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Teenage Life.

Being a Transplant Teen isn't easy. You go through stages where you feel like a normal teenager, then you go through stages that you think nobody cares. Friends, Parents, Teachers or anyone. Within the stages of transitioning to an Adult after being taken care of by my parents for the past 18 years of my life, I am starting to go through with trying to be more mature and showing them that I can do a lot of these things on my own. Which I can. But sometimes I feel like they don't think I can do everything on my own. It's frustrating, because yet I am in the process of finishing High School, trying to figure out what i'm doing with my life, but again, I always have to worry about whether or not I am going to need another transplant in the future. Because of having this blockage in my liver for so long, I get nervous and tend to think well what if? Through all this I have been dealing with some anxiety and depression. Which has taken somewhat over of what I was when I was little. Realizing more things, thinking about more things and so on and so forth. There are so many things that I want to do, but then again i'm not sure if i will be able to do them. I sometimes feel like I am torn within myself to trying to go both ways of being still a child and transitioning into an adult. Yes being a child was somewhat easy but when you are dealing with hospitals every time you turn around, your childhood becomes somewhat shot. So it feels like now I am trying to not only try to become an adult but also try to makeup for missed time of being a kid. I know I will get through this hard time, it just takes time and a lot of lessons to get through it. 

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Great vacation this past weekend

I had a really amazing time this past weekend spending time in the North Carolina mountains.  I love the area and it's probably my all time favorite vacation spot.  Did some hiking and took a lot of video of different sites.  Part of the reason for getting away (besides some R&R) was visiting several of the sites where they filmed The Hunger Games movie that just came out this past weekend.  It was a great time overall.

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How Can We Eliminate the Waitlist?

Allowing organ donors to receive monetary incentives for donation has been debated for years.  In attempts to honor ethical concerns regarding buying organs, such as honoring the human body, protecting potential donors, and preventing donation for only monetary gains, the current system offers little protection to living kidney donors.  In an effort to maintain an altruistic motive for donation, multiple disincentives and barriers for donors currently exist.  Meanwhile, the wait list continues to grow each year with thousands of people dying without receiving an organ.  In addition, we may never know the number of potential donors lost due to barriers.

Living donors do not benefit from the current system.  Little help is available to assist with out of pocket expenses related to the donating process.  Donors are not guaranteed any short or long term protection.   For the sake of maintaining altruistic motives for donation, the donor receives many disadvantages for performing such a wonderful gift of life.  Meanwhile, the need for organs continues to increase.

Since current measures to increase donation have not been effective, it is debated whether monetary reimbursements could impact the number of donors.  Proposals to remain within the NOTA as it is written link any donor compensation to the donors risks.  They vary from providing donors with different benefits such as life insurance, health insurance, and cash.  Some also include follow-up care to allow data collection to assess for long-term risk. The overall costs of providing donor safety measures, while acknowledging their unmet needs, is estimated between $23,000 and $33,000.  This still saves the healthcare system over $50,000 by someone receiving a transplant versus being on dialysis.

I am conducting a study to examine the opinion and experiences of previous living kidney donors and kidney transplant recipients. Little has been devoted to study donor or recipient perspectives or the current donation process and policies.  The opinion and life experiences of donors and recipients should provide valuable information about the positive and negatives in the current system.  This information can be used to help reshape the future transplant system.  The “wait” needs to be eliminated from the deceased donor kidney transplant wait list.

Your opinion counts, please complete the survey:  http://edu.surveygizmo.com/s3/767244/f516cf59275b

 

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From the Street to the clouds

Born and raised up in Paterson, NJ where the most I knew about life is the block I would chill out at... Drinking everyday, smoking everyday, living selfishly not caring for a thing in the world without the power of God.... I was only heading in the direction of the life I was heading; a hospital... Thinking that I was right all along that God didn't exist cuz look where I was at... needing a kidney to live. After going through the dark stages of life, I finally saw some light when I realized maybe what happened to me wasn't punishment but help. The help I needed to realize that needing a kidney to live was the exact thing I needed all along, a second chance at life... After reading and reading and reading, i finally saw something in this world that finally solidified my feeling for all my trauma; 

"No, the trauma you faced was not easy.
And God wept that it hurt you so;
But it was allowed to shape your heart
So that into His likeness you'd grow."

http://mylifeposttransplant.wordpress.com/

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There is very limited understanding and research on the kidney transplant community. Please help to contribute to the research by sharing your experience as a caregiver. If you are a caregiver or know someone that is, feel free to pass along the information in the flyer below. Caregiving is a demanding and stressful job that drains physical and mental energy. Research for caregivers of the chronically ill shows depressive symptoms are common! Lets help out our caregivers by contributing to research that will inform mental health practitioners what kind of services should be provided. Here's to physically and emotionally healthy caregivers of kidney transplant recipients all around the world!

Participate in a Study on the

Impact of Kidney Transplantation on Caregivers

 

 If you are or have been a caregiver for someone who has undergone a kidney transplant between the ages of 12-30, you may qualify to be a participant in a study on the psychosocial effects of kidney transplantation.

 

This study is focused on the emotional functioning, social functioning, stress, and growth you may have experienced as a caregiver for an adolescent or young adult kidney transplant recipient.  It explores how being a caregiver has affected you and your life.

 

In order to qualify, you must be:

 

a)  a primary caregiver for a kidney transplant recipient who is between 12-30 years old and received their transplant at least 1 year ago.      

 

If you choose to participate, you will be asked to independently complete an online survey. Each individual’s responses will be kept completely confidential. Participation in this study will take no more than 90 minutes for caregivers. Results of the study will be shared with interested participants.

 

PARTICIPANTS WILL RECEIVE A $10 VISA GIFT CARD UPON COMPLETION OF THE SURVEY TO THANK YOU FOR YOUR TIME AND CONTRIBUTION.

 

If you are interested in participating in this study, please send an email to: caregiverkidneystudy.pgsp@gmail.com.

 

You may also contact the research coordinator directly,

Mariana Naldi, M.S., at 209-485-2937.

 

 

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What happened to pancreas transplant group?

Hey all -

I went to post a discussion to the pancreas transplant goup/  I noiced it said pancreas-kideny, which it did not used to  - no biggie.  When I clicked on the post discussion, it said this group did not exist/  Hmmmfff.... Where did it go?  Lol, since I don't really know what other group to post this to, I will ask here.  I have been through heck with transplant meds and side effects.  Now that my blood pressure is nice and high too, they put me on Norvasc as well.  Well, I am experiencing some crazy muscle fatigue.  I waitress, and suddenly my trays are so heavy, I feel weak.  I also walk 3 miles a day at the track..  My legs don't want to carry me.  I put gas in my car the other day, and my forearm was throbbing!  It's been like this for about a week, and I've been on the norvasc fpr aabout 2 weeks/  Is that it, or do I have a nerw issur (Lord, I hope not!) Does anyone have experience with Norvasc and muscle fatigue?  Thanks!

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First Blog Post for me

Hey all,

I hope everyone out there in range of these words is doing well.  Things have been pretty good for me health wise lately, I believe I have made some progress with the only real issue I have had since transplant -- the nephrotoxicity associated with Prograf.  i have noticed a decent size drop in my creatinine levels since I started making a very conscious effort to eat better.  Nothing complicated really, just started drinking more water (much more in fact, thanks to Mio), eating fresh fruits and veggies regularly (McIntosh apples and spinach!), and less red meat.

I am training for the US Transplant Games and I want to make a serious effort out of it.  I ran at the first ever Virgina Transplant Games back in October and it went so much better than I expect as far as how I felt.

I'm looking forward to warmer weather, I hope everyone out there is doing well and staying positive.

Darak

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Colonoscopy went very well!

I had a colonoscopy last week, to check on the U/C. It was 2 yrs since I last had one. I usually get them yearly. My Gastroenterologist said it all looked fine, he did take a biopsy of one area he said looked like a "burn out." I never heard that term before. He said that it was were the colitis might have been, but was gone now.  I will see him in another year!

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It's Been Awhile

Been a hard month or so.  Fighting the good fight but seem to be inching backward.  As strong as I am in my faith and believing that transplant will come quickly, I feel a little saddened that nothing has happened yet.  My little bit of energy is evaporating and I'm just plain tired of being tired! 

On a good note, we may get snow tonight here in Portland.  That would be beautiful!  We have not had hardly any snow this year.  Snow always makes me smile and I could use a smile tonight!

Tomorrow will bring a new and brighter day!  :)

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In my story, there are many hero's.  Of course the one that gave the most is my donor and their family.  How do you possibly thank them for the gift of life they have given?  My donor saved 6 lives and it was reported that one was a family friend. 

I try and thank this person and their family daily, and special celebrations on the day of their birth and the date they actually passed.  I don't know where I would be without their generosity and also for the family for following their wishes to donate.

I received my kidney/pancreas over 3 years ago and I am still amazed at how good I feel now.  Of course like everyone, I do have 'not so great' days and I am extra cautious regarding my health.  I know how fragile this is.

I remember the nephrologist in charge of transplants at Intermountain Medical Center in Murray, UT telling me as I was being prepped for surgery (in case we had a match) that they were "harvesting" the organs and I broke down. 

 The word "harvesting" sounded so cold and clinical but being a physician I am sure they have to distance themselves a little.  I knew what he meant but it was still extremely emotional.

This sounds like I am complaining or not appreciative for my new kidney and pancreas but I had begged to the "powers that be" for my donor not to be really young.  It turns out they were 21.  They had been a huge advocate of the organ donation organizations so today (after feeling so much guilt) I consider myself honored to have been given this chance to carry on their legacy and try to work as hard as I can to promote organ donation and I tribute my donor for anyone who signs up.  I thank them for being such a powerful messenger to "Donate Life".

I need to take advantage of every opportunity that I can to say "thank you" and to let the family know how much I love all of them for giving me a chance at a second life. 

 

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November 13, 2008

Was the day I received my kidney/pancreas transplants.  How can you explain to someone who has never been through (or witnessed) the transformation in the recipients life.  In my families life also. 

In 2004 I moved back to Idaho/Utah from CA to get help for increasingly awful health issues.  An abdominal surgery in 2003 left me almost incapacitated, then my neuropathy flowered into chronic pain and a complete interruption in my life.  I couldn't eat much less work.  I admire people who can live through pain and main- tain even the slightest positive attitude.  Talk about a tunnel with zero signs of light, that was certainly it.  I don't say this lightly but suicide was fast becoming the only option and living alone in L.A. made things even more difficult.

When I finally came back to Idaho, I was immediately diagnosed with kidney failure (among the neuropathy, eye issues, circulation problems, gastroparesis (which causes an entire list of OTHER problems), asthma, etc.  

Almost before I even realized it, I was on dialysis.  An experience that I can honestly say was a nightmare for me (on top of everything, this was another very negative part of my existence). 

Due to an e.d. I was extremely paranoid about a transplant.  I thought weighing a certain amount was so much more important than living a decent life.  It took me 4.5 years to finally get the courage to put myself on the list and unexpectedly, barely six months later, I got "the call". 

I remember my sister came home from school and told me that the transplant center had been calling all contacts on my list (except my OWN cell #) to tell me I was a candidate and to rush to the hospital (over 2 hours away) and my true angel of a sister didn't even question what she would do about her classes/professors and got me to the hospital and stayed with me all that night until after the surgery the next morning, knowing that there was no guarantee that I would even be the one receiving the organs. 

I remember waking up from surgery still unsure if I had gotten the transplants (they had attached a "pain ball" right over the incision area and I was in very little pain (a huge difference from my abd. LAP surgery and the upcoming gallbladder removal surgery I'd have). 

Surreal and awesome.

I have so much more to tell about the events surrounding the transplant!

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Tiny Pieces

Synopsis of Kimalee Hansen.  Born to a wonderful family with 2 brothers and 1 sister.  Diagnosed asthmatic at 18 months, diabetic at 6 years and had many sick days and hospital stays)  Grew up in a very small town in Idaho where everyone knew your business and weren't afraid to discuss it.  I (barely) graduated high school but I did!  And continued my education at a small business school 40 minutes from home.  Did ok, wasn't my passion (I'd have to have a serious talk with myself if it was!)  And then literally endured 2 years at a Junior College in upper Idaho (our version of Siberia).  I continued school because I had nothing else planned.  And it showed in my work.  We were to busy doing things and trying not to get caught to go to class.  Pshaw!

One of the very best friends knew how miserable I was and invited me to move to L.A., stay with her until I could get a job, apt., etc and help me fulfill a life=long goal (started when I was 7) to become an official, long-term resident of L.A.  As soon as I got there and realized that "sure, I might die merging into traffic on the 101 or I might not!  Made so many brilliant friends there and still have many fond memories.  My friends took the place of my actual family (they were 1000 miles away) and we did have fun. 

I will be completely honest, very soon after I was diagnosed with diabetes, I got the idea that this was something to be ashamed of and hidden.  So I lived like "everyone" else but with a high tolerance for junk food. Upon hitting my "tweens" I read or heard somewhere about going into ketoacidosis and the great benefit was weight loss.  The other side;effects would just "never happen to me".  So most of my 20's and 30's my A1C's Averaged 14 to 17.  I never felt "well".  It would take so much of my energy to go out and party, yet I would.  I will be honest and say that I do not regreat all of the great times we had, but I do deeply regret what I have done to my body (that has honestly held up for me for more years than anyone ever imagined).

This is such a happy place to start but its such a big part of my life (I still deal with it but it's nothing like the raging battle it used to be).  Kinda "rounded" me physically and mentally! 

The first time I had ever read about "diabulimia" was a few months before I finally decided to be put on the donor list and I will never forget that the author reported the woman he spoke to had called it her "slow suicide".  I was shocked, I had never heard another human utter those words except me!  Talk about an impact.

This post actually does have alot to do with my transplants and the decisions I made around the subject.

ALOHA for now,

Kimall

 

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Free meds

Free meds to anyone post-tx. Will mail. Given to me by lung tx friends who passed away. I hate to waste these $$ meds. Norvasc,Lasix, Starlix, MAC Nystatin,etc. Let me know: amstenzel@gmail.com

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Steve Ferkau tenth climb

This is my tenth climb...  When I come out of the stairwells at the top, and I do believe I will come out, I'll have climbed 16,320 steps for the Respiratory Health Association at this awesome event!!!

The year started out rather crazily...  On Christmas Eve I was in emergency surgery after a renegade gall stone the size of an angry, small dog (or mothball) tore through my gut...  An incredible surgeon, who is scheduled to do my kidney transplant, removed my gall bladder, my appendix, 6" of my colon, put it back together, hosed me out and sent me on my way with an awesome 10" scar up the middle of my belly!  A few weeks ago, she gave me permission to climb, sloooowly, and I promised I'd stop if my body says stop...  And I will.

I've got 150 crazy people on my team, climbing with me...  Among them, there are around 25 people who were classmates, teammates, grew up with, taught, coached, or knew and loved Kari...  Kari's sister & cousin are climbing with me...  Kari's mom & aunt will be here, cheering us on...  #15, #12, #9, #8, #7, #4 and #2 will be in the stairwells with me...  Kari was a star middle-hitter on her Algona High School volleyball team -- she wore #13...  Her teammates will be in the stairwells with me, and some of them are bringing their moms!!  One of her coaches, and one of her teachers will be with us too...  They're all coming out from Iowa, Minnesota, Wisconsin and Illinois to help me honor their friend and my hero...  Can you imagine what I feel like when I'm surrounded by people who grew up with, and knew and loved Kari?!?!  It's pretty amazing...  They're beautiful people -- and they give me a glimpse of who Kari would have become...

I do this to tell people about Kari, and about her goodness, and about the goodness of organ donation -- and we also do this for the Respiratory Health Association...  They fund research in lung disease, they help people stop smoking -- their work helps everyone breathe cleaner air...  They help people with lung disease breathe easier...  I know what it's like to breathe with diseased lungs, and now I know what it's like to breathe with the most beautiful lungs in the world...  One of their mottos has been, "if you can't breathe, nothing else matters..." I've lived through that motto -- and the RHAMC and all of these people who climb with me help other people breathe.  We have a very special mission...

I know that these are not the best of financial times for many of us...  If you have a couple of bucks burning a hole in your pocket, I or anyone else on my team would love a pledge...  But more than anything, I'd love it if you would check out my little website and read about the beautiful girl, and all of the people surrounding her, and me, who have allowed me to leap tall buildings...

To see my Hustle page or pledge me, click here...

To see my website about Kari, go to  www.ClimbingForKari.org

To find someone on my full Kari's Klimbers team, click here...

These climbs have meant so much to me...  Being surrounded by people who know and loved Kari, and by people who know and love me, is something that defies description...  And the support we've received from people like you has allowed me to tell so many people about Kari...  In the past 10 years, we've raised a quarter million dollars -- because of people like you...  Thank you...  I get to do a fair amount of public speaking, and often enough, when I walk into a room, more than one person pulls me aside and says, "You're the one who climbs a hundred stories with your new lungs, and with your donors' friends!!!" And often enough, they already know Kari's smile...  I am that guy, and I'm proud of that -- and more than anything, I want them to know her smile.  I will have had her beautiful lungs for 12 years in April -- and what she has allowed me to do is more than I'd ever dreamed possible...

And finally, and very important to me -- please consider organ & tissue donation, register to be a donor on your state's registry, and tell your family how you feel.  I know a beautiful girl from Iowa who knew how she felt and she told her family -- I think about her every single day.

Love, Steve

Steve Ferkau
Chicago, IL
Kari's Klimbers
BreathinSteven@gmail.com
www.ClimbingForKari.org


CBS interview from Jan 27, 2011:
http://chicago.cbslocal.com/video/6680773-lung-transplant-recipient-leads-team-in-hustle-up-the-hancock/

My Christmas adventure:
http://revivehope.typepad.com/revive_hope/2012/01/what-i-did-on-my-christmas-vacation.html

My full Hustle link:
http://my.imisfriendraising.com/personalPage.aspx?registrationID=294316&langPref=en-CA&Referrer=direct%2fnone

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Coincidental or Amazing?

Does anyone have dreams at night that come true?

 

I have had many dreams that come true. Several months ago, I had a dream that something was wrong with my

front teeth. Sure enough today I found out that I have a cavity in this tooth.

 

A few months ago, I had a dream that my neighbor was moving and last week hr has a for sale sign on his lawn LOL

 

I can go on and on with dreams that have come true.

Can anyone relate?

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Insomnia post liver transplant

The sleeplessness is getting worse. Going for sleep study in 2 weeks but not sure what that will show them.Was hospitalized for a week 2 weeks ago and literally did not sleep for 5 days. No naps either. First 2 days they gave me 10 mg Lorazepam but it was no help. Now I sleep for 30 or 4 minutes wake up for an hour or 2 then sleep for another 30 or 40 and up for an hour and this goes on until 6 in the morning when I cant stand it and get out of bed and try do start doing things around the house. I go to bed at 11pm so Im not going to bed to early and I do not take naps during the day I average 3 maybe 4 hours a night of interrupted sleep. I am exhausted and crabby.Anyone else going through this? I am post liver transplant 1 1/2 years have gone through a few serious infections, 2 rejections that were caught, a bile duct that had closed and had to be opened. And as I am sure all of you are on scatloads of medications.Before I was diagnosed with Liver Disease I used Valerian Root when I had problems sleeping and it worked very well, but they will not let me use it now. The lack of sleep is affecting my mind, my thoughts, everything.Anyone else out there who can't sleep?
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Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at susygar@aol.com Thank You So Much!

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