Monday Blues

The weather is terrible today.  The ride in was surprising not to bad.  Mark was on the tired side this morning.  I think his late night Saturday partying finally caught up with him!  I had planned to leave early this morning but I could not get Mark out of bed.  We finally headed out after I forced Mark to get up.  I of course did not get much accomplished this morning.  We had no coffee in the house :(  I managed to respond to a few emails...the list is huge!  I should have done way more but I could not motivate myself.
As soon as Mark got on his treatment today we had an appointment with the Coping Clinic.  They took time to meet with me for a bit then Mark.  This is a basic psychiatry consultation.  She asked me lots a questions about Mark and about the family.  They wanted to know how much we thought Mark understands about this process.  Also what helps Mark and us to get through all of this.  Overall things have been great, he seems to be tolerating treatment well!  He is starting to come down with something again...we are hoping it passes.

Celebration For Mark

Just wanted to spread the word!  A group of wonderful women I know are hosting 

a Celebration For Mark.  Please feel free to email MarksOurBoy@yahoo.com if more information is needed.

Celebrity Status

Today we had a different plan!  After I picked Mark up from school we had a special guest coming over.  Nathan....He is a reporter from the Littleton Independent.  This is my hometown news paper!!  My friend Evy had emailed Nathan a couple weeks ago in regards to Mark.  Her hope was to get some publicity for the event that is going to be hosted in honor of Mark.  
Mark, Evy, Samantha and I eagerly awaited his arrival.  When Nathan arrived we got right to work.  Evy and Samantha were busy informing him of the upcoming celebration for Mark.  I was busy trying to tell him everything I could.  It felt so great to get information out there.  I would love for people to walk away from this article with some awareness.  Mark was a bit on the quiet side at first.  He seemed to have mocked what Nathan was doing.  He was typing on his lap top and trying to keep busy.  When we asked him to talk to Nathan about dialysis he didn't want to.  At the end of the interview Nathan took a photo of us.  Mark was happy to share his story after the photo.  Up went his shirt...out came the catheter....and then in Mark's words his explanation of dialysis.  He explained the different color tubes and what they do.  
It was a nice time this afternoon...We talked, we laughed and I cried!  
Our article with be featured in next weeks papers.  The Littleton Independent and The Westford Eagle.

Two Months

Two months today.  We headed in to Boston early this morning for an appointment.  We were meeting with Surgery today.  At this appointment the surgeon went step by step over the transplant.  He told me exactly what to expect on the day of the transplant.  Of course going over all potential situations that may arise.  Also what to expect post transplant.  He also went over the removal of Mark's native kidneys if that has to happen.  He is not the one that will make the decision on that procedure happening or not.  He will just be the surgeon to preform this if need be.  There was a LOT of information to take in from this appointment today.  I thought it would be more of a physical exam to clear for transplant.  I am thinking Chris may have wanted to go to this appointment.  We can always meet with the doctor again if need be.  After we were done at Surgery we headed down to dialysis for treatment.  We were taken about an hour earlier.  This is good maybe we will beat the traffic out of the city!


Two months....What does that mean?  We have taken about 24 trips to Boston since we were released.....2 trips to the local lab....one trip to Emerson Hospital and one ambulance ride!  I have also had about 6 trips to CVS in a 2 month period.  We have listened to countless Children's Cd's....especially the Toy Story one (Thanks Christalle!)  The ipod play list including Mark's favorites...Miley Cyrus, Katy Perry, Lady Gaga and my others!  I'm not even going to calculate the countless miles we have driven!  Possibly we have gone through 3 cases of wine...haha!  All in all it has been crazy, but we are getting use to our life!  Mark had an amazing treatment with no issues today.  The social worker asked us if we would be willing to meet with a new family.  This family was taking a tour of the unit it today.  Of course we jumped on the opportunity!  As you all know Mark is a talker...and I just want to reach out to whoever I can.  I want to educate new families, offer guidance and help them to understand what to expect.  Everything happen to us so quick we didn't have that chance.  Mark was happy to have bedside company to chat with.  He was really selling the dialysis program nicely.  He was so happy to share all the fun things he does.  I hoped this helped that family today.  I also hope we are able to reach out and help many others down the road.  This experience has changed me in a way that not many will ever understand.

Yay For School!

Mark was up with a smile on his face this morning!  He was going to school.  This will officially be his 2nd full day of school since December.  Boy did I think he would have been able to go much more then that at this point.  He practically tucked and rolled out of the car when we pulled up.  I was surprised he even said goodbye to me when I left.  He had a great day at school with no problems!  
While mark was at school I got a call from our dialysis nurse.  She called to see if we could come in early tomorrow to meet with the surgery team.  We were suppose to go next week...but tomorrow is fine.  This is the kick off to all our appointments that will clear Mark for transplant.    It seems fitting that it will fall on the 2 month anniversary of his start on dialysis.  Yes tomorrow will be 2 months!  Time  crawls  flys when your not having fun :)  I am not sure what will happen at the appointment tomorrow.  Maybe it will just be a meet and greet?  This will be the Doctors that will be preforming Mark's transplant.  I hope I like them.  I will have to fill you in tomorrow on what happens.  I'm thinking we may get some answers on the possible native kidney removal.

Happy President's Day!

Mark and I had a surprise for today.  We have Chris as a travel buddy today.  I forgot it was a Holiday..so it was a nice little surprise.  We had an uneventful weekend.  We didn't do much at all.  That doesn't help with my motivation level.  It is zero right now!  
When we arrived at Children's and Mark was weighed, he gained about a kilo over the weekend. The nurse has said it was about a liter of fluid he was retaining.  She had said it was not bad considering it was the weekend.  She was also not sure if they could pull it all off of him today.  We decided not to challenge Mark too much and that I would return tomorrow for an extra treatment.  When the doctors came to do rounds this afternoon it all changed.  They were not concerned with the amount of weight gain over the weekend.  They wanted to bump up his treatment for today so that we would not have to return tomorrow.  They had just said that it will be day to day depending on if we will need to do 4 treatments a week.  Of course they want us to watch his water intake closely.  That seems to not be so hard during the day.  The night is a different story.  He drinks so much when he is up at night.  It also seems as if he is up for hours between 12 and 5 in the morning.  All we can do is take it one day at a time.  I'm too tired to fuss with him late at night.  We can hide the waters from him at night and let him stay up if he wants.  I'm not sure what our choices are at this point!  He seems to sleep less now that he is feeling better.  We can't keep him up to late because he gets to grumpy.  The sleep is more of a syndrome issue then renal.  Many kids with Mark's syndrome suffer from lack of sleep.  We were thinking before his kidneys shut down it was just luck he was sleeping well.  The reality of it was his kidneys were shutting down and he was feeling more sleepy.  If they only found a miracle drug that would allow him to sleep at night!  
With a little time left in his treatment he has not been able to tolerate all the fluid removal..I am not sure what this means for tomorrow.  Maybe there will be a phone call to the doctor to see if we have to return.  I really hope not...I would rather come Thursday for an extra day.

What Can I Do To Help?

As we come back to CHB day after day I say to myself...What can I do to help?  I know what our family needs are.  What all of our expenses are from traveling back and forth.  I know that we are not in a position at this moment to help other families.  I hope that in the future we will be.  I have taking the time to talk with the parents that are willing to talk.  I want to know what are their needs...what would help them?  Of course gas is one of the biggest expenses per week for most families.  There is always the often unexpected cost as well.  If you are held up at a treatment or admitted unexpectedly.  I personally try day to day to cut cost.  We pack snacks and waters.  It doesn't always work out.  I usually have to get Mark dinner on Friday nights before we leave the hospital.  The ride is always so unpredictable.  I would rather grab him a grill cheese or something...Then have to stop at a fast food place.  This also spares me from Mark crying that he is hungry the entire ride home.  We have been so fortunate to have so many people reach out and help us.  I wonder is it the same for others?  Is it the same for the ones that are on their second transplant?  Are people less likely to help them the second time around?  I hope not.  This is for the most part a temporary hardship.  We know that it will get better.  I am sure this what keeps all families going.  For me the worse part is in a number of years it will happen all over again.  There is not much you can do to prepare for end stage renal disease.  It happens and it happens quick!  I think of how much our life changed over night.  I also sit here and think back to that first day...I thought I was going to be superwomen!  I was so sure I could hold a job down, Mark would be in school even for a few hours on dialysis days.  That is not the case at all.  Reality sets in and you only do what you can do to get by!
Mark is having another great day.  We will have to see how his weekend weight gain goes.  This is our only major concern for now!

CHB X 4

We were not successful with a longer treatment yesterday....So here we are again in Boston today.  We will have 4 trips in to CHB this week.  Close monitoring over the next couple of days, will determine if we will permanently be on a 4 day schedule.  I'm feeling pretty burnt out!  There is a chance that we will only be here for a couple hours and not a full treatment!!  That is what is keeping me going right now.  Also Mark's main nurse is here today.  She oversees Mark's full care plan.  It is nice to chat with her about Mark and life.  She is here a lot of the time that we are, but occasionally she has her days off!
 Mark seems to be having pretty good treatments lately.  Yesterday we had to stop due to the longer treatment being more intense.  His blood pressure was really low towards the end.  We called it quits and came back today.  Overall he really is a different kid at dialysis now.  He is what the nurses were hoping he would be.
We had his full lab panel done today for his Infectious Disease appointment.  This means we will meet with them very soon.  That is just a small piece of the puzzle to be cleared for transplant...but we are moving forward.
The days have just been so long lately.  Mark is such a busy boy.  At the end of the day I am so tired, but still not sleeping well.  I'm up soooo late.  I want to get myself into a better night time routine.  The question is how will I do that?  If I go to bed early I wake up in the middle of the night and can't sleep.  There is too much on my mind.  I'm just sick of being tired!!!  I say I will work on it...but I won't! There are other things that are more important to me at the end of the day.  Once Mark goes to bed it's my alone time.  I need that time of day.  Why would I waste it on sleep?

P.S.  I finally got my hair colored.....Grey Free!!!  I went this morning before we came to Boston.  Thanks to my Mom coming over and a being squeezed in at InStyle!

It's True...Less Is Better

Today we are learning a little lesson...Less is better!  Mark arrived at dialysis with a big weight gain.  This is not good in two days.  Our 3 hour treatment has gone to 4 hours and 30 minutes today :(  With the hopes that Mark can handle a treatment that long.  Also with the hopes that they can remove all the weight they need too.  If not we will be back tomorrow for another treatment.  Why would this happened??  The nurses think that his urine output has gone down.  I seemed to think he is making urine about the same.  So what do we do??  We will talk to the doctors to see if I should start tracking any output.  He did appear a little puffy today...as if he was retaining fluid.  I did not notice it until the nurse had pointed it out.  His eyes and face were a bit puffy.  I spend to much time with Mark to notice settle changes like that.  The nurses agreed that it happens and I won't always pick up on things like that.  Now I am hoping to see a doctor to talk about today newest issue!  Unfortunately I will most likely not see any doctors today, it will have to wait until tomorrow or Friday.  We still have to wait to see what his post weight is today, and he pre-weight for next treatment.  Then  we can determine how much of an issue this is.  He seems to be handling a longer treatment with no problems.  With a little over 2 hours to go...I hope it all goes well.  They have had to reverse his lines twice already and flush them.  This is because the lines have been clotting.  The good thing is they have not had to stop treatment due to this.  That can make for a long hold up!!  Mark has been  busy with art projects and talking today.  My ears are burning...he has not stopped talking.  My dad would be the first to say this is my pay back.  He claims I was quite the talker as a kid.  I don't think it is humanly possible for a person to talk as much as he has today.  This will be his second entry to the Guinness Book of World Records....Do you remember my post "Good Morning" from December?  That was when I first wanted to enter him.  That post also had to do with talking...what a shock!  Please give me the strength to get through this day!

I Have Anxiety!

I have anxiety...not normally but sometimes...like today!  I have been on edge all day!  Mark on the other hand had a great day!!!  Today was his first full day at school.  He was slow going this morning from all the Valentine celebration yesterday.  So needless to say we were a bit tardy for school.  He lasted the whole day at school with no issues.  Ita said he was non-stop.  He will go back on Thursday...and if all goes well we will set up his busing for next week.  Mark was a bit disappointed that he wasn't taking the bus this morning.
I was surprised at how well I did dropping him off.  I felt a bit anxious and went home to clean.  It was nice to have a little time to myself, but it wasn't the best of times.  Maybe I was lonely....missing my boss??  That is Mark I'm referring too!
Maybe this is my problem...my virtual tarot card for today:

The Two of Cups

Negativity. Restriction of desires and imprisonment. Less sever forms of the above. Drastic change that may rob the individual of freedom of expression. Sometimes bankruptcy and imprisonment. more usually imprisonment within a set of circumstances which cannot currently be altered. Sudden changes out of one's control. Less sever forms of the above.

Negativity maybe??  I have been a bit of a "Negative Nancy" lately.  I just can't get out of my own way.  I apologize in advance for my recent ways...but I am just not feeling myself.  My goal is to get to the bottom of this by the weekend.  I also have a lot of stuff sitting the back burner I need to tackle.  I am sure that is not helping.  I need to move forward and pick a date for the lab drawing to find Mark a match.  We have several appointments coming up as well.  I have a billion unanswered emails from so many kind people....I can go on and on with the laundry list!  I will spare you all.  So for tonight I will commit myself to some of my favorite shows...yes Teen Mom and a few others.  I will call it a night and try again tomorrow.  I just don't like being with myself when I'm so grumpy....My poor husband...he is a saint!

Happy Valentine's Day!

Happy Valentine's Day!  I have to say we are not big on the Hallmark holidays in our house.  Mark is into them of course.

My Love For CCS

Today we had to head into the city a little earlier.  We had an appointment before dialysis.  We had to go see our friends at CCS.  I like to think of them as our primary care doctors of Boston.  Coordinated Care Services.  They have a magic ability to schedule appointments for us in any clinic at anytime.  When Mark was little we were on a waiting list to get into their clinic.  At this point Renal has the ability to do everything for us....but I won't give up on CCS ever!!  There will come a time again when Renal will not be doing everything.   We will need CCS again...so we agreed today they will still see us through all this craziness!  I think Mark's charm may help too..they will never get rid of him!


I'm suffering today...I'm feeling super tired.  I went to bed early last night, but still I need more sleep.  I'm dreading the ride home tonight. (Those 3 sentences were my pity party for the day)  Mark has to have his dressing changed today after his treatment so that adds a little time on!  This means we will be leaving in high traffic time.  Last Friday it was almost 3 hours to get home:(  I have hope for tonight...This weeks traffic hasn't been too bad.
  I just wish I could sit here with a coffee and my computer.  The rule is no eating or drinking in the dialysis unit.  Mark is very busy working on art projects with one of the volunteers.  This volunteer has the kids work on a piece of art.  After the piece is done he asked Mark about it.  Mark gave him a description of his work.  The hope of this program is to publish a book with kids artwork.  This would be a page with the art work and his description in his own words.  
Mark is having another great day!!  I think the good days are finally here.  

Life Is Good Today!

Good News...Yesterday Mark had the best day at dialysis yet!  He had a normal bout of feeling sick, but this passed quickly.  He was able to play some matching games and do Valentine crafts.  It's nice between the child life specialist and volunteers there was someone eager to keep him busy.  This gave me a bit of down time....of course my computer would not connect to the internet.  I wanted to throw it out the window.  I was not prepared for that ever being an issue.  I'm computer dependant...maybe I actually need to pack reading material in the case this issue ever happens again!  I did notice something when I was observing everything going on in the room.  I was most likely the youngest female in the room (not counting the student nurse).  I had come to the conclusion at that moment....I had the most grey in my hair.  I need to work on that this week.

Today we have been busy.  Mark had home school with Ita this morning.  I have been busy cleaning and catching up on laundry!  I have also been in contact with a couple potential donors today.  Since the word has been put out I have had a couple people contact me.  It amazes me to think that Mark may receive a kidney from postings on a social network.  What would we do without the Internet?  Tomorrow we hope to get a couple appointments set up for his transplant preparation.  

The appointments that have to be done before transplant are the following:

• Audiology
• Ophthalmology
• Parathyroid Bone Series
• Orthopedics
• Urology
• Renal Ultrasound
• Infectious Diseases 
• Surgery
• Dental
• Coping Clinic 

Infectious Diseases and Urology/Surgery will be the most important appointments.  They will also most likely be the first appointments they try to get us.  Infectious Diseases will take a very close look at Mark's past immunizations and make recommendations on any that may need to be done.  If it's a live virus shot he may need, it must be done a minimum of 30 days prior to transplant.  Mark's shot records at this point are up to date.  The nurse had mentioned that they may recommend to do any shots due in the next couple of years.  Urology/Surgery will be the team to decide if Mark's native kidneys must be removed prior to transplant.  This is all going to be based on Mark's urine output.  He is still having a regular amount of output.  Typically it slows down after the kidney's shut down.  If the team decides to remove native kidneys, we will be informed if it can be done at the time of transplant or not.  All of his other appointments are important as well.  We will be looking for a "clean" bill of health to move forward.
As I have been working on this blog this afternoon I was contacted by 2 more potential donors!
Life is good today!  Chris is home early and we have plans to go to dinner at Evy & Bobby's.  They always come to our house, and we never make it to theirs.  We are excited to go there tonight and enjoy so yummy dinner and quality time!

Who's That New Boy?

Today when we get to Boston the nurses are going to say "Who's that new boy?"  Mark was very excited to go get his hair cut yesterday.  He was so overdue...Thanks to Holly at InStyle he is back to his high and tight.  I also to have to add that Mark is a hairdresser snob...he will only see Holly.  It's a little funny to me, because when he was little I had to sit on him to get his haircut!

I have officially wasted 2 mornings waiting on a phone call from Social Security.  This women has called me 3 times while Mark has been and dialysis.  I told her to call back on a Tuesday or Thursday when we are not in Boston.  She had agreed to call me Tuesday morning at 8am...well she never did.  I thought she would call this morning for sure....nope nothing.  Maybe it is my bad for not taking her name, and number the 3 times I have talked with her?  Dealing with Social Security is like a part time job.  They call you and demand to talk to you right when they want too.  You may even receive a letter in the mail that you need to report to their office.  Now keep in mind...This is all to get his Medicaid going.  Once you have a diagnosis of End Stage Renal Disease a number of thing happen. (meaning a ton of paper work happens!)  You are put into a national registry and signed up for Medicaid.  Medicaid is run by Social Security.  It will not kick in for Mark until 4 months after his diagnosis due to the form of dialysis we have chosen.  If he were to go right to a Transplant or Peritoneal dialysis it would be in affect immediately.  I believe he keeps Medicaid for a year after transplant.  I was reading about a study that was done in 2006 this morning.  The average cost for a Kidney Transplant only is about $227,000.  That is just for the transplant...not including any other medical procedures that may happen before hand.  This study also did not include the donor cost as well!  This is why it is so important to have Medicaid.  Mark's regular insurance will pay $110.00 deductible to Medicaid each month while he is insured by them.  This is a much cheaper option for his regular insurance provider :)  This maybe a bit dry to all of you, but it amazes me how much goes into all of this.  To think he is only one patient.  So we will see...I bet Social Security will call me this afternoon while we are at dialysis. 

Mark last night pretending to be a Rock Star....notice the hockey stick guitar and even a penny as a pick!

Now time to get ready for the day!  

It's A Wonderful Life

This morning I woke up feeling pretty happy....When I saw this photo it was perfect for today's blog!

Photo by Mikey Gower...Check out his amazing work @www.mikeygowerphotography.com 

Things are pretty amazing in our house.  People have gone out of their way to spread the word about Mark, and his journey to transplant.  In just a very short amount of time his message has reached so many people.  I am feeling very hopeful that we will find Mark a donor.  I will be the first to admit it is so hard to ask for help.  I was very hesitant to send an email or post our need on the blog.  With a bit of encouragement from one of the nurses at Children's I did.  She had said "what is there to loose?...send an email".

  I feel like we are walking down this path blind folded.  The hospital will give you all the medical facts you need. When it comes to the normal day to day stuff....you are own your own.   It's hard to explain.....I just feel as if it is a constant struggle to do the best for Mark.  Sooner or later things will be "normal" again.  

I hope to start moving forward with Mark's doctors appointments next week.  These will be to clear him for transplant.  Once he has completed his appointments he will be cleared for about a year.  If all goes well he maybe ready for transplant early as spring to summer time.  There will be many factors to determine the transplant date.  There may be other procedures that have to take place.  The donor will have to go through appointments and be cleared.  I feel pretty hopeful it will go well and happen within a reasonable amount of time.  So much goes into to all of this.  It is completely exhausting to think of all that has to be done.  I'm okay with being exhausted for now...I fear post transplant more then anything.  

I wouldn't change any of this...It's A Wonderful Life.  Some may think I'm crazy...but it's all we  know.  Mark is an amazing little boy.  What I like to say about Mark is "If you know him you love him...If you don't know him.. I promise you want to know him."  This is all just another mountain in our life...It just happens to be a big one!

Some Good News

Mark had a late start to his morning.  I think he had a little too much Superbowl fun.  He was really into the half time show....I was too.  There is a bit of controversy from my fellow "social network" friends in regards to the halftime show.  Many people said it was one of the worse halftime shows they had ever seen.  Well Mark and I disagree completely!!  We can all look pass the fact that Christina forgot a full verse in the national anthem...but we will be quick to bash on the amazing halftime show?  
Today we had a late start to Boston.  We had to stop for gas before we headed into the city.  Somehow we made it here on time, but to be honest I'm not sure how.  We have done about an hour of treatment.  The doctors are doing rounds today.  Mark's biggest concern is his cold at this point.  They say it sounds better, but would like to see some more improvement with it.  So this means no school this week.  We are always so close to getting permission to go back....then something changes!
On the other hand I'm happy to report some good news!  We have a couple potential donors that have stepped forward.  This is only days after I have posted the information on the blog and email. We are still waiting for a couple more people to step forward, but feeling surprised we have had some responses!  We will not move forward for another couple weeks with the donor list.   I have had many emails from people who have said they are not an O blood type, but are passing the information along.  It truly amazes me the many people this information has reached in a small amount of time.

Superbowl Sunday

We love Sundays :)  Mark has been resting up trying to kick his nasty cold.  We have not left the house since we arrived home on Friday night.  Our drive home was just under 3 hours the other night!!  This has been the commute home lately.  You can expect anything from 2 to 2 hours and 45 minutes or so.  I think I'm just use to it at this point.  

We are hoping to escape the house this afternoon for a little super bowl party!  Then we will be home to watch the game in bed.  There is no major interest in the game for me.  Sorry to all my dear friends who are Packers fans!!  I just want to see the commercials and half time show!  


Mark was lucky enough to have a special visitor this weekend...Chris called and said he had a surprise for Mark on Friday night.  I had to explain to Mark that he couldn't keep his surprise!

We were dog sitting!  Mark loves Chance so much.  He usually ask us to buy him a dog at least once a week.  We have promised him the next time we move he can get a dog.  He is also very happy with the occasional rental dog!  I think he would actually be a very good pet owner, but he is obsessed with giving treats! 

Mark is busy working on school work with Ita this morning.  They have to hand in his MCAS portfolio in the next couple months.  With his lack of attendance at school he is a little behind on his school work.  Maybe there is a chance that he can get to school this week too!  It will all depend on this never ending cold.

I am determined today will not be another day trapped in the house...our days have been a whole lot of this :

The snow is also up to our windows...so I feel like I'm trapped in my own house!  Get me out of here :)

I Like Today :)

I wish more days were like today.  Mark seems to be doing better with his cold.  He has been in good spirits for most of the day.  I woke up feeling better as well.  That is a big plus!!  Chris let me sleep in this morning, and made Mark breakfast before he headed to work.  I rolled out of bed and had medication duty.  Once we were ready we headed out the door.  We left a little early today, so that meant we could stop for a little treat!  Dunkin Donuts.  I don't remember the last time I went there.   Honestly I'm not sure who was more excited...Mark or myself!  We are pretty simple D & D folk...I had a small ice coffee, Mark had a wake-up wrap.  When I was working I have to admit I had a once to sometimes twice a day habit.  Just coffee no treats..but it was a bad habit.
We arrived in Boston and got to work.  One of these days I will bring my camera.  Mark loves to help the nurses.  He will unwrap packages, hook up leads, do his weight.  He likes his jobs...and loves to keep an eye on everyone in the room.  He is busy asking questions, making comments and occasionally bossing orders out.  He always has his spirits up, but sadly hits his wall about 20 minutes into his treatment.  This happens every treatment like clock work.  They had hoped it would eventually stop but it hasn't.  He will usually try to sleep it off.  He sometimes will sleep for the rest of his treatment, or will wake up with about an hour or so left.   He usually tries to rally on Friday afternoons because he has art with Mia.  
Yesterday afternoon we had monthly rounds meeting with the team.  They said all of his levels look great.  This was a surprise to everyone after meeting recently for rounds.  We went with the decision to not touch his catheter at this point.  The have been able to achieve the levels they need to by increasing his time, and keeping treatment running at the lower flow rate.  The catheter has moved down, but as long as there is not clotting in the treatments to come they will not adjust it!  This was great news to hear.  I was fearing another surgery would be a another set back.  Overall today has been a good day...best in the last two weeks I would have to say!  I really thrive on the moments of normalcy....They just sweep me away!  

Are You A Potential Donor??

To All Our Friends & Family:

It has come time to move forward for Mark's transplant.  Chris and I are reaching out to everyone we know!  We have decided to try to find a live donor.  We are currently looking for live donors with an O blood type.  The positive and negative does not matter you just need to be an O type.  We hope to have a list of up to 7 people compiled over the next two or three weeks.  

Questions you may have...

How do I find out my blood type?

You can call your primary care doctor.  They may or may not have it on file.

You can donate blood...or if you have donated you can find out from where you typically donate.

If you are a women you can call you OBGYN...They typically have it on file!

Here are some preexisting condition that do not allow you to donate:

Age younger then 18  Also they prefer donor to be 25 or older...if you are 18-24 you need to be a family member or close to the family.

Uncontrolled high blood pressure

History of pulmonary embolism or problems with recurrent clots

Bleeding Disorders

Serious Psychiatric Illness 

Obesity BMI > 30

Uncontrollable Heart Disease

Chronic Lung Disease with difficulty breathing 

History of Skin Cancer

History of Metastatic Cancer

Bilateral or Recurrent Kidney Stones

Decreased kidney function 

Certain Infectious Diseases such as HIV Infection or Hepatitis 

Relative Potential Barriers:

Diabetes or significant family history of diabetes

Alcohol or Substance Abuse

Who pays for the transplant?

Mark's insurance covers all of the donors medical cost.  From your initial blood draw to your post operation appointment.  Unfortunately loss of wages is not covered.  They hospital stay for a donor is typically 3 to 4 Days at Brigham and Women's in Boston.  Then depending on your job you may need a week or two off after surgery.  The only thing they ask you not to do after you go home is avoid Advil.  Advil filters out of your kidneys.

What if I am a match?

If you are a match after the blood typing comes back you will then be asked to move forward on a medical evaluation.  This is an "intense" physical.  Most can be done by your primary care.  You will also have to meet with the transplant team at the Brigham.  They will be the end all to decide if you may donate.  There are occasions where you may do well in physical and the team may decide you are not the best fit.

First Lab 

Once we have a list of donors there is one day that is set up to have labs done.  All potential donors and Mark will need to have the blood work done at Children's on the same day.  We will try to work best with everyone and their schedule.  On this day I hope to set up a quick meeting with the Transplant Nurse.  This will give you the potential donor a chance to hear the full process.  At that point you can have all questions answered.  After the blood work is done the results are back in about 2 weeks.  They will cross match all the blood with Mark's.  Typically 25 to 30% of the list will come back not a match.  

Random Info:

Women are still able to get pregnant after a transplant.

If you drink or smoke you are required to stop about 8 weeks prior to transplant

Living Donor Transplants are done on the 3rd Thursday of the month.

If you donate and your remaining kidney ever fails you are put on priority.  You will go to the top of the list and have a Kidney within hours to couple of months.

What happens if we have more then 7 potential donors?

In this case we will make a list as we are contacted.  We will go in with our first 7....there is a chance that no one is the group could be a match, or only a couple.  We will then contact the next group.

If you are interested in being a potential donor and you are a O blood type please contact us.  Also if you have any question please do not hesitate as well!

We also would encourage you to forward this email to family or friends that may be of interest.  We are trying to reach out to as many of you as possible.  

We are grateful for the help we have received from all of you in the recent months.  Please do not feel obligated to respond to this email or respond with an answer.  We know this is a lot of information to take in.  As Mark's parents we are hoping for the best possible outcome.

Thank you all so much,

Emily & Chris Kane

enugent73@comcast.net

Feeling Under The Weather

The last couple of days have been no fun in our house.  Leaving me no time to blog, just time to act as a home nurse!  During dialysis on Monday Mark was not feeling that great.  As soon as he was done with treatment, and unhooked he spiked a high fever.  This means they would have to do a culture, and give him antibiotics through his catheter.  The antibiotics take about an hour to administer.  We did not get home until almost 9 Monday night.  
Tuesday Mark woke up feeling miserable and 3 new medications added to his list...Tylenol, Valium and and oral antibiotic.  The antibiotic is very important due to the fevers.  The fevers can be a sign of infection in his line.  Obviously that can be very dangerous...so they watch this closely.  We will have routine culture for the next couple appointments to make sure there is no infection in his catheter.  He will have one more dose of IV antibiotic and stay on the oral antibiotic for 2 weeks.  The Valium was given to help safeguard Mark from any possible seizures.  He remained quiet miserable for all of Tuesday and was in in bed by 6.  Tuesday we were in contact with CHB about Wednesday expected weather.  I went back and forth about getting a hotel room because I just didn't want to drive.  The nurse had to get back to me because he had been sick.  She needed to check it over with the team if we could skip treatment for a day.  When she called back Tuesday evening the had agreed it was okay to miss as long as we could be in Thursday morning for 7:30am.  Also as long as there was no fevers over 38.5 c.  
Wednesday we were all home for the day.  Chris' work was shut down.  Mark was still feeling pretty junkie.  We did nothing all day but lay on the couch and watch movies.  Chris was busy doing stuff around the house.  I was starting to feel a little sick myself.  My head is very congested.  I am hoping that this will all pass soon...I can't afford to be sick and Mark just needs to be better!  
We headed in to Boston bright and early this morning.  We left at about 5:40 and arrived here for 7.  It is nice being here early...because we will get home early.  We have been busy since we got here.  I had paper work to read and sign.  Mark was seen by one of the doctors.  He was given a nebulizer treatment to try to break up the cough he has.  We also will go down for another chest x-ray to make sure nothing has changed since Friday.  The team will also have his monthly round today.  The team will call me to do an overview of his treatment and how it has all been going.  We will most likely discuss the catheter issue!  Rumor as of this morning is that they will not attempt to move it.  His labs have been coming back at a good level even with the lower flow rate.  The nurses had mentioned that they will still go along using it until it starts to clot again.  This is all just a guess on how it will go...so hopefully we will find out what the real plan is.