Full of Pee, and Nowhere to Go...

One of the tests ordered after the initial appointment at KU was a 24 hour collection of urine in a large, orange jug. Once it was filled at 24 hours, the idea was to take it back to the lab at KU Med. Unfortunately, Terry did not plan for more snow with planning to take his urine jug in.

So, we talked to the lab at the local primary physician's office about taking it there. Now, the orders were written and Terry had them, but to get this resolved turned into an ordeal. And I have to wonder why....it's obvious, through possession of the cumbersome orange container, that he's supposed to collect the urine. But to read doctor's orders to know exactly what is needed is another thing all together.

Now, we'll have to stay on top of the lab and ensure they send the results on. Technically, since the original orders did not come from our primary care physician, the results cannot be sent to the physician who ordered the tests. They have to go to the PCP, who will review and then send them on. All of this takes more time, and requires us to remain vigilant and on top of others who are involved. If we let time slip away from us and don't follow up to make sure the results have moved up the bureaucracy chain, Terry is the one who pays, and that's what we're trying to avoid.

Let it snow, let it snow, let it snow?? Grrrrr.....

Let the Games Begin!!

So today was the initial consultation with the docs at KU Med. It's literally been months we've been waiting to get this started, and today was the day...I have to say we were both pleased with the physicians with whom we met. They seemed to understand the significance of getting this figured out...on some levels, just being heard was a difference.

To begin, he's consulted with two internists, and a referral is being made to a GI at KU Med to start the process...they understand our frustration with how things have gone so far, and seem willing to look outside the box, which is what we desperately need.....

Even though nothing dramatic happened, and no new insights were immediate, it feels like we're finally on a roll and ready to get somewhere....in one of those good/bad experiences, Terry was feeling pretty crummy today, which has to help the diagnosis if he can describe how he's feeling when he's feeling it....

His immediate project is to collect 24 hrs of urine...fun....but it's something concrete for him to do, so it's good....I just need this rolling and getting somewhere before I have to go back to work...that's been the plan; that is the goal. We are officially on go now!!

Change of Focus...and Back

This is a big week...we begin with KU Med on Wednesday with an internist....I have my file folder of test results, and biopsy results, and other relevant info....our neighbor, Cat, has even seen an episode of a show about medical mysteries that may prove to be an option to pursue in the way of diagnosis....I have no doubt we will learn what's been dragging Terry down, but I am equally confident it will become because of the work we do to figure it out...at least this is a fresh start, and my reason for taking a leave from work.

Until then, we've dealt with the news that Sandy had cervical cancer...as Terry's middle daughter, she's been the link between the sisters...Molly as the youngest daughter, and Charlotte, as the oldest daughter, are connected by Sandy... She is only 28 and has one child, and the idea that she had cancer was hard to believe...she had a procedure today using lasers to zap the cancerous cells...we have no reason to believe the procedure was not successful, and she'll find out for sure at her follow up appointment....until then, we're operating on a good faith basis that she's on her way to full recovery.

The journey we've been on with Terry's health is one thing, but when it's your child it's a trip you don't want to take....I'm not Sandy's mom, but I've been part of her life since she was about six...to think about her becoming seriously ill or requiring a hysterectomy at her age were painful considerations....I've resigned myself to certain realities where Terry is concerned, but I've tried to remain blissfully ignorant of the other losses we might endure...when you're smacked upside the head with reality it makes it incredibly difficult to ignore.

Because we have no reason at this point to think Sandy won't have a full recovery, we DO think she'll have a full recovery...that allows us to get our focus back to Terry and his upcoming appointments...he's going to need the focus...he's felt puny and had pain most of the past week...it's his turn...we're going to get this under control...so we can have our lives back under control....or some semblance of control... I'll take what I can get.

Togetherness is togetherness

At one point, not long ago, Terry thought we should spend more time together....before I took a break from work, we spent time in the morning watching news and chatting before I went to work...if I'm in my office for the day and in town, I come home for lunch with him...if I don't have a community commitment or something else family related, I'm at home....with him....I thought we spent pa-lenty of time together...

I took off time starting at Christmas, so I've been home for three weeks now...and of that time, we've had snow...lots...and lots....and lots of snow....and some bitter cold temperatures that are not conducive to anything other than staying in the house....together.....

I'm on this two month leave of absence from work, and I think Terry believes it's a two month vacation....but it's not....it's a chance to get focused on his health and related problems, and catch my breath so I can get focused on everything else....when my dads both got so sick in 2008, it was the beginning of the end of my ability to keep maintaining the pace....

Terry's diagnosis of a disabling medical condition after his heart attack in 2000 started the continual attack of stress.... while I've always believed that which does not kill us makes us stronger, I'm beginning to think it's time to end the opportunities for strength enhancement...some of it was transitory, like worrying about whether I could as the sole worker in the family support us so we could keep our home and not have our lives disrupted in that way....some of it has been ongoing, like his additional health problems necessitating this respite from work, and some of it has been brutal and unrelenting....losing both of my dads within four months of each other was brutal, and the pain has been unrelenting....I've hit the one year anniversary of losing my stepdad, and the one year anniversary of my dad is the 23rd of this month....it's been a draining year, aside from those losses, and I'm worn out...because I'm worn out I've not had the fire and the focus I need for work...I feel as though I've been misfiring on all fronts...it's time for a break to breathe...

But I have plans for things to be done to bring organization back to our lives and thereby reduce some of the stress I have....I have plans to get focus on Terry's condition and get it figured out....I have plans to get Molly prepared to graduate and head off to college...I have a lot...Terry may think it's vacation time....but that's only because boot camp hasn't yet started!!

What's my problem?

When I went to bed last night, Terry was sitting up on the sofa after getting sick in the bathroom...I fully expected it to be "one of THOSE days' when he's sick all day when I got up in the morning...imagine my surprise when it wasn't.....

The other surprise I got was in talking with him about how he had been feeling....as he began to describe how he was feeling when he got sick, and then described how he felt and what was happening when he got up, I began to feel a little sick myself....because the vomiting is the primary cause of his ER visits, and has been going on so long, all diagnostics and tests and hypotheses of what is happening revolve around the stomach....but each time there is a different test, there is no evidence of issues that would cause such dramatic ongoing vomiting....and at that point, doctors check out... if there is no evidence they can find to explain his illness it's easier on their part to just give up...

Well, there is no giving up....it can't be an option, because this is consuming our lives and his health...I've got to make sure that when he's talking to the docs they understand they have to ask enough questions to get the real picture of what's happening...otherwise this is all for naught, and we still learn nothing....and that's not an option...

Customer service

I am a big proponent of quality customer service...how you begin the interaction with whomever you're dealing with often influences your opinion and perspective of them...or in fewer words, you can never make another first impression....I called KU Med today in an effort to move Terry's Feb. 16 appt. with them a few weeks earlier, and feel like it was a Herculean task to express myself...

If someone is not listening to what you're saying, there is either a negative outcome to the experience, or getting through until they ARE listening takes forever...while I did accomplish my goal of moving the appt. to an earlier date, I did not have the opportunity to determine whether there were other opportunities to start with a different department...since we've been told, and Alice read to me over the phone today, they don't do team conferences or case reviews...pity....it might have enabled us to cut to the chase with what we're dealing with much faster...

At the end of October, we had requested through our primary care physician, a case conference with four specific specialists sitting at the table with Terry to ask questions regarding symptoms, and me to answer specifics of when...for 30 mins I thought we could have had a conversation allowing the professionals to ask questions, thereby eliminating unnecessary or pointless diagnostics....Terry has been pieced out to specialists for the past 5 years this has been going on, and we wanted a team discussing it and narrowing down the focus...what has happened so far in the way of diagnosis has been, how do I say, nothing?? What we know about this is what we've paid attention to and recognized ourselves...

So I'm trying to arrange something more consistent with what we're envisioning, and Alice is listening to nothing I'm saying "beyond Feb. 16 is too late to wait to get in".....had she stopped for 15 seconds to listen to me, there might have been a more positive outcome to the exercise than simply changing the appt. date...we might be well on our way to a more coordinated approach to healthcare...when the patient is forced to figure it out due to failures in the healthcare system to get the job done, it would be nice if the medical professionals accepted that what they're doing, the way they're doing it, just doesn't cut it...it IS time to reinvent the wheel....or get out of my way so I can...

For now, I've dealt with interrupting non listening Alice, so I'm set for the experience to be less than pleasant...we'll see.....

How's the weather?

Weather in Kansas can always be an adventure...it takes on new significance when you're living with someone with compromised health...when you need to get to the hospital or appointments, you need to get there...we had major snowfall with blowing and drifting winds, and our driveway is snowed close...the average person may look at their driveway and be glad they have nowhere in particular to go, but I look at it and wonder what the prospects are of even the ambulance getting through if necessary...how would I get him over the high drifts between the house and the driveway, even if they could get down the driveway enough to get closer to the house?

We plan for upcoming storms by making sure we have enough dogfood and milk and other necessities, but making sure we've been to the pharmacy to have necessary meds and ensuring the car has plenty of gas are other considerations....the first time his defibrillator went off after his first implant, I had to stop for gas before we could head to the ER to get checked out...making sure I have gas in the tank is one of those items always at the top of my list of tasks when he's sick and there's a chance I'm headed to the hospital....even if he goes by ambulance, there's the risk I'll be driving to meet them there...

Due to the weather, he's had to cancel a cardiologist appointment to follow up on the latest implant...his defibrillator went off in Denver in September, and at an appt in November, we learned the battery had died...when he went in for a battery replacement, they took him in to surgery telling him the entire unit was being replaced....attention to others....there is NO replacing batteries with pacemaker/defibrillator units...there is replacement of the entire $29,000 unit...that is, there is replacement if you have Medicare and a good supplement to pick up the additional costs.... I have to wonder what happens when you don't have that...now we begin the battle with moving the KU appts up...should be fun...or not.

And so we begin....

And so we begin...I'm going to chronicle the efforts and results in trying to get a diagnosis for Terry and his health issues...I'm taking a two month leave of absence from work in order to focus on his health issues and prompt (demand!) medical professionals to figure out the problem, so I have a finite time line and a definitive goal...this is not a new issue, so making a concerted effort to get it diagnosed and treated if possible, is a priority.

The real beginning of all of this is hard to pinpoint...Terry is my husband of almost 19 years, and on Feb. 11, 2000, he suffered a massive heart attack that caused significant damage to his heart, and necessitated his application for disability...this application was approved on the first submission, six months after his heart attack, so I've known all along that his medical record is indicative of poor heart function, and as a result, compromised health conditions.....he had a pacemaker/defibrillator implanted in Dec. of 2000 for the defib capacities.....in March of 2004, he had open heart surgery to remove staph infection that had located to his heart chambers....it was not believed his device caused the infection, but the wires from the unit to his heart had allowed the infection to invade his heart....he had a second unit implanted (on the right side this time) in Aug. of 2004. In Nov. 2004, he began vomiting....

For more than five years he has had repetitive vomiting that threatens him most days a week, and consumes him monthly....once this begins in earnest, there is no stopping it....he cannot keep down even water for hours, and I have to take him to the ER where they hydrate him with IVs and use meds in the IV to slow or stop the vomiting....after six of these hospitalizations this year, five of them in the past six months alone, we are no closer to knowing why than we were when we began...

He's been to specialists, and has been scoped down one end and up another and they find nothing...on Dec. 11, they took him by ambulance to Olathe Medical Center when he was vomiting up blood...a scope the next day showed some gastritis, which they are actually attributing to the vomiting and irritation from it, but nothing that should have been producing the blood he was vomiting up....

There are general indicators when this happens that add up to the major ordeal as opposed to the daily struggles....if there has been a significant change in the weather his head becomes very congested and drains down into his stomach....he doesn't get sick whenever it rains, but major shifts in the weather cause the allergy triggers that create the congestion....there also appears to be a cyclical pattern to it, although that pattern seems to be speeding up...

I do not believe, nor does he, that it is psychosomatic in any way...he's seen specialists, and no one seems to have a clue....I've requested a case conference at KU Med Center in KC, but they "don't do that"....at one point he was called by them when we were attempting to get appointments scheduled, and told he needed to discharge his primary care physician before they could see him...

This is the abbreviated version of five years of frustration, obviously, but the frustration ends here and the resolve to get this figured out takes over.....I'm putting this out there in the hopes that someone knows someone who might have a clue....at this point, no potential is too crazy or out there....whatever is happening is not common, or they'd have diagnosed it by now.....

If you're interested, follow along on our medical mystery tour....it begins now.....