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!! 

The Longer We Go The Less We Know

Today was a follow up to last month's hospitalization.  We're going to have to get some definition and parameters around "it's going to take some more time" as that's about the only explanation we seem to get to Terry's most pressing issues right now.  Somehow it seems quite inadequate when it's been so long that we've been looking for answers.


His hearing, which has never been good, has been markedly worse since his surgery this past summer.  He complains of a ringing that never seems to subside.  His pain, that wakes him every morning, has gotten worse the past couple of months.  His energy, obviously impacted by the loss of an adrenal gland and removal of his thyroid, seems to be grudgingly limping along as he takes a medication to get those levels raised.


He had a hearing test last week, and was told he has a substantial hearing loss.  I could have saved Medicare some money, because the validation of that has never been in dispute.  He had an appointment with an ear, nose and throat doctor yesterday.  This doctor told him he didn't believe he could do anything to help him, and that it "would take some more time" before the ringing diminished and wasn't so much of an obstacle.  Having the thyroid surgery was one reason he might have ringing in his ears.  The doctor was unsure....


His appointment today was with the doctor who did his colonoscopy a few months ago, and his input was long term use of an antibiotic could cause ringing in his ears.  He also reiterated that the lack of energy would get better as his thyroid levels became stabilized, but again, it "will take some more time" before his energy levels are back.  The vomiting may continue to be an issue until those levels are back, and again, it "will take some more time."  Or so we're told.  One more time.....


As I pointed out to Terry after his appointment, his surgery was more than 5 months ago.  At what point will "some more time" be met?  This is beginning to feel very much like an easy out for doctors who aren't sure what's going on.  I know we should exhibit a bit more patience, but after all he's been through, we really wanted to have the worst behind him and an expectation of getting our lives back by being able to plan for things.   Evidently that "will take some more time."  


For the moment, we're trying to figure out what his new "normal" is.  We know not to plan anything for the earlier part of the morning, and so far that is working.  He had blood work done a month or so ago to see what exactly he's allergic to, and surprise!!  After years of treating seasonal allergies it turns out he doesn't have allergies.  To anything...no allergies, and no quick fixes. That's all we know for now....

Rerun and Repeat

Tonight ended up being a rerun of days gone by when Terry puked for hours or days at a time...or so we thought it was days gone by.  After surgery in June to remove his thyroid due to cancer, and his left adrenal gland to a pheochromocytoma, he hadn't had any more of these episodes, and we really thought he had turned the corner.  Either of those issues could have contributed to his vomiting, and combined, we had hope the root issues had been resolved.  


I'm finding that my patience is wearing thin with going to the local hospital.  I understand that the system is set in place for the benefit of the medical professionals, but I answered the same questions up to six times with different people asking.  At some point, if you're using a computerized system, which they are, the net result should be that the patient and or their caregiver are not asked the same repetitive questions.


In all fairness to a hospital that has been there when we needed it, it is difficult to describe my sense of frustration to find ourselves in that situation yet again.  It had been so long since he'd had a full blown episode like this one that we truly were surprised when it occurred again.  But the six hours I spent sitting in an uncomfortable chair seemed unnecessary, and led me to think about another chapter I need to add to the caregiving book I'm writing.  There has to be a way to advocate for a smoother system at the hospital for the benefit of patients and their caregivers this time.


Maybe if I shift my focus to topics like what I can write about, rather than what we're going through at the time, I may not end up so frustrated.  If I try to figure out how to benefit in some way from each experience, it has to keep me more positive than if I sit back and realize how many times we've lived this experience, and how unsatisfactory it is each time we relive it.  


I just know that I, and Terry, would prefer a new shared experience.  We'll have to see how we can make that happen.  And it should be something other than a trip to Mayo's, which may be about the extent of our new experiences for a while.  We need progress in a forward direction, and I'm determined to make that happen.

The Calm After the Storm

It's been a while since I posted.  Part of that is because things have been relatively calm and quiet on the healthcare front right now with Terry, and part of it is I've lacked the energy to do anything else.  I've officially entered the "Terry is ok for now, so Caren's body must give out" phase.


Because of my Rheumatoid Arthritis, extreme stress takes an even bigger physical toll on my body than someone without it.  Without fail, each and every time Terry has had a major medical event, I've gotten through it physically without much issue.  Until afterward....at some point my body figures out the immediate stress and demands are over, and it literally shuts down on me.  The fatigue and the pain of RA rear their twin ugly heads once I think I've made it to the homestretch, and humble me by forcing me to slow down.  It never ceases to surprise me, because I continually want to believe it won't happen THIS time.  But it always does.  Thankfully there seems to be a longer and longer lapse between his health problems, and my following and corresponding health problems.


All things considered, I should be happy that my physical meltdowns occur AFTER his medical events, rather than simultaneously occurring at the same time as his.  I'm not sure how we would get through these times of stress if we both were down.  Hopefully we won't have to find out.  


As far as Terry is concerned, he still complains of discomfort and still isn't sleeping well.  I'm not sure why that is, but think we do need to get some answers about those issues now.  My biggest concern, and again, keeping things in perspective it's not a big deal, but his voice is still not back.  He's raspy and doesn't have any volume, and he's closing in on 3 months since his surgery.  If there's an upside to that, I think the number of times he has to repeat himself because I could not hear him may have given him some insight into why I get frustrated at times when he can't hear me and I am continually repeating myself.  It does get old....


So, as we limp into September, we have his birthday, and my impending retirement from work on the 24th to look forward to.  Once I quit working, my goal is to use this blog as a basis for a book on caregiving, and I am ready, willing, and able to take on that new challenge.  At least I know in the immediate future if I have days like I've had lately, I won't even have to get dressed and out of my pajamas if I'm not feeling up to it!!  Oh, to simple pleasures.....

Heck No, He Won't Glow!!

I've let myself get a little behind, which is never a good thing.  In order to stay on top of what's going on with Terry, I need to make sure I'm timely with my information so it's correct and appropriate for the posting when it occurs.  It's too easy to let the little pieces of information slip away if I don't keep it current.


So, he has met with the endocrinologist who will supervise the radiation treatment as well as be responsible for getting his thyroid levels where they need to be.  It was a bit of a shock talking to her, because his oncologist had told us he would be hospitalized for 24-48 hours in isolation in the hospital because of the treatment.  He will emit radioactivity at high levels for the first few days, and then lesser amounts until it has been processed out of his system.  This doctor is telling us that while he will need his own bathroom, and separate bedding, and we can't get within 3 feet of him initially, it's all good that he do this at home.  At home?!?  Yes, he will swallow a couple of capsules with radioactive iodine, and do this all at home.  Our poor dogs are going to wonder what they've done wrong because they definitely won't be able to get close to him for several days.  


In the meantime, we've been waiting and watching for his TSH, Thyroid Stimulating Hormone, to rise as his thyroid levels drop.  When he hits the magic number of "30" he will be able to start the treatment.  It's taking a major toll on him, though, because in addition to his thyroid being gone and not having that regulator for energy and heating and cooling, he also is now missing that continual stream of adrenaline being pumped into him as it was before the surgery to remove the adrenal gland.  The combination of both factors are making it incredibly difficult for him to have any energy AT all.   I've told him all things considered, it was probably a good thing to have all of this going on during the long hot summer when he didn't need to be outside or doing anything much right now anyway.


We also met with the cardiologist this week, and surprisingly he doesn't feel the need to be in the loop of labs and thyroid levels as that process progresses.  Terry and I were both a little surprised about this, because the cardiologist is waiting to start re-introducing some of Terry's heart medications until after his thyroid level gets settled.  His partner was who Terry met with the week after the thyroid and adrenal gland surgery, so we had to tell him the events that occurred with the surgery.  We even told him about the oncologist theorizing that Terry may never have needed a pacemaker/defibrillator as the over producing adrenal gland had probably given false cardiac readings.  I was there for the heart attack...there's no question in MY mind that he needed it.   The cardiologist agreed the two issues were separate.


Results from lab work show Terry's TSH levels are rising faster than anticipated.  This means he will be going through the treatment much sooner than we had expected.  There's a real chance given he'll be doing this in early August rather than late August or early September.  Hopefully by the time his birthday rolls around on September 22 he may be feeling pretty good.  That might be too much to hope for, but hope for it we will.  It would be nice to have a "normal" life for a while.  

The Long Dark Tunnel to Nowhere

Last week Terry had his colonoscopy with the doctor who had figured out the pheo and what was going on with him.  By the time he came into the prep room where Terry was getting ready for the procedure, Terry had already talked with the nurse and the anesthesiologist about how rare a pheo is and that they'd never actually seen a patient who had one before.  His doctor is a young and enthusiastic surgeon, and was getting a lot of teasing about being so talented from the folks in the operating room before they got started.  There is no way to adequately thank him for his insight, as he literally saved Terry's life when it could have easily gone the other way.


The colonoscopy itself went very quickly.  The surgeon showed up about 20 minutes after they'd taken Terry, to say he was through with that procedure, but needed to do another one.  Terry had vomited blood after they finished, and the doctor wanted to scope his esophagus and look down into his belly to see what was going on.  He found one spot on his stomach that showed irritation and could have shed blood, but he didn't feel that was active and bleeding, so he wasn't sure where the blood came from.  While he was scoping in there, he also noticed that apparently Terry's stomach is not completely emptying, and there is "backwash" for lack of a better description, that occurs when the stomach tries to empty into the small intestine and flows back in.  He didn't feel it was a major concern, but they will continue to monitor that, especially if he continues to have trouble vomiting.  


There was a rather large polyp that was removed, but it will be a little while before the biopsy report comes back.  All in all, it was a fairly calm appointment, given what Terry's been through, and they still don't know that they've solved all of his vomiting problems.  But for now it IS better, and that's a lot to say with as long as it's happened.  I'm still not confident they've found all they need to find, but no negative news from the procedure has been good news.  


His next appointment is with the endocrinologist who will monitor his thyroid levels and direct the radiation he will undergo for the thyroid cancer.