New York

A couple weeks ago Chris started asking me what I wanted for my Birthday.  Of course my mind started to race!  Birthday's seem to be the special day or should I say week (this is a tradition that stared with Chris' bday...his is in April and we use to always vacation on that week) in our house.  We are not big on other holidays..for the most part, besides Christmas for Mark has an incredible holiday spirit!

I think a week passed and he asked again...What do you want for your Birthday?  I usually try not to go to crazy, last year was a big birthday for me.  I got an amazing night out with my girlfriends and a big birthday bash!  So after thinking about it a little more, I told him what I wanted...A trip to Carlos Bakery (The Cake Boss, for those who don't know)  He said okay if that's what you want.  We waited it out last week before we booked anything.  I wanted to travel with Mark as well, so this meant it would have to be last minute for sure.  We wanted to be sure we could travel with his PTH level being so elevated.  Friday we got the okay, so at about 10pm Friday night we booked a room.  We left Saturday afternoon.  We spent the evening in Time Square, and headed to the Bakery first thing Sunday morning.  It was just what we needed...24 hours away from everything!  Mark and I loved every moment of it.  I'm pretty sure Chris enjoyed himself...but not a huge fan of the city.  He said it was too crowed and he most likely would never go back..haha.  We were in Time Square on a Saturday night!  Thanks to my two favorite guys, I had an amazing weekend!

Lots of pictures to share:

Mark's photography...not bad!

Dialysis clinic in Hoboken...same town as the bakery!

My Birthday Cake from The Cake Boss

And to think my birthday is not until Sunday...I still have a couple day's left in this week long celebration.  If you are wondering, Yes I have been eating one piece of cake every night since I cut it!  It is so yummy!

Waiting on PTH

  A couple weeks ago I had a meeting to choose Mark's post transplant immunosuppression regimen.  This is the series of medication mark will take to prevent rejection after transplant.  There are two protocols that can be chosen.  Basically the team educates you about your options and then you are left to make a choice!  This meeting has to be held prior to being activated on the transplant list.  After this meeting that was held on June 9th we were looking forward to being activated.  Well that is not how it all worked out.
Mark had a spike in his parathyroid (PTH) level.  This level needs to be at a 500 or less to be activated.  Around that time the level had come back at about 1100 or so.  We then waited a couple days to redo this level, and at the point it had come down to 836!  So we were moving in the right direction.
 What is the parathyroid....

The parathyroid glands, embedded in the thyroid gland in the neck, but separate from the thyroid in function, control calcium metabolism in the body. The parathyroid glands produce parathyroid hormone (PTH). PTH regulates the level of calcium in the blood.

Calcium is critical to cellular metabolism, as well as being the main component of bones. If too much PTH is secreted, the bones release calcium into the bloodstream. Over time, the bones become brittle and more likely to break. A person with levels of calcium in the blood that are too high feels tired, run down, irritable, and has difficulty sleeping. Additional signs of too much calcium in the blood are nausea and vomiting, frequent urination, kidney stones and bone pain.

**Found on the anesthesia dictionary online***

When we had received our labs back late last week the level had spiked again...Now we were over 2000.  At this point we thought it was a mistake...so the lab was done again...it came back even higher later that day.  It was not a mistake.  Now he is being treated with an IV medication to try to lower level.  We also had a ultrasound on Monday and we will have a nuclear med study done next week.  That study involves going under anesthesia for 4 hours.  They will be taking a series of pictures to see if the parathyroid is over active.  This may result in the removal of a portion of the parathyroid.  If they do not see anything in this scan then the level will be treated with medication to try to lower level.  As of today the ultrasound came back normal...with no sign of scaring or damage.  They still will move forward with the Nuc Med study.  It has now just turned into a waiting game.  This is awful..each day that goes by is another day we are not closer to the finish line!  I'm learning to be a bit more spontaneous these days...working when I can, and doing special things with Mark when were are not in Boston.  Once we are activated we will have to be ready to go at any moment.  With knowing that I guess I am trying to make the best out of the time we have now!

6 Months

Well I am back after my recent leave of absences!  The last month has been long and busy.  It's hard to believe it has been a month since we were faced with a change of plans.  If all went as planned Mark would have been in transplant today.  How much I wish that was true, but it's not and it's time to move forward.  I guess I didn't realize that I was hit with a bout of depression over the last couple weeks.  It was brought to my attention by someone so dear to me.  At that moment it kicked me in gear again.  I had to pick up the pieces make decision and move forward.  Chris and I took a little bit of time to decide what would be best for us.  Realizing that we were looking at transplant not happening in the near future with a living donor, we have decided to list him on the deceased donor list.  In the time we would get another living donor cleared, the monthly transplant slots would most likely be booked well into the fall.  With Mark's blood type and his priority on the list, we will be looking at a wait of anywhere as soon as 12 hours up to 100 days!  Although this was a hard choice to make, it was made with ease after some major conversation with Mark's team at Children's.  We were not using a living blood relative donor to begin with.  When using a relative donor that is when they say you see a little more longevity out of the kidney...So in the case that it is a non relative donor, the team seem to think that it would almost be a lateral move.  There was also the other weighing factor that Mark will most likely need multiple transplants in his life.  Listing him while he is under the age of 18 gives him priority.  This gives us hopes of having to rely on living donors later down the road.
What will happen next...We wait to be activated on the transplant list.  He has his clearance for transplant...almost..yes almost :(  We are currently waiting on some blood levels to stabilize then he will officially be activated.  We also had to have ANOTHER catheter replacement last Tuesday!  This was a bit unexpected.  The catheter had been acting up a bit, but after all the line studies a couple moths ago they were saying there would be no replacement.  Everything was running as it should..But then we had the infection in the line.  It also appeared to look as if there was so infection around the outside of the catheter.  Although they never said it was infected the had been applying a topical antibiotic to the area.  The second cath did not heal as nice as the first one.  Finally it was noticeable that the cuff was exposed (the top of the cath that should be in the body) once this was determined, it had to be removed.  It could fall out at any point if it was not removed...that was scary enough for me!  So I guess I'm happy to say we are the proud owner of a third catheter in six months!  We have only had a week of treatment with it and it seems to be running well...knock on wood!
We have been busy...I am hoping that it all works out and we will be activated soon and receive a call quickly!  I have say I am happy to be back behind the laptop.  I try not to be so down in the dumps but the last month has been hard on me.