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.

 

 

My Earthly Rock… Part One

The last couple of months have been heart wrenching.  My dad died.  He was 83 years young, and until the end, he was very active.  A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm.   He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died.  But let me back up a bit.

My dad had always been pretty healthy.  He had the standard appendectomy and gallbladder surgeries.  He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation.   This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve.   When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer.  I wasn’t (and still am not) very happy about that.  I feel he should have been seen in person.  Just as a matter of good care for something that wasn’t part of dad’s history.  Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean.  During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go.  He felt bad enough after that to want to get home as soon as possible,  to see his own doctor who finally ordered an x-ray when he got back.  X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing).  The x-ray didn’t show much besides some normal aging changes.  The doc also gave dad some pain meds, which did help a bit.  But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field).  He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements.  The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back).   The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day.  He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them.  The next day, Thursday March 3, dad called me at 8:00 a.m.  Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine.  Dad always respected that, so I knew that if he was calling, something was really wrong.   He said he couldn’t walk right.  He’d gotten to the bathroom, but needed me to get over there as soon as I could.  I asked him if I had time for a shower, and he said yes.  I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum.  When I got there, dad was sitting on the bed.  He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool.   I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room.   After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests).  Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI.  Dad was not amused, and was very anxious about the whole thing.  He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft.  He said it wasn’t so bad.  The results weren’t so good.  They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine.  It was enough to admit him.   And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free).   The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI.  He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up.  Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979.  SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills.   But first,  more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk.  He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands.  The pain at this point was the worst, but only really bad if he had to move.  I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain.  Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference).  But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened.  He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read.   Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home.   At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab).   He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would  only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT).   He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home.   So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

…. on to Part Two.