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Thursday, September 10, 2015

A New Kidney!

Hello to all my loved ones,

By now I know you've all heard my great news!  Last Tuesday, September 1, very unexpectedly, I got a call that a kidney had been found for me!

I couldn't believe it!  It was 9 o'clock at night, I had just arrived home at 8 after dialysis, made dinner, and sat down, when the phone rang.  I was on my second week back at work and excited to be back to teaching.  I also just had surgery 2 weeks prior on August 13 to place a new dialysis catheter in my abdomen and was wrapping my mind around switching from in center hemodialysis to home peritoneal dialysis, which would require 4 treatments every day.  That very day, my supplies were delivered - a month's supply of dialysis supplies came in about 50 boxes stacked in front of my garage.  My friend Helen came over that day and helped me move about 20 of them into my house.  After dinner that night, Jeremiah was going to bring the rest in, but after a busy day at work wanted to sit down for a minute and check the Giants game.  

Then the phone call came!  

I was in complete shock.  As you know, last time I got a kidney, I waited over 8 years.  My antibody level is as high as it could be - 100%, which makes finding a match extremely difficult and so far no one, not even close family members, were panning out.  I don't want to say I had given up hope, but it just seemed so unlikely and I was definitely exploring other options.  

I checked out a program to lower antibodies in order to receive a kidney from Kelly, Lisa, or Dan down at Cedars Sinai in LA.  But that was moving slower than expected and timing just didn't seem right.  Then I started checking out Stem Cell therapy down in La Jolla and in Thailand.  It seemed promising.  But I was also really working on healing my kidney through detoxing, nutrition, and meditation after I discovered that kidney regeneration is actually possible.  I planned to go to a meditation retreat weekend in late September and wanted to give that a try before I went the stem cell route.

Then the phone call came!

And now I am off dialysis, I do not have to limit my daily fluid intake, and I am off the very restricted diet that was required on dialysis.  Avocados, chocolate, cheese, mangos, tomatoes...  I have missed you!  I am so incredibly grateful to have been given yet another chance at a good life!

So now I'm off work for the next 6 weeks or so, recovering and feeling pretty darn good already albeit sore from surgery.

The past year has been pretty difficult.  Having my previous transplant decline and fail, starting dialysis, etc.  I had 5 surgeries in the last 8 months.  During that time, I have spent countless hours researching options to recover my health.  I have learned a ton.

One of the most important things I have learned, after so many years of wondering and seeking the answer, is why and how my kidney disease started.  I mean, I come from healthy stock.  It's not genetic.  Docs have always told me that it "just developed".  I am now the wiser and I want to share with you this information.

I know many of you are my friends on Facebook and have seen the many vaccine postings by my sister Bonnie and me.  We have both spent countless hours learning about the true dangers, risk/ benefit, history, and science of vaccinations.  We've also noticed that not many of you interact with our posts.  I'm not sure if it is just a difference of opinion and not wanting to create conflict, or what, but...  many of you have young children and I just want you all to be aware.  I don't want to push anti-vaccine warnings down your throat, but I do hope that you will do more research and find out for yourself this very important info.

I am absolutely positive that my kidney disease was caused by vaccines.  There are peer reviewed studies to prove it.  Vaccines have many other harmful effects.  The push for mandatory vaccination in California is, in my humble opinion, the scariest thing to happen to this country and the propaganda pushing mainstream media is gets over 70% of it's ad revenue from pharmaceutical companies - cue the Viagra commercials.

I ask you to please take just a few minutes to listen to Dr. Suzanne Humphries speak.  It is an 11 minute video, with a 12 minute part 2.  She is an MD, and a nephrologist, and she explains the connection between vaccines and kidney failure.  She has many videos on youtube that are great and I recommend also checking out if you want to know more.  




Also, Bonnie and I would love to talk with you about what we've learned and hope that you will come to us if you want to discuss.  

Please educate yourself so that you can make a fully informed decision if you decide to vaccinate.  And please, support vaccine choice in California. Vaccinations are not a one size fits all cure all to disease and devastation.  Many times, they can cause devastation and more often than you think, they do.  We were given amazing immune systems that with the right nutrition and lifestyle, will overcome most sicknesses without issue.

With all my love and best intentions.

In health,

Erin



P.S.  Please feel free to forward this to anyone else you'd like. Help me get the word out there.  Please and thank you and I love you.  :)

Wednesday, September 2, 2015

It's a Miracle

Anyone reading this has already learned from Facebook that today the totally unexpected happened. Erin got a kidney from UCSF and the national cadaver waiting list. Last night when the call came in, we literally went into shock. This was not a possibility that seemed... possible.  After her antibody level shot up to 100% in February following a surgery, we were told that it would be extremely difficult to find a suitable match for Erin and could take 8-10 years or may never happen. The odds were as close to zero as it could get. Or so it seemed.

There were options being explored. She and our dad went down to Cedars Sinai hospital in L.A. to find out about their antibody-lowering IVIG therapy, which at first seemed promising and then sputtered to a snail's pace. And then about a month ago, my mother-in-law shared a link with Erin about stem cell therapy being used to rejuvenate kidneys. She called the clinic. She was ecstatic. One of her original kidneys made a little pee last week, confirming her hope that it could be rejuvenated. We started a fundraiser for stem cell therapy. We were blown away by the generosity of our friends, family, and even strangers. Thank you all, so profoundly. I feel now that your kindness and hope and belief in the miracle that we were pursuing actually helped bring this miracle into reality. And those of you who contributed with prayers, vibes, intention, love, meals, friendship, smiles, hugs, and being there. Thank you. You are all a part of this. I don't know how or why we are so fortunate, but this my friends, feels truly like a gift from God and a miracle.

Erin has appreciated natural health for a good long time. She has studied herbalism and massage therapy. She's an excellent cook with a connection to organic farming and food as medicine. She's my go-to for home remedy advice. And she also lives in connection with a spiritual part of life. Yoga, meditation, prayer. Awareness, gratitude, compassion. And she has incorporated hypnosis as a part of her self care. In her hypnosis sessions, a mantra she focused on was, "Miracles happen every single day." It's a thought we've shared before on this blog. You can see it came up in Erin's last post. She said just a few weeks ago, "I do believe in miracles and they happen every day."

And today, a miracle happened. It feels strange to admit that we never thought this would happen. It seems like anyone clinging to hope for Erin would have clung to this hope. But we didn't. I didn't. I had written this possibility off. It seemed so far fetched that the national cadaver waiting list could bring a match in her situation. We really believed a living relative was the best hope (which is what we were told). And we had many relatives and loved ones and even strangers step forward. And you gave us hope. You filled us up with love. We felt your compassion and your desire to help. Thank you.

It's literally shocking to realize that while we tried to keep our attention on the reality of miracles and the power of intention, we left this possibility out. We never said, "well, maybe the cadaver list will work out." I suppose that's because there was nothing we could do to bring it into fruition.

And while today is a beautiful day for us, it's also a very sad day for someone else. Erin's kidney did come from the national cadaver waiting list. From a 29 year old in Texas. Pause now and just feel that. It's a tragedy. We are so sad for that person who left this world so young. And for their family. And it is completely humbling and awe-inspiring that they cared enough about other people to be a registered organ donor. This young person who died had a little dot on the back of their driver's license. And that tiny act of compassion has changed something terribly sad in Texas into something amazingly beautiful in California, in a miraculous exchange of life. Modern medicine may have it's pitfalls, but what happened today for Erin is a very good example of it's greatest accomplishments. And also a great testament to the human spirit. We are so thankful.

I'm so, so tired. This is all I can manage for tonight. Goodnight, dear friends. We love you.


Friday, August 21, 2015

New outlook and a new look!



Hi everyone,

It's been a long time since I've made any blog entries.  A lot has transpired since my last post in April.
Last I posted, I had just gone to Cedars Sinai and was excited with the prospect of their treatment to lower my antibodies in order to allow me to receive a kidney from one of my generous donors, who are my cousins Kelly Greenwood and Lisa Blanc, and my brother Daniel Saunders.

Although the treatment seems promising, the process was moving slower than I'd hoped.  Patience is a virtue I need some work on, apparently.  However, I've learned in my life that it's important to remain in the moment and allow the path to lead you in the correct direction.  You cannot force anything to happen.


My family and I had an awesome summer vacation.  We went to the beach, saw friends and family, went to a Giants game, went back country camping in Pt. Reyes, took two amazing road trips - one to Sedona, Grand Canyon, Zion, Cedar Breaks, and Yosemite, and one to Seattle via Ashland, Eugene Portland, and back through Bend. Super fun times and we made great memories.

 After we returned from our trips, I prepared to go in for my fourth surgery this year.  My hemodialysis catheter that I've had since December 27 is starting to have problems due to clotting.I've decided that I am going to try Peritoneal dialysis and I had the surgery to place the new catheter in my abdomen.  Peritoneal dialysis will allow me to do my own dialysis at home instead of going to the center 3 days a week.  I will have
to do it every day, however, but I'm hoping that I will be able to do it at night in the near future.  For now, I am still on hemo 3 days per week, while my pd catheter is healing.  Then I will be doing CAPD, or continuous ambulatory peritoneal dialysis, which must be administered 4 times per day and takes around 40 minutes each time.  It will be a lot of work to learn all that's required, but I'm sure I can handle it.  I am attending trainings for the next two weeks to get the process down.  Six days a week I either have a three hour dialysis or a three hour dialysis training for the next few weeks.


All this and on Monday I am going back to work part time at my job.  I am hoping that I'll be able to juggle it all.  It's not ideal to be in the learning phase of PD and returning to work at the same time, but unfortunately, though I had my initial surgery scheduled in June, it was rescheduled in August by the surgeon who had to cancel last minute.

After searching for a kidney donor for so long and having so many generous offers, and then running into wall after wall, I've finally arrived at a place where I feel that the best thing for me now is to stabilize and normalize my life.  I'm hoping that PD and going back to work will help me achieve that goal.

I continue to work on my health diligently, with weekly hypnotherapy, diet, supplements, walking, staying positive, etc.  My current visualizations are of my little right kidney, growing and regenerating.  After 27 years of having kidney disease, I am for the first time off of all the medication, such as steroids and immunosuppressives that I took to prevent kidney transplant rejection.  Also, I had always been told that kidney disease was irreversible.  Amazingly, however, just last year, new studies proved that kidney regeneration is possible!

Now I have a new goal!  I am working daily on regenerating my kidney.  The protocol I'm following calls for detoxing from drugs and other toxins, increasing proper nutrition, and cell building supplementation.  If you can imagine or visualize my right kidney shedding it's scar tissue and disease, and allowing new nephrons to regenerate, and my kidney growing and becoming active and healthy again, making urine, please take a moment to see this into reality with me.  I do believe in miracles and they happen everyday.  Please and thank you and I love you!

Also, I recently found out about a medical group in La Jolla that is doing stem cell therapy and seeing much improvement in Chronic Kidney Disease patients.  It is called the Regenerative Medical Group and so far they have had impressive results, with 100% of their patients improving their health goals.  I have inquired about it and am seriously considering doing it.  For years I have dreamed of a better therapy.  Dialysis is very cumbersome and painful and can have many side effects.  Transplants have their share of issues, many required drugs, long wait times, and a need for a donor kidney.  They are better than dialysis but they are no cure.  The stem cell therapy, from amniotic stem cells (not embryonic which are aborted fetuses), sparks a regeneration of new kidney cells.  Check out their website here.

This new treatment is an opportunity of a lifetime.  If it works for me, I could be back to living a normal, healthy life within the next 6 months.  I wouldn't have to burden one of my cousins or my brother for one of their kidneys, I wouldn't be waiting around on dialysis for a kidney transplant, which could take many years or even never come.  It is a chance to give me my life back.  Yes, I have to try.

This treatment is $8000 plus another $1000 for transportation and lodging.  If you are interested in helping me realize this dream, I would be grateful for any and all donations to that cause.  I am adding a paypal link to this site.  Please and thank you and I love you!

With much love and gratitude for your love and support and caring...

Erin


Thursday, April 23, 2015

Questions, answers, and HOPE!

Hi everyone!  I hope this sunny April day is starting off well for you all!


Recently, I had an old friend from high school get in touch with me with a question - has everyone in your family been tested and no one is a match?  Another person asked why it's been so difficult to find a match?  Today, I want to address those questions as well as explain some new encouraging developments.

I am very fortunate, and I mean extremely fortunate and grateful and humbled by the fact that I've had many people come forward for me to be tested as my kidney donor.  It's awe-inspiring, really, that so many people, friends, family, loved ones, and perfect strangers have come forward in my life, through Facebook, and through this blog.  Absolutely amazing!  Some people cannot say this same thing and so for years they languish away on dialysis.  So far, either because for health reasons or for compatibility reasons, each potential donor has been turned away.  I have one donor (my cousin Kelly) who completed and passed all the testing.  All except the compatibility test.  And because of that, she and I are now listed on the paired donor exchange program list.  Unfortunately, there is not currently a matching pair for us, so it is a matter of waiting.  Meanwhile, UCSF is still testing other possible donors.

Due to the fact that I have had two past transplants as well as several blood transfusions over my many years as a kidney patient, I've developed antibodies known as "anti-human" antibodies.  These antibodies are what are causing the difficulty in finding my match.  They say that if a person has 80% antibodies, that they will experience acute rejection of 8 in 10 kidneys or 80% of the kidneys.  Well, in February, after my nephrectomy, I received the very scary and discouraging news that my PRA, or panel reactive antibody level was at 100%.  I was devastated and began to feel despair.  This news of my PRA indicates that my chances of finding a matching kidney had been reduced to finding a needle in a haystack.

So...  I started looking for alternatives.  I was researching transplant centers with shorter wait times and also transplant centers that offer desensitization.  I found out that Cedars Sinai in Los Angeles offers a treatment protocol to help patients like me, who have living donors who are unfortunately otherwise incompatible.  I read that they have had good results with IVIG therapy in lowering PRA levels to make these transplants possible.  I decided I had to go and check it out for myself, but I was skeptical and very hesitant to get my hopes up.  I thought I would hear more of the same....  Wait.  The wait list is 9 years long.  It is nearly impossible to get a transplant.  

To my pleasant surprise, I found out that the desensitization protocol at CS has been very successful in helping patients like me get kidney transplants.  They've been doing it for over 10 years and have done hundreds of transplants for patients like me with good results.  In fact, 40% of the transplants they do each year involve the desensitization protocol.  

So, I've made up my mind and I must pursue it.  It is my best chance to get off dialysis in the near future.  It is entirely feasible that I could get a transplant from one of my living donors in a matter of 4 - 6 months.  It is all very exciting!  I have a few hoops to jump through before being accepted as a qualified candidate down there - a couple medical tests.  I am already making phone calls trying to get the ball rolling.

Also, I want to thank my dad for taking me down to Cedars yesterday.  He was instrumental in getting everything arranged for a smooth trip.  I also want to thank Karen Duze for picking us up from the airport, making sure we found our destination, taking us for a delicious dinner, and coming back the next day to take us back to the airport.  Thanks to you two I am now on my way to a kidney transplant and restored health.  I love you!

And thank you all for continuing to keep me in your prayers.  I am grateful to you all.  Thank you!



Picture taken on Easter Sunday 2015

Friday, March 20, 2015

THERE IS HOPE

Hello World,

Friends, Family, and Everyone,

It's been difficult for Erin or I to find the words or the motivation to make a post on the blog. Since Erin's surgery in February, we've actually taken some hard hits here at Team Erin. Prior to the surgery, her transplant coordinators told her she was looking good for a transplant with Kelly in the exchange program within a few months. Plus we had my friend Jill on the way from England who looked like she might be a good match for a direct transplant to Erin. Unfortunately, when Kelly and Erin were entered into the exchange database, they did not yield any matching pairs. And sadly, my friend Jill is not a match and is unable to enter the exchange program.

And while Erin was still in the hospital, she received a devastating blow. Her coordinator, Janine, came to her hospital room and explained that her antibody level had spiked up to 100%. This is the worst thing that someone in need of a kidney transplant can hear. It means that Erin's immune system is hyper sensitive and it will be very challenging to find a compatible donor for her. It feels like we're paddling across the ocean on an inflatable raft without an oar. 

Erin came home from the surgery with a lot of pain. Thankfully, that has subsided. She was able to drive to the East Bay to visit with Noel and Cara and I on Thursday. It was so great, the kids loved seeing her, and this morning my 21 month old said at breakfast, "A-A Eri (Auntie Erin) come last time. Gone. A-A Eri come back." 

What we have to focus on now is the fact that "very challenging" does not actually mean impossible. There is hope.

We are learning about cutting edge treatment options to lower Erin's anti-body level. Cedar-Sinai hospital in Los Angeles is the premier hospital for this treatment (IVIG therapy) and she has completed initial steps to get an appointment there. We have read a promising study which shows that of 5 people with 100% PRA antibody level like Erin, two of them were able to receive a transplant within 4 months of beginning IVIG, one within 8 months, and all of them within two years in combination with the paired exchange program.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564056/ 

Dialysis has been tough on Erin. It is exhausting and leaves her feeling very depleted and drained. In between treatments she is starting to feel better - healed from surgery and blood count rising! Yay! But, she hasn't been able to return to work and all the time spent waiting and wondering when we will find her miracle feels like a never ending limbo. It's hard to be patient. Dialysis stinks. It hurts. It zaps the life out of you. It is depressing. It is not a way to live. It buys time for some people, and for many others, sadly it just postpones their death.  (The average life expectancy on dialysis is 5 - 10 years.)  However, with all of this undesirable, stressful, worrisome yuck happening in our lives, I keep my attention on what is desirable: ERIN!!!!!  Erin is awesome. She's fun, she's uplifting, she's supportive, she's a great listener, she's really silly, she loves to dance and cook and take walks and tend gardens, and tickle kids and teach them great things. She loves life and going places and visiting beaches and people. She loves art and music and dancing. She brings a genuine zest for living wherever she goes and it's contagious. She shines a beautiful light in the world, in our family, and pours it so lovingly on the children. I love Erin.

And all I want to do is help her. Help make this miracle happen. Help connect the pieces. Find the right person who wants to share life with Erin and also happens to be her perfect match (or yields a matching pair in the exchange program). I want Erin to live a healthy life. Because Erin is my sister. Our sister. You know this girl, she is all about the sisterhood and brotherhood!

So, stop cryin' and spread the frikkin' word!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Siblings and cousins are the best options, but friends and strangers could be the perfect match too. I cannot donate, Sarah is not a match, and Dan is still unknown. So we humbly encourage our cousins and friends who are healthy with Type O blood to fill out the online health evaluation form (link at right) and follow up by calling Helen (at right). You can request the Buccal Swab test which can be completed in minutes from your home. You simply scrape a swab on the inside of your cheek and mail it back to the hospital, and it can tell them whether or not there is a chance you might be a match for Erin. And if you are not a match for Erin, you can still help in a very powerful way. UCSF says that the more donors we have who are willing to enter the exchange program, the better Erin's odds. I'm sure you have questions. Please don't hesitate to call me, Erin, or Helen at UCSF.

With all our love and gratitude,
Bonnie & Erin (and all the people who love Erin)


p.s. Many people who have donated their kidney have wonderful feelings of accomplishment afterwards, and say it is the best thing they have ever done in their lives. It takes courage and compassion and we understand not everyone can do it. Thank you for your love and support and for considering this selfless act. Words cannot describe our profound gratitude.

KEEP HOPE ALIVE!










Monday, January 12, 2015

Ten Days

Hello Friends, Family, and Everyone,

First of all, thank you so much for the meals, the visits, the calls, the emails, the messages, the haircut, the shampoos, the care and all the LOVE. Erin and I, and our family, have really been feeling so blessed to be surrounded by such an exceptional and beautiful community of kind and caring individuals. We have been feeling very hopeful for a transplant match to manifest, and every day we keep our attention on bringing this possibility into reality. We envision a future that includes Erin living to her fullest potential. After all, miracles do happen, every day. And the gift of living kidney donation is certainly one of them.

We know of seven people who have stepped forward and completed the form, and suspect there may be more. Several of you inspirational folks have never even (or barely ever) met Erin. Others have been family friends for decades. Your interest and willingness in donating a part of your body to restore Erin's health is just so moving. I literally have goosebumps all over my head and arms just thinking about your kindness. You are Erin's Angels.

But, before we can get the transplant, we've got one itty bitty major obstacle to overcome. In ten days, on January 22, Erin will have surgery to remove the large, football size mass in her abdomen. This is necessary as it blocks the area for her new kidney. She met with her surgeon last Wednesday, and came away from the meeting feeling ready and hopeful, as he instilled much confidence in her.

At this time, we ask everyone to put positive attention and prayers toward Erin's upcoming surgery. That it may be easily and successfully performed by her skilled and experienced surgical team. And that her body will heal rapidly and soon be ready to receive her new, beautiful, healthy pink kidney that is finding it's way to her right now. We are grateful that Erin is receiving excellent care by extremely talented, practiced, and caring physicians and medical staff. We envision this team performing her surgery with expertise, precision, and great care. We are thankful this obstacle will soon be removed, opening the doorway to Erin's future health.

With love & gratitude,
Bonnie, Erin & The Saunders/Siem Family




Monday, January 5, 2015

A First-Hand Account of the Evaluation Process

(This post was written by Erin's cousin, Kelly.)

When I first learned that my cousin, Erin, was in need of a kidney, I knew I would go though the process to see if I was a match for her. The thought of donating a part of my body to someone I love was both a no-brainer and terrifying. I knew I wanted to do what I could to support Erin's health, but there were also so many questions I had about my part...what if I (or my child/husband/sibling/parent/etc.) need a kidney later in life; what if something happens during surgery; would I be able to care for my son while healing; could I afford to miss so much work? Despite all of my questions, I went through with the testing. I knew that no matter what the test results said, I could make/change my decision at any time. 

UCSF made the preliminary process extremely easy for me. It started with an online questionnaire...super easy, 5 minutes or so to fill out. After that, they contacted me for a phone interview (this took a few rounds of phone tag, and I don't believe they would have called me after their initial call had I not called them each time). Again, this included simple questions and took about 15 minutes. At the end of this interview, I had a packet of blood testing information, a 24 hour urine sample kit and a stool sample kit coming in the mail. Within days I was ready to test. The blood tests are at a local facility contracted by UCSF and the stool/urine are in the comfort of home (thank god!). The 24 hour urine was the most time consuming test (as you can imagine), but no big deal. Within one weekend I had completed all of the preliminary tests without leaving Napa (and with zero cost accrued). Completing the testing panel, although it seemed overwhelming when the packet came, was relatively simple and quick. And put me one step closer to donating. 

About a week later, all of the test results came in and I was cleared for the next step: an appointment filled day at UCSF hospital. Despite being an hour from the hospital, I did have to take a day off for this (I learned at this appointment that if I had incurred any costs I needed support with, there are funds to support donors (in ways I never imagined)...the funds can provide money for lost income, transportation, road tolls, hotel stay the night before, etc.). My appointments that day included a meeting with a social worker, a full physical, a CT angiogram, an EKG, a chest x-ray and more blood work. While this sounds like an overwhelming list, the team made it relatively simple. I was in and out of the facility in 4 hours. 

A very helpful part of the UCSF day was information gathering...I can say that at the end of this work-up I felt 100% sure about donating. I had all of my concerns and questions answered, and knew that if the opportunity arose I would donate to Erin no matter what it looked like (directly or through a match program). This work-up was also a unique opportunity to see how my body was functioning through an intense panel of tests. 

One aspect of the work-up was the blood work to see if my blood was a match with Erin's blood...this is the only test that came back with undesirable results...I was deemed healthy enough to donate, but because our blood was not a match I could not donate directly to Erin. Although we can (and will!) enter a database for a donor match program, it could be months or years before we find a compatible match. 

The best case scenario now would be that while we are in the match program, more people will come forward to test as a direct match for Erin...if a direct match is found, the transplant can take place right away, getting Erin off of dialysis and moving toward health. 

I wrote this for those of you considering the process to see how simple it can be for the donor...taking a small amount of time to do testing could lead to a long life and great health for a beautiful young woman. Please, if you are considering donating and have ANY questions, contact me. I am open to talking you though the process, answering any questions, whatever you need. 

If there are concerns about funds and time off, I encourage you to look into the Michelle Mayken Memorial Donation Protection Act. This CA bill requires employers to provide 30 days of paid leave in the event of an employee donating an organ...this was a huge relief for me when considering donating. 

Much love,
Kelly (Erin's cousin)
Kgreenwood@yahoo.com