Category Archives: medical mysteries

Is This Really Necessary?

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The labs came back on Terry’s blood work, and he does have a urinary tract infection that is being treated with a 90 day course of oral antibiotics.  Because they identified the cause of the blood in his urine as the UTI, we were surprised to find out he is still scheduled to have his bladder scoped tomorrow afternoon.  While I obviously want them to find anything that is medically wrong with him before it becomes a major health threat, I am starting to question how much is done in the name of effective diagnosis, and how much is done in an attempt to prevent liability suits from being filed.

I understand if there is a risk of cancer, given his history, that it may make them want to conclusively rule out its potential.  I get that.  But if they’re concerned about cancer in the bladder or urethra that would encourage them to do more comprehensive testing, why are we not aware of their concern?  It’s a frustrating dance we dance of too much unnecessary or repetitive testing that they want, and not nearly enough of what we think would narrow in on his problems.  Because of his Medicare and supplemental coverage, doctors are all but guaranteed to get reimbursed for their services.  I don’t want to start traveling down the road of cynicism, but it’s harder all the time to consider all they do as strictly in Terry’s best interests.

When I take a step back and try to look at the situation objectively, I’m forced to admit that of all the medical events he’s been through, not one of them was easily or quickly diagnosed.  From that perspective I should be glad they are doing too much if it means they stumble on to something that may truly be problematic for him.  That’s how the pheochromocytoma and thyroid cancer ended up being diagnosed.  As a result, I know I shouldn’t complain.  Doctors have gotten lucky when we’ve needed them to be.  Evidently I’m thinking skill and expertise should trump luck.

We’ll have to see where it goes tomorrow.  Chances are (hopefully) that they won’t find anything.  We’ve been surprised before, but maybe the surprise this time is they don’t find a problem or additional health risk to monitor and follow.  It COULD happen….

 

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Starting the Search Again

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Terry had an appointment today with the urologist.  He’s been having some blood in his urine that continues to come and go.  They did labs and a urine sample, and he’ll go back in a couple of weeks to get scoped and look up into the bladder.  Hopefully we’ll hear back fairly quickly on the PSA, and whether it’s elevated from last year.  They’re leaning towards chronic inflammation, or prostititis as the culprit, but have to rule out the chance it’s cancer in the bladder or urethra.

Interestingly, as we waited for the doctor to come in I was reading a magazine article talking about the increasing number of patients who cannot get a conclusive diagnosis.  There are approximately 23 million Americans who cannot get an accurate diagnosis of their medical problem.  I know that Terry has never had a condition that was easily or quickly diagnosed, but the number 23 million seemed staggering to me.

That’s 23 million people, as well as the people around them, who are dealing with chronic health problems of an undiscovered cause.  I know the frustration we’ve endured trying to get a diagnosis, or at least an idea of the cause of Terry’s vomiting.  I know that when they’ve been unable to tell us what he’s experiencing, they’ve attempted to deflect their inadequacies at diagnosis by making it Terry’s fault.  If they can’t figure it out, it must be because it’s psychosomatic, or all in his head. I had no idea there were so many other Americans out there dealing with the same disruptions in their lives, not knowing why something was happening to them.  It’s the type of club you shouldn’t want to join.

It’s a sad commentary, in light of what health care costs are in this country, that there is such a level of substandard care.  The article listed 3 reasons it’s difficult to get a diagnosis in difficult cases.  One is the result of medical school training that says to look at the most common reasons for the symptoms being exhibited.  It also talked about a reliance on labs and testing, and finally, the overuse of specialists.  It’s easy to see how the that trio of actions can work together against the patient if it’s a rare or unusual condition.  If doctors only look at what labs and testing can tell them, and if specialists only consider their discipline, it’s going to limit options.  When a doctor only considers those conditions that are more common, it’s hard to get that thinking out of the box.

I’m sure there are no easy answers, but I do know that it requires extra vigilance on those who have health concerns, and those who care for them, to keep pushing until the diagnosis is made, and correct.  There is no hope for effective treatment when you don’t fully understand what you’re treating.

So as we enter yet another phase of finding out what we’re dealing with, I encourage you to keep pushing when necessary, to get the answers you or someone close to you needs.  We have to advocate for ourselves and the ones we love when it comes to health.  There is nothing more important than your health, and nothing more worthy of your time than making it all it can be.

 

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Doctor, Doctor Give Me the News

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Terry had a follow up appointment with the cardiologist two days ago.  Dr. Brown has been really good about seeing him more often post thyroid cancer and pheochromocytoma, so it was a chat about how things are going.  It truly is hard to know how much those two separate conditions played into his overall cardiac health, so I have appreciated the additional visits with him.

It has been frustrating, however, that he has not been willing to consider how the nausea and vomiting that have occurred for almost seven years might be tied to his cardiac condition.  After some discussion regarding theoretical causes, he was willing to consider a problem with either a blockage or potential limited blood flow to his intestinal system.  Dr. Eck, his endocrinologist, has supported that idea with us, so we were able to secure a referral for a dye contrast scan to look at blood flow.  

He gets that scan on Tuesday, the 10th of May.  That gives us the opportunity to get those results to KU Med for his appointment with the GI department the following week.  It was the vomiting that prompted the referral to KU Med last year, but once they found the other problems the vomiting issue went to the bottom of the heap.  Discovery and treatment of the two conditions last year did not have the additional benefit of eliminating the nausea and vomiting, so we have hopes this test may yield information.  There has to be a physiological cause.  End of discussion.  Just because they have not determined what it is yet does not mean it is not real.   

All things considered, his cardiologist is pretty encouraged he’s doing as well as he is.  Terry did admit to him, and had not admitted to me, that he’s noticing he’s getting winded and needing a break if he’s out in the garden or trying to work on something for 30 minutes or more.  There have been several times when I felt he was breathing harder than usual, but he always minimized any concerns.  Listening to him confess to the cardiologist confirmed what I’ve noticed.  He’s not having much swelling to his hands or feet yet, so I hold onto that piece of good news while we have it.  

While it won’t surprise me, it will be disappointing if we find out his nausea is a by product somehow of his cardiac disease.  I realize everything he’s gone through has been difficult to diagnose, which I reminded Dr. Brown, but I have pushed hard on the cardiac side of things for answers for a while now, and we could not get any doctors, much less the cardiologist, to consider the connection.  As long as we finally get some answers I’ll forgive him if it turns out to have a cardiac component.  We just need to know.
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Does Quality of Life Matter?

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After Terry had a three day hospitalization earlier this month, we have decided it’s time to ramp up the diagnostic end of things again.  The hospitalization was for the extreme vomiting, which we truly had hoped would abate in time after his surgeries last year.  It has not.  Apparently we are no closer to understanding this than we were in November, 2004 when it all began.

To that end we are headed back to the GI Department at KU Med next month.  There’s a part of me that thinks we need a predetermined amount of time we will invest without answers, and then request the referral to Mayo Clinic.  I had originally believed if we found out the problem locally it would make whatever treatment was deemed appropriate easier if it was all within the same facility.  That no longer is a concern for me.  I, and the rest of our family just want answers.  It has impacted all of our lives for too long, and has taken too much of a toll on Terry to go through this so often.  Aside from those considerations, we would just like some semblance of normalcy in our lives.  With recurrent vomiting that presents the possibility every day, his, and by association, our qualities of life have suffered.

He’s awakened early each day with discomfort that leads to pain, and pain that leads to eventual nausea.  Whether he ends up getting sick or not is anyone’s guess, and we never quite know until he starts feeling like he’s past it whether it will go away or lead to the uncontrollable vomiting.  As a result, he’s uncomfortable riding in the car for very long, and I’m reluctant to make any more air travel arrangements for him given the uncertainty of each day’s potential for vomiting.  Not much fun for him, and not much fun for me.  I’d like this time I’m at home with him to be an opportunity for us to do things together and travel some while we can.  We talk about traveling, and “plan” short excursions, but don’t seem to make it far from home.  When it gets down to it we’re both afraid he just won’t be able to do it.

As frustrating as it is to feel like quasi hermits, it’s even more frustrating to not be understood by medical professionals.  There’s a tendency by healthy individuals to gloss over notions like quality of life.  When someone has faced life threatening situations, multiple times especially, it’s easy for others to think whatever life we have together should be satisfactory, because he is, after all, still with me.  I understand the motivation in telling me that, but being on the receiving end of attitudes that essentially say it doesn’t matter if our lives are less than satisfactory if we are still together, feels a bit like being unvalued.  I don’t care much for that attitude, and think if they could live this life for a while they would understand.  They would want answers, too.

Just because doctors and specialists have not been able to diagnose his problem does not mean we should just give in and accept this way of life.  Terry is still too vital a person, and we are both too young to be expected to just accept this is how life has to be for us.  I refuse to, and am thankful that our primary care physician is on our side and supports what we do.

I spoke with him after Terry’s discharge, and asked about the possibility of a letter from him for Terry’s file at the hospital.  When I take him in, they do not start any fluids or meds until they’ve scanned his abdomen and run labs on his blood.  While I appreciate they have protocol to follow, from my perspective it’s just additional costs to Medicare that are unnecessary.  We have been through this too often to not recognize the symptoms when they rear their ugly heads.  I’m hopeful if they start IV fluids and anti-nausea medications faster than they have in the past, it may help end the vomiting sooner, and that would allow him to go home, rather than be admitted yet one more time.  We received a copy yesterday of the letter our physician submitted to the hospital to be put in his record.  It may not help, but at least it feels like getting a little bit of control.

Control is good, but answers are better.  As he goes through additional testing and diagnostics, I’ll try to keep this up as a chronological record.  It seems like to much to ask for, but if they can’t diagnose and treat, I hope they can at least give him tools to help cope.  Whether it’s a medication or a behavioral change, he needs something.  I may need something myself if he doesn’t get it!! 


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We May Be On To Something

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After beginning with the Internal Medicine Dept at KU Med Center, Terry had his first appointment with the gastroenterology side of things. Once again, we met with a third year intern, and again, he was interested and inquisitive and for the first time we felt heard.


He did have some ideas to pursue, and this is really the first time we’ve had any type of hypothesis about what’s happening. Results of the CT Scan he had at the last appointment at KU Med showed a mass in the adrenal gland. They aren’t sure what it is, and will be referring him on to possibly an endocrinologist. They will also do a CT Scan of his head to look at his sinuses, but also to look for the potential of a brain tumor. On the bright side, the doctor did say if there is a tumor, the likelihood is that it is benign. If it were malignant with as long as Terry’s had the vomiting problem, he would be dead by now. Yay…..

Additionally, they will be checking for steroid levels, specifically the hormone cortisol. There will also be a four hour stomach dumping test, and a blood test which would indicate if it is vagel nerve related. The intern spoke of potential causes for the vomiting, and concluded his conversation with us by talking about cyclical vomiting, which is not diagnosed as to the cause. They do all the tests to rule out potential causes, and when left with nothing, term it cyclical vomiting.

After feeling optimistic for the first time in a long time that we might actually be making some headway, the supervising physician began by talking about cyclical vomiting. Terry had stressed with the intern that it was primarily pain now that was the issue, and not so much the nausea and vomiting. To begin the discussion with us by talking about having a condition with an undetermined cause felt like he was following a blueprint of diagnostic tests that they all follow.

I could feel myself becoming increasingly frustrated and irritated by this physician. We explained that much of what he was recommending, Terry had already been put through. I told him we needed to do something different if we were going to figure this out. So, to a certain degree, what I was trying to avoid with repetitive testing that was always negative was what he was going to experience. If it gives us the answers we need, it will be worth it in the end, but I can tell I’m losing patience with not knowing why he goes through this. The increased pain and disclosure that they’ve found a mass in his adrenal gland is making me think that this may be something that should have been, and could have been found much sooner.

I’m hopeful that’s not the case and we’re finally on track to find out the cause of his pain and suffering. I know we’re both weary of living like this.
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