So More Possible Issues with Cameron

[DSRIGGS]

Cameron, whom you guys know has faced more than his fair share of medical issues since 2010 including severe depression, has been doing very well lately. He is in his 4th or 5th month at his new job where he is IT Help Desk support. It is a very well paying job for somebody without a degree. He is contract but the expectation is he will convert to full time and the end of the 6 month contract. He is also going to school full time again with online classes at the U of I Springfield. He also has a lovely young lady in his life that he is seeing and she is just finishing up Pharmacy School. She has been great for him and we like her a lot from the few times we have had her over for dinner.

In any case, Cameron had a pain pump installed for his chronic lower back and abdominal pain (didn't think it would really help the abdominal pain so that was a bonus if it worked) back last October not too long before my colon surgery. He had to have 3 subsequent procedures because he had CSF leak. That happened while I was in Cali having my procedure. In any case there are times when the pump itself causes him severe stabbing pain which it should not do. The pain Dr said there is nothing to do about that so they decided it best to remove the pump on 3/14. So the week before his pump ran out so it had to be refilled as alarms go off and he needed the med. Well the jackass Dr just put saline solution in it rather than the morphine he was on. He also neglected to give him anything to ween Cameron off the morphine.

Well two Mondays ago Cameron started puking, having a fever, diarrhea and intense abdominal pain. He thought he was having withdrawal issues, but the Pain Dr wasn't in so they said go to the ER. He went to the ER and the physician was very concerned with his symptoms (abdominal pain, fever and puking - ding, ding, ding) so he ran a CT. They told him the CT was clean so they sent him home. The next morning he went to the pain Dr office to see them as they had told him to do before the ER. The first thing the APN said was, "why the hell didn't they contact me I would have immediately ordered a cocktail for you to help with withdrawal symptoms". Not happy with the staff of that office at all, but in the end it is good he went to the ER. Anyway he got the cocktail that day and it helped. That was prior Wednesday I believe.

Fast forward to Monday - Cameron goes to his online portal to see his lab results and radiology report and it said:
FINDINGS: HEPATOBILIARY: Status post cholecystectomy. Ill-defined hypodensity is seen within the right hepatic lobe. GASTROINTESTINAL: There is thickening of the colonic wall. Scattered loops of small bowel are seen measuring up to 3 cm. Surgical clips are seen surrounding multiple loops of bowel

IMPRESSION:

1. Thickening of the colonic wall which may represent colitis. Clinical correlation is recommended. Follow-up is recommended
2. Mild prominence of scattered loops of small bowel in the left upper quadrant. Findings may be seen in the setting of ileus. No gross evidence of bowel obstruction.
3. Ill-defined hypodensity in the right hepatic lobe. Recommend non-emergent MRI with contrast for further evaluation

On top of those findings his liver numbers are all about 3-4 times the max range and several other things were out of whack, blood wise.

Sure, nothing at all wrong on that CT and correlating lab results? Really? He would have never known anything was wrong if he hadn't gone to the portal to look at these things. What the hell kind of an ER Doc doesn't tell you of those findings and if they suspected an ileus why in the world would they not at a minimum observed him especially since he had been puking? Even if those findings weren't finalized at ER time why the hell wouldn't they call him once it was finalized? Not freaking happy about that at all.....just not acceptable.

So yesterday he got into my GI who is also a liver specialist. He immediately ordered a scope to check out the suspected Colitis and possible ileus.. Additionally he drew numerous vials of blood to further test liver function and obviously for hepatitis. He also ordered an MRI (still waiting on hospital to confirm date) for the right hepatic lobe hypodensity, and recommended that Cameron see his oncologist (that is a bit of quandary as he will be 23 in two weeks but St Jude is his oncology team so we are in that stay with who you know and never receive a bill or Establish and adult oncology relationship).

The scope is first thing Monday AM under anesthesia as Versed doesn't knock him out. Hopefully this was temporary inflammation and not ulcerative colitis and hopefully he doesn't have an obstruction. When the colon twists it can cause Colitis so that could have been the case.

Then of course the liver worries us so hopefully that recommended MRI of which the F*CKING ER DOC never bothered to notify Cameron, gets scheduled very quickly and there is no need for an Oncologist. With his history of Lymphoma we are obviously worried.

BTW the pump and pain he has from what he thought was the pump is right around right hepatic lobe of the liver.

Another day in our life.......ALWAYS freaking something, ALWAYS and I am so damn tired of it! I was apparently a royal douchebag in my past life because Karma continues to beat the hell out of my family. We are hoping like hell this is another false alarm like the Lung Nodule, but as parents you always worry until you hear good news and we need to hear good news.

 

[DianaCox]

I keep hearing about situations with scans in which the radiologist's incidental findings of something potentially REALLY SIGNIFICANT are not reported to the patient (along with the findings of what the scan was for), nor are they scheduled to follow up. That's why I insist on looking at the original report.

Last October, Charles had an MRI with contrast to see how bad his re-torn inguinal hernia (repaired twice before) had gotten. He went to see the surgeon without me in November, who told him what he wanted to hear - that he didn't need surgery right away - so we went ahead with the move to AZ in late November. Sometime in early December, I decided to take a look at his MRI report - and was SHOCKED to see that they had diagnosed (among other things like calcifications in various arteries) a 3+ cm abdominal aortic aneurysm - which had not been mentioned to him.

I got him an appointment with the local hernia surgeon for as soon as I could (who said he could avoid surgery for a while longer), and then after I found a PCP I am OK with, got him in to see the PCP too. And I printed out the MRI report to make sure the issue was addressed. The PCP ordered an ultrasound - which found NOTHING. No aneurysm.

I don't know whether to be relieved, or to worry that the second test was wrong. But I'm still PISSED that the first surgeon in CA didn't bother to mention the "incidental findings" to Charles.

 

[DSRIGGS]

I know Diana it is insane. Even at Mayo they told me about incedental findings of a few lesions on my brain but no need to worry. Just keep your blood pressure low. Then the next day I go for a sleep study and I see there is an appointment with neurology in a month. I went to that area to find out what it was about because nobody mentioned that to me and I wasn't driving 6 hours in the Winter to Minnesota for a "hey are you feeling appointment". So the lady at the desk called to that unit and asked what the appointment was for because I hadn't been told of that I just saw it on my itinerary. She talked to another person and then handed me the phone and it was the Dr. He said your appointment is so we can address these lesions(cavernomas) and decide on a plan of attack so we can best handle this very serious situation. So this incedental finding that according to the hospital was nothing because it wasn't causing g my current issue, in actuality was very serious and the Neurologist was quite concerned.

I just don't how these things with Charles radiology report, Cameron's report and then my situation are happening. When a freaking report says MRI of the liver needed and colitis needs follow up as well don't these frickheads thing that somebody might want to relay that information to the patient? I would have to assume people are dying or having g serious repercussions from this type of negligence and these systems would be facing all kinds of negligence suits. Just crazy

 

[Munchkin]

People don't ever look at the reports. When the doc says you are OK, you walk away. But what the doc really should say is you're not dead yet! Hope all of these issues get resolved!

 

[southernlady]

Scott, sorry all this is going on. I hope y'all get a good resolution.

 

[Larra]

Scott, I'm so sorry! Poor Cameron, even if it all turns out to be nothing he has to go through a bunch more tests. He has already spent enough of his life undergoing tests and treatments, and this stuff is not fun.
I will hope for the best. Keep us posted. Lots of people here care about you and your family.

 

[DSRIGGS]

People don't ever look at the reports. When the doc says you are OK, you walk away. But what the doc really should say is you're not dead yet! Hope all of these issues get resolved!

Thanks Dariling

 

[DSRIGGS]

Scott, sorry all this is going on. I hope y'all get a good resolution.

Thanks hon.

 

[DSRIGGS]

Scott, I'm so sorry! Poor Cameron, even if it all turns out to be nothing he has to go through a bunch more tests. He has already spent enough of his life undergoing tests and treatments, and this stuff is not fun.
I will hope for the best. Keep us posted. Lots of people here care about you and your family.

Thank you my friend. I appreciate all of you here for your support and friendship.

He has definitely endured enough medical tests for 20 life times, and I think the colonoscopy clear liquid diet and prep is one of the most unpleasant things a person can do. The liver really worries me because I am afraid that even if it is not the C word it can still be something very serious with his elevated AST & ALT

 

[bearmom]

I don't blame you for being pissed at that not being mentioned. I won't go into the things I've found that weren't mentioned in both my parents and my medical stuff till things were put on line and I could actually see the test images, and the comments that were made at the time. Every person BETTER have an advocate that look up and follow through with all that if they aren't up to it. Sheesh. Also wondering WTF with that dr that KNEW Cameron would go though withdrawals.

At some point I may relay the story of my husbands broken leg (at least 12 visible breaks) and the day of shenanigans that ended up with several heads rolling months later at our local hospital. While horrifying at the time, and almost hard to believe with how absurd things were, looking back now it is really funny. I won't add to your current pain with stories of mangled legs, 110lb dogs, police, and fighting nurses (actually scrapping it out, down on the ground) right now, but did learn something from it, which was how to get totally incompetent people separated from their jobs when they endanger their patients lives.

While it may not be a "fire worthy" offense with Cameron's scans - or it may be - I absolutely think a complaint should be filed. I hope some of his issues calm and resolve naturally, but things need to be looked at more closely and thank goodness he looked up the records.

 

[hilary1617]

Sorry to hear that Cameron is having health and pain issues.

Sadly, there appears to be a fairly widespread, less-than-stellar track record of delivery of complete medical information to patients. You may recall that I found out about a cancerous tumor on my pancreas by ordering and reading my own CT report, six months after the MRI. Had the cancer been aggressive that delay easily could have been a death sentence. Thank you for the reminder that it is critical for every patient to always get and read a copies all labs, tests, scans, reports and records.

Hope Cameron feels better soon!

 

[DSRIGGS]

I don't blame you for being pissed at that not being mentioned. I won't go into the things I've found that weren't mentioned in both my parents and my medical stuff till things were put on line and I could actually see the test images, and the comments that were made at the time. Every person BETTER have an advocate that look up and follow through with all that if they aren't up to it. Sheesh. Also wondering WTF with that dr that KNEW Cameron would go though withdrawals.

At some point I may relay the story of my husbands broken leg (at least 12 visible breaks) and the day of shenanigans that ended up with several heads rolling months later at our local hospital. While horrifying at the time, and almost hard to believe with how absurd things were, looking back now it is really funny. I won't add to your current pain with stories of mangled legs, 110lb dogs, police, and fighting nurses (actually scrapping it out, down on the ground) right now, but did learn something from it, which was how to get totally incompetent people separated from their jobs when they endanger their patients lives.

While it may not be a "fire worthy" offense with Cameron's scans - or it may be - I absolutely think a complaint should be filed. I hope some of his issues calm and resolve naturally, but things need to be looked at more closely and thank goodness he looked up the records.

Thanks oh mother of bears. Sheesh sorry about your husband leg broken in 12 places but that sounds like one hell of story.

 

[DSRIGGS]

Sorry to hear that Cameron is having health and pain issues.

Sadly, there appears to be a fairly widespread, less-than-stellar track record of delivery of complete medical information to patients. You may recall that I found out about a cancerous tumor on my pancreas by ordering and reading my own CT report, six months after the MRI. Had the cancer been aggressive that delay easily could have been a death sentence. Thank you for the reminder that it is critical for every patient to always get and read a copies all labs, tests, scans, reports and records.

Hope Cameron feels better soon!

Geeszh Hil. I am sure I probably knew that about your diagnosis but my brain and memory are such a mess lately that I forgot. That is just so unacceptable.

We definitely always review records after being discharged when they show up online, but it such crap that they don't give copies of all that stuff before final discharge so it can be discussed. Had I known Cameron's CT showed a possible ileus we wouldn't have allowed him to be discharged without a discussion with the physician.

There is no doubt in my mind that hundreds of people have died or had a very serious hospitalization because of not communicating results to patients. I just wonder what freaking criteria are being used by some of these ERs to determine if a patient is admitted or discharged. I know that imaging like CT or MRI aren't always finalized right away, but what I have seen is that a resident often does the initial read and then the senior radiologist reviews to make sure there is agreement with findings. That being said there is obviously diagnostic findings reported to the ER Dr to determine course of action.

It still blows my mind that with Cameron's CT, symptoms (puking, severe abdominal pain and fever) and blood work that had numerous things considerably out of range that he was not kept for observation and treatment of symptoms at a minimum.

 

[Spiky Bugger]

Sorry for Cameron.

I mostly have the OPPOSITE, as in "Gee, sorry. Radiologist says it looks like multiple myeloma." Not a good thing because there is no cure. You just die.

I know I'd be mad if they didn't mention a real thing, but none of my labs so far support that dx...so instead of being rendered blissfully ignorant, I am perpetually Valium-deficient, awaiting my impending death.

 

[DSRIGGS]

Sorry for Cameron.

I mostly have the OPPOSITE, as in "Gee, sorry. Radiologist says it looks like multiple myeloma." Not a good thing because there is no cure. You just die.

I know I'd be mad if they didn't mention a real thing, but none of my labs so far support that dx...so instead of being rendered blissfully ignorant, I am perpetually Valium-deficient, awaiting my impending death.

Sorry about the notice of your impending death.

Cameron actually got one of those one time as well. Well Dad actually got it and freaked the fuck out. He was diagnosed with paraneoplastic auto antibody that leads to something called LEMS and like 99% of those people get small cell carcinoma in the lung and die. It turned out that the next time he was tested that the marker was no long present. We think it may have still been showing from his previous cancer. That being said I freaked out when I heard the original news of the antibody and did what all dumbasses do and immediately consulted Dr Google. I also got very worried when a growth showed up in his lung last year precisely because of that earlier marker.