybody else. Called to cancel their “services”, and was told that they’d had sick staff.  Had I been COMMUNICATED with, I would have been accommodating.  But nobody let me know why I’d met with palliative silence.
– to ER for second time with blinding left sided abdominal pain; name of surgeon given to me from THEIR medical group.
– my primary doc moved out of town, so started with a new PCP.

And that brought me to today.  He couldn’t have been more kind.  Surgery is scheduled, and the abdominal and pelvic CT w/w-o contrast was done, for a structural study that showed that the crap the GI folks were looking for was irrelevant.  There are no structural issues making surgery risky.  I understand the first surgeon wanting more information- but why want tests that were irrelevant to my gallbladder?  And why was MY information about MY body ignored?

At least now, I can see an end in site to the abdominal pain.  I’ll have a month to get ready (including a trip to the apple orchard).   Maybe things will get better.

 

 

Well, No More Palliative…

And I’m more than bummed in some ways, but in other ways, I’m really OK with it.  But, considering where I live, and my experiences with the medical folks here, it’s not that surprising that it’s been frustrating.  It’s been 16 days since the nurse was here to meet with me for being on palliative.  I was told that the chaplain and social worker would contact me, to set up a time to come and meet with me as well.  I haven’t heard from anyone.   When I called the nurse today, and asked to be taken off of the list, she asked if something had happened, and I basically said “Yeah- nothing!”.   She told me people had been sick.  Had I known that (COMMUNICATION), I would have understood.  Why can’t someone just let a person know that they weren’t forgotten, and someone would be in touch as soon as they could.  I can understand THAT.  Even a 15 second e-mail… that would have been enough.  I could have sent my well-wishes for the sick staff  in a reply.

At the only meeting, I was basically told that there were much sicker patients than myself, and what did I want from palliative- which sounded like I didn’t belong.  The next day on the phone, it didn’t seem to be an issue, so I didn’t bring it up.   I know there are sicker people out there- I used to take care of them !   But this isn’t a competition !   When I mentioned knowing that they had sicker patients, she said that she didn’t mean it that way… OK. that’s fine.  Good to know.   *thumbs up*

Ended up OK- should I decide later on that I want to try palliative again.  But for now, I’m on my own. Again… or is it still?   I see the gallbladder surgeon on Friday (with a completely different healthcare system in town)… once the gallbladder is out, my days with doctors will be few and far between.   Seems much safer like that, and if not safer, at least much less frustrating.

“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?