2 Years on Dialysis

August 20, 2017 | By Terry | Filed in: Default.

Hello my peeps! I was sitting around this morning and opened up my blog site, and realized I haven’t made an entry in over 5 months. Time to fix that!

Last week was my 2 year anniversary on dialysis. 24 months. 2 months of hemodialysis, and 22 of those have been on peritoneal dialysis.  Wow.  2 years. It’s not easy to explain how much my life has changed in the past 2 years, but it’s something I’ve become accustomed to believe it or not.  Let’s do some math. 22 months of PD – 4 treatments per day, every day.  That’s 700 days times 4 = 2800 treatments. Each treatment takes about 30 minutes – so that’s 1400 hours of being chained to a pole, draining and adding fluid to/from my abdomen. Think about that. 1400 hours. Unreal.

Living in 5-8 hour segments (24×7) really makes you re-assess how you live your life.  Even basic things such as running errands, hanging with friends, visiting family.  You can’t just up and leave on a Saturday morning and plan on returning “sometime that day or night”.  Nope, you have to know exactly when you are returning.  Or take dialysis supplies with you to do a session on the run.  I’ll do that from time to time, but for the most part, when I do run errands or visit people or go out to socialize, I make sure I’m not too far away.  It’s much easier to just do my treatments in the comfort of my home.

For the first year I decided I wasn’t going to let this situation control me. I was bound and determined to maintain my same life.  Go on vacations. Go to a million concerts. Don’t be stuck at home all the time.  I’m Terry GD Angel, and I’m not going to let this thing control me.

So, in that first year or year and a half, I did all that. I went on the Rock Boat. I took a few weekends to Chicago. I visited New York City for 4 days. I spent a weekend in Minneapolis for a Colts/Vikings game. I went to Rock By The Sea Lite.  I hung out with friends on Mass Ave. I went to the gym 3x per week. I was living alright. Come to find out, I was living too hard. It was literally wearing me out.   I figured out that while it was fun to do all things, I wasn’t really enjoying it as much as before.  I was passing out from utter exhaustion by dark each night.  (What, you were asleep at dark on the Rock Boat? – yep, or not long after). This is why I didn’t go on TRB 17… It just wasn’t the same anymore.  Through it all, while I do have some fun memories, I also have memories of being utterly exhausted – and those usually overshadowed the good.  I felt shortchanged in all these activities, as honestly I wasn’t really experiencing them in the same ways I was before.

If you recall, about 5 months ago I  posted about my cousin Dennis deciding to give me a kidney. He’s dedicated his life to help me for the past 1.5 years – losing over 50 lbs to become eligible – and I’m truly indebted. It has taken what many would consider a very long time – but he’s such a good match for me it’s definitely worth the wait.  Sure, I could have told him “thanks but I need something quicker”, but first there’s no guarantee there would be something quicker.  Second, having a living-related donor is the best possible match, so it’s worth the effort and time of waiting. Third – If you have someone willing to go through everything Dennis has done for you, you don’t complain about the wait. It’s worth it!

Anyway, since I knew he was getting closer to his target weight, and I was wearing myself down by “living like I always used to”, I decided back in March 2017 that I was going to slow down.  I decided to sacrifice the Spring and Summer of 2017 to just “wait”.  To give my mind and body a break from all the activity.  Rest more, slow down, and just get through this last phase.

So that’s what I’ve done.  My closest friends haven’t seen me nearly as much as before. I don’t go to nearly as many concerts. I haven’t taken a vacation since September 2016.  I missed a dear friend’s destination wedding, which was the hardest thing for me to do through all this. Sure I could have made an exception and went, but in the end it was better for me to stay home. So for all of 2017 so far, I have come home after work each day, and just relaxed, and have gone to bed around 9 or 9:30 each night (weekends included).  I’m up at 6am every day (weekends included) feeling great.   I run my errands, I’ll visit friends or family here or there, but I always make sure I’m back home to do my treatment every 5 hours.  I’ve found it’s so much easier to live my life in these little segments as opposed to trying to live on the run “like I used to”.

Now, if I didn’t have a transplant coming up – I probably would work in a better mix of “normal life” activities. I wouldn’t totally “shut down” like I have this summer, as that would be giving up on life.  Since I knew the end was in sight, I just decided to put on the brakes for this year only… not go out most weekends… just get through the summer, and wait for Dennis to be 100% approved.

Well guess what – we’re almost there! Dennis got to his target weight about a month ago. For the past 3 weeks he’s been re-doing all the tests that he’d already passed over a year ago.  Blood and urine labs, and all kinds of other body system testing.  Just to make sure he is still “good to go” for pulling an organ out of his body.  So far, so good.  He has a few more exams to get through… once he’s finished with those in the next week, he’ll have some one on one meetings with counselers and the surgeon team… then It’ll finally by my turn – I’ll have to do all my exams again (which I have passed twice now, but they’ll want to test me a last time to make sure).  My exams go pretty quick, I usually get them all done in 1 day.

Short story – there is no transplant date yet.  However we are closer than we ever have been, all the “hard” things are over, it’s a matter of getting to that finish line which is just ahead.  Barring an unforeseen “gotcha”, I’m guessing this will all go down in the next month (but it could be sooner or later, who knows?)  – fingers crossed!


2 comments on “2 Years on Dialysis

  1. katiegoestoisrael says:

    This is great news, friend! I’m so glad there’s some relief heading your way! You’ve been handling it all like a champion, and I’m just so so glad to hear the good news on the way. 🙂

  2. Anonymous says:

    So happy to hear this update!!! Carlie 😁

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