Single People with Dead Family Must Be Meant to Die, Too

Because getting help for medical issues in RockTurd, IL is like pulling teeth from a parasite.  Since January of this year (2018), I’ve had symptomatic gallstones.  Now, they’re VERY symptomatic.  During the workup for the gallstones, it was noted that my kidney and liver function tests were off.  Got those figured out (not an issue for surgery), and then I broke my ankle.  Was having some issues getting enough fluids in (and was putting a tube into my own nose for fluids), and wanted some help with that from the GI folks… but I never got to tell the NP why I was there.  Gastroenterology Nurse Practitioner (of all of 5 years- barely even a nurse, and didn’t look like any actual time BEING a ‘real’ nurse) ordered tests irrelevant to why I was there- but went OFF on me (like needed medication adjusted) after I apologized TO HER for sounding abrupt.  The tests felt punitive, and because it’s MY body, and I knew WHY I was there, and can’t do any of the follow-up (transportation and physical limitation issues), I won’t get the tests done.  Period.  But my reasons were seen as irrelevant.  And the facility had nothing to say about how I was treated, and seems to think the angry NP’s shit doesn’t stink, because they still want tests I’d had done in 2016, with no change in THOSE symptoms redone.  Nope.  Not until you hear me out- but since I won’t ever go back there, won’t happen.

Well, then the OSF surgeon decides HE won’t do anything until I get the GI doc’s tests done- and CANCELS my appointment so I could show him what looked like an epigastric hernia.  Didn’t want to hear from me at all.  SO, I- the actual patient- was irrelevant to my own healthcare here in ROCKTURD, IL.   THANKS so much, Dr. Barteau.   Because you disregarded me in my own healthcare, I was able to find someone who DID listen, and is willing to talk to me- not AT me about another doctor’s orders for tests that were already done.  But you wouldn’t let me tell you because YOU cancelled my appointment that I’d waited WEEKS to get.

I opted to go on Palliative care at this point- if I can’t get real help, then let’s focus on symptom management and stress relief- and then THEY don’t follow up when they KNEW that their staff were sick but didn’t let patients know of any changes in scheduling or when to expect contact.  Really?   No communication?  So, again, not relevant to my own healthcare. Not considered at all… not worth an e-mail.

I got a referral to another surgeon with another medical group – and he is SO nice.  He got things all set up, and surgery is scheduled.  I had a ride there. I have someone to pick me up, and get me home, and stay with me (rent-a-nurse, as my family is dead or out of town, and the few friends have lives).  Today, I decided I better be sure I can just be dropped off and picked up – and of COURSE NOT.  I have to have someone who knows nothing about me, being paid to sit in the hospital doing nothing, so the hospital won’t CANCEL THE SURGERY.  The “rules” aren’t for my benefit !  I’ll be laid out on the OR table.  And if something is screwed up, I don’t have anybody alive who’d sue.  So, I’ve got to have surgery alone (essentially), some stranger is more valuable than I am in my own care, and random rules don’t address individual situations.  It would be much safer if I stayed overnight if they’re that concerned.  But that would cost the hospital more money.  Can’t have that.

So, I’m the only single, family-less person with friends who have lives in the entire city?  I highly doubt it !   SO how many people die here each year because they simply get tired of fighting to be part of their own health care?   I don’t see the value in pursuing any future medical care here. And I can’t move somewhere with good healthcare (again, physical limitations). So, I’m done.  If something happens to mess up this surgery, I will die when my gallbladder gets so irritated it blows up (like appendices do).  I’ll get peritonitis, and after a few horrible days, I’ll be dead- and that sounds SO much less stressful.

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.