Because sometimes, it’s complicated

BY GUEST BLOGGER REBECCA O’MARRAH

I have always been a very strong advocate for organ donation.  Going back 24 years, when I was 16 years old and I got my driver’s license.  I can remember thinking if something was to happen to me, I would want to help someone in need.  Since that day, organ donation has been a part of my life in several ways.

Twelve years later, my father suffered a heart attack and stroke that eventually lead to his death.  Although they were unable to use his organs for transplant, my siblings and I were given the opportunity to donate my father’s body to science because of the need of cadavers to be used for medical advances.

In 2011 my mother-in-law had a massive stroke that took her life.  Once the doctors had informed us that she had lost all brain function, we met with the Gift of Life team and the family made the decision to donate her organs.  This gave us all comfort at a very devastating time.

About 4 years ago, my mom was tested to be a living kidney donor for a man that was born with one kidney and was suffering from kidney failure in his other.  Thankfully my mom was a match and was able to donate one of her kidneys to him.  That selfless act inspired me to want to do the same if I were ever in that situation.  I actually tried to see if there was national database that I could be listed on, like the bone marrow registry that I had joined a few years before, but wasn’t ever able to find the information needed.

On April 14, 2016 I was going through my Facebook timeline and came across a flyer that had been shared by one of my friends.  As soon as I saw it, I recognized that the person in the pictures was someone that I had been friends with over 20 years ago and she was in need.  She had been battling a rare disease of the bile ducts in her liver known as PBC, Primary Biliary Cholangitis.  For 10 years her medical team had been managing it through medications, but it came to the point where she was in need of a transplant and a living donor was her best chance.

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Kelly and I had gone to the same high school, but it wasn’t until we both started working at the same place that we became friends.  Shortly after she started working there, we were practically inseparable for about 2 years.   Although we had lost contact throughout the years, I just knew that I had to be tested.  Without any hesitation I called Northwestern Hospital.  I live with my husband and children in York, PA; however, I was already planning on being in the Chicago area about 2 weeks from then, so they were able to schedule me to be tested while I was there.  Two weeks after the testing was done, I got a call that confirmed I was a match.

After it was confirmed I was a match there were still a few things I had to do before they would clear me for surgery.  I had to have a biopsy of my liver to test for a fatty liver and I had to lose 20 pounds.  I went for the liver biopsy on July 5 and the tests showed that my liver was perfectly healthy.  I then started the process of losing weight.  By the end of September I had lost the 20 pounds, but I had to go back to Northwestern for another evaluation to ensure I was still healthy enough to go through surgery.  That evaluation took place on October 13.  When I received the call from the transplant coordinator that I had been cleared for surgery we set the date of surgery for November 30.

I was a ready to go in for my pre-op testing when we got a call that Kelly’s insurance was not going to cover a living donor.  This was devastating news.  It took about a week or two to get that straightened out, but by then it was too late for us to proceed with surgery on November 30.  Our surgery was rescheduled for December 5, with pre-op testing to be done on November 25, the day after Thanksgiving.

On December 5, Kelly and I got to the pre-op holding area and started getting prepped for surgery when we find out that due to 4 emergency transplants over the weekend, they were unable to proceed that morning.  Surgery was rescheduled, yet again, for 2 days later.

December 7 was the big day.  Although we were anxious and excited, we had a hard time letting ourselves believe that it was finally happening.  We got to the pre-op holding area and once we met with the surgeons, we were assured that we were going to proceed.

Both of our surgeries went well, with only a few small complications.  I had some scar tissue they had to deal with from when I had my gallbladder removed 3 years prior and it took them a lot longer than anticipated to put the liver into Kelly, but neither of these things caused any lasting problems.   Here is me with kiddos, post surgery.

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Since I lived out of town, it was required that I stay in the Chicago area for approximately 2 weeks after surgery to ensure that I was healing properly.  After being cleared to go home, I flew home on December 19.  The next day I was in a considerable amount of pain that was not being relieved by taking Tylenol and I had been off prescription pain medication for 5 days, so I didn’t have anything stronger to take.  Hesitantly I went to my local hospital to see if they could do something for the pain.

It was a good thing that I listened to my body and went to get medical attention, because it turned out that I had blood clots in both sides of my lungs.  I was immediately admitted to the ICU to begin treatment.  Shortly after starting the Heparin, a clot dislodged and went to my heart.  This was the scariest feeling ever.  I couldn’t breathe, I was sweating profusely and it hurt so badly.   Luckily that didn’t happen again.  Then, after doing a blood test they realized that my blood platelets had dropped to extremely low numbers.  Typically when this happens after starting Heparin it is due to a condition called Heparin Induced Thrombocytopenia, or HITT.  They stopped the heparin and tested me for Hitt, but the test came back negative, so they started the Heparin again.  For about 3 days they could not figure out why my platelets were so low.  On Christmas Day they decided that I needed to be transferred back to Northwestern to be treated by the transplant team.

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After I arrived at Northwestern, they decided to retest me for HITT and this time it came back positive.  Apparently I had been developing the condition as they were treating me with the Heparin.  It took another 15 days in the hospital to get me off the Heparin and switch me to Coumadin.

I just finished my 3 month Coumadin treatment and have had a CT scan and ulatrasound that show that the clots have resolved.  It was also determined at my three month post-op checkup that my liver function is back to 100%.  I can resume all normal activities, including being able to drink alcohol, with the exception of donating blood – that will have to wait until December.

It is so amazing to look back at everything that has happened in the past year and to think that, I donated part of my liver and am back to normal already.  Although we had some setbacks and I encountered such a huge complication, I would still do it again if I were able to.  Knowing that I gave someone their life back and allowed them to look forward to a long, healthy life with her family is such a great feeling.

I hope that hearing this doesn’t scare anyone out of wanting to consider living organ donation.  I tell my story to inform people of the possibilities of complications and how even if they happen, you do get through them.

Peace, Love and Recycle Yourself,

Rebecca O’Marrah

FB_IMG_14921358576061ABOUT REBECCA:

Rebecca is a living donor who lives in PA with her loving family.  She donated a portion of her liver to a high school friend (Kelly Drey) December 2016 after becoming aware of Kelly’s need for a liver on Facebook!  If you have any questions about living liver donation or anything Rebecca went through, please feel free to email her at romarrah@gmail.com.  She is a fantastic donor advocate with experience to share.

 

Shared Parts Party Hour!

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April is Organ Donation Awareness Month, and in the spirit of giving, my friend Kate Griggs and I are starting an annual gathering at The Bean in Millennium Park. Our goal is to get as many organ donors and recipients in one place at the same time. Next year we will shoot to set a world record! To set a world record next year we will need at least 250 donors to show up at the same time.  Anybody who supports organ donation is welcome!

We believe organ donation should be cost-neutral, meaning you should never have to decide or not decide to donate based on your financial needs. To support this belief, we are asking for donations to gift to The American Living Organ Donor Fund (ALODF). ALODF is a nonprofit dedicated to fully supporting the American living organ donor to achieve their goal of saving another person’s life. They improve the experience of living organ donors and their loved ones by supporting them through the organ donation journey, through their network of donor patient Navigators who support their lives personally and financially. In 3 years, this group has helped with over 100 transplants.

RSVP or donate at the Shared Parts Party Hour Page!

The Time Commitment

One of the purposes of this blog is to document the timeline of a kidney donation experience so people considering organ donation have an idea of the time and resources required to get through the experience.  Obviously this will vary from person to person and center to center.  Through my journey I have gotten to know several other kidney and liver donors, and none of us had the same exact experience.  You can check out the detailed blow by blow of my experience on the This is Timed page of the blog.

Broken down, getting approved to donate and being matched was a minimal time commitment (36 hours) stretched over 8 months.  After surgery I was pretty useless for 2 weeks.  The third week I  didn’t feel great, but could work 1/2 days at work.  I had one extremely rough day during week 3 where the pain peaked, and spent one night back at the hospital.  Week 4-6, I felt great other than needing a little extra sleep.  By week 7-8 I felt completely back to my old self, and my vitality had completely returned.  It was a major focus of my life and energy for 10 months from the time I decided to do it, till the time the donation was over, and I felt back to my old self.  Not bad!  This week I am 11 weeks out from surgery, and feel awesome.  I think I actually feel better than I did before the donation!

If you are trying to figure out how this timetable will translate into your donation experience, it’s a great idea to talk to multiple donors.  Don’t make the mistake that I did and assume that your recovery will be on the short end of the spectrum, because you are superwoman.  That sets you up for disappointment if you don’t hit the benchmarks in your head.  Figure out what you need to do to be patient with your body during recovery, and just give your body what it needs when it needs it!  Walk as much as you can and water the bean all day.  Plan for a long and slow recovery, and then be pleasantly surprised if it goes a little faster than expected!

Please contact me if you would like to be connected with other kidney or liver donors to see how their donation timeline compared to mine.  There are tons of donors out there who would love to talk to you, including me!  If you are a kidney or liver donor, I would love it if you would comment about your donation experience so that our readers can see what the experience is like for multiple donors.  If you are open to being contacted, feel free to post your contact information as well.  Thanks in advance!

-LJDL

 

 

 

 

1 Month Later…..

screen-shot-2016-12-27-at-11-16-57-amThis  past Thursday marked the 1 month anniversary of my kidney donation.  I would say I am at 87%, my only complaint is that I get tired easily.  If I could sleep 10 hours a night, I would!  In terms of side effects, this one really isn’t so bad, as I have an awesome bed, and am gifted when it comes to the art of sleeping.  The hardest part of my recovery was the emotional toll that it took.  I felt weepy and emotional, and not like my normal, positive self.  I am thrilled to say that today I feel like my old self again!  I had a follow-up email from NM on my 1 month anniversary letting me know 3things:

  1.  My recipient doesn’t want to connect with me yet, and respectfully requested we not check back in for awhile
  2. My recipient and their new kidney are doing very well!
  3. The chain is so far 3 transplants long, and still going.  This means at minimum, the chain will result in 4 transplants.

I would really love the opportunity to connect with my recipient, however this can only happen if the recipient chooses for it to happen.  They know I am eager to connect, and the ball is in their court.  For me, it would be rewarding and exciting to meet, and it would give me closure.  Most people who donate an organ know the recipient.  I imagine the recovery process is different for these people- the reward of the donation is right there in front of them.  They can see the life they impacted.  In many cases they can watch somebody they love dramatically change from being sick to being healthy.  It’s a nice reward on the tough recovery days!  In my case, I don’t get to see that.  Sometimes it feels like I didn’t actually donate a kidney.  During my recovery, I thought about it a lot, and took it personally.  It’s not so much disappointing me today- if we do get to meet, I see it as a bonus, but I am not counting on it happening.  I am at peace with that.  I respect the recipient’s privacy even if I don’t understand it.  Confirmation from NM that the recipient is healthy, and knowing that the chain is still going makes me happy, and makes me feel good about donating.

An online friend, Diane Brockington, posted this, and while it took a few weeks to resonate, I think she’s right:

“Your reward isn’t delayed-it’s there every time you open your eyes in the morning, close them at night. The gift you gave was the decision to donate. After that, so many factors come into it that are completely out of your hands that you have to focus on the gift. Undiminished by the presence of a thank you. You did it. You gave. Rest in that.”

I had a particularly nice Christmas this year- I spent it with my Dickinson family and we had some really nice quality time together.  It was at my house, but my mom did all the work, including making sure we all matched (THANKS MOM)!  I am so grateful for all of these guys.  They have been so loving and patient with me.  Donating a kidney is #thebestideaever, but wow, you can’t do it without a support system.  I didn’t fully understand how much my decision to donate would effect those around me.  I am glad they were up for it 🙂

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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.