Doctor, Doctor Give Me the News

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.

Does Quality of Life Matter?

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!!