Trying to keep my hopes up for the future...

Trying to put the last 2 years into words is hard for me.  I actually think that one of my strongest "coping tactics" is being able to completely block out some thoughts.  That is usually not very hard for me to do, since it seems that from the moment I wake up to the minute I hit my pillow, I am constantly busy.  But sitting here in a dark hospital room with nothing but the sound of the air conditioner and his CPAP machine to listen too... the mind starts to wonder.  Oh and the joyous sound of him vomiting again...can't leave that out.  That particular souind just reminds me that they still do not have the that situation under control.  Just fabulous since that is the whole reason behind this trip to the hospital...

Ok, let's back it up a bit. 

My name is Ashley.  And I am not sick.  I am a caregiver to my boyfriend of 5 years, D.  Trying to describe how wonderful of a man he is would be pointless.  Would take far too much time and energy.  Let's just say he is amazing and that I love him very much. 

D has been type 1 diabetic since his teens (20+ years).  A little over 2 years ago, when going for a routine appt with his endo doc, some numbers came back that were throwing out some massive warning signs.  He was sent immediatly to have additional testing done and, long story short, kidney function was at 5%.  Off to the hospital we go!!  All the medical staff were amazed that he was not experiencing any pain. It is too late and I am too tired to try to recall all the specifics of his lab testing that day, but REALLY BAD pretty much sums it up. 

This happened on the Friday before a holiday weekend.  We lucked out with a cool Dr. that didn't make us stay admitted in the hospital all weekend, as long as we followed our strict discharge orders to a T and called if anything worsened.  Dialysis would begin the following Tuesday...

Needless to say, our minds were pretty much in shock.  We both would of never guessed.  Sure he had been more tired and run down lately and couldn't mow the whole yard in one stretch anymore, but hey...it was HOT!  Maybe he was getting a bug or was a little dehydrated.  These were the thoughts we discussed when the topic came up.  What was not discussed was ESRD.  Never even crossed our minds..

So the life of a dialysis patient began.  We have been through in center hemo - extremely hard on him, PD - stomach lining failed, back to home hemo while a fistula was placed (1st one failed) and then another upper arm fistula was placed (worked great!).  We have come to find out that D is pretty much the exception to almost every rule.  For example, most people have problems with BP bottoming out when they are placed on the dialysis machine.  Not my D, oh no.  His would sky rocket.  Then add in the super fun complications of the diabetes and HEY! good times for sure. 

We decided to give home hemo a try when NxStage was brought to our attention. All other types of dialysis were extremely hard on D.  We literally were making ER trips every other night for what seemed like a very long period of time.  I asked the admitting nurse it I could maybe get my own reserved parking spot??  Didn't happen.

Since the 2nd fistula had just been placed we thought there would be a little bit of a wait until it matured enough to be used.  We were using a CVC during this period.  The CVC was actually a great access for us.  We used it successfully for a longer period of time than most people do, without incident, but eventually the labs started showing very small signs of infections and POOF!  There goes the CVC.  Luckily, the upper arm fistula had matured enough to be used. 

I was really stressed during this period of time.  I have a tendency to be slightly over attentive when it comes to D's health.  Some would call it anal...I call it thorough. I had just gotten to where I didn't have a small anxiety attack every night when we would do his treatment through the CVC.  Now I have to learn how to stick him???  Did I mention that I have always had a phobia of hypodermic needles? 

But we made it through.  I didn't have any other choice but to master it.  And I did.  I am proud to say that.  The one thing I have learned from all of this is that there is nothing I can not do.  And do well.  Not when  it matters.  Our PD nurse, who we keep in  contact with still to this day, has even tried to lure me into a career in the nursing field.  NO thanks.  My love for him is the only reason I do what I do. 

So life went on.  I work full time in the HR field.  My work is an hour drive one way.  Sounds crazy right?!  I don't know how many times I have been asked if I was planning on trying to find something closer to home.  My answer has been and will continue to be NO.  I have worked extremely hard to get where I am.  And I work for an amazing company that is very flexible with me when it comes to D.  They know that no matter what - my work will be done.  And done well.  I may not of really slept more than a few hours in a couple of days...but work is taken care of and so is D.  I get up at about 6 every morning (depending on how severe my snooze button is abused) and would get home about 6 at night.  D usually had dinner taken care of, so we would eat and I would try to have him on the machine by 8 and finally collapse into bed about 4 to 5 hours later.  We did treatment 6 days a week. Saturday was our day off so that day was used to catch up on the rest of life.  (cleaning, laundry, groceries) and HOPEFULLY a little rest.  Believe it or not, I actually think I now function better on about 5 hours of sleep then 8.  Too much and I am exhausted all day.  Oh and God help you if you cause an interruption on my "sleep in Saturdays"

On June 4th, 2012, D called me at work.  Pretty unusual since texting had become the normal communication when I was at work.

Hate to do this but D is up and I gotta go.  And if I don't post this now..I probably never will.  Promise to come back and finish as soon as I can..

A

Today is July 14th.  Let's see if I can finally finsh this "into". 

As I said earlier, June 4th - I was at work.  Had just come back from grabbing some kind of lunch.  Can't even remember what it was.  Something greasy and not healthy at all I am sure.  Esp since it was a Monday.  Was trying to get dug back in to my payroll for 450 people that was due by 2pm the next day, when my phone rang.  It was D.  Since he was actually calling instead of just shooting me a text, I immediately thought "uh-oh".  A call usually meant something bad.  Sounds sad now that I am reading it back to myself..but that's the way it had become after the previous couple of years.

So I answered the phone.  "Are you sitting down?" he asked.  I immediately sank into my chair and asked, "Who died?"  He then told me that he had gotten the call (well voicemail actually) and that we needed to head to the hospital because we were back up for the kidney/panc transplant that we had been listed for.  I was dead silent.  He went on talking...I have no idea what he said.  In fact, when I had made it to my car to race home, I had to call him back and have him repeat every single thing he had said to me after "I got the call".  I have to be honest here.  I never put any real thought into it actually happening.  I had just decided that the way we were living was the way it had to be.  Put a smile on my face everyday (or try at least), give it my all, make it thru, one day at a time.  Why waste precious brain space and time daydreaming about how things may one day magically get better?  That day was not realilty yet, and the present had much more pressing and important issues that required everything that I had to give.  I am not a pessimist.  Or an optimist.  I like to consider myself a realist, and at that point my reality was making the best of each day. 

The rest of that day is a blur. Race home, grab him and his stuff - didn't grab one single thing for myself, not smart - race to hospital, and WAIT.  We found out that we had become primary and that it was all a go around 4am on June 5th - my 27th birthday. Surgery was a success.  He was making insulin and producing urine before they could even get him off the table.  It lasted about 5.5 hours. I was having a hard time wrapping my head around it. So many thoughts were ramming into my brain at lightning speeds.  How wonderfully grateful we are, the never-ending thoughts of the donor and his family, the also very prominent thoughts of the original primary recipient.  I remember thinking, I just can't believe this.  It actually happened.  We are going to get to live life now.  Be (relatively) normal people.  We have made it through alive and still fighting.  We have won. We can get married.  We can go on vacation.  And most importantly, I will get to watch - every single day - him experience life as a healthy person.  He hasn't been able to do that since he was a kid.  It was always something with the diabetes or dialysis or something.  So exciting in so many ways.  We were going to start living life. Brings tears to my eyes to remember those thoughts and feelings, today. But the reasons for that are for a different blog post.

 

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Comment by Auntee Nae on January 5, 2013 at 1:44am
This is a beautiful story. It reminds me of my life...as a kidney donor AND care giver for my mom. I worry constantly & even now, after surgery. Things are better now, 6 months post transplant ...but I still worry constantly. Does anyone else have this problem? If so, how do u cope?
Comment by AshleyRose on July 14, 2012 at 1:55am
Hi. Gave myself a moment to check on here before heading to dreamland. All of your words brought tears to my eyes and a smile to my face. I needed that more than you could possibly know. Yesterday was the worst day I have had in a long time. Felt like I was breaking from the inside out. Today was better, slightly. I am hoping the pattern continues on into tomorrow. New Day! So again, thank you.
Comment by River on July 14, 2012 at 1:41am

Hi Ashley.

Just want you to know that you are not alone. Lots of us have been there or are still there. Most people have no idea what you are going through, but we understand. Being a caregiver is one of the hardest things there is. But I also think that it makes you a better person (if it doesn't kill you first). You have to be a pretty special person to even get where you are now.

 

My wife of 28 years had type 1 diabetes for 40 years. I say had, after her kidney/pancreas transplant her A1c is normal now. Still has other problems and we still make a lot of trips to see doctors, but life is much better now.

 

Things will get better for you and D also. I'm sure of it.

Comment by Steve on July 8, 2012 at 11:20pm

Hi Ashley,

I am so impressed at how well you were able to express yourself as a caregiver.  My wife has been my caregiver through cancer (1987) and through my heart problems that began in 1996 with a heart attack and through heart transplant (2010) and now post transplant.  I know how difficult it is for the caregiver.  Caregivers are the unsung heroes.  D is so blest to have you.  Please continue with your blog.  Give my best to D.  You both are in my thoughts and prayers.

Comment by Walt B on July 8, 2012 at 10:44am

Ashley,

I think that you have begun to clarify the fact that care-givers have as difficult of a time as the chronically ill.  Perhaps an even harder time!  I'm impressed with your writing style and how you seem to be coping with he current situation.  May the two of you find the skills, support and the strength to come out of this intact and stronger for the effort.

Comment by Hostess Risé on July 8, 2012 at 8:24am

Hi Ashley

I just added this blog to our stories page.

http://www.transplantfriends.com/page/transplant-friends-stories

Comment by Mark on July 8, 2012 at 7:54am
Hi Ashley, welcome. I was about to post a quote in another group but after reading your comments it seems more appropriate for it to be on your page.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” ― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey

Take your time in coming to grip with your feelings. They weren't created overnight :)
Comment by Hostess Risé on July 8, 2012 at 7:29am

Hi AshleyRose

I love your writing style. You are one in million. Welcome to our world-what a great example of a cargiver you are.  Join our caregiver group here.

Give my regards to your precious D.

Hugs

Rise'

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