The Truth About Online Girlfriends

This post is about the importance of finding at least 1 new friend with whom you can share your transplant journey.  It wasn’t something that I understood was important until I accidentally found myself with 2 online girlfriends- Kate Griggs and Rebecca O’Marrah.  We met online and will all have donated an organ (Kate and I kidneys, and Rebecca her liver) inside a 10 week period this year.  Kate’s donation was 9/29, mine was 11/22, and Rebecca’s is…….TOMORROW!  This is Kate on the left, and Rebecca and her family on the right (she is on the far left).

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In my experience, the best place to find your online girlfriend is the ALODF Donor Support Group on Facebook and the Living Kidney Donor’s Page.  Both are closed Facebook groups for living donors only, and is a great place to talk freely about whatever is on your mind related to being a living donor whether you are thinking about doing it, in the process of doing it, or already did it.  It’s a great resource, and I haven’t found anything out there like it yet in terms of connecting with other living donors.  You are bound to find someone else who is in a similar place on their transplant journey as you are.  Get their phone number- these friends are different than your other friends and will be an invaluable part of your journey!

In the spirit of celebrating new friendships, I would like to give the hugest shout out in the world to Rebecca O’Marrah.  She is donating half of her liver TOMORROW to Kelley Drey, her friend from high school.  She knew her original surgery date before I knew mine, so I figured I would be the last in our trio to get to donate.  Then I got a call from NM that they found a match for my kidney, and I ended up beating her to the OR!  Since then, her surgery date has been changed twice!  It’s been a twisty turney road, and I haven’t heard her once complain about it. EVER.  She is in Chicago from out of state with her husband and kids, and will be here at least 2 weeks post surgery before she can go home.  It’s a pretty major commitment, and she is doing it without the comfort of her own home.  Her recovery will be a lot different than mine and Kate’s.  It’s a longer more complicated surgery, and the recovery is not as fast (I hear it flat out sucks).  She is a brave woman, and I couldn’t be more proud of what she is doing, and how she is doing it.  The world would be a better place if we had more Rebeccas!

Kate and Rebecca- I am so glad that our paths have crossed.  I value our friendships and have learned so much from both of you in the past few months.  I love the excitement, passion, and energy you have for donating your parts.  I admire your willingness to be vulnerable, and risk emotional exposure (you have been models for me here).  I admire your deep sense of compassion for others.  You are very special humans, and I am proud to be your friend.  It warms my heart that it’s only just begun, we have so many milestones to celebrate still!

Best of luck tomorrow Rebecca!  You will do great!  We are so incredibly proud of you!

LJDL

12/20/16:  Update on Rebecca, she and her recipient Kelly are both thriving, and she is on a plane home today to finish up her recovery!  Fun fact about liver donors- it takes about 3,000 extra calories a day to regenerate your liver.  Rebecca has strict instructions to have as many milkshakes as possible for at least 2 months to unsure she is getting enough calories to regenerate her liver which miraculously is designed to grow back to it’s normal size in 6 months.  Kidney donors don’t get to do that, so I guess this is added reward for the liver donors, as their surgeries are harder to bounce back from.

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Bah Humbug

Today marks 8 days into a smooth recovery!

The surgery went perfectly, Dr Ladner took about 2 hours to complete the surgery, and the kidney I am told, is a pretty one!  We know that the kidney was successfully transplanted into somebody in Houston, and that they are thriving today.  The recipient’s donor (who was not a match but able to donate), had their kidney shipped to CA for the second transplant in the chain.  The third transplant should be taking place this week sometime.  At this point in time, I know that my donation resulted in a minimum of 3 lifesaving transplants, but the chain has not ended yet, so it could be more.  I feel great about this and am relieved to know that my kidney is doing well in it’s new home.

My hospital stay was 24 hours, and the care there was fantastic.  I am a big fan of IV pain meds!  I broke a record by being the first person to walk a lap before being checked into my hospital room.  The morning after the surgery, I was able to walk a mile easily.  My stay at the hospital is blurry, but showered with lots of visits and warm wishes from friends and family.  Thanks to all who visited and called!  I wasn’t in any major pain the whole time I was there.

Here is a picture of my incisions.  The small 2 are for inserting laparoscopic instruments to cut the kidney free, and the big one is where they pulled the kidney out of my body.  The

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black is my pant line- the whole area is puffy because they fill your torso with air to extract the kidney.  The muscles are stitched together, but the incisions are glued, and this is pretty much what it has looked like since day 1.  The pain is what you would expect, and easily managed with pain meds.

So 8 days in, I am pretty much sleeping 10-15 hours a day.  It seems to be what my body needs, so I am going with it.  My pain is manageable and gets better daily.  I knew I was being optimistic in planning to be working from home this week, but am surprised and disappointed that my energy level is as low as it is.  There  is no way I could be working from home yet, I am too tired and not fully with it.

The biggest change is how I feel emotionally.  I just feel Bah Humbugish, irritable, and not my positive self.  I’m not regretful or unhappy, just not myself.  I suspect this has to do with the drugs and look forward to feeling myself soon.

I am thrilled that the recipient is thriving, and although they “are not ready to connect with me at this time,” I look forward to feeling more clear headed and refocusing on the amazing outcome that they are having, and digesting the beauty and happiness that lies there.  I am not really digesting all of that yet, and think that will be the next phase in this journey!

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In the meantime, I am home!  I have a great support system, who I am really grateful for, and these loyal companions!

Thanks for reading,

LJDL

 

 

 

 

The Empty Spot

BY GUEST BLOGGER JOSH GORALSKI

Some say your body mourns the loss of an organ. Is this real or is it just a way to describe all the emotions you feel after saving a life by donating your kidney? Who knows? 5.5 years ago when I donated my kidney to give my Dad another lease on life.  This post will share my thoughts on this question. Fun fact: I know Laurie because she was on the floor visiting her Dad when I donated my kidney. Our families met walking the halls.

Background: In March of 2011, I was a freshman and over spring break donated my kidney. The whole process was something that words cannot describe. Having the opportunity to donate a kidney, be out of the hospital the next day and I back to college about a week and a half later is really a testament to the amazing abilities of our body. I will spare you the details but nothing went as planned during the testing process from getting told I was a matched in November to on Dec 23rd getting told my Dad’s blood type had changed slightly and they need to cancel the transplant (for Dec 26th) to finally getting to donate on March 3rd.

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While the recipient comes into the surgery not feeling well and wakes up feeling better instantly. In my Dad’s case free from letting a machine keep you alive, the body gets the boost of a working kidney, something no drug can replicate.  On the other side, the donor goes into the procedure with excellent health and wakes up in pain. In talking with a few other people who have donated their kidney’s they share my feelings. There is nothing you can do to prepare your body for the shock of signing the consent paper, being put out then waking up (after a great nap) wanting to sit up but realizing you are in too much pain to sit up. Good news for those of you considering donating…lately it seems like donors are having less pain upon waking up.

Back to the feeling that something was missing… While the hospital did their one-week check-up and said come back in 6 months, the processing of the what had happened mentally was just beginning. Back at school it was finally starting to sink in, what I had been working on doing for almost a year had happened, you can’t repeat it and you can only pray that your father does not reject your kidney.

One of my favorite questions they asked me prior to donating was, “how would I feel if my Dad’s body rejected my kidney?” I answered that I understood there was always a chance and had to accept it. That question though really symbolizes something bigger, the giving up of part of yourself to give another person, in my case my Dad, in Laurie’s case a stranger, a chance to live a “closer to normal life” whether that kidney works for a day, year or 15 years. The donor was able to give them a priceless gift, the ability to live life normally.

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At some point he will need another kidney and I will have to make peace with the fact I can’t save him again, wishing my kidney had lasted longer but joy for the new lease on life he has had for the last 5.5 years plus+.  It is really symbolic of how it takes a community not just one person to save another’s life. I believe that God gave me 2 kidney’s for a reason one to keep and one to nurture, grow, love, and then to give-away all in God’s time. Giving life to the person who gave me life, nothing more beautiful than that…I told the team at Northwestern that I wanted to give it away to a stranger if I was not a match for my Dad.

To this day, 5.5 years later I still think I can at times feel the empty spot where my kidney was. Having the kidney in our immediate family still every time I hug my Dad I am hugging part of myself. Whether the feeling of emptiness I feel where the kidney used to be is my brain playing with me or an actual feeling I do not know but I do not think it matters because it is as symbolic as anything. For me, that empty feeling is a reminder of struggle others go through on a daily basis because of health issues, it is also a reminder of why I work in the social sector working towards equity. I am extremely blessed to be given this healthy life and want to do all I can to leave the world a better place.

I was blessed to have countless family and friends offering any support but in particular Jessica, a fellow kidney donor reached out. Jessica had donated her kidney only weeks before I did to her brother and we were both in school.  Jessica has no idea how thankful I was to have someone who had also been through the process and I am forever thankful.

As for donating a kidney… would I do it again? Absolutely! (I would donate my other kidney but that would present slight problems for continuing to live). If you have seen the move 7 pounds I can relate to Will Smith who plays the main character in the movie I feel like him wanting to give both kidneys away at times. Would I encourage you to do it? YES! If you ever need to talk to anyone please reach out to me.

The KID in Kidney

BY GUEST BLOGGER BETH SCHAEFER

Laurie is one of my closest friends on this Earth. We have shared a lot of everything. We are always there for each other. Sometimes are easier than others, and most of the time our togetherness attracts complete ridiculousness 🙂

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Laurie was studying at the University of MT when we met. I was working at a ranch store living a very carefree hippy life. Our friendship grew along with us. When she moved to Costa Rica it was hard (even now I cried after I wrote that) BUT our friendship grew even stronger! I became pregnant. From afar she was one of my strongest supports. She got married. I had another kid.

Our lives and friendship growing year after year. We live very different lives now. Very much city mouse & country mountain mouse. Neither where we thought we would be 11 years ago. She has given me so much encouragement to be a mom. She lifts up all her mom friends, admiring us all for different reasons. Especially on the days I’m not sure I know what I’m doing. She is there to help me through it. It’s always made me wonder… Is Laurie going to be a mom ever? She is to animals. Although, that is not the same. I promise you it’s not. For 10 years I thought that, & then 1st hand found out it’s not. However, the bond with animals is for life and is its own thing of love. Laurie loves that thing & is really good at it. I’m sure there are people out there that want Laurie to know what it’s like to have child. To give & nurture human life. They may even see her as missing the boat of parenthood by doing the ‘kidney thing’. I think it’s important to REALLY see that there is more than 1 way to give life- and even though she is choosing an nontraditional way of doing that, we can still meet her where she is and relate to her with our experiences giving life as parents.

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When Laurie told me about her kidney donation my stomach dropped instantly to the ground. In that same instance Laurie was now answering all my questions. I knew why- that was never really needed. I know how Dan changed her focus on organ donors. My questions were what are your risks to your body type things. She answered every one. By the end of the conversation I felt such admiration and pride for someone I love.

beth-picThis past spring Laurie held my hands & my family as we said good-bye to my mom. I’m so happy that she is helping someone have a longer life and not have their loved ones feel that sort of pain. She is doing this for a complete stranger. She has chosen this to be the life she gives and what a beautiful thing that is!

She has given my son- whom she is “mothergod” to- & daughter such a wonderful story to learn by.  She has helped spread knowledge on living donors.  She is helping save lives.  So glad to call this true lover of life my friend. Wishing all positive love to Laurie on this amazing part of her journey.

Lefty Departs 11/22!

Good news!  The surgery date has been sent for 11/22/16!  That’s Thanksgiving week, which really seems appropriate to me!  What better time to give thanks!?

The next step is to go in for a pre-op appointment, and it sounds like it is mainly to go through details and make sure all of my parts are in working order since last time they did tests on me.

Two kidney fun facts I learned recently

  1.  Your kidney is a similar shape as your ear.  Often times when babies are born, if there is an issue with the ears, they look at the kidneys too.  Ear problems often point to kidney problems.  Thanks cousin Mikey for that fun fact!
  2. When they remove your kidney for donation, they typically take the left kidney, and not the right one.  This is because the renal vein  is supposed to be longer on your left side.  My left ureter will then be connected to my bladder.  Left donor kidneys are implanted on the recipient’s right side; right donor kidneys are implanted in the recipient’s left side. This allows the ureter to be accessed easily for connection to their bladder.  Unless there is a bad irreversible kidney infection, or cancer in the recipient’s body, they leave their kidneys in there!  So the recipient ends up with 3 kidneys.

Thanks for reading!

LJDL

 

 

Happy National Cat Day. Meow.

Wohoo!  News to report finally, meow!

There is a chain in place!  A few weeks ago, meow, Northwestern called and indicated that there was a paired exchange that I was compatible with (in another hospital, likely another state).  I went in to donate blood so they could do a cross match.  The cross match was negative (which is good), meow, so we are cleared to move forward planning a surgery date!

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I don’t know much other than this, meow.  There are 2 pairs at another hospital/2 other hospitals.  I will donate a kidney to pair 1 consisting of an organ recipient who has a friend or family member that wants to donate but is incompatible.  That incompatible friend/ family member, meow, donates their kidney to pair #2.  Pair #2 also consists of an organ recipient who has a friend or family member that wants to donate but is incompatible.  The person in need of a kidney gets one from pair #1.  Their friend or family member in pair #2 then sends their kidney back to Northwestern for donation.  That kidney will continue the chain to support a longer transplant chain, meow, OR it will go to someone on the transplant waiting list.  This will, at minimum, result in 3 kidney transplants and 3 saved lives.

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They asked if I could donate Nov 17.  There is a big Transplant Village event/auction on the 19th, so I requested a date the week of Thanksgiving.  That week seems appropriate, as what better way to give thanks to this system that is saving lives!?   If, meow, the week of Thanksgiving isn’t possible, then it will be the 17th.  If it’s the 17th, we will have to think outside the litter box, and figure out how to manage this auction while recovering from the surgery.  You are invited, would love to see you at the event regardless!

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Bury the Bentley!

Organ donation and transplant rates are different in every country, and each country has its own set of challenges when it comes to problem solving for the unmet need for more organs.  There isn’t 1 country that has figured out the right combination of legal and ethical framework to create a self sustaining organ donation program that provides organs for their people as they become needed.  There are, however, some really effective policies and practices in place worth considering if we want to become a world leader in transplant and organ donation.

This blog post goes back and forth talking about living donation AND deceased donation.  As a reminder, deceased donation is when you agree to donate your organs AFTER death.  You can sign up to do that here, if you haven’t already.  LIVING donation is when you donate while you are still alive (what I am doing).  You can only do that with certain organs, like your kidney and liver.

Here are our world leaders, ranked as of 2015 for organ donation.  This combines living and deceased donors.

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Here are the top performing countries in 2015 for Living Kidney Donation.  This excludes deceased donors, and liver donors both alive and deceased.

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So what are they doing different than we are, and what can we learn from them?

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95% of all deceased donations in Spain come from brain dead donors.  This implies that most potential deceased organ donors are cared for in an ICU.  ICU health care professionals include the conversation of organ donation in their end of life care more effectively than in other countries.

“If organ donation is not considered when people die under specific circumstances, potential donors will be missed.  The person fundamentally most capable of influencing the process will therefore be a clinician, primarily located in the ICU, who is able to establish an appropriate relationship with those working on the unit, promoting the idea of organ donation as a part of end-of-life care.”

Presumed Consent and an Educated Public

Presumed consent, in theory, is a phenomenal concept that increases the number of organ donors in many countries.  It means that your government assumes you are an organ donor unless you opt out, and make a point to add yourself to a list of people who do not consent to their organs being donated.  Most of Europe uses a presumed consent model to determine who is an organ donor.  In the United States, it’s the opposite.  You are assumed NOT to be an organ donor unless you opt in and sign up to be an organ donor.

The great thing about this concept is that it captures those who are indifferent or complacent, and puts them in the YES category rather than the NO category. In the USA, the UK, and many other countries, there is a major disparity between the number of people who say that they believe in organ donation vs the number of people actually registered as an organ donor.  Why?  It takes an extra step, and it’s not important or something you think about doing until someone you know needs an organ.  Maybe it’s laziness.

There is a surprising drawback to presumed consent though!  The rate of live organ donations is lower in countries with opt-out systems.  What keeps well-intentioned people from opting in is something that academics, doctors, and organ-donation activists are trying to figure out.  There is a great article in the Atlantic if you are interested in learning more about the opt-in vs opt-out strategies.  Opt out has backfired, it actually has backfired in California recently, but if the public is educated it is proven to work in favor of producing more organ donors.

Join the Club

Israel didn’t make it onto the lists above, but they have employed a strategy that makes a lot of sense to me as someone who appreciates social order.  In Israel, if you are an organ donor, you get priority on the organ waiting list if you are signed up as an organ donor.  Those who have agreed to give their organs, get an organ before somebody who has not signed up to be a donor.  Those who opt in are rewarded, and those who do not opt in have to wait behind those who opted in.  This policy was nicknamed “dont give, don’t get.” Organ donation in Israel increased after this policy went into play in 2008.  It’s something to think about if you aren’t an organ donor right now!  If you one day need an organ, or your child or spouse needs one, you will want to draw from a system that you currently do not support.  Is that fair?

There have been some private organizations that have taken this concept and tried to apply it in countries that do not use this reward system.  There was one in the US called Lifeshareres.  Basically, you sign up to that group, and as a card carrying member, you are promising other members of the group that in the event you die, you promise that THEY get your organs first.  Vice versa- if you have joined the group and NEED an organ, the system is set up so that you would get a directed donation from someone in this group in the event that they die.  The website for this group was taken down in the past year, and despite the thousands of people signed up, it never actually worked out for anyone giving or receiving organs within the group.

Incentives

Under the National Organ Transplant Act of 1984, paying somebody for organ donation is illegal in the United States.  In the 90’s Iran totally eliminated their kidney wait list by making the sale of organs legal.  This is a really interesting topic that starts an important conversation about the organ trade, and the black market that exploits the poor in many countries.  I am not going to argue the moral implications of this topic, but think it’s a great example of how incentives motivate people to do something as extreme as selling an organ.

Nineteen states currently provide tax incentives for organ donation.  Utah covers up to $10,000 of unreimbursed expenses (travel, lodging, lost wages, and medical expenses) associated with organ or tissue donation.  Four states provide tax credits to employers for wages paid to employees on leave for organ donation, and thirteen states have a tax deduction for up to $10,000 of unreimbursed costs.  There is not a federal law that requires an employer to give special time off for organ donors in the US, however many states do have special laws in place to protect their donors.  It is a great start, but does not compare to standards in other countries where donors are given greater financial incentive, and have fewer worries about the financial implications of donating due to the laws in place to protect them.

Heroin and Drug Overdoses

Sadly, one thing that is currently helping out the organ waitlist in the US is our heroin epidemic.  Right now, 1 in 11 organ donors is a drug-overdose victim.  With the epidemic growing, we can expect that these numbers will grow in favor of more people getting organs as a result of more people dying of a drug overdose.

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A Great Marketing Campaign

While I am not into football, I love a good Superbowl commercial, and have a huge appreciation for marketing stunts that WORK!  There have been several in the past few years related to organ donation, and they have done their job in getting more people to sign up to be donors.

Leo Burnett was behind this stunt in Brazil.  Not only did it bring the topic of organ donation into the media, but it resulted in thousands of people signing up to be organ donors in Brazil.  Way to go Brazil!

We can do a better job that we are doing.  There is a lot of work to do here, and we have the advantage of seeing what does and doesn’t work in other countries!  95% of Americans are in favor of being a donor but only 52% are registered.  So a simple call to action for YOU today.  If you believe in organ donation, make sure that you make that known.  Tell your loved ones, get on the organ donor registry, and be 1 less person in our country who wastes their organs because they didn’t take the time to register!

RESOURCES

Top 5 Statistics

http://bja.oxfordjournals.org/content/108/suppl_1/i48.long

How Spain Became the World Leader in Organ Donation

Opt In Vs Opt Out Organ Donation

Transplant In Europe

Why Don’t More People Want to Donate Their Organs?

Wikipedia

The Heroin Epidermic

Donate Life Statistics