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..
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.