bye-bye-kidney-blog

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Bye-bye Kidney: Days 12 and 13

August 12 and 13, 2015 So...I got a call yesterday (12th) while meeting with my thesis advisor, and just had the chance to return it today. The transplant center has a minimum age of 25 for donation. I'm 21. So, guess I can't donate in Colorado. I've emailed the NKR to see what my options are, but I REALLY don't have the money to travel to a different center. I know there are grants to help with travel, but they seem difficult to get. Also, I had read somewhere (I think) that I can have my tests done here if I'm donating in a different state, and then only travel for the surgery which is almost doable. Also I found out that my current health insurance could spike after donation, even though it's not supposed to. So, I'd have to sue them. Woot. AND I could have trouble getting life insurance in the future or have to pay more. So, I'd have to sue them, too. Double woot. I may just have to wait four years? I haven't told my parents yet, but I know they'll be thrilled.

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Good morning, here are a few FACTS about Organ Donation.

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Florida kidney donor saves Minnesota toddler 

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PRO TIP: don’t need anyone else’s body parts to stay alive.

7 Horrific Realities of Receiving a Donor Organ

#7. Being on a Recipient List Completely Upends Your Life

As a patient in Albuquerque, I was going to have to travel, and my cystic fibrosis clinic gave me three options: a children’s hospital in Denver, a hospital in Phoenix (that had, at the time, performed exactly one double lung transplant), or Stanford mothafuckin’ Hospital in California. It was the equivalent of asking whether I’d prefer to meet Aquaman, get a high-five from the Wonder Twins, or have Batman swoop in, save my ass from a fire, then take me out for a late-night breakfast-dinner of waffles just to make sure I was handling things OK, maybe walk me home, tuck me in, cuddle up beside me until I drifted slowly to sleep, his comforting, gauntleted arms holding me tighter and tighter…

My point is that Stanford sounded much better.

Read More

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Bye-bye Kidney: Days 8,9,10 &11

August 8,9,10, and 11, 2015

 Clearly a lot has happened in the past four days (for those of you who don’t know me, or don’t have my voice in your head, that’s me being sarcastic). 

Not a single mention of kidney donation during the weekend from my family which was a beautiful break. And not entirely true, I guess. I asked them not to tell anyone until I check in for surgery. I haven’t told my sister yet, and I will. That’s probably who I’m most scared of telling; I have no idea how she’ll react. I can’t imagine it’ll be a resounding declaration of approval, though. 

Anyway back to this weekend: all very uneventful as was today (the 11th). The big event of yesterday was just lots of paperwork. Woot! Medical history forms were truly thrilling. Really groundbreaking stuff, I know. Anyway, less to read- for those of you who bothered.

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Bye-bye Kidney: Day 7

August 7, 2015

Not a whole lot happened today donation-wise. I sent in my history and a confirmation of my weight. I know I promised the documents they sent me (informed consent, and background information) and I will do it. Eventually. It’s only about 60 pages.

Based on the timeline I’ve been offered, three weeks to get ready to donate and anywhere from two to four weeks for recovery based on the procedure, I’ll likely be donating in December. Right after finals. In the midst of my thesis. Meaning 127 days until the earliest I could likely donate. I feel horrible about that. I can already hear the disappointment in the donation coordinator’s voice when I say my earliest convenience will be in almost 5 months. I made the commitment to my schooling and my thesis before I decided on this course, so I’m sticking by that conviction.

I did read an article this morning (4am) examining altruistic donation, and I’ve made my mind up about a few things

I don’t want to know who I’m donating to...

If they’re a racist, well they’ve got a little bit of brown in them now

If they’re a religious zealot, at least they have faith

If it’s a kid, an elderly person, it doesn’t matter

...Mainly because it’s not my business. Who am I to decide who has a chance at life? No one really.

Last note, once I start school I’ll do weekly recaps except for major events. Who would want to read 134 of these? 24 is even a lot.

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Bye-bye Kidney: Day 6

August 6, 2015

So remember how I said this was going to be a lengthy process? I may have lied to you all. To be fair, I’ve no idea how any of this works. Like, at all. On any level. 

I received a call from the transplant center in Denver last night after I had already posted my Day 5 entry. I returned the call this morning and was filling out paperwork and reviewing materials by noon. I’m just so...overwhelmed? I’m not good enough at writing to accurately describe the feeling: shocked, caught off guard, rushed, potato? Who knows. Not me, clearly.

I told my dad today, too. At a bar. I love my dad, a lot, and I thought he had heard my mom and me talk about it, but he seemed shocked, scared, and disappointed. He kept asking me, “What if X needs a kidney?” or “What if Y needs a kidney?” mostly just “WHY ARE YOU DONATING A KIDNEY?!?” I’m not sure what he wanted me to say. I told him it’s not about my possible “what ifs,” but someone else’s reality. I know I’m going to have to keep defending this to EVERYONE I know, but it’s completely exhausting.

It’s weird to think of myself having to stay strong in this process, but I really feel I must constantly reaffirm my conviction to this because I’m being guilt-tripped. I know it’s not on purpose, I know it’s from a place of deep concern which I greatly appreciate. I just want people to understand that they’re not talking me out of it, they are just frustrating me. I think it’s best not to tell a whole lot of people until I am confirmed as a donor, going to the hospital to have the surgery.

Anyway, to be more helpful and less self-centered, I will try to post some of the information so anyone can look it over!

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interested in altruistic donation? Here are the NKR partnered centers, minimum and maximum ages

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Bye-bye Kidney: Day 5

August 5, 2015

I had my physical today, and was shockingly calm. I guess I just figured that whatever happens happens and I had no reason to think I had any health issues.

One thing that strikes me is that everyone has asked my “Why?” and “What made you decide to do this?” which is a little concerning. I really don’t understand why everyone feels the need to question me on a pretty personal choice. I understand it’s unusual, out of the ordinary even, but why is me trying to help seen as me making a mistake? I want to help someone who needs it most.

I also think that my doctor, my parents the few friends I’ve told also think it’s something I’ve just come up with. Granted, I am a fairly random person. I get it. I often get distracted and come up with half-formed plans, it’s sort of just part of who I am. I don’t know if that’s a Aquarius thing or an INTJ thing, but it’s just the way I am (both of those classifications are pretty discordant, but I digress). So I understand when people think I haven’t thought this through. The only thing is, I have. I’ve been debating, researching, and reading all about living donation, altruistic donation, kidney vs liver donation, I’ve done my homework! 

It’s not a coincidence that I started actively pursuing the process on August 1. I first came across the idea in June, and really wanted to make sure this was something that I wanted to do, and for the right reasons, so I decided I would give myself all of July to really think about it, and understand what I was doing, so that on August 1 I could make an informed decision. And that’s what I did. 

Anyway, back to today:

Everything in the physical was fine, I actually lost a little weight and somehow shrunk an inch (i’m pretty sure it’s the way I was standing though). My doctor really wanted to make sure I was ok mentally because I’m a huge ball of stress. It’s a good thing though, it’s my motivator and keeps me focussed. After, he signed my paper and gave me my booster shots. I had set aside three hours for this visit, but it only took one! 

I had them fax the form and the National Kidney Registry got back to me so fast! I selected the transplant center closest to me on the list and am just waiting on a reply from them. 

Everything is moving so fast now it’s amazing. I’m a little overwhelmed with all these recent developments, but I know it’s a long process and tedious, so I’m preparing for that now rather than being surprised later.

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Bye-bye Kidney: Day 4

August 4, 2015

Today was a rough day donation-wise.

My mom and I had a conversation about the timing of everything. She wants me to wait until May to donate, which is a fair question but I don’t even know when this will happen. I had originally wanted to do it before school starts, but I’m not so sure that’s possible. 

Another thing is that my sister was in a serious car accident a week before starting her Senior year and had to take a year off just to recover. She eventually went back and graduated on the Dean’s List, though. I think that the fact that I’m electing to have surgery is part of what makes her uncomfortable with the idea. A “why would she want to go through that?” type of thing. Plus, she thinks that something will go wrong and I’ll end up graduating late, if at all.

Needless to say this conversation took a quick turn for the morbid. I told her that if anything did go wrong, I’d be dead so I wouldn’t be graduating at all! In hindsight that’s 1) a horrible thing to say in general, and 2) a horrible thing to say to my mom. Not my proudest moment. I think she understood what I meant, and I really don’t want to worry about things that could go wrong when I’m just at the beginning of the process. 

Also, the surgery does have risks, my life after will be different, but there’s over a 90% chance that I’m going to be fine. Over a 90% chance that I’ll live a totally normal life after the surgery. I’m a pretty average person, so I’m not too worried.

I know she’s scared for me because that’s what she does, she worries. I just have to remember that I’m not doing this for her, I’m doing this for someone else - whose mom is more worried about losing her child than my mom is of losing me, because for her it’s all too real of a possibility. I just wish my mom understood that, maybe then she’d understand.

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Bye-bye Kidney: Day 3

August 3, 2015

Today I registered with the kidney registry and scheduled my physical to have the registration finalised.

I think it would have been helpful if I knew about this entire process before now, but.... Luckily I had already scheduled my physical for this week, which was particularly fortuitous.

I wanted to do this before school starts, which doesn’t seem like the best idea anymore. I was actually pretty conflicted about this last night. I kept thinking how sooner is better, since whoever would be getting my kidney having to wait and continue painful treatments seems unnecessary if I can donate sooner. The only problem is if I don’t donate before school starts, I’d have to wait until winter break since I can’t take two weeks off of school.

I have to admit, I’m feeling pretty discouraged about the whole process. I thought anonymous donation would more encouraged and have a more streamlined process, but I’ve had to do this all myself So in order to help others in the future I’ll post a list of steps/websites on my blog.

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Long-term medical risks to the living kidney donor ca. 2015 #Nephpearls http://t.co/8q3JNFql5s pic.twitter.com/ZrUEVsozFE

— Edgar V. Lerma (@edgarvlermamd) July 12, 2015

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Living organ donors are now responsible for a significant number of organs transplanted each year. http://t.co/3JoTRSEtJy

— RenalSupportNetwork (@RSNhope) July 13, 2015

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Dad Saves 3-Month-Old Son After Mother's Intuition Raises Red Flags

After newborn Caleb was diagnosed with a rare liver disease, the perfect donor stepped up: his dad. Caleb’s mom shares the “mind-blowing” saga the couple endured to help their little boy recover. (Photo: ABC Inc., WABC-TV).

Shortly after her son Caleb was born, Brittany Munn knew there was something seriously wrong with her baby. What she didn’t know then was that her husband, Brian, 30, held the key to saving their third child as a living donor for the life-saving liver transplant he required at just 4 months of age. And now, thanks to Brittany’s intuition and Brian’s selflessness, their son is a healthy, happy 8-month-old. He’s also inspiration for the couple’s new mission: to raise awareness for organ donation. Their family, after all, wouldn’t be complete today without it. 

STORY: Happy Ending for Ailing Twin Whose Sister Got Dad’s Liver

“When Caleb was discharged from the hospital he was jaundiced, but the pediatrician told us it was nothing to worry about,” the Binghamton, N.Y., mother, 27, tells Yahoo Parenting. “We trusted the physician, but by the second month, Caleb was still off-color. Otherwise he seemed healthy. I was getting lots of comments from people about it, and I was like, ‘I know my baby is yellow. I don’t know what’s going on!’” 

STORY: Teacher Says She’s ‘Lucky’ to Give Her 6-Year-Old Student a Kidney

(Photo: Caleb’s Journey/Facebook)

The doctor suggested that the problem was breast milk jaundice and offered to test Caleb’s liver at his 4-month appointment, but Brittany didn’t want to wait that long. “I fought to get him a liver test even though it was three days before Christmas,” she recalls, adding that the results were all highly elevated but an ultrasound looked normal. Still seeking answers, she enlisted a gastroenterologist. “He saw Caleb’s test results and said, ‘I’m coming in to see you on my day off Christmas Eve,’” she says. “I was terrified.” 

But that was just the beginning of the family’s ordeal. By Jan. 12, Caleb was diagnosed with the rare liver disease biliary atresia and admitted to the hospital. “Only one in 15,000 kids in the U.S. have it,” says Brittany, now an expert on the condition by necessity. “And they’re usually female.” Surgery just two days later offered them hope “that maybe we could go home and start living a normal life,” she says. 

But the procedure failed, and little Caleb began accumulating bile in his belly that swelled it so much, the snaps on his onesies kept popping open. The gastroenterologist sent them to the local ER, where doctors decided to whisk them down — via a five-hour ambulance ride in a snowstorm — to Children’s Hospital at Montefiore the next day, on March 2. 

It was clear that the situation was dire, says Brittany, who had left her other two children, son Noah, 3, and daughter Elise, 2, with Brian back home. She was told that Caleb would need a liver transplant — from someone with an A- or O-positive blood type. “I was turned down because they said you have to be at least six months postpartum to be considered,” she says. “And Brian is AB positive so he didn’t even put in application. We were devastated.” 

After a few weeks in the hospital, Brian came for the weekend. They’d had a friend of a friend tested to be a donor only to discover at the “make or break” MRI test that she wasn’t compatible. “That broke us,” admits Brittany, who by now had gone weeks without seeing her other two children. “I was feeling guilty that I didn’t really hug them very long before I had to rush out the door to get Caleb to the ER,” she confesses. “I wasn’t thinking that it would be weeks until I saw them again, and that was eating me up. There were many nights that I cried myself to sleep in the hospital because I missed my other two babies.” 

As soon as the doctor managing Caleb’s care saw Brian at the hospital, she asked why he hadn’t applied to be a donor. Then, despite what the couple had initially been told, the doctor relayed some surprising news. “She told us that when you’re related that closely to a child, blood type doesn’t matter,” says Brittany. “Caleb was under 1, so his immune system wasn’t going to be an issue.” 

(Photo: ABC Inc., WABC-TV).

Brian was tested immediately, and four days later they knew he had “the perfect piece of liver to give Caleb,” says Brittany. 

“It was a huge relief. The two of us were like, ‘Finally. We can see an end in sight,’” Brian tells Yahoo Parenting. “I was overjoyed that I could give my little boy a second chance and that we didn’t have to wait any longer to be on the road to recovery.” 

(Photo: Caleb’s Journey/Facebook)

Since the March 20 transplant surgery, Brian has “bounced back wonderfully,” says Brittany — though Caleb has been back in the operating room three times since his transplant due to complications with healing. After his third surgery, though, Brittany says things “finally felt right.” She was able to hold Caleb again and as he continued to get better, they got the green light to go home upstate on April 13. 

(Photo: Caleb’s Journey/Facebook)

“I couldn’t wait to get back,” she says. “Everything had happened so quickly but we were blessed that it did because there are other kids with the same scenario who wait months for an organ, and for us it was a matter of weeks. Caleb’s health deteriorated so quickly that we wouldn’t have been able to save him otherwise.” 

Looking back, Brittany says the experience is “mind blowing.” The family even had a doctor admit to them after the fact that she didn’t think Caleb was going to make it seeing how severe his condition was at one point. Now the mother says she’s sharing their saga in interviews and on their Caleb’s Journey Facebook page to raise awareness for organ donation. 

“I joked with the nurses that I earned my scrubs while we were in the hospital,” Brittany says, noting that what helped get her through the hardest moments was support from her family, friends, and church community. “I really don’t think I could have done it on my own. My faith brought me a strange sense of peace that things would go OK.” 

(Photo: Caleb’s Journey/Facebook)

Miraculously, they did. Today Caleb is well enough to play and even roll around, which Brittany says is “incredible so soon after surgery. He’s just thriving.” And thanks to dad’s liver, “he is pink-skinned for the first time,” she says. “He’s not glowing orange anymore.” 

To donate to the family, who are fundraising to offset the cost of their medical care, visit their GoFundMe page and their You Caring campaign. 

Please follow @YahooParenting on Facebook, Twitter, Instagram, and Pinterest. Have an interesting story to share about your family? Email us at YParenting (at) Yahoo.com.

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Ashleigh Mounger, 28, pictured at left, with her sister, Maurisa Mounger, 19. Ashleigh was diagnosed with the rare disease Wilson’s Disease in 2007, and she needed a new liver or she would have died, according to news reports. Maurisa donated more than half of her liver to her older sister, and both are now healthy and recovering, the story says: http://www.9news.com/story/news/health/2015/07/17/sisters-living-donor-liver/30324163/. “I have one scar that I am very, very proud of,” Maurisa said. #wilsondisease #wilsonsdisease #organdonation #organdonor #raredisease #raredisorder

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if you’re interested go here!

Bone marrow donors help save lives

Without donors, many Americans in desperate need of a bone marrow transplant would not be with us today. Bone marrow donors help save lives

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Life Changing Event

     Three weeks ago I had a life changing event.  I received a kidney from a living donor.  My kidney function had deteriorated and I was getting ready to start dialysis.  Suddenly everything changed.  I felt like I had entered a parallel universe, and my dream of receiving a kidney had materialized.  I was stunned and elated, and less then a month later surgery was performed.  Both of us were hobbling around for a while, but we improved by leaps and bounds until my donor was once again swimming and I was taking longer walks each day.

     My vet practice had to be put on hold for 3 months.  During that time I plan to read many books, study and take vet courses, improve on the saxophone, and study French.  I plan to rest a lot, and to be awake when I feel it is right.  

     The new me is an early bird, up at 4:30 AM, rearing to go.  I have most of my To Do list finished by 9, except “Practice Sax”, as I fear I will get the wrath of my neighbors at that hour.

     Taking my early morning walks at 5:45 AM with George my Pomeranian, has turned me on to the many beautiful things in my neighborhood. I watched the sunrise today while the blue moon was still in the sky.  I looked at the gardens, some very elaborate.  I treasure the quiet, as the world has not woken up yet. I listen for the first chirping of the birds, and later hear the cicadas, as they reach a full crescendo chorus.

     I still can’t believe my good fortune.  I wonder how/why but I accept it and I am so grateful.  I am constantly in touch with my donor, and I worry about her.  She worries about me too.  We are truly connected by a shared organ.

     I know life has no guarantees.  Anything can happen.  But this has given me faith in the good things in life, and has made the “small stuff” melt away.