Choosing Pain or Taking a Risk

Richard survived the unintended Fentanyl overdose and was released on Friday - our 16^th anniversary and Robert’s birthday.  It certainly was a day to celebrate!

What a difference a year can make.

 

Dinner in Rome - 2012

A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage and all the extra activity).

No, this year my husband was lying in ICU because his doctor inadvertently filled his abdomen (instead of his subcutaneous intrathecal pain pump) with 40 ml of Fentanyl.

Yes, 40 ml.

Richard not only has the pain pump but has the “big boy.” I talked to the doctor in charge of the clinic (the one who has his name on the door) and he explained what happened called a “pocket fill.”  It’s rare, he said, and has happened twice since he started using the pumps.

After doing research and friends sending me information, this is apparently a known risk for these devices and there is a recall on them. The company doesn’t recommend removing them but developed extra precautions to reduce the risk of the pocket fills.

Note to company: they didn’t work (although I have no idea if the doctor even followed these “extra precautions”).

Last week Richard was going through extreme withdrawals and was miserable. We knew what would come next – the pain.  Since the pump refill didn’t actually happen, his pump doesn’t have any medication in it. 

This thing, as mad as I am about this ordeal right now, has changed Richard’s life. Before the pump, he had to control his pain with extreme amounts of strong oral narcotics.

He couldn’t drive; he had wild mood swings; he was grumpy and when he wasn’t grumpy, he was sleeping.

Good times.

A decade later, he still talks about not ever wanting to put the kids or me through that again. To him, he is secondary in the equation. He would love to be out of pain but, more than that, he doesn’t want to be that person again with his family.

I tell him that it is okay, that period of our life is behind us. The kids and I all understand what was happening. It was difficult but it’s over.

Now the pain is back. Extreme pain. Debilitating pain that stops him in his tracks and has my husband in tears.

The pump is not functioning and he is feeling the full effects of life without it. He cannot get comfortable; he cannot sleep yet he can barely get out of bed.  He cannot do much of anything except try to relieve his pain with a heating pad, heat wraps, a TENS unit, some Advil and a few of his Hydrocodone.

He has lay down in a tub of warm water; showered several times so the warm water can ease the pain.

Richard is usually boisterous and loud with an inner monologue that has no understanding of the concept of “inner.”

Now he is quiet.

He speaks softly and not often.

This is not my husband.

Unfortunately, we have not yet been able to find a different doctor who works on these pumps or who might have a different pain solution for him. Richard has to choose between living with this pain while we search for a new doctor or go back to the same pain clinic that put him in the ICU.

The lead doctor was not the one who overdosed Richard so Richard has agreed to return to the clinic but only having the lead doctor work on his pump (“routine” refills and everything). 

We had suspected the pump was malfunctioning before all of this and have been pushing for months to get that figured out. Richard was experiencing achy joints and all sorts of ailments (many symptoms of withdrawal) so the doctor suggests an MRI dye study to view the pump and see if it is working.

That is scheduled for Wednesday at 6:30 a.m. Because we have Robert, Richard’s mom will take Richard to the appointment and I will finish getting Robert ready for Day Program and then meet them at the clinic.

Richard has to be put under anesthesia for the dye study so he needs someone with him all day. I’ve taken the day off from work but I suspect his mom won’t leave his side until he wakes up.

This makes me nervous but I know Richard wants to be out of pain. Let’s see what is going on with the pump and then discuss other pain control options with this doctor. If Richard can get some sort of pain control then we can continue our search for another pain management doctor.

This is a risk and anyone who knows me, knows I am very risk-adverse. However, I know Richard would not make this choice if he was able to find some other way to get out of pain. The dye study itself won’t get him out of pain but it is the first step in that direction.

I’m sure everyone is shaking their heads and thinking we are crazy but this pain has to stop.

The quiet is starting to freak me out.

Richard is in the ICU (What?! Who?!)

Richard is in the ICU.  Not Robert.  Richard.  

I'm as shocked as everyone.

Say Cheese, Dad!

As many of you know, Richard has severe back pain and it is managed with an intrathecal pain pump filled with Fentanyl. This is refilled every 60 days or so. He had a pump refill appointment early this morning and he walked out the door like any other day.  Well, except that our puppy, Taz, escaped and we had to chase him back in the house.  Twice.

Other than that, everything was perfectly normal. Robert was picked up for Day Program and I left for work. 

Mid-morning I texted Richard asking how his appointment went.  I didn't think anything of it when he didn't reply as I thought he was busy. I ended up making an appointment for myself because I've been experiencing some dizziness and thought I could take a longer lunch and have a quick appointment and then back to work. 

That was the plan, anyway.

In the middle of the appointment, Richard called and sounded awful. He was groggy and he said he was in the hospital. What?? Were you in a car accident? What happened??  He answered my questions with non-answers and just kept saying he was in the hospital and told me which one. 

As I was rushing out of the doctor appointment, explaining to a nurse that I couldn't wait for the doctor and had to leave, I realized: Robert is going to be dropped off by his van in 10 minutes.  

I then realized my phone was about to die. 

Oh crap. 

My phone charger in my car doesn't work so I just had to hope I had enough charge to call the transport company and tell them I was on my way home to get Robert.  When I called, they answered, "This is Medstar. Please hold." Click. 

Are you kidding me? 

Thankfully, they got back on the phone before the phone died and I explained I might be a few minutes late in being home.

I zip home, still without any information about Richard, and the van hasn’t arrived yet.  I plug in my phone, let the dogs out (pleasantly surprised not to find any accidents after such a long time in the house alone!).

Taz didn’t even eat anyone’s bed which was an added bonus.

I called the hospital and told them all I knew was my husband had been admitted and I knew nothing else.

“What’s his name?” Oh, okay, I know that.

“Richard Kreis – he’s in the ICU. Let me transfer you.”

He’s in the ICU?? Why is he in the ICU?

“Let me transfer you.”  Okay, okay, okay.

I talked with the ICU nurse who didn’t tell me anything other than the doctor would call me. Yeah, I’ve heard that one before.

“No, really, he’ll call you as soon as we hang up.”

The doctor actually did call right away and as we talked, Robert’s van pulled up. I went out to get him in the house and ushered him to the bathroom all the while talking to the doctor and taking notes.

Apparently, at Richard’s appointment, something went wrong with the pump refill and the medication went into his body instead of the pump.

Richard had overdosed on Fentanyl at 7:30 this morning and NO ONE CALLED ME!  The doctor said they were monitoring him and he would have to stay overnight but that he should be better by the next day. 

I couldn’t even believe how this happened but the doctor had given me all the info he had.

I quickly packed Robert’s meds and a snack and hurried him up in the bathroom, helping him change his briefs into fresh ones. Robert wanted to brush his teeth which is always followed by shaving so I explained Richard was in the hospital and we had to get going to see him immediately. 

“I understand.”  Robert didn’t put up a fuss or anything. He didn’t even ask to shave, bless his heart.

On the way to the hospital, I called Richard’s pain clinic and spoke with the doctor Richard saw this morning. He was extremely apologetic about what happened and also apologized for not notifying me.

It went only slightly better than: “We almost killed your husband and on top of that, we didn’t call you but we are very, very sorry.” 

Gee, thanks.

He had no good explanation for what happened. 

My husband is lying in the ICU with an overdose of drugs in his system and no medication in his pump so I know once he recovers, he is going to be in a world of hurt.

I still don’t understand how this could have happened. I don’t understand how I was not notified by the clinic, the ER or the ICU!  Once I make sure Richard is recovering as he should, these will be questions I will ask and answers I will get.

I do not want this to happen to another family!

When I left the hospital tonight, Richard was still groggy and sleepy but on oxygen, being monitored and given fluids as well as an antidote that is supposed to counter-act the overdose.

I’ll update more when I know more.

Oh, and the picture is payback for all the times Richard took candid pictures of his mom while lying in a hospital bed! Richard is passed out and the girls are enjoying some fun time with dad.

Because, no matter what, Richard would want us all laughing. 

Chronic Pain Rears Its Ugly Head

Sand, meet ostrich.

Yep, I can be an ostrich when it comes to my husband’s chronic pain.

Dinner in Rome

Before I go any further, though, let me be clear about a few things:

1.       I love my husband;
2.       I had a fantastic vacation of a lifetime (of which I hope there are many more!);
3.       Husband (also known as Richard) has given his permission for me to discuss this;
4.       I’m going to be brutally open and honest;

I usually write about caring for Robert or about epilepsy or being a working caregiver.  Occasionally, I’ve mentioned Richard’s chronic pain. 

When we married fifteen years ago, we combined his daughter and son and my daughter into one unified family and the back pain came along for the ride.  Between surgeries, treatments, medications (some hits, some horrific misses), it has been a part of everything.

Almost from the get-go, Richard had to stop working, we filed bankruptcy, medication misses kept him from driving for a while (a real challenge with three active kids!) and, of course, he was in constant pain.

The intrathecal pump installed several years ago, in combination with prescription painkillers, has been a life-saver.  We are back on our feet financially, Richard is able to drive again and while his pain is constant it is more manageable.  We have settled into a routine where he knows when he pushes himself he allows himself a few days to recover. I’ve learned not to nag him about what he should or should not do (okay, okay, I said I’d be open and honest: I still occasionally shake my head at him when he’s doing something he shouldn’t). 

Coping with this for so many years and developing routines has allowed me to almost forget how we have made so many adjustments in our day to day life in order to manage his pain and keep it at a minimum.

I can be such an ostrich but it is a comforting place to be sometimes.

However, it was also my downfall on our Most Wonderful Vacation Ever (enjoy the gratuitous vacation photo). J

While I was madly preparing for our vacation by making sure Robert was well cared for and my absence from work was covered, preparation for a long, overseas trip with someone who has relentless, unforgiving, chronic pain consisted of a passing thought of “if Richard is tired or in pain, he will rest.”

Worst. Idea. Ever.

Some things we would do differently next time:

1.       Do not have three legs to an already long flight.  There were too many times we rushed to catch our next flight and too many opportunities for luggage to be lost.  Which it was.

2.       Ask for assistance!  We both thought running (or walking very fast) to the next gate was acceptable.  It isn’t.  Richard was already in pain from a long flight and one of us (probably me since I wasn’t in extreme pain and theoretically should have been thinking clearly), should have just asked the flight attendant to arrange to have a cart or wheelchair pick us up upon landing or sucked it up and made arrangements to make the next flight.  Oh, the benefit of hindsight!

3.       We will never, ever put Richard’s pain medication in our checked luggage.  Richard’s bag was lost for two full days once we made it into Rome and his minimal extra medication he had with him had already been taken to help alleviate the pain from the close to 24 hour flight.  The decision to put the medication in the checked bag was made innocently enough (Richard’s pump delays him through security already and he didn’t want additional delays because of medication).  Next time: it’s going in our carry-on just like my shoes did (you don’t think I’d risk losing my shoes, do you?).

A few things we did right (most, by accident):

1.       Since we were with our two daughters and one of their boyfriend’s, it was actually more economical to book a private tour at various destinations than if we had a group tour through the cruise ship (our vacation was both on land and by cruise).  This worked out because when Richard is in pain he is cranky, irritable, and not pleasant to be around and awful in crowds.  It was best we did the private tours since seeing the inside of an Italian jail for assault was not on our bucket list this trip.

2.       We relaxed.  Yes, there was the usual sight-seeing and rush to pack in as many activities as possible but there was also a lot of time to relax by drinking cappuccinos and enjoying gelato and the occasional daily glass of wine.  It took us several days of being told by Italians to “just relax” to realize how high-strung us Californian’s really are (who knew?).

3.       Richard took breaks.  Not as often as I think he should have but I have to give him credit that he at least did take breaks.  Our visit to Cannes (yes! That’s where the famous film festival is held!), was particularly difficult for him.  The kids were exploring the beaches ahead of us and Richard finally had to stop and sit.  We left the kids (I use that term loosely since they’re in their early twenties) to explore the beautiful seaside town and Richard and I took a more leisurely pace in our exploits.

Now that we’ve been back for a week or two, I can clearly see what we should have done differently to make Richard’s pain more manageable.  Of course, in the throes of his pain and the lashing out verbally at the nearest person (usually me), I was ready to never go on vacation again.  At least, not together. 

However, I really think with more preparation, more built-in relaxation times and a little less lost luggage, we can manage the pain better.  Whether we are traveling or going about our daily lives, unforeseen crap is going to happen.  The reality is that being in pain makes it extremely difficult to deal with that extra crap.  A person with chronic pain has zero extra reserves to deal with anything except their pain. 

As with so much in caregiving, preparation is critical. I won’t stick my head in the sand again, though, by being delusional and thinking the next time we travel will be all roses and sunshine and butterflies.  Both us of will have to prepare more and hope that Richard’s pain management will benefit from that preparation.

I’d love to write more about chronic pain in order to help others dealing with it.  If you have a story about chronic pain and how to manage it, please share in the comment section here. 

In the meantime, I need to test my theory about preparation helping with the pain and start planning our next Most Amazing Vacation Ever.

 

Another Caregiving Hat

Hubby goes in tomorrow for surgery to replace his intrathecal pain pump.

It’s also my birthday (let the singing begin)!

Hubby has been in pain since I met him (although I try not to take it personally).  Mere weeks after hubby’s son was born, Hubby was traveling back to his baby from working out of town when he was rear-ended by a drunk driver (the person who hit him was driving on a suspended license and it was his 4^th DUI). 

Hubby dealt with major injuries and spine pain and was on a lot of pain meds.  He was on quite a bit of pain medication but, over time, went off it and did his best to control the pain with over the counter pain medications because he didn’t like the stronger stuff. 

We met during this over-the-counter drug phase, we married, his pain increased (I tried not to take this personally). 

Hubby saw a pain specialist (and a chiropractor and an acupuncturist and massage therapists and whoever else might have been able to help relieve the pain).  The pain specialist said he had Degenerative Disk Disease caused from the accident.  The doctor tried all kinds of treatments (nerve blocks, stronger medications, physical therapy to name a few). 

Nothing brought him relief.  Hubby was debilitated by the pain and he could no longer work.  He was declared disabled, we took a financial nose-dive, hubby’s view of himself took a major nose-dive, depression enveloped his entire being. 

We had three kids under the age of nine, it was early in our marriage, our finances were a mess and hubby was in severe and chronic pain.

It was ugly.

Hubby tried all kinds of medications to bring him some relief from the relentless pain.  Some medications incapacitated him so completely, he was unable to drive or function as a father or husband (sheesh, he could barely get out of bed).

I should also mention his mood was, well, on the cranky side.   The kids and I all had to not take this personally.

The situation was unbearable for everyone and we had to come up with another solution.

The intrathecal pain pump gave us hope.  The pump promised less pain (never promising to rid Hubby of it completely but promising his life back) and it gave us hope that the strong narcotics hubby was on could be discontinued (or, at least, greatly reduced). 

Fentanyl is delivered from the pump through a catheter into the area in the lower spine causing the pain.  Because the medication is delivered directly into the spinal column, there are fewer side effects from the medication and Hubby is able to actually function without a foggy brain and have reduced pain.  He still takes medication to help control the residual pain but it is nothing like those early days of our marriage (or right after his accident). 

The pump is not a cure-all.  He still has reactions to the oral medications which can cause all sorts of physical and behavioral problems (for instance, he was on Neurontin for quite some time until it turned Hubby into an angry, out of control stranger and I told the doctor he could either live with Hubby himself or change the medication).

Hubby no longer takes Neurontin.

Thankfully, we’ve had a great stretch without behavior issues or depression.  Hubby still has pain but he knows how far he can push himself and when he needs to rest.  I’ve learned to stop telling him what he shouldn’t be doing because it will cause him more pain.  The changes we’ve both made have helped make us happier people and have kept us married for close to 15 years.

The pump runs on batteries so needs to be replaced every few years.  This will be his 3^rd pump (well, 4^th if you count the time the doctor accidentally installed it upside down – oops!).  The device needs to be replaced as soon as possible because it is showing signs of not working and the battery going out (giving Hubby either increased pain or withdrawal symptom s or both).

We found out just before Christmas that a cancellation came up on the doctor’s schedule for tomorrow so surgery has been scheduled.  Hubby feels terrible that he is having surgery on my birthday but I think Hubby having pain relief for a few more years is a pretty terrific present (although – shhh, don’t tell Hubby – it definitely gives me “you owe me” ammunition to use in the future if I ever need it!).

For the surgery, I plan to wear my Mickey Mouse ears from my 50^th birthday celebration in Disneyland last year which, for me, is just the perfect caregiving hat.