Happy Anniversary

Today I'm thinking what a lucky girl I am!  Even though Chris and I have been together for a long time, we were married just last year.  Not that I thought things would change dramtically with marriage, but it kinda does...if that makes sence to anyone.  Over the last year things didn't go quiet as we expected!  I honestly thought around this time we would be expecting the arrival of our second child...not a kidney..hehe.  It's also funny how things happen..timing is everything.  I think this last year has grounded us a little bit, and helped is focus on the important things.
I wouldn't or should I say couldn't have choosen a better partner for this life.  Chris keeps me grounded, he loves unconditionally, and will sacrifice anything to provide for us.  He is a stand up guy.  I'm sure every women would say that about their signifacant other.  It's the truth about Chris.  I'm excitied to get Mark healthy and live the life we have ahead of us.  This is just one long year out of many.

Happy One Year!

Ready to Travel

Trying to get ready to travel for the weekend has been a task!  I have written a full Mark manual. I do not think I have forgotten anything...

If I have forgotten I am sure they will figure it out!  We even gave Papa (my dad) a tour of the dialysis clinic today.  He works close by and was able to stop in.  My parents will be handling dialysis on Friday.
Mark has had a good week at dialysis and we are officially at 2.5 hours for treatment!  I have to say it has only been 3 days of this shorter schedule and I love it!  Next Tuesday will be here soon and Mark will be activated!  I am hoping the wait will not be long...we will see what happens.  

7 Months

Today is 7 months!  Today is actually a day for celebration..We arrived to dialysis to find out he would be running for 2.5 hours...not 3!!!  That half hour less is going to feel great!!  If his pre and post labs come back where they need to be, we will stay at this time!!
We also had some "big" events happen this week :

Consent for Transplant!

Mark's consent for transplant was signed this week.  Our call list was submitted so they can find us when it's time!
We also had his labs drawn again earlier in the week...specifically for his PTH level.  We last left off at about 1900, then surprisingly it came back in the 460's.  Needing to be under 500 for listing we where there...almost!  We were told that we need to have a second PTH drawn with results under 500.  The labs came back again yesterday...491..yay we did it!  To make this day even better, I just spoke with the doctor and he said that was it!  They will not do another PTH draw...never again :)  

This means it is time to be listed!  On August 2nd he will officially be activated.  Our wait at that point will be anywhere from about 12 hours to 100 days.  There is also a small chance we can get the call, and it can be a false alarm.  In that case they are making that last minute change for a reason.  I'm certainly hopeful that it will all happen the with first call!

Just a few pictures of Mark over the last month...We had hoped we would be somewhere different now....but all in all this last month wasn't so bad.  I am looking forward to going away with Chris to celebrate our anniversary next weekend.  We will be refreshed and ready to roll for the second half of this journey!

Parathyroid Scan Results

Mark had his scan done about two weeks ago.  He was put under anesthesia for about 4 hours.  During this scan the took series of pictures to see his parathyroid gland.  With Mark's level being so high this scan was important to see what was going on.  At the time of the scan his level was about a 1900.  This level needs to be at 500 or less to be active for transplant.  When we received the results of the scan everything came back normal!!!  It can be common that the gland needs to be removed in kidney transplant patients.  With a normal result this was not going to be necessary.  This was great news.  The bad news...we need to figure out how to get this level done.  The only choice now is to treat with medication.  He is currently on 3 medication to lower this level.  The doctor had told me that this could take a couple of months, or maybe sooner.  I asked them to be honest with me and tell me what they have seen in the past.  I don't want to be hopeful every two weeks when the lab is drawn to find out it has barley dropped.  My opinion these days is prepare for the worse and hope for the best :)  Some may not agree with me, but most have never walked this journey.  It gets to be draining when your so hopeful and things don't go they way you want.  I am drained and this is still the first leg of this journey...I still have to be strong for the post transplant.

Waiting to go in for his scan

Catheter # 4

It's hard to believe I'm blogging about this...but yes we received a 4th catheter on Monday.  This was a little unexpected!
Saturday Night Chris and I went to a wedding.  We had arrived home late and headed off to bed.  We had only been asleep for about 2 hours, and we were woken up to some loud banging in Mark's room.  We arrived in Mark's room to find his TV on the floor and Mark in tears :(  He was upset because he thought his TV was broken...It was fine and so was Mark!  So we settled Mark back into bed and were ready to officially call it a night.  Out of the corner of my eye I saw a catheter on the floor.  To be honest at first I thought it was the catheter from his Baby Fake...I just figured he had riped it out of his baby doll and left it on his bedroom floor.  Then I looked again..I realized it was Mark's catheter!  At that point I was afraid to lift his shirt up, I was fearful of the blood.  We finally lifted his shirt to find no catheter and no blood!  I think I must have asked Chris a million times, "Is this a nightmare?  Is this really happening?"  I then called the hospital right away..and we were off to Boston.
We arrived in Boston at about 5am and spent a lot of time sitting and waiting.  We rushed for the fear of bleeding or infection.  They did nothing!  I thought for sure it would be replaced and we would be on his way.  That was not the case..we were admitted and not seen all day.  Finally I was told we would be he would be an add-on for Monday surgery, and he would have dialysis after that.  There is nothing worse then hearing you will be an add-on...It the medical world that means the earliest you will see the OR if you are lucky is 3pm!  That is just how the cards played out!  He was off to surgery at about 3:30 and then right up to dialysis after that.  He was finally finished with dialysis at about 10pm...then we waited 2 hours to be discharged!  We were determined to go home...One long day, successful surgery, successful dialysis treatment, one small seizure, but it didn't matter...I wanted my own bed!
I bet you wonder why the catheter fell out?  I did to...I thought initially Mark had pulled it out.  That was not the case..his dressing was still and place and there was no blood.  As we were sitting in the ER a light went off!  His stitches were removed from his catheter on Friday.  The surgeon had stopped by that afternoon and said to remove them.  It had been over a month so they were well over due to come out.  I think the last catheter they came out after 2 weeks or so.  Was it just a coincidence or did that have something to do with it?  When I brought my theory up to the team, they all said that was not the case.  Well the funny thing is after Mark had his surgery the doctor came out to talk to us.  He said that the tissue never attached to the cuff of the catheter.  Typically it will just grow over the cuff and that is why the need to surgically remove the catheter.  In this case it never did!  When the stitches were removed on Friday, the catheter was being held in by the tape on his dressing.  In the end...I'm not crazy!

Waiting for surgery

Post surgery

Catheter we found on the floor!

Watching The Clock

Sitting waiting for hours can make a person crazy!  I can't concentrate on anything.  I read a page from my book, look at a magazine, go on the computer...look at the clock and only 10 minutes has passed!  I'm really hoping for some results quickly with today's testing.  Mark's PTH level came back yesterday and it had only dropped a little bit.  He is at about 1900...we need to be at 500 or less!
  This just seems a bit stressful today. We arrived 30 minutes early for our appointment..they took us in to the room 30 minutes late, and he didn't go under anesthesia for at least another 45 minutes after that!  Now it's just waiting...knowing he has been under for hours.  Just for this scan....it seems crazy.  I think I just feel uneasy with Mark being under for a scan.  I know it's not possible for Mark to stay still for as long as they need him too.  I know I'm just rambling but I'm annoyed with this whole thing!  I just want some answers with this parathyroid issue.  I want to move forward with transplant.  The way I'm looking at things now is, each day that passes is one day closer to winter.  They may not transplant in the winter.  There is to much cold/flu infection around...It would not be best for Mark. 

Happy July 4th!

Of course you all know at this point, dialysis still goes on...even on a holiday!  I was slow moving this morning, not feeling like a trip to Boston.  It's funny how many people were so surprised we had to come in today.  I was fearful of the road closures coming in.  We were able to make it in no problem!  We will see how the ride home goes.  The Red Sox should be ending right around or time of departure :(
I'm currently sitting here day dreaming of what a "normal" 4th would be!  A trip to see Auntie Julie & Uncle Wayne's...eating amazing food and lounging at the pond!  Maybe even a paddle boat ride....I have faith that is exactly what we will be doing next year at this time.
I remember thinking a couple months ago that this very weekend we would still be recovering from transplant...not waiting for transplant!  Today we had labs done to check the PTH level.  We will be getting the results on Wednesday to see where the level is at.  He has been treated with an IV medication.  He will also be going in on Thursday morning, for the nuc med study to check the parathyroid.  We should know by the end of the week what the plan is.  It is going to be a long week.  He has to go under for 4 hours on Thursday during that study....That is longer then his most recent surgery.  I just hope it all goes well and we get results quick.  I just can't wait for Mark to be listed!!

The Circus Is In Town

Tuesday morning was very exciting in our town...The Circus was here!  We headed down to the field bright and early to see them set up!  We got to hear some facts about the circus and their travels.  Then it was time to raise the big top!

Mark was so into the circus, and the fact that it was two minutes from our house.  After they raised the Big Top we got our tickets and headed home.

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When we got home Mark played circus all afternoon, and asked me about every 20 minutes if it was time to go yet?  I was going a bit crazy, but we opted out of the early afternoon show.  It was so hot out I wanted to wait for the evening show! 

We even got our picture taken with a tiger.......