Monday, December 30, 2013

Dealing With A Needle Phobic recipient Part 2


Okay, I don't know if it is that exciting but it is exciting.  After taking him out for a Chic-Fil-a Breakfast and trying to actually find the lab corp, Dave gave blood pretty easily for him.  I made him lay down and just stood by him while the guy did his thing.  It was kind of cool because the phlebotomist was a dialysis patient who had had a transplant as well as tried peritoneal Dialysis(PD).  PD is something Dave may be looking into considering his dislike of needles(but we are all hoping for a transplant instead).  The phlebotomist apparently didn't like PD, so who knows?  He also mentioned how he had a transplant from his Aunt that lasted 7 or 8 years (lets hope Dave's will last longer!) and that it was odd because before the transplant he hated celery, and his aunt loved it, then after the transplant he loved celery.  Weird?  Maybe if I give Dave a kidney he will like tomatoes?

On another note I think he is getting a lot better with his fear of needles and being stuck.  He did awesome.  Which is a good sign for the future after transplant when he has to give blood frequently to get his kidney function checked.

While at lab corp I picked up my HUGE urine container.... fun... But the lady who gave it to me said I could keep it outside to keep it cold which I feel is a great idea.  YAY more refrigerator space!  Hopefully I will get that done next Sunday, then return it Monday and do some more blood tests to find out more info about be being able to donate.  I'm wondering how long it will take UMMC to get the results after I drop off the container and do the blood work?  Hopefully quick so I can know whats next!

Thanks for reading! 

Friday, December 27, 2013

White Coat Syndrome

I am pretty sure I suffer from White Coat Syndrome, meaning that when I go to the doctors for something my Blood Pressure increases.  I also think this syndrome may be getting worse and I am worried it will effect my possibility of being a donor.

I've always had anxiety about going to the doctors.  I don't know why I just do.  When I was younger though this never seemed to effect my blood pressure but in the past 2 years or so my blood pressure has been unusually high when at the doctors, not high enough to cause concern but they told me I should keep an eye on.  Well over the past few times it has been pretty high.  I am almost Positive this is white Coat syndrome.  Just thinking about doctors appointments make my heart speed up.  While waiting to be called back I can feel my pulse and get a little shakie (its irrational I know, but my body still gets worked up no matter how hard I try to calm down).

Yesterday I had an eye doctor apt. (the first in my life, woo decent eyes) and they asked to take my blood pressure and it was high.  I mentioned I was anxious but she still had to record that my blood pressure was high, and schedule a time for me to come back and get it checked again (a process I did about a month ago).  I don't know how to get across to them that it is nerves, I'd never had an eye doctor apt. I didn't know what to expect and I didn't know what was wrong with me (I was seeing starbursts and things with lights turns out its an astigmatism and a bit of nearsightedness).  Thinking there is something wrong makes me more nervous and anxious which I'm sure makes my blood pressure higher.

This brings me to the attempt at being a kidney donor.  I know I am not at the step of physicals and have appointments with doctors, (still need to find time to do urine test) but what if when I do eventually and hopefully make it to that step my blood pressure is sky high due to being anxious.  Talking about an elective surgery and having people poke, prod, and determine all of my medical ailments is probably way more then enough to make me anxious.  I really don't want this to effect my possibility of being a donor. I am hoping the doctors are understanding.  I was reading on the living donors online message board (like on right) that this has happened to others and it has not ruled them out as a donor, which is promising.

In a backwards way though, I was thinking that maybe donating my kidney might be a way for me to get over this irrational reaction.  Being forced to do the whole medical work up then have surgery and be in the hospital might be what I need to convince my brain doctors are  nothing to get worked up over.

Okay, that is all, just concerned and was thinking about it last night so I thought I would post it here.  Hope everyone had a good Holiday!

Wednesday, December 25, 2013

Merry Christmas!


I am overwhelmed with the number of views this blog received yesterday!  I didn't expect it to be looked at so much from one simple link on facebook.  THANK YOU! It't nice to know people are interested in what I have to say and what I am doing.  Knowing that I have the support of so many people is an awesome feeling.  Having that many likes on facebook and page views here made me feel a little nervous and vulnerable (I was kind of just expecting my normal small group of facebook friends that comment on my stuff to see it) but I am glad that I was received well.  Its nice to know that so many people out there are sending positive thoughts and prayers our way during this journey.  

Thank you guys again and have an awesome Holiday!

Tuesday, December 24, 2013

Dealing with a Needle phobic Recepiant

Right now as I wait for a day when I will be home continuously to do the 24hour urine culture (don't want to be traveling around town that day), which is hard during the holidays my constant battle is dealing with my boyfriend who is needle phobic to the extreme.  This is why he cringes every time the word fistula is mentioned.

He currently needs to get more blood work done for the UMMC to be put on their list.  At Hopkins this was all done on they day of his appointment meaning he was super nervous, shaky, anxious, fainty once and it was over.  At UMMC they did the blood type and tissue typing blood test at his appointment, which was one stick, and said due to insurance purposes he needed to go to Lab Corp to get the rest done.  This leaves me the mission of getting him to lab corp.

This mission/quest if I chose to take it (and not just convince his mom to do it) will be very difficult.  When ever I mention blood work or lab corp he gets quiet and tenses up.  His fear is real if irrational.  I tried to bribe him with breakfast out and an early Christmas present last Saturday if he went (you see lab corp is only open in the morning Saturdays or normal work hours M-F).  This failed because I have no will when he looks so sad.  His whole demeanor changes when he may be stuck by a needle.  I don't know how to convince him to go?  Maybe after the Holidays I shall try again.

If anyone reads this any hints or ideas would be greatly appreciated!  Its like trying to get a child to get a shot, he knows the fear he has is irrational he just does not know how to get over it.  At UMMC I had to basically hold him in his seat for the phebotomist to be able to stick him without him moving away.

So this is my daily struggle with him.  I won't be able to be much of a donor for him if he doesn't meet his requirements.

I don't know how often I am going to update this, but I think just as I become inspired to write about something I will update.  It may be sporadic but I hope to cover a lot in this blog.  Its good to get all my thoughts and ideas out in the open for me to really think about.

Monday, December 23, 2013

First Post!!!

I have decided to try and become a Living Kidney Donor (LKD)!  This is a exciting, nervous, anxious, different, life saving thing I have decided to do and so I can sort out all my thoughts, trials, and experiences I decided to start this blog.  Blogging is something I have tried before and had no patience with but I am hopping for my own purposes that I keep this up.  Maybe one day it will help other people with their decision of becoming a Living Kidney Donor.

The Beginning
So the beginning of my decision to become a LKD started last April, about 8 months ago.  My boyfriend, Dave, was experiencing weird leg cramps (which I told him he should get checked and he never did) that led to dizzy spells.  After having one of these dizzy spells in front of his mother, she forced him to get it checked out at the ER.  I was at work at the time and he and I had talked about his symptoms before thinking it may be something he was lacking in his diet or something minor like that, so when he said he was going to the ER I was not immediately concerned.  I told him to let me know when they figured it out or if he needed me.  He spent most of his day waiting, I had plans that night, without him, so I continued on with them, he still waiting when I left to go out.  

Around 11pm, when I was driving home, he called me to say they were admitting him.  I didn't want to talk while driving and he said he would call me back in an hour.  An hour comes and goes, nothing.  I eventually call the number he called me from, they say he is with the doctor and to call back in 15-20min.  mean while I am waiting nervously at my house,  not knowing whats going on.  After 30min. I call back he is still unavailable and they said they would let him know I called.  Eventually he calls me back and lets me know they are moving him to the ICU, and that basically his kidneys were failing.  I quickly grabbed some of his stuff and ran over to the hospital.

When I arrived at the hospital and found Dave he was in the same ICU room my mom was in a few months before (creepy right, but she came out just fine, so good feeling there).  I found out that he was diagnosed with end stage renal disease caused by a genetic disorder he has, Tubular Sclerosis.  According to the doctors they were amazed he was up and walking around when he came in based on his creatinine numbers.  They were going to monitor him and hopefully start him on Dialysis as soon as possible.  Which they did the next day.  

Transplant Listing
After he was out of the hospital he set up an appointment to get on Johns Hopkins list for a transplant.  By the time the appointment was scheduled it was the end of June/beginning of July and I had thought about giving him my kidney (meaning I had the idea in my head) but his dad was going to get tested and I figured I would see how that went first.  I am only 25 years old and my mom, and others are concerned about long term risks and the possibility of me getting pregnant in the future, which is mainly why I waited and didn't get tested right away.

Disappointment and 2nd listing
The Initial test was great!  They were a match!  But as the testing progressed (and time went by) his dad was ruled out as a donor, disappointing us all.  This probably happened 2 months ago?  Dave's mom, a dialysis nurse who has had a transplant herself, suggested that we get Dave on a second list.  So an appointment was made at the University of Maryland Medical center.  This appointment was less then a month ago.  Dave seemed to like that center better.  While there they stress how one can be on the list for a deceased kidney for a long time and how a living kidney is so much better.  Something we all already knew but hearing it again made me seriously consider donating especially since Dave's dad was no longer a match (even though UMMC is re-looking over his data, maybe they will accept him?).  

Taking the first step
A week after that appointment I sent in my paperwork and received a call the next day to set up a time to get my blood typed and tissue tested to see if Dave and I match.  This was the first step on my road to possibly being a kidney donor.  I did the blood test and found out less then a week ago that we are the same blood type, have one matching antigen, and our blood "Mixed well".  This meaning I can continue on with the testing.  The results came back fast and while I am excited I am also anxious as I find time to do the 24hour urine collection that is next.  Giving my kidney up is a big thing and a risk that I hope I am willing to take.

Okay, that is it for now.  I plan to post more about the pros and cons of living kidney donation to the donor, my story as it continues, my worries, joys, and more as it all unfolds.   There is more I could write now but this is already way too long for anyone to be interested in reading.