thinking

I have been doing a lot of thinking this week about what I will do when I get the call from Boston saying that we are good to go.  What sparked this was a woman at my dialysis center getting the call from her team while getting a treatment saying to get up there as soon as possible.  Obviously she wasn't able to dance (most likely what I will do) or jump around ( also a likely option), so she sat there and just smiled for the remaining 2 hours she had in her treatment.  I guess she has gotten her hopes up before and gotten to the hospital and was told that they found something wrong with the kidney and that it isn't going to work, not this time.  She called her former dialysis center while I was getting a treatment today and was so excited to tell the staff that she had a banana for breakfast.  Oh the simple pleasures that we take for granted.

I, not in the same capacity have had a similar run in with my team when it comes to getting my hopes up.  As I have stated, and will go into greater detail soon, I am very fortunate to have qualified for a study being done at Massachusetts General Hospital.  Since it is a study, they have a number of private and Government organizations overseeing it.  This leaves a lot of people to go over the results and make decisions on what happens next.  Due to this, I have been told 3-4 times a time frame that my surgery will most likely take place in.  Any kind of major surgery is a mental triumph so I started to prepare myself for months of adversity for a LIFE time of a kind of living I have never been able to experience.  When I was told that it was pushed off for months that was very tough as there are so many aspects on my life that are on hold due to this looming major surgery.  The last time I was told the study was on hold, which was the day I started dialysis, I told myself to not even think about it and just enjoy what I am able to do now.  Not an easy thing to do, especially with the second person that I know of in failure getting their transplant, going the traditional route.  An option that I
have had for some time and can choose to exercise anytime I want.  After waiting for the over a year and a half that I have, whats another 2-3 months.

The reason that I went down this road for a post, is on a day in which i have been doing a lot of thinking about my situation, the phone rings.  Sit back down, its not the call we all wished it was but  news none the less.  Kerry Crisalli (Transplant Research Coordinator) called with an update.  The way I keep explaining whats happing right now is like congress.  They picked the hardest time of the year to gather a bunch of info and people together to review it all, with 3 major time off holidays in a one month span.  What Kerry had to say was that there is essentially 4 groups going over all the information and they all have to cross reference each others findings.  She said we should have a lot more information come February.  Which is good to hear, but at the same time i think back to all the times I got excited and then got pushed off.  I also think of the promise I made to myself to not get too excited until there is something concrete in the works for a time frame.  I also wonder if I hadent called last week to see if there was any news would I have even gotten the call today when there wasn't really all that much to report ?

Monday - Wednesday - Friday

I knew that when I got older I wanted to have a routine.  Get up at roughly the same time, go to the same place, and talk to the same people.  What i didn't have in mind was that place being a dialysis center, and old being 25.  Dialysis was obviously an option that would only be used to buy me time, a decision that I made months ago to preserve my chances ofT being included on the Tolerance Protocol (the transplant study that i am in and very passionate about, which if you dont already know about it i will cover it here, as it is one of the key reasons that i am doing this blog all together).

I knew that I wasn't feeling good for the past few months, but I didn't realize how "sick" I was until recently.  Now almost 2 full months into my dialysis treatments, I feel better than I think I ever have. As Lauren put it, "Love/hate relationship with dialysis. My boyfriend has energy and I want to go to bed!" hahaha.   I have gotten very lucky in terms of when my treatments are as well.  In and hooked up to the machine by 6:30 and off the machine by 10:15 or so and home to eat in time for The Price is Right, cant beat that !

The reason i had to start dialysis is my kidneys were no longer able to break down the calcium that i took in and distribute it to my body, and as a result i became Hypocalcemic.  A healthy blood calcium level is in the mid to upper 8's and i was down in the 7.2 area.  Seeing how i was taking a calcium supplement and that happened my doctor wasn't pleased and started me on dialysis 2 days after my first hypocalcemic episode. Like the amazing person that she is, Lauren called out of work and spent the day with me, as I obviously wasn't please by this change in my condition, and yes I am very supportive of it now, i wasn't that day.

The dialysis process itself, when you really think about it, is a crazy impressive innovation.  In my case, they put two 14 gauge needles in my arm (hurts way less than one would think) , in whats called a Fistula. A fistula, in the dialysis situation, is when they do a small day surgery and attach the main artery in my arm to a vein in my arm.  For those of you lucky enough to see and feel it would agree that it almost felt like a cell phone vibrating in the bend of my arm. The reason they did this is to make the vein grow so its roughly the same size as the artery so the flow is the same. These needles work to take just about every drop of blood over a 3:45 span passing it through a filter and mixing it with saline and dialysate (A chemical bath used in dialysis to draw fluids and toxins out of the bloodstream and supply electrolytes and other chemicals to the bloodstream.) and puts it back into my body all the while cleaning all the toxins out. Since my kidneys aren't able to break down the food i take in to pull the necessary vitamins and minerals required to feel good, the dialysate puts them in for me. 

The other thing that the dialysis machine does is pulls fluid out of my bloodstream so they bring me down to what they call a dry weight, right now my dry weight is set at 97 kilograms which is around 215lbs.  One way they control my dry weight is limiting the amount of fluid i intake between treatments, right now I am only allowed to have 2 liters a day, as well as limiting other items that i take in, but we will get into my dietary restrictions on another day.  When i have too much of any of the restrictions the machine has to work harder to remove what it needs to which taxes my body and shocks it in a way and i get cramping from head to toe.  On some treatments for example, i have leg and stomach muscles lock up by the time i was done which was extremely uncomfortable, but partly my fault depending on what i take in.

Haven't heard from the team in Boston, in general or in regards to the study.  I plan on reaching out to them this week to check in.  For now I am enjoying my new found energy and looking forward to the holidays with Lauren, my family and friends.

support

Seemed like a fitting topic to roll with today, as I hope everyone went out and supported their right to vote! 

There is no doubt about it that I am a very supported individual, and I am reminded of that on a daily basis.  From Lauren, my loving girlfriend who has stepped up to the plate big time with all this transplant business and hasn't missed a beat since the day I told her all about what is going on with me. (we will elaborate more on her later, but if you haven't met her yet, I highly recommend you do!)  To my amazing immediate family, all of which offered up to get tested to see if they were compatible the day I found out I was in failure, having my mom be the best match at this point in time.  My extended family, who checks in 3-4 times a weeks with calls and texts and flies across the country and makes a point to come up no matter how tired they are or whats going on. And what would we do without friends? The people listed above blew me away when they came together and threw a benefit over the summer to support me both emotionally and financially, to all of them I am so great full.

Its not until I step outside the immediate connections that I truly see how much love and support i have sent my way on a daily basis.  The benefit that I mentioned is just one example of what I am talking about.  For those of you that weren't there, allow me to paint the picture.  August 15th, 80 degrees out and mostly sunny, I am floored when 200 + people spend there day supporting me.  Many I haven't seen in years, and some that I haven't ever met before but just wanted to be part of the whole thing.  Crazy right?

3 weeks ago, Lauren and I went up to Franconia Notch to celebrate one of her college friends birthdays.  At the party, I met the birthday girls mom who I had obviously never met before, and I am informed that she has me on her daily prayer list.  A woman who knows not a thing about me other than that I am going through some medical stuff right now. That is just the most recent example of something like that happening. I could go on and on about what people have done for me but I think you get the point.

Support, and the incredible amount that I get is one of the reasons that I am able to go through this shitty process, and lets be honest, it sucks big time, with a positive attitude all the time.  If i ever start to feel down about any of this crappola, any number of people will help me look at the positive spin of it all.  I really cant say enough for all the people that have helped me throughout the years. I am one Lucky guy !!

All i can say is Thank You and hope it equals out

preamble

I always knew this day was coming, kidney failure and the need for a transplant.  Not the words a 23 year old wants to hear.  Now 25, and 2 years into this whole process, things are really starting to get interesting.  

A number of people have told me to do a blog throughout this process for many reasons.  For one the type of transplant.  I have been very fortunate to be accepted into a study that only a handful of people in the world have completed before me.  Another reason is it is a great way to keep people up to speed with what is going on with my journey at their convenience.

i thought that all the reasons made sense and I have started it with this, my maiden post(it will get better from here I promise).  I will use this site for both of the above mentioned reasons as well as give a little history on myself including what got me to this point of needing a transplant at such a young age (in major organ failure years that is, been feeling quite old recently).  I will go off on tangents here and there, lets be honest, I grew up in the ADD generation.  I will explain why I picked the title that I did and the meaning behind it all.  I hope you enjoy reading this as much as I expect to have writing it.

and please if you have any questions please don't hesitate to ask them