Background

8/11/17

And on and on and on and on

Every day, someone asks me how I'm doing and have "they" found a match yet.  It truly is a blessing to have so many people care about me. So if someone reading this is someone who keeps up on what's going on with me...... thank you :)

As for the second question: I have no idea. The transplant clinic takes the donor confidentiality very seriously. All they will tell me is that people are calling about me and that they are testing people. They did tell me they have a candidate who is matching so far but still needs to come in for their all day evaluation (which took about 4 hours for me but I had to get a lung xray) and that it's the transplant clinics fault the potential donor has to wait so long, but they won't tell me why. Even worse, at this last check-in, they thought I had already had my bilateral nephrectomy and had the dialysis port put in and were shocked to learn that my nephrologist hadn't done anything since my last visit in May. Because of that, everything is going to be delayed because those things have to be done and healed before I can get a transplant.

I don't know why she hasn't done anything, she keeps telling me she's "working on things - getting things moving" but it turns out not to be true. That coupled with my doctors telling me she doesn't respond to their calls makes me think she doesn't want to handle my case. Which is fine, but I wish she had just transferred me instead of doing nothing. When I called the clinic to ask if I could be transferred to another doctor, the desk clerk said it's their "protocol" to make the patient come into the office, sit in front of the doctor and tell them you want to be transferred to another doctor and why. 😞 I honestly cannot believe they would put all that pressure on an already sick, already vulnerable patient. Especially since I wasn't even allowed to choose which doctor I wanted to see in the first place!

You see, at the beginning, I was told by the transplant clinic that I had to be referred to the transplant clinic by my nephrologist. Well, my nephrologist was in Boston, so they told me it had to be someone local and suggested an OSU Nephrology clinic (implying that it had to be done by an OSU nephrologist). So I called the clinic and told them which doctor I'd like to choose and they told me that none of my choices were accepting new patients and that I'd only need to see this doctor once, for the referral, so I agreed that I would would see her, since it was only once. Well, my care under her has not been good (un-returned phone calls from me when I was having a serious reaction to a medication she prescribed me, my primary doctor who tried to talk to her about it and the transplant clinic) and the even worse offense of literally not doing anything to prepare me for transplant when that is the only reason for our relationship - she is supposed to organize the nephrectomy and the dialysis port. To top it all off, she cancelled my next appointment, during this crucial time, and only notified me through MyChart, which I only check when I get a test done. I think I should have the right to choose my own doctor - I've never come across anything like this before and I've always gotten along very well with the doctor when I'm allowed to choose.

So,I don't know what's going to happen now. With some very pointed conversation, I was finally able to get another appointment with this clinic on 24 August. Maybe she'll make more promises she won't keep or maybe she'll actually get me prepared for transplant, I don't know. But I do know that this is the worst part of having a chronic disease. The constant pain is not fun, neither is the extreme fatigue, the nausea, the headaches, the incessant itching, the bloated abdomen that make suit difficult to get a deep breath sometimes, the edema, the mental confusion. None of those are "fun". But worse is the suffering from all the symptoms and then, when trying to get medical care, having all of my autonomy taken from me, be made vulnerable to the whims of people who don't know me and have no reason to even care how I'm feeling and to be treated with disrespect - all because that is their "protocol". To be honest, it's the worst part of being sick. 😦

5/19/17

It's official - approved and eviction

I was officially approved by the transplant committee to be an excellent candidate for live donor transplant contingent upon my current kidneys being removed.

Sorry guys, you have your eviction notice

So the next step is to pray even harder for someone to come forward who is a match for me! They are coordinating with the surgeon, operating room, another surgeon, nephrologist and some others but I should soon have a date for a bilateral (meaning both kidneys)  nephrectomy.

Won't that leave you with no kidneys? You can do that?! 

Yes, that means that I will have no kidneys and my life as I know it will change drastically. Travel will be a huge challenge, as I will need to immediately start dialysis. I'll have a catheter in my chest which is a huge risk for serious infection.  I won't be able to go swimming, which I absolutely love to do :(.  But I'll hopefully have no more pain, which blankets me all day/every day now. And maybe I'll feel less crowded and will be able to eat full meals.

Who can be a living donor for me? Some of the the most common are:

  • male or female, it does not matter
  • Race, ethnicity and origin does not matter either 
  • 18yr - 65yr (the upper age limit is a guideline, not a strict cut-off) 
  • Be relatively healthy (no diabetes, heart disease, cancers now or previously) 
This is not a complete list. For that you'd need to visit Living donor criteria.  If you're not sure, please feel free to call the OSU Transplant Center at 1.800.293.8965 option 3 and option 3 again for Kelly N. and ask them, they'll be happy to help you. 

Thank you all for your prayers, words of encouragement, good thoughts and support! 

5/17/17

Kelly's Story

Kelly's Story

Kelly is a 49-year-old wife and mother of 6 incredible children.  She and her husband, Steve, have been married for 20+ years and live in Worthington, Ohio.  Kelly is suffering from a genetic kidney disorder called PKD and recently her medical team decided that the time has come for transplant, the only "cure" for PKD.

Kelly was formally diagnosed with a genetic kidney disease called Autosomal Dominant Polycystic Kidney Disease, (PKD) in 2001, but suffered with symptoms of it as long as she can remember.  Kelly's dad also had the disease (like father like daughter) and had a cadaver transplant at newly formed (at the time) transplant clinic at The Ohio State University Medical Center in Columbus Ohio. Ironically, he was the same age as she is now, 49. However, he had been on hemodialysis for several years prior to the transplant. Hemodialysis is really tough on the body, so he was already very weak when he finally got to "the call" that there was a kidney for him.

Kelly was a teenager at that time, in her senior year in high school and planning for college in the fall so she doesn't remember very much about when he had the transplant. He also was very private about his illness and preferred to hide most of the details from his children.  Kelly dad was an only child, doted upon by his mom. Kelly and her grandma accompanied her dad three times a week to dialysis, which was 1 hour away, 4 hours in the dialysis chair and another hour back home. When he received the call that a kidney was available for him, he was rushed to Ohio State University Medical center where he received one of the first kidney transplants at the center.  In the 10 years that followed, he suffered with chronic rejection, some type of fungal infection unique to transplant patients, required and had a double hip replacement and was generally unwell until his death on July 3, 1993. Almost exactly a month before Kelly would give birth to his first grandson.

As you can imagine, when Kelly found out that she had PKD, she remembered her father's long and arduous battle with dialysis, transplant and rejection and was afraid of suffering the same. She was only 34 when diagnosed. Though she remembers many years as a child being doubled over in pain with what felt like a "stitch" in her side and many bouts with pyelonephritis, she was never told that PKD was genetic.  In fact, Kelly has 3 sisters and her dad, probably trying to protect his little girls, told them that what he had could only be passed down to boys.  And that worked - until her little brother was born.

Kelly lived many active years raising her young children and the many foster children she and her husband brought into their home. Everything came to a halt in May 2007 when she was home with their then 6 yr old son and suddenly felt like she needed to lie down immediately. She felt very weak and found she had a temperature of 103F.  This turned into a week in the hospital with an IV full of strong antibiotics and morphine, diagnosed with acute pyelonephritis.

The years that followed included dozens of hospitalizations, MRI's, CT scans, pyelograms, ultrasounds, three long months of sclerotherapy, the development of life-threatening antibiotic allergies, pain medications - a wholly negative and discouraging experience.  As you can imagine, this has been very difficult for Kelly's children, her husband, her family and friends and....Kelly.

Kelly knows she has a lot of trying times ahead: finally realizing and accepting that her kidneys have failed, dialysis and the dreaded awkward discussions with people asking them to consider being a living organ donor for her and God willing, a kidney transplant. Kelly says her Catholic faith has allowed her to offer up her uncertainty of her future to the glory of God.  "My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9)

The plan is a preemptive live donor transplant but first, Kelly will be having both kidneys removed and placed on, what we hope is temporary dialysis.  If a match is found quickly enough, she could avoid dialysis (at least, not be on dialysis for long). She has already been approved for transplant at the Ohio State UniversityComprehensive Organ Transplant Center.  She says with God's grace, a match will be found and two lives will be changed forever.


If you'd like find out more about becoming a living donor for Kelly, please call the OSU Comprehensive Transplant Center at 800-293-8965 and choose option 3 and option 3 again.  Let them know you're calling to be assessed to be a living donor for Kelly N. and they will send a donor packet out to you right away.

5/12/17

Questions and Answers

Thank you for visiting Kelly's Kidneys.  If you are here because you read about Kelly in a newsletter, bulletin, website, Facebook or somewhere else, welcome! This page is an ever growing list (updated as they come in) of questions that surround Kelly's disease and how to help.

What is actually wrong with Kelly's kidneys?
Kelly is suffering from Polycystic Kidney Disease (PKD), a genetic disease where cysts grow on her kidneys and eventually overtake their capacity to filter her blood.  PKD is also a painful disease so both kidneys will be removed in the very near future, leaving her to face dialysis until a donor is found.  A new kidney would give her the chance at living a long, healthy life with her husband of 20+ years and their 6 children (as well as continuing as the church secretary at St. Michael in Worthington).

Is Kelly on "The List" (what people refer to as the organ transplant waiting list)
Kelly has been approved for organ transplant at The Ohio State University Medical Center and is on the kidney transplant list there.  However, the wait for an organ from a deceased person is 7+ years.  During this time, Kelly would be forced to be on dialysis, which would allow her to live, but, depending on several things, could very likely require her to spend 3 nights a week at a dialysis center for 4 hours each time, after working a full-time job.  This is hard on the body and the soul as hemodialysis often makes the patients extremely tired, unable to eat and requires an enormous amount of time away from her family.

How could I help?

Would you consider "sharing a spare" and being a living donor for Kelly? A kidney from a living donor greatly increases her survivability rate and greatly lowers the chance of rejection.  

Isn't that expensive?
There is no cost to the donor, all expenses are covered 100% and this even includes travel & accommodation expenses for out of town donors through grants made possible by several organizations, including Living Donor Assistance.

Who can be a donor?
Anyone between the ages of at least 18 and around 65 can be a living donor.  You should be in relatively good health, meaning that you don't have diabetes, cancer (past or present), if you have high blood pressure it is controlled, are mentally sound and have no communicable systemic diseases like HIV, Hepatitis, etc.  You can get more information by contacting the OSU Transplant center OSU Living Donor Program or call them at 800-293-8965

Can someone live with only one kidney?

Yes - many people are born with a single kidney and never know it.  When you donate a kidney, both you and the recipient can live long, healthy lives with just one kidney.

Does a kidney donor have to take medication for the rest of their lives?  Can they no longer drink alcohol?

No, a kidney donor does not have to take any medication that is in relation to the donation.  And there is no restriction on drinking alcohol in the future.

Is there a huge scar?  Will I miss a lot of work?  How long will I have to be in the hospital?

The typical donor nephrectomy  has a few very small incisions because it's done laparoscopically Most people say after 6 months, it's barely visible and after a year, you can't even tell.  The typical hospital stay is just 2 days and you'll be able to drive after just 2 weeks.  If you have an office type job, you can be back to work in 3 weeks.  Many employers support this altruistic act by allowing their employees to work from home, shorter work days as they recover, paid time off, FMLA, etc.  

If I call to get information, will Kelly know?

No - everything regarding the transplant and potential donors is kept strictly confidential.  The only information the transplant center gives Kelly is that "people" have been calling in on her behalf.  She will never know who called, who is tested, who changed their minds, anything about any potential donors health, etc.  In fact, she does not learn that there is a potential donor until long after the donor has made the decision, been tested and approved and has agreed to let her know.  You can decide at the very last moment to change your mind, though most people don't when they get that far.

Can I donate if I'm a man, a different race/ethnicity, different blood type, etc?

Organ donation sees no gender, no race, no religion.  Donations between donors of one blood type and recipients of another blood type are done on a case-by-case basis and depend on a number of other factors.

If I'm not a match for Kelly, how can I help?

If you're not a match due to blood type or antibodies but still want to donate, you can still help!  How?  Let's say that there are two patients needing a kidney:  Kelly and Andrew.  Kelly's friend David wants to donate to Kelly, but he's not a match for her.  Andrew's friend Matthew wants to donate to Andrew but he's not a match for him. But....Matthew is a match for Kelly and David is a match for Andrew - so Kelly and Andrew trade donors and they both get a kidney!  This incredible act of kindness has resulted in chains of up to 70+ transplants being done in the span of a few days - all because people were willing to share their spare to anyone in need to benefit their friend or loved one.  Confused? Don't worry, the folks at the transplant center can explain it a lot better (though maybe not as colorful) and also let you know about some other ways you can help.

My health is not that great or I'm disqualified for some other reason - but I still want to help, what can I do?

The best thing you can do is spread the word about Kelly!  Share her website, ask her for some cards to hand out to people, spread her email address (kellyskidneys@gmail.com) , post it in your church bulletin, newsletter, send it out to your email groups, share it on Facebook, Twitter, Instagram - just get the word out!



OSU Medical Center logo


If you have any other questions, please leave them in the comments below, or call the Ohio State University Comprehensive Transplant Center at 800-293-8965 and choose option 3, then choose option 3 again and let them know you want to be assessed to be a donor for Kelly N.  They'll send out an assessment packet right away.


If you have other questions, or just want to see how Kelly is doing, please feel free to contact her husband and donor champion, Steve N. kellyskidneys@gmail.com or click the images below to be connected via social media:

     
For more information about Polycystic Kidney Disease (PKD)


PKD Foundation

The National Kidney Foundation

National Institute of Diabetes and Digestive and Kidney Diseases

And on and on and on and on

Every day, someone asks me how I'm doing and have "they" found a match yet.  It truly is a blessing to have so many people car...