How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.

The Year of Surgeries Continues

I made mention on Facebook on Thursday that my husband was having another surgery, so I thought I should explain.

It was sort of sudden. I mean, we knew it was a possibility that the latest dialysis fistula "hook-up" (the 3rd) in Mark's left arm was diverting too much blood away from his hand. But we were for sure holding out hope that it wasn't.

After all the previous surgeries he's had this year (they now know and remember us on the 3rd floor of the hospital), Mark's vascular surgeon decided the fistula had to go. It was indeed stealing blood from his hand. He was in a great deal of pain from the lack of blood, and he has a couple of sores on his pinky finger that may not have healed because of it.

No Longer a Candidate for Kidney Transplant

I just opened a letter from the University of Washington Medical Center dated March 5, 2014.

I hadn't bothered to open it when it first arrived because I already knew what it contained. Mark's nephrologist had called us into his office to tell us what the UW transplant surgeons decided:

"Your risk of transplant surgery and immunosuppression outweigh the benefit due to multiple medical co-morbidities including coronary artery disease and vascular disease."

"We understand that this is a difficult time for you, but transplant is not the optimal treatment for all patients with kidney failure. Due to your high risk for complications, the physicians feel you will do better on dialysis. Our transplant team supports the best treatment plan for you as an individual."

The Whole Sordid Story

My husband was just in the hospital for five days. It was a bit of a roller coaster.

He had to have his fistula (dialysis access) reworked back in February. A vascular surgeon placed a graft and made a sort of hybrid access consisting of graft and fistula. Usually these are two different forms of dialysis access.

Although a bit odd (red flag?), it seemed to be working fine until Mark's body decided to get angry with the graft and it got infected (but wait, we didn't know this was the culprit yet). He developed typical symptoms of infection: fever, chills, muscle pain, and was started on IV antibiotics at dialysis.

Over the next several days we made two trips to the ER because the symptoms weren't going away, which one would expect after only about 24 hours on antibiotics. Mark is especially susceptible to infection (usually staph) and has even had pericarditis, an infection surrounding his heart, so we were very nervous and didn't want to take any chances.

Well My Week Was Crap

I want to tell you....

I/we have not had a week as crappy as this in a long time. The "when it rains, it pours" kind.

I should be grateful things haven't been so frustrating in awhile though, hu?

OK, one thankful list item checked off!

And I suppose I should be grateful no one died.

Two thankful list items. Check, check!

Actually, that's not entirely true. Sure, everyone near and dear to me is still breathing, but my friend's mom did pass away on Tuesday. Which totally sucks for her and I care about her so I feel bad.

Now that I think about it, something did die: my husband's fistula.

A fistula used for hemodialysis is a direct connection of an artery to a vein. Once the fistula is created it is a natural part of the body. This is the preferred type of access because once the fistula properly matures and gets bigger and stronger; it provides an access with good blood flow that can last for decades.

Mark has had a badass, perfectly flowing fistula for 12 years. He has had no problems with it until now. It is the one thing that hasn't gone wrong for him in the last 12 years of being on dialysis.

Adding that to the thankful list! That's three things now, right?

But literally overnight, it shut down. Clots, calcification, what-have-you. Done.

This happened Wednesday morning after he already had a truncated dialysis treatment on Monday, coming off his 2-day stretch over the weekend. Monday's treatment was interrupted by tummy trouble.

Thankfully, he was able to get in for a make-up treatment on Tuesday, otherwise he would have had to be admitted to the hospital come Wednesday and still no dialysis.

Fourth thing to be thankful for! I guess.

Everyone scrambles and Mark gets in for a "fistulagram" Wednesday afternoon. This is similar to an angiogram and angioplasty they can do for the heart. But no dice. It's gonna need surgery.

So the outpatient surgery folks put a Quinton catheter into Mark's chest and schedule operation fistula-fix for the next morning.

I was thankful they went ahead with the catheter, kicked him out of the hospital without much fuss and his dialysis clinic was able to get him in for a 3-hour treatment that night.

Three more things to be grateful for! We're up to SEVEN now!

So you know how you're not supposed to eat or drink anything after midnight before a surgery? Well, that can be kinda tricky for a diabetic. In the interest of preventing a low blood sugar, Mark had a snack before bed and didn't give himself any extra insulin.

Turns out, his blood sugar decided to go high. This is apparently a good reason NOT to proceed with surgery (something I did not know). Mark took some insulin, but his sugar wasn't coming down quickly enough and we missed the window of opportunity with the surgeon. Surgery cancelled. Go home. Until next week.

The day before they practically threw us out of the hospital. Now, notsomuch.

Do you have any idea how thoroughly frustrating waiting for NOTHING to happen is? I think my dad wanted to punch somebody.

I whined for people to entertain me on Twitter. And they did!

#8 thing to be thankful for.

When we finally got home I checked the mail and found three letters from a certain government entity that has to do with providing benefits to the elderly and disabled. One of which was incomplete. It said there was something they needed to tell me, but then didn't. Weird. The other two said they are cutting our children's portions in HALF.

The hell you say??

Nothing, nothing, absolutely nothing has changed with any of this in YEARS. I couldn't even remember the phone number to call them because I haven't had to in so long. My and Mark's disabilities are so etched in stone at this point there should be no questions.

Yet some bureaucratic asshat has decided to screw with our stuff! And I had to sit on hold for an HOUR trying to get some information.

Which, you know, is exactly what I wanted to do after spending a completely pointless several hours at the hospital with my husband who is having thing after thing after thing go wrong for him this week, thus the same things are going wrong for me as well only in a different way.

*Heavy fucking sigh.

Oh, did I mention that my son's school bus came a couple minutes early Thursday morning so he missed it and I had to ask my sick friend to take him for me?

AND, I think my daughter now has the strep throat her brother has had.

This has been my week, folks.

I'm all sorts of pissy, but right in the middle of everything I got emotional about the wonderful people in my life. I posted on Facebook:

I am so very grateful for the amazing support system we have! It is so awesome to know that there are people I can call whenever I might need some help. Today Jessica took us to the hospital, my dad came from work and Carin picked us up. Tomorrow morning my dad will take Mark back for the surgery. Every single thing done for our family is seen and appreciated. <3

Nine things on the thankful list!

Of course all of this is making me feel so anxious and insecure about my upcoming birthday trip with my BFF. What if things continue on this track and I shouldn't leave? What if the bureaucratic crap means I can't afford it? What if, what if , what if....

I need a 10th thing to be grateful for....oh I know! K-cup packs for five bucks! Yup, that'll do.

I have hated this week, and I'm not sure next week will be any better since Mark still has to have that surgery. But I know my sense of humor and ability to be thankful for even the smallest things will get me through.

And that's what I really wanted to tell you.

Easy Blood Pressure Monitoring at Home

*This post is sponsored by the Ozeri CardioTech Digital Blood Pressure Monitor.I was provided with the product to review. All opinions are my own.

Temperature, heart rate, oxygen saturation and blood pressure are four "vitals" doctors and nurses like to get readings of on their patients.

ALL.THE.TIME. There is a reason people say hospitals are no place to get rest. After spending more time than I care to in hospitals with my husband, I can attest to the fact that doctors find it necessary to monitor these vitals around the clock.

My husband is on dialysis and his BP is checked every so often throughout every four hour treatment, three times a week. It also behooves us to have some sort of blood pressure monitor at home.

Maintaining level BP levels when you're on dialysis can be pretty tricky. My husband often deals with low blood pressure immediately after treatment. And then it can be high on an off-dialysis day.

I have never really trusted blood pressure cuffs you can buy for yourself to use at home. We've had manual and digital. I think I've most trusted the manual ones, oddly enough.

However, this new monitor I was sent is pretty cool.

Here are the product's main bullet points:

• New intelligent voice-guided feature alerts you to the proper positioning of your wrist for accurate blood pressure measurements.
• Automatically provides an audible hypertension assessment via a new talking function (as well as a display on the LCD screen).
• Portable, accurate, and simple-to-use with clinically proven technology, stores 180 blood pressure readings (90 x 2 users) with date and time recordings.
• Automatic Irregular heartbeat (Arrhythmia) detection and Hypertension Indicator.
• Push-button access to average blood pressure readings based on all readings in memory, AM versus PM readings, or the 3 most recent readings.

What I/we like about it:

• It's small, completely contained in the device itself. No arm cuff or need to be connected to something else.
• Comes with a handy-dandy hard protective storage box.
• It takes your BP on your wrist rather than your upper arm. I love this because it doesn't hurt or cut off circulation so much that my arm throbs and my hand tingles. (Yes, I tried it myself. I didn't make Hubs be the only guinea pig.)
• It TALKS, guiding you through the process of taking your blood pressure. Now, my husband would like the option of being able to turn that feature off, but as a visually impaired person, I find it quite helpful. Also, the voice feature makes doing something like this, which isn't fun by any means, and you may be doing when you don't feel well, a no-brainer.

I had my husband take the monitor to his dialysis clinic with him to test its accuracy against their blood pressure cuffs. He reported that the readings were pretty much the same.

Would I recommend the Ozeri CardioTech Digital Blood Pressure Monitor?

Yes, I would. I think it's a very helpful product for people like us who need it. (Um, otherwise I wouldn't have written this post, thankyouverymuch!)

Medical Emergency Preparedness for Kids

My two children, currently aged 13 and 7 1/2, have a dad who is a Type 1 Diabetic. He also has End Stage Renal Disease (ESRD) requiring dialysis, as well as a heart condition which necessitated he be given an Implantable Cardiac Defibrillator (ICD).

Phew! Lots of big words. Details for adults, really. All kids really care about is that Daddy has health problems and sometimes he has to be in the hospital. Also, sometimes at home, we have to call 911.

We recently got our daughter (the teenager) into counseling. We thought to help her better manage her ADHD as pertains to school. Not surprisingly, Camryn spoke to her counselor about her dad too.

The counselor told us that Cami has some anxiety about dealing with something happening to her dad when I'm not around. Like if I go out with friends, or if she goes out with my husband to run errands.

Camryn likes to go out with Mark just the two of them because she gets to sit in the front seat. That, and I think she genuinely likes to be helpful to her dad.

The counselor suggested that we could help alleviate Camryn's worries if we all sat down as a family and discussed exactly how to handle possible medical emergencies that can come up. Not only to discuss, but also come up with PLANS. Or specific instructions.

Obviously that's something we should do. I mean, of course, right? Sometimes you don't know if something is a good idea until an outside source points it out.

So we did it! I typed up an instruction sheet, and then the four of us sat down and discussed it.

Here is a generic version* of what my kids now have copies of:

**********

KIDS: If You Need to Help Dad On Your Own

Low Blood Sugar - At Home

If Dad seems weird, suddenly yawning a lot, not finishing sentences, getting sweaty, begins acting kind of goofy or loud, or if he’s sleeping and you can’t wake him up, maybe his blood sugar is low.

Try to talk to him. You’ll know if he’s not responding to you well. If he is low, but not too bad and it looks like he can take car of himself, offer to help, but otherwise let him. If he is really bad off, do the following:

1. Try to find and suspend his insulin pump.
-Once found (should be in a pants pocket) suspend:
Press ACT
Press the DOWN arrow once to highlight SUSPEND
Press ACT again, and then one more time (pump will vibrate 3 times)

2. Call me. ___-___-____. If I answer, I will try to help you help him. If I don’t answer, go on to #3.

3. Grab a phone, any phone, and dial 911.
- Tell them what is happening, that your dad is Diabetic and you think his blood sugar is low but you can’t help him.
- Our address is  __________________________________.
- They will give you instructions. Follow them.
- Firefighters or paramedics will come and help Dad and he’ll be OK.

Something Else is Wrong - At Home

If Dad is unconscious (eyes closed, you can’t wake him up) for any other reason that does not seem to be low blood sugar, just call 911 right away. Then call me.

General Instructions

If you can ever not reach me, here are some other people to try:
______________ at ___-___-____
______________ at ___-___-____
______________ at ___-___-____
______________ at ___-___-____.

You can go get a neighbor you feel comfortable with. BE SURE NOT TO LOCK YOURSELF OUT!

(If it’s AJ who is here alone, or if either of you need to tell someone, Camryn’s phone number is ___-___-____.)

Low Blood Sugar - While Out
If you’re in a store or any business with Dad, grab him a snack or drink, &/or try to ask someone who works there for help. You can try to fish Dad’s phone out of his pocket and call me.

Some Other Emergency - While Out
Try to get Dad’s phone and call 911, look around for a woman who can help you, call me.

Try to not be scared. Try to stay calm. There is always a way to get help.

*If interested, HERE is a link to a Google Drive copy of the above. If you have a similar situation to ours, you could use ours as an example, but customize it to your specific circumstance.

**********

The reality is that my kids' dad could have a serious medical emergency at any time. This is something I felt was best to do for my kids. Other families may handle it differently. Obviously, the older they get, the easier it is to educate them about these things.

For now, I feel a little better knowing we've talked about it all, and maybe they feel a little more empowered.

Stay This Way

My husband has been basically OK for over a year now and a thought occurred to me the other day.

If things could stay the way they are right now indefinitely, I could totally live with that.

Sure, he's diabetic and on dialysis. He has an implantable defibrillator and needs to use a cane to steady himself as he walks due to nerve damage in his feet.

But he's alive, able to continue working some and present as a father. This is more than I expected after his hospital stay a year and a half ago.

Then, I thought he could very well be on borrowed time. We were talking about making goodbye videos for the kids and even choosing songs that would adequately express things he's felt in his life that we could play at his service.

Slowly, very slowly, as time has passed and Mark has been holding his own, we have let go of those fears, for the most part, and just continued living. Living in the moments, with no expectations, with immense gratitude.

__________

Last week I published a post about my new friends, Steve and Tiffanie, who are were about to undergo a living donor kidney transplant. Unfortunately the infection that got in the way left a couple of wounds in Steve's belly that need to heal before they can go forward. Surgery has been put out for up to a month now. This is very disappointing. Necessary, but frustrating.

When I was writing about Steve and Tiffanie, I had no idea the curve ball that was about to be thrown in our direction when we visited with a kidney transplant doctor at the University of Washington just a day later.

Mark received a dual kidney and pancreas transplant back in 1996. We met in '94, so I was there for all of that. Two years later we got married, and two years after that we had our first child.

When Cami was 18 months old, in late January 2002, Mark's transplanted organs failed. He had to go back on dialysis and insulin. He was re-listed for another transplant at UCSF because that's where we lived at the time (and where he received the first transplant). When we decided to move to Washington, UCSF sent his files to UW where they took over his case.

Shortly after our move we made our first visits to the UW transplant team. They gave us some bad news, however. They told us Mark had a very high antibody count to a majority of the population due to his first transplant, and this would make it very difficult to find him a good match.

Then the heart problems began. One cannot go through transplant surgery if their heart isn't strong enough. Mark would have an abnormal heart stress test and be deactivated from the transplant list. Then he'd have a stent placed and a normal stress test, and be reactivated. This happened a few times.

Mark had a heart attack and eventually double bypass, after which he was obviously deactivated from the transplant list again. Then the arrhythmia in March 2012. All of these heart problems happening over the course of TEN years, plus the uphill battle of those darn antibodies....and you can imagine how we felt about the prospect of a new transplant.

It was not on our radar.

It was so not on my radar that when UW called and asked Mark to come in for an appointment, I figured the most likely thing they'd say was that they didn't feel he was transplantable anymore and needed to go ahead and just remove him from the list.

But that's not what the doctor said in her cute Irish accent.

She asked us if we would be open to a kidney only. Her reasoning is that doing both a kidney and pancreas is so much more complicated and dangerous, especially considering Mark's heart problems. She said she needs to see a CT scan and a dopplar study of Mark's legs. She needs to check for decent blood flow in order to safely hook up a new kidney.

Pretty sure we looked like deer caught in headlights.

You're telling us there's still a possibility Mark could have a kidney transplant and get off dialysis?

The doctor asked us how we felt about that. Mark said he would still prefer to receive a pancreas too, but he wouldn't turn down a kidney only. She turned to me. I said I feel like a new kidney would be a big improvement and something is better than nothing.

But wait. Really?? Could this really happen?

We have to have those tests done, but apparently yes, it is still within the realm of possibility.

I'm trying not to get ahead of myself until we know for sure if we can go ahead. Like, does this doctor know enough about Mark to be saying these things? What if she's completely wrong?

But if there was ever a time to be hopeful, I think it's now.

Did You Know? About Dialysis

When I tell people about my husband's health problems, I notice there seems to be little knowledge of End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD), aka kidney failure, and dialysis treatments.

(Please keep in mind that I am not a medical professional. My perspective is that of the wife of a man on dialysis for the last 10 years.)

According to the United States Renal Data System (USRDS), "1 in 10 American adults, more than 20 million, have some level of CKD". The most common causes of ESRD are diabetes and high blood pressure.

Mark was diagnosed with Type 1 Diabetes just after he turned 9 years old. By the age of 25, when I met him, his kidneys were functioning at about 20-25%. About a year and a half later, he needed to start dialysis.

The main job of the kidneys is to clean wastes and extra fluid from your blood.  If your kidneys fail, you will need dialysis or a kidney transplant to live.  These are treatments to help replace the job of the kidneys.

Dialysis is the artificial process of getting rid of waste (diffusion) and unwanted water (ultrafiltration) from the blood. This process is naturally done by our kidneys.

People in kidney failure cannot filter toxins from their blood and cannot produce urine. Thus, toxins and fluids build up in the blood stream. This makes one feel run down, sluggish, achy, bloated, and can cause shortness of breath and nausea. Someone whose kidneys have failed will die if they do not receive treatment. ESRD is considered a legal disability.

There are two main types of dialysis -- hemodialysis and peritoneal dialysis. Hemodialysis involves being connected to a machine which removes, cleans and returns the blood. Peritoneal dialysis involves using a sterile solution rich in minerals and glucose inside the abdominal cavity where the peritoneal membrane acts as a filter.

When Mark first needed to start dialysis, he chose peritoneal because it affords much more freedom to the patient since it is done by the patient at home. It is a great option. However, it turned out not to be the best option for Mark. He was not getting adequate treatments and just got sicker and sicker. Unfortunately he did not have a very good doctor at that time and this went on for 4-5 months before it was determined that Mark needed to be on hemodialysis.

Fortunately, it was only about another month before he received a dual kidney and pancreas transplant (Easter Sunday, April 7, 1996) at UCSF. Mark's transplant was successful treatment for six years before the organs rejected. He returned to being insulin dependent and on hemodialysis in February 2002. He is on the transplant list at UW, however his first transplant caused his body to create antibodies to the majority of the population, making him a difficult match. Also, his heart problems have forced UW to have Mark bounce back and forth from active to inactive several times. Your heart needs to be strong enough for the transplant surgery.

Dialysis is essentially a form of life support. Many people have chosen not to receive dialysis treatments and let their condition take its natural course, meaning death. Further, many people skip treatments regularly. Mark and I cannot understand why anyone would want to skip dialysis and make themselves feel crappy. Dialysis doesn't replace normal kidney function as it is, and the constant up and down imbalance of electrolytes causes complications (such as Mark's heart problems). The need for dialysis is not something to take lightly. Mark has NEVER skipped a regular treatment at his clinic, unless he was in the hospital, and then they dialyze him there.

Being on in-center hemodialysis is equivalent to a part-time job. The usual schedule is three times a week for about four hours, which equals twelve hours every week. Mark does this, plus an extra treatment on Saturdays, equaling 16 hours a week.

Several years ago I read an essay a dialysis social worker wrote. She decided that in order to better understand the patients she needed to better understand what a dialysis treatment is like. With the help of the techs and nurses in the clinic, she performed an experiment on herself. She sat in a dialysis chair for four hours, with the lines taped to her arm. She simulated the fluid load by having bags of saline placed all over her body, and then slowly removed as her "treatment" progressed. She thought she could read a book, but her tethered arm made that difficult. She closed her eyes and tried to rest, but the beeping alarms of the machines kept waking her up. All in all it was a very frustrating experience and she came away with a new-found respect for dialysis patients.

If you've managed to get through this entire post, thank you. Now you know more about what dialysis is like. Knowledge is a good thing.

I can't close without also pleading with you to become a registered organ donor. I believe it is our moral obligation to let doctors have whatever parts of our bodies they can use to help others after we die. Do you know they can use everything from skin to organs to the corneas of the eyes? There are so many people waiting for organs, my husband being only one. You can also donate parts of your body while you're still alive, such as blood, bone marrow, a kidney and part of your liver. Imagine being able to save a life! The key is to make the decision, and then tell your loved ones about your decision. They need to know because they will have to make the final decision for you.

OK, off my soapbox! Again, I thank you for reading this.

Climb Aboard the Hall Family Roller Coaster!

I posted this on Facebook on Monday: Climb aboard the Hall Family Roller Coaster! Sit down & buckle up. Our ride begins with a broken chest wire, we will pause for just a sec to remove it, there will be several very fun loops and things during a perfectly normal weekend and then we will end by heading back to the station (hospital) for IV antibiotics. Enjoy the ride!

I am so witty online!

For those of you who don't know, my husband Mark had heart bypass surgery a little over a year ago and they use wire similar to piano strings to hold the chest plate together for healing.  Well, Mark broke one of them, possibly by sneezing hard, it got infected and he needed to have it removed.

And now....

My husband is in the hospital with a staph infection requiring IV antibiotics after he tried to get himself treated before it got to this point.

I am angry, frustrated, bummed and completely OFF.  I just wrote last week in a post about my priorities how when something is not OK with one of the four of us, everything feels off, and here we are.

I know I remind the world all the time of Mark's health conditions, but it seems to be necessary, even to the medical professionals who care for him.  He is a Type 1 Diabetic, has been since the age of 9, with a 6 year reprieve when he had a successful kidney/pancreas transplant.  He is 43 now and since losing his transplanted organs, has been back on insulin and dialysis for nearly 10 years.

These things make him extra susceptible to infection.  Last year when heart bypass was required it was discovered that he had pericarditis, a septic staph infection SURROUNDING HIS HEART.

People?  Mark may have survived that, but this is not a man we take chances with!

So yeah, I and just about everyone we know are pretty frustrated that Mark's doctors dragged their feet on this.  That might be a bit of an understatement for me.  Because a staph infection could KILL MY HUSBAND!

I don't think this is just me being melodramatic.  Or maybe it is....buuuuuttt it happened to my uncle.  It happens all the time.  It could happen to Mark.

On the other hand, I do think PTSD from "the night from hell" is rearing its ugly head right now.  I am having to force myself to see this as a separate thing.  I am having to force myself to not think about death.

And it's really hard to do.

This infection was caught early, in spite of the initial bumbling efforts of the doctors.  This will be OK.  Mark will be OK.  EVERYTHING WILL BE OK.

This is just another hiccup, bump in the road, minor inconvenience...yada, yada.  I feel like people think I should just be used to this.  That these things happen with Mark and we just have to deal them.  Well yes, that's true, but "these things" are actually serious, and they suck.

I'm allowed to hate it, aren't I?

I'm allowed to hate taking my kids to see their dad at the hospital.  I'm allowed to hate all that Mark has to deal with.  I'm allowed to hate what I have to deal with, what our parents deal with, and our friends deal with.  That there are perfectly healthy people out there who have no flipping idea how good they've got it!  I hate it all.

When you've been traumatized the way I have it can be hard to be OK with the little hiccups.  They tend to all feel like big, scary things.

It's almost Christmas.  Mark had his first heart attack on Christmas Day of 2008.  Such lovely timing.

I'm sorry if this post is rambling and doesn't totally make sense to anyone else.  Just gotta get it off my chest.

We're hoping he will be able to come home today and we can get on with Christmas....

(This post was linked with Shell's Pour Your Heart Out at Things I Can't Say.)

* *

Update 12/27/11: Mark did come home that day, but it was difficult to "get on with Christmas".  He was really tired and bothered by the wound vac they sent him home connected to.  We were both very tense and on edge all the way up to Christmas Eve.  But Christmas Day was great!  We had fun, the kids loved their gifts, we saw extended family and had a fantastic dinner in spite of a power outage.  Yesterday, at the Wound Ostemy Clinic where Mark has his dressing changed, the nurse said his chest is healing so well and so quick he may not need the wound vac much longer.  This I believe is due to all the care and concern from both and near and far, and I am grateful.  Oh, the roller coaster!

#37

TGIF: Diabetes Edition

It's 11-11-11 and Veteran's Day!

Yay Veterans!

And welcome to....

<a href="http://jah-justjennifer.blogspot.com/" target="_blank"><img border="0" alt=""src="http://i1200.photobucket.com/albums/bb331/JenAnnHall/Becky_TGIF-1-1-1-1-1.png" /></a>

Go HERE to read all about how this came to be.  Basically, it's about ending your week on a positive note!
To participate

1. Write a post about something good that happened this week (or if you don't blog, tell me by leaving a comment). It can be anything. Just keep it positive!
2. Grab the #TGIF button and include it somewhere in your post.
3. Come back here and link up.  Linky is open all weekend (even if I publish a new post).
4. Visit other linkers, leave comments and consider giving them a follow (it would be nice if you followed me, but no pressure).
5. Share posts on Twitter, Facebook, StumbleUpon, etc, if you are so inclined!
6. TGIF is now open to guest posting!  If you want, instead of just linking your post to mine, you can be THE poster here.  Just let me know by Thursday of the week that you want to do it, and I will happily step aside and let you take the floor!  Be warned, if no one volunteers, I might put you on the spot and you will feel obligated to do it because you love me!

* * * * *

Today I'm sharing something Important with you.  Important to me and important in general.

The post I wrote on the 1 year anniversary of my husband's double bypass surgery, The Worst Night of My Life, was published over at Band Back Together yesterday.

I submitted it to BB2G because I have started sharing my (and Mark's) struggles with dealing with his Diabetes and dialysis over there.  I feel they are two things I don't see a lot of people talking about.  We talk so much about cancer, heart attack (obviously another thing for us, but for Mark, it all starts with Diabetes), stroke, depression, obesity, abuse and even erectile dysfunction.

And all those things matter too.  It ALL matters (and it sucks that it matters).

But it seems to me that Diabetes is something everyone just accepts as some common condition that is totally manageable and easy to deal with.  Well it's not.  It's a serious illness that effects many aspects of life.  Yes, you can manage it, and yes, you can live with it for a very long time.  But it's hard.  And that's something I'm not sure people understand.

So I will continue to talk about Mark's health problems both here and with The Band.  Both for myself and to maybe help others.

Even if you've already read it, maybe you could check BB2G for my post and let me know you did.

And by the way, if there is anything you struggle with in life, The Band is a really great place to find information, put your stuff out there and get support and find kindred spirits.  Because...we are none of us alone!

November happens to be American Diabetes Month (I swear I didn't plan this!).  Click the link to find out more.  You can go to the ADA's Facebook page too, and post your own pledge to help Stop Diabetes.  I did.

Also, Elena at C.Mom and her daughter Princepessa wrote two posts about the morning Princepessa found her dad sitting in bed with a low blood sugar.  This is something that happens to Mark several times a year.  I thought it was awesome of Elena to share this story, again, because I don't think Diabetes is talked about enough.  So go check out her posts, and let her know I sent you!

Of course, It wouldn't be TGIF without a little something to make you smile....because if we didn't laugh, we would cry....

Write something, link up and make me smile!

I Am Grateful for You

We can do no great things, only small things with great love.

~Mother Teresa

I have written entire posts about, or alluded to, my husband’s health problems and more specifically his heart attack and bypass surgery no less than 15 times since last September. That’s an average of 2.4 times per week.

I write about gratitude regularly.

However, I have never written about my gratitude surrounding the events of last Fall.

I think I should.

Disclaimer:
I am not by any means grateful that Mark had another heart attack requiring double bypass surgery. I am not grateful that he had a septic staph infection surrounding his heart. And I am not grateful his heart stopped 3 times. Nor am I grateful for the 2 weeks he spent in the hospital and the total of 8 weeks he spent on antibiotics and with sternal precautions. Along these lines, I am actually grateful that the doctors found a bone infection in a toe on his left foot and amputated it so it couldn’t get any worse.

What I am truly grateful for are the PEOPLE in our lives, those who were there for us in so many ways.

Mark drove himself to the ER and when we found out they needed to look at his heart my dad went to the hospital since I was home with my kids. My poor dad had to be the one to call and tell me it was bad and they needed to do surgery the next day. For some reason my aunt and grandma were there with my dad and my aunt came and got me and my kids so I could be at the hospital to sign papers and get all the information. I am grateful for their immediate logistical help and support.

Right after I spoke with my father I called my friend Jessica crying. She was in the middle of trying to celebrate her husband’s adoption of her son. I felt horrible that another drama of mine was interfering with that. But because Jess is so sweet, she simply shifted gears and contacted our mutual friends to tell them the news and start rallying the troops. When I talked to her again later that night and couldn’t articulate what kind of help I needed, she seemed to just know. I am grateful for Jessica’s calmness and intuitiveness.

I try very hard to keep my kids from being burdened by their dad’s health problems. They operated on Mark first thing in the morning, but I wasn’t at the hospital for it. I decided to be home with my kids to get them off to school so they could have a normal day. That was probably for the best too, because I would’ve just been a nervous wreck at the hospital. I am grateful for my children because they give me equally important things to focus on when we have these crisis.

After taking the time to focus on my kids in the morning, I was then able to hand them off to my friends Carin and Roxy. When my friends have my kids I know I don’t need to worry about them a bit. Carin got my kids and Jessica’s kids off their buses (because Jess was with me). Roxy ended up staying with my kids until very late that night. I am grateful for my fellow mom friends who care for my kids and give me peace of mind. I am also grateful for their teamwork.

The day of Mark’s surgery Jessica took me to the hospital and stayed with me for the rest of the day and into “the night from hell”. Most of the day was fairly typical I guess. Just spending time by Mark’s bedside and getting reports from his doctors and nurses. My dad and aunt were also there some. We all spent the time talking about things, planning logistics for me and the kids, updating other family and friends and thinking everything was going to be just fine. I am grateful for the companionship.

About 9:00 that night I decided I should probably go home. Jessica and I were maybe halfway when the hospital’s spiritual counselor called to tell me I should come back because Mark had coded and been resuscitated. When we got back, I asked Jessica to come with me to Mark’s room. I’m pretty sure that was the last thing she wanted to do, but she did. After I saw Mark, Jess held me while I cried and held my hand while people talked to me. Carin showed up a little while later. I was sitting in the waiting room with the 2 of them and on the phone with my mom when the counselor came out and told me Mark had coded and been resuscitated again and that I needed to go in there and have a little talk with him. I am grateful that I had 2 people I trust physically with me, my mom praying for us and this wise lady telling me to suck it up and be strong for Mark.

I am so very grateful for Mark’s nurse and doctors that night who saved his life 3 times.

In the days that followed Jessica organized childcare, rides and a mini food drive for my family. Several people contributed food and household items we needed. Jess also cleaned up my house a bit because my in-laws were coming and even carted her 3 and my 2 kids to a Girl Scout meeting. Carin, through the job she had at the time, arranged a discount on hotel rooms for Mark’s parents. J Ho cried with me on the phone, wishing so badly she lived closer. Our friends and family were at our service for whatever we needed. I am so grateful for this.

In the weeks that followed our family and friends continued to show their support by visiting Mark in the hospital, with rides to and from the hospital for me, spending time with my kids, checking on us and how we were doing with Mark’s IV antibiotics, taking Mark to and from dialysis and follow-up appointments…..

I AM SO GRATEFUL FOR ALL OF THIS.

People need people.

"Independence"... [is] middle-class blasphemy.
We are all dependent on one another, every soul of us on earth.

~G.B. Shaw, Pygmalion, 1912

Diabetes is Dumb

That's putting it mildly, but I have this aversion to swearing on the Internet so I try not to.

Diabetes is an insidious disease that kills you slowly over time.  That is the honest to God truth.  Even if you take excellent care of yourself, if you have Diabetes some complication which it causes will most likely lead to your demise.  I don't even want to list all the problems that can crop up because it is too long and depressing, but suffice it to say, Diabetes is the leading cause of blindness and kidney disease, two very terrible and permanent afflictions.

I married a man with Type 1 Diabetes and over the years have been watching it take its toll on him.  It actually started its insidiousness in Mark before I met him.  He was diagnosed at age 9 and by 25 he was legally blind, had lessening kidney function and neuropathy had begun in this feet.  Once his kidneys failed he was blessed to receive a kidney and pancreas transplant which commenced a 6 year reprieve from Diabetes.  There is a lot that goes into taking care of transplanted organs too, which can make it feel like you've traded one disease for another, but it was indeed a healthy time.  We got married and had a baby during those years.

Mark has been back on dialysis and insulin since winter of 2002, another 9 years now, and there isn't much hope for a second transplant due to antibodies in his system from the first set of organs.  The other problem is, Diabetes and dialysis have caused complications with his heart which ultimately led to his double bypass last September (after several angiograms, angioplasty and stent placements failed), and one very important thing you need in order to undergo transplant surgery is a strong heart.  So he has been listed as active and inactive on the transplant list over and over since 2003.  Each time an "abnormality" shows up on a heart stress test, he is deactivated, then after treatment and a clear heart stress test he is reactivated.

I'm pretty sure one's heart can be strong enough for surgery after bypass, but there's still the antibody issue.  Therefor, in my mind Mark will likely live this way for the rest of his life.  However, one never actually voices this to him.  He still focuses on the possibility of another transplant because it gives him hope.  I can't argue with that, nor should I try.  Taking away some one's hope is cruel.  And despite everything Mark goes through he is one of the most positive and upbeat individuals I have ever known.  It's one of the qualities that makes me love him and how he has taught me so much.

Case in point: sometimes Mark goes through phases of insulin sensitivity.  Meaning he can get low, have an insulin reaction, easily and for no apparent reason.  He seems to be in such a phase right now (which is why I started this post).  The night of my birthday this past Saturday, after a great day in Leavenworth and eating plenty of food (too much if you ask me), Mark ran to Walmart to return a movie and get me a bottle of wine and proceeded to get low while there.  I had a strong feeling something was wrong because this little errand was taking way too long.  He realized he was low himself when he stumbled and bumped into a few people.  They asked him if he was OK and he said his blood sugar was low.  Someone got him some orange juice, he drank it and was feeling better, so he got my wine (and a box of cereal because he thought it might look weird to be low and buy just wine).  But he didn't make it out the door because his sugar was still too low so someone called 911.  Paramedics/EMTs helped him and even drove he and his car home.  I'm not proud, but I was really angry for a little while, not understanding how this could've happened.  Mark tried to reach out to me but I pushed him away.  But, I didn't want the day to end on such a crappy note, so I suggested we find something funny to watch.

Mark spent yesterday afternoon hanging curtain rods in our and Cami's rooms.  At 4:30 he realized he needed to eat and he did.  Then we had dinner around 6:30.  Between 9-9:30 he was getting low again.  He said he hadn't taken a bolus of insulin with dinner because he didn't eat much carbs.  While in the kitchen trying to fix himself something to eat his sugar crashed to the point where he was totally out of it and couldn't stand up anymore.  He had made some toast so I moved it to the table hoping he'd go sit down at it to eat.  I tried to help him walk but he wouldn't let me.  I kept trying to help.  He still wouldn't let me, even though he was about to fall flat on his face.  Thankfully he manged to just slide down to the floor, but not without totally fighting it first.

Once he was safely sitting on the floor I stuck a straw in the cup of milk he had poured and tried to help him drink, but he kept leaning away from me.  I started to get scared that he was going to remain uncooperative and yelled at him to just freaking drink the damn milk already!  He then decided I needed to give him the cup so he could do it himself.  I loathe giving him a cup of liquid when he's low because he will most likely spill it, which he proceeded to do because he kept moving the cup around trying to keep it away from me even though I had backed off.  Mark is like a drunk 2 year old when his blood sugar gets so low!  He was yelling at me to let go of the cup (I had) then he spilled it and I burst into tears, crying as I sopped up milk.

Sometimes if I get upset during an insulin reaction he will hear it and it will make him think just clear enough to actually start consuming something.  He chugged what was left of the milk and I gave him the toast he had made and got him more milk, crying the whole time.  Once I knew he was getting sustenance I went to the bathroom for tissue...and to keep crying in private.  Sometimes I cry out of utter frustration with the way Mark is behaving.  And I was frustrated, but it was more than that.  I was crying so much due to fear.  Yeah it's irritating, then on the flip side, kind of funny after the fact.  But it's also very disconcerting to see Mark be completely different from his normal self....not to mention where my thoughts invariably lead me....this is hurting him....he could die if I can't help him....please God, help me make him better.

Now here's the kicker.  He's feeling a bit better and sits down at the table to just chill.  I'm sitting on the couch and keep looking over at him, asking if he's doing OK.  One time he says he's wishing something would just go his way for once.  Well this hurts my heart so I go over and comfort him.  The next thing he says is "but I'm so grateful".  Grateful?  Now?  What for?  "Because you're here", he says.

I am here.  I am 100% here with Mark, and our kids.  This is what I do, who I am.  Even as I often hate Mark's health problems, want to scream and throw things and not do it anymore, I am completely in love with my family.  How do I reconcile these conflicting emotions?  Hell, life is a massive jumble of conflicting emotions!  All I can do, all any of us can do, is focus on the good, laugh and sprinkle in plenty of other things that make us happy and fulfilled too.  Such as friends, hobbies, work, music, books, movies, great TV shows, food and wine, nature, pets, birthdays, Christmas, caramel....

Diabetes is still dumb.  Watching someone you love struggle is dumb.  Being afraid all the time is dumb.  Anything that sucks is dumb!  I wish it would all go away.

On the other hand....

"We have no right to ask when sorrow comes, `Why did this happen to me?' unless we ask the same question for every moment of happiness that comes our way."

~ Author Unknown

Detour

We have hit a detour on the moving road.  Had planned to go to Michael's for Cami's spray glitter and then try to get dressers moved today.  But Mark needed to turn off and go to the ER for a dialysis treatment.  So the kids and I are just hanging out at the apartment.  I suppose one could argue that a break from all the craziness isn't the worst thing in the world, and that Mark's health is of utmost importance.  But, yeah.....still wish it didn't have to take an ENTIRE day!

Mark has been struggling with his fluid/sodium/phosphorus levels the past few weekends.  We're busier than usual, having a lot to do by June 15, and we're not eating well and have strayed from our normal routines.  Plus it's all a little stressful.  Totally understandable while moving.  But it's obviously taking a toll on Mark.  Maybe I need to try to help him more.  I simply HATE it when he doesn't feel as good as he can!  And then icky thoughts creep into my head..... I literally have to tell myself to STOP thinking them.  I wouldn't wish health problems on anyone.

Mark just told me he has to stay overnight.  Of course!  They always find a reason to keep him at least 1 night!  Apparently they want to make sure it's not his heart because of his shortness of breath.  I reminded him that this has been happening every weekend like clockwork lately, but he's fine the rest of the time.  I guess the cardiologist said some certain levels were slightly elevated which could indicate a teeny, tiny little heart attack.  So they want to recheck those levels first thing tomorrow morning.  But they're also gonna have to take into consideration that tomorrow is his regular dialysis day too.

OK, I'm gonna have a selfish little meltdown here for a minute..... My plans, thoughts, ideas of how things will go in our lives are constantly getting screwed up!  My Mother's Day was ruined cuz Mark had bronchitis and that was a very stressful time cuz we were also closing on the house.  We had this huge fight over plans for yesterday, that Mark had things he wanted to do wtih his friends but I had obligated him to do something with kids.  Well not only did he get to go shooting and hang out with friends yesterday, but he also hung out with John on Friday.  I was hoping to get to sneak off to see Splice with Jessica tonight, but now I can't.  Mark often thinks everything is conspiring against him and what he wants.  Well, he's gonna have to revise that idea cuz it looks to me like it's ME who's getting shafted lately!!

See now, while I feel like that on one hand, on the other, he's still the one getting screwed with isn't he?  He's the one with all the health problems and has to spend the night at the hospital, not me.  I'm just visually impaired so I can't really keep doing the things I wanted to do today cuz I can't drive, and stuck at home cuz the kids need me.  Whatever.

I'm missing my mom more than usual lately.  It's going on a year since I've physically seen her and we really should talk on the phone more often.  She mentioned possibly flying Cami down to see her in August, but I'm honestly not very happy with that idea.  What about me?  What about AJ?  Is 2 years in a row really necessary?  We don't really like going to Oregon 2 summers in a row.  I know Washington isn't my mom and Doug's destination of choice.  But I'm here.  Shouldn't that be enough?

Things with my friends aren't getting any better.  Actually I guess you could say they're worse.  I had a debate with Roxy about Serra and Jessica this week that was really frustrating.  I was very surprised by the things Roxy said to me.  She may have also been surprised by the things I said to her.  She defended Sierra and I defended Jessica.  I never in a million years would have thought that would be the way things shook out.  It's so disappointing to learn that something isn't the way you think it should be.  Regardless, I feel I'm more right than Roxy cuz she doesn't really know all of what she speaks since she hasn't actually talked to Jess about it.  And I don't think they're gonna talk about it any time soon since Roxy doesn't feel like it right now and Jess is hurt by the things Roxy is thinking.  I decided to tell Jessica about my debate with Roxy after struggling with it overnight, and then hearing from Sierra that she does plan to come out for Roxy's birthday GNO.  Once I knew that, I felt Jess should know so she wasn't ambushed the night of.  Jessica is glad I filled her in, but I feel like it did exactly what I was worried it would do, which is only hurt her more.  What's done is done I guess, and I've been told that I can't fix it.  It's not for me to fix.  I just wanna know one thing: why do some people have to be such jerks?

Guess I've also had a detour of the mind today!
"Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something." ~Lord Chesterfield