Getting Started

Finally….I go back to work next week, and we’re starting to get somewhere at KU Med. He had an appointment today, and because he had been feeling nauseous when we left this morning, had not eaten anything. Since he was not feeling well at the appointment and complaining of pain and discomfort, they were able to schedule and conduct a CT scan while we were there. After such a long wait the last time we were there, it was nice that this clicked along the way it did. He was able to go from the doctor’s appointment straight to radiology for the test.


He also got a couple of prescriptions to hopefully calm any spasms down to see if that’s the cause of the pain. My concern, and evidently Terry’s too, is that the pain is increasing. It’s frustrating because while we are starting the process with this department at KU Med, they are starting from scratch. We’ve already scratched….we need to do something different and outside the box where diagnostics are concerned. I thought we had articulated that from the beginning, but I suppose each physician feels the need to validate for himself.

I’m still encouraged he’s not been sick enough to require hospitalization while I’ve been off. I really can’t figure that one out. He’s obviously not felt well almost every morning, and that’s been apparent. So what is the difference with whether this goes full blown or dies down mid-morning, as it has done? I have no clue…the only other variable may be the weather has been so cold that it may have diminished the impact of the changes in weather that typically have filled his sinuses and drained down his throat. Without that additional trigger, he may keep from sliding into a full day or more of vomiting.

I wish I could figure it out, so we could stop it from getting to that point. It’s hard to keep something from happening if you don’t know how it starts. At least we’re finally getting down that road to figuring it out….
Share on Tumblr
c4ec207014291167b53af0ea3572599f
Share via email

Happy Anniversary??

This is one of those days that I’m not sure how to handle. Today is the 10th anniversary of Terry’s heart attack, and the event that changed our lives forever. I know that on more than one level I’m surprised we have made it to this point, because I’m not sure I really ever believed he’d still be here for Molly’s high school graduation. And while we’re not technically there, we’re close enough that she knows her dad has always been there for her, and has seen her major moments in life so far.


But it’s hard to know whether to recognize and celebrate the accomplishment of having made it the ten years, or just let the day go in peace. I’m the only one who recognized the date, anyway, so maybe it’s just my own thoughts crashing in on the day. I just don’t know how anyone else could have forgotten it….it is forever seared in my consciousness…

Speaking with Mom this morning about Grandma’s worsening health caused us to have a conversation on death and dying. While we all know that at 90 Grandma has had a long life, and we know that 10 years post heart attack is almost a miracle for Terry giving the severity of the heart attack and resulting damage, in many ways it doesn’t make it that much easier to accept that at any point one or both of them could be gone. Mom is struggling with whether she forces the issue of Grandma going to the hospital and I have struggled for the past 10 years with watching Terry’s negative health behaviors. It was a difficult conversation, because we both were forced to face what we are feeling, which may or may not be compatible with what our loved ones are feeling.

Mom’s situation is a little different than mine in that Grandma flat out refuses to consider going to the hospital. In her mind, she’s tired of all of this, and not being able to breathe well, and while I won’t say she has given up, to a certain degree it seems she has. Her siblings and cousins and many friends have all gone now, and I can’t imagine how alone that could make one feel. But the hard part for Mom is knowing that even though for the past 8 years Mom has had her living with her, now, when her health is turning for the worst, that love and concern doesn’t help Grandma in any way that she can articulate. She is at a place where our love for her is no longer enough to motivate her to want to keep trying to feel better. She wants to let go, and we need to figure out how we can let that happen.

With Terry, while he is willing to go to the hospital when necessary, he will not make that decision for himself. He wants me to take control and make the decisions, but that seems to be the only time he’s willing to follow what I say. One of the observations I have had being home with him for the past 6 weeks so far is how much sugar he consumes. It’s really staggering. He won’t follow doctors’ orders; won’t take prescribed medications; won’t follow a healthy diet, and I’m supposed to be okay with that. Where do his rights as an individual to live his life on his terms end and mine as a concerned spouse/caregiver begin? It’s a slippery slope we never quite get figured out.

It’s unfortunate for Mom and me that one of our connecting threads right now is that we are both caregivers to loved ones who are not making decisions in the best interests of their own health, and we know that we are going to lose them…it would be so much better if we did this one at a time to allow the other to be support, but we do have our own support group, I suppose. At least we each know there’s someone out there who really knows what we’re going through. There is much comfort in that knowledge.

So for everyone else, it’s Thursday. For me, it’s an anniversary we don’t really recognize. Happy Anniversary to me…
Share on Tumblr
6d6ab816aeaaa04ad18a87ff0c7587dd
Share via email

Am I Making a Difference?

The time I’ve taken off from work was to help focus on Terry’s health and get it straightened out. After more than five years of vomiting and forcing limitations regarding what we can plan to do and what we can actually do, we need to get this resolved…for all of our sakes.


But even above and beyond that, I knew I also needed a break from my life as I knew it. Work began to feel like a no win situation. For too long it felt like I was shortchanging my family for my job or my job for my family. You can have only one or two major demands in your life that you can commit to, without everything else suffering. Given a demanding job, Terry’s health, my health, the loss of my two dads, getting Molly ready for graduation, and a grandmother with COPD who is having additional health challenges, and it’s all too much sometimes….

Interestingly enough, this time off has had benefits for both of us. The most apparent benefit of my time at home is that Terry has not been hospitalized while I’ve been off. That’s a step in the right direction. We were at the ER five times in the last six months, and it was wearing on all of us.

So why has he not been hospitalized? Is it coincidence, or has being here made a real and measurable difference to him? I don’t know the answer to that. All I know is he has not been sick enough to warrant going to the hospital. That’s not to say he has been healthy and well. He’s just been healthier and better than he was the last six months of 2009, but again, it’s a step in the right direction.

He has another appointment tomorrow (today) with the Internal Medicine Department at KU Med. I’m hopeful we get on the road to getting answers. The pain he is talking about now is more concerning to me than the vomiting had been. Pain is never good….it’s your body’s way of telling you something is wrong. They seem to be so focused on the retching and vomiting that we never seem to have discussions about the pain. I have a feeling the time has come.
Share on Tumblr
57922429469bb0c9ccd580ee396b62ed
Share via email

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…..
Share on Tumblr
d646e85bbcc242af04d1adc5835c7707
Share via email

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!!
Share on Tumblr
a68fed45d3ccad718e5d2a38242d937e
Share via email

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.


Share on Tumblr
d74b4bdab2c7e7b651ee3e8b08c927b8
Share via email

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!!
Share on Tumblr
c4a2d4ff3f5adaa78bd48035de3a9195
Share via email

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…

Share on Tumblr
5f1ccca1d1656dd56fe448c51c5b698d
Share via email

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…..
Share on Tumblr
47d861d96b67c833b68b8f806b56ed24
Share via email

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.
Share on Tumblr
b1bdc5bf85190844e09a2f9435c01647
Share via email