This is not a fun roller coaster

Let's get one thing straight, I NEVER liked roller coasters to begin with, however for those you who DO, I HIGHLY recommend staying off this one.

One year at Six Flags Great Adventure, my wife, an avid roller coaster rider, demanded I go with her on "The Great American Scream Machine". I had no less than 6 panic attacks waiting on that line and as they strapped me in, I didn't feel secure enough and was flailing my arms in the air like a maniac to get the attention of the high 18 year old to come check my seatbelt. As we were about to "take off", I noticed the car in front of us stall on the climb. I screamed so that someone would notice and not let us go and be stuck. Of course all my screaming and panic did nothing because the people who run the rides notice these things, but as they let us off the ride due to the delay - it made my wife VERY happy watching me panic and she laughed at it not on for the rest of the day, but still today, probably 12-13 years later.

While I'm not bipolar in the slightest (I was tested for that), the Highs these days tend to be very high - high hopes, high expectations, high feelings of "you got this".

But the Lows, they take you to the depths. It's dark and alone down there, and I do my best to stay out of the "basement", but sometimes emotions are too strong. Low feelings of self esteem, low energy, low confidence that anything is being done other than "keeping me at bay". Low confidence that this transplant will ever occur and I have no idea why.

I go to the Doctor 2-3 times a week.

Each appointment takes 5-6-7 hours.

Labs, Meeting with the nurse practitioner to go over the labs and then getting any transfusions 

But getting a transfusion usually is an hour wait to get INTO the infusion center, then another 30 minutes until your "stuff" shows up, and then the length of time for the infusion itself.

I come home feeling worse than when I went and the day after I feel even worse than that.

Meanwhile, every second of every minute of every hour of every day, I hurt. Real Pain. 

I'm getting weaker by the day and can barely make it up my steps now.

Convincing myself to get out of bed and move becomes increasing harder, I stay in bed longer and longer, but I set a time limit. by 8:30 I am out of bed and changed.

The secrecy that exists in a hospital is infuriating to the patient. The delays or amount of time for labs to come back (some take 10 days!) is simply a difficult pill to swallow.

I know I said I wouldn't worry about the WHEN and rather focus on today, but when TODAY gets hard each day, I need to know the WHEN.

All I keep hearing is how fine I'm going to be. And while that's terrific, I'd like to know when please, because as I sit here writing this, I feel the furthest thing from fine.

I have an obligation to my family

To those helping take care of my needs around the house

To my OFFICE. I'd like to keep my job and with all these unexplained delays, it delays my potential return date as well. 

To understand the timeline, and it simply hasn't been laid out for us. it's just test after test after test with no end in sight and to put it into perspective, had I not gotten sepsis, I'd like be somewhere like a week away from being released from Hackensack University POST transplant. 

So what are we waiting for?

And so, panic sets it.

How much more time will I need off? 

How much more time will I need to risk my own health by sitting at home waiting for ... ????

And then you calm down.

And the frustration goes away.

And you realize your working with the best team in the nation who just want to make sure they do this right and ensure you will be healthy.

But I think I can recognize that and still be left with a feeling of frustration and confusion as to what checks and balances are happening NOW that either weren't thought of before or weren't NEEDED before when I was due in the Hospital on 5/8?

My next Doctor's appointment is tomorrow.

On top of the regular check ups and check ins, we have a conference call with the transplant team to see what the hold up is and to understand further what a potential timeline could be. because at this point, I just don't feel well every day, and I'd rather not suffer that much longer.