Reflections on the Present as a Gift

 Morgan was approved for donation!  He is willing, ready, and waiting to go into surgery!  In mid-November we received this amazing news with the UNC staff saying "we'll call you asap to schedule the transplant."  Since then everyday gone by has been filled with anticipation and anxiety.  By the first week of December we began to wonder...  is it still possible for the transplant to happen before the end of the year?  Finally  we were told:  for Patrick and Morgan, it will most likely be February before the transplant can be scheduled.   This gives us time to reflect on all of the changes of the past year, to appreciate those we love, and to honor the season of giving. 

Looking back on the past sixteen months, well it really seems like a surreal blur of experiences beginning with Patrick's first trip to the hospital.  The symptoms... the laundry list of medications...  legal and financial documents... all of this as the kind of day-to-day management of the disease.  Mentally the challenge has been to stay informed of the developments and weigh options... ... understanding Patrick's specific diagnosis and prognosis...  the how-to's of dialysis treatment...  who is the best donor candidate...  these are the kinds of questions that have seemed unending....  each answer posing another question.  The emotional aspect has been most surreal for Patrick and for our family.... the fear that was felt upon first hearing the words "organ failure"...  the pain of coping with limitations in ability and lifestyle at such a young age...   questioning why this had to happen.  Of course these feelings are shared my many millions of people who experience chronic and terminal illnesses, and when it happens to you, a changed perspective on life is found.  We have a renewed appreciation for loved ones, and want to send a message to you all that friendship, family and love make life precious.  All of the love, kindness and support that we have received are blessings beyond words.  This holiday season we hold them dear in our hearts.
~Kate

This year has been a wonder. Strange to think that, but looking closer I have learned this, life is more than we can handle. We all need help from time to time. In my case, I would not be able to live with out the help of medical staff. Further, the only way for me to regain my health is through the gift of another. This year i have been blessed by having first my sister and then a life long friend reach out to me with the MOST precious gift that they could offer. The gift means life. The gift is a piece of themselves. The miracle is that Morgan is the PERFECT match!!!!! The gift cannot come without risk to the donor. Morgan is giving of himself, putting himself in harm's way.  This year my friend has given me the best Christmas yet. Thanks to all who have expressed their love, given their prayers and thoughts.  I look forward to finding you in the new year and in a new way.
-Patrick

To acknowledge Morgan and all of the individuals who have made the selfless choice to give a life-saving kidney donation,  we have posted several links to stories and sites about altrusitic donation.  In the past decade, there have been over one hundred anonomous living kidney donors, who have undergone transplant surgery so that one of their kidneys could save the life of stranger.  It seems that most of the people who have donated altrusitically have done so because of a relationship with a loved one who suffered from kidney disease.  Over the past year we have discovered that many of the medical staff involved in renal health and dialysis clinics have also had personal experiences with kidney disease that have inspired them to work in the field.  We thank and honor all those who touch the lives of others in time of need, and give selflessly the gift of life. 

"Stranger's Gift Changes Four Lives"

"Give a Kidney- One's Enough"

"Living Kidney Donation Blog"

Life in Limbo

                                Fall 2009, Fayetteville WV

It's hard to believe this picture was taken over two years ago, and that it's been over one year since the kidney disease was first detected.  It's been a long road, and we hope that recovery period is getting closer for Patrick and for his potential donor, Morgan.

Morgan has been waiting since October 19 for test results to determine if he can be a donor candidate.  Mandatory procedures for all potential donors include extensive diagnostics including bloodwork, x-ray, ultrasound, MRI, EKG, etc.  The purpose is to determine if the potential donor is in perfect health.  If any health concerns are detected, the donation will not be permitted by the donor's medical team.

It's been a long 3 weeks waiting for results from Morgan's initial appointment.  The verdict is still out.  UNC has asked him to come back for further testing on November 21.   This is not bad news, it's also not the good news that we were all hoping for.  Morgan and Patrick are both anxious and feeling like their lives are on hold, full of unanswered questions and indefinite answers.

This means that Patrick will stay on dialysis at a clinic in Raleigh, until the time (if/when) the surgery can be scheduled.  He and Morgan are now living in Chapel Hill, just a couple of miles from the hospital, where they are getting settled and adjusting to life not just as roommates, but as a living donor team.  There is very little control that anyone can have in this situation, other than to be in tune with our bodies, minds and hearts, and take care and be gentle with ourselves, and each other.  And take it day by day. 

Hopefully by the beginning of December we will know if Patrick will be receiving Morgan's kidney.  This is such an awesome possibility, that Morgan is willing to step up to give the gift of life.  Please say prayers for both of them.  Whatever happens, we know that we have love and support from all of our friends and family.  with gratitude~

 

In a couple of weeks we'll know more....

Just a quick update to let everyone know some potentially very positive news...
 A dear friend of Patrick's from Raleigh has been tested, and he is a match for Patrick!  Their DNA is compatible, and they both have blood type O.  An appointment is scheduled for Oct 19 to determine if he is a healthy candidate.  The screenings include x-rays, ultra-sounds, MRI, EKG, psych eval and more.  If he is cleared after the results from all these tests come back, then the transplant could happen, possibly before the end of the year!  It is SUCH A BLESSING to have a friend who would make this sacrifice.  We could not be more grateful or more hopeful.  I will share info with you all as soon as we know more.
In the meantime, Patrick is still living in Raleigh, unable to transfer his dialysis treatments to Greensboro because of a Medicare policy.  This has been very frustrating for everyone, but now feels like a minor set-back as we are looking towards a more positive future outcome.
Thank you all for your support and love.
Peace be with you~

Changes

Hello again.  Thanks for taking the time to follow along with Patrick's progress.  We have some big changes to report.  First, Patrick and I have relocated to Greensboro, NC, where I am beginning a masters program at UNCG.  This puts us in a good location,  one hour from our parents and family in the Raleigh area, as well as the hospital in Chapel Hill where Patrick will receive a kidney transplant.  An exciting part of the transition is that soon he will begin a new type of dialysis, called peritoneal, which will allow him to have the treatments at home, rather than visiting the center for hours on end every other day.  This will give him a lot of relief day-to-day, and allow him to have a more "normal" life.  Living together is going to be very positive for both of us, rather than being four hours apart and only seeing each other occasionally.  Soon we will be feeling settled in, and hitting our stride as housemates for the first time since high school.

Additionally, there has been a breakthrough in the search for a donor.  Contrary to our former belief that, because our blood types are incompatible, I could not be considered as a donor, we have discovered that the transplant will be possible due to new  medical technology.  A "simple" DNA test (mixing our blood samples together in a test tube) has shown that he will be able to receive my organ without any considerable complications.  And though I have not yet been medically cleared to be kidney donor, we are very hopeful that all of my screenings and evaluations will determine that I am a good candidate for the operation.  Time will tell, and we will keep you posted on the progress.  Transplantation is a complicated field, and we are so grateful for the expert care that he is receiving from UNC.  Please keep us in your thoughts and prayers, and know that your support in invaluable to us at this time of transitioning, adjusting, and getting used to the idea of starting a "new life" as a donor/recipient team.   Love and blessings to all.  Yours, Kate

The Waiting Game

Hi folks!  I hope that you all are making the most of what summer has to offer- long days, fresh garden goodies, a vacation or two...  Time is absolutely flying by and it's hard to believe that the last post was over a month ago.  There haven't been any big changes yet-  Patrick is stable and growing stronger.  He is still receiving hemodialysis treatments three times a week, exercising, following a super-strict diet, and looking for a living kidney donor.  We are anticipating a move into a new home on August 1st, in Greensboro, NC.  Patrick and I, his sister Kate, will live together there while waiting for the transplant to happen.  Right now we have no way of knowing exactly when that will be.  I am being evaluated as a potential donor, and starting graduate school at UNCG- a double whammy!  The news was unexpected that I could be considered as a potential candidate for donation.  Doctors at UNC Renal Transplant Center told Patrick a couple of weeks ago that there are technologies and medications that will allow him to receive an organ from someone with a different blood type than his own (type O).  Before we learned this, the information that we were sharing was NOT ACCURATE.  Blood type is only one of many different types of matching that must take place, so someone with an incompatible blood type might still be a match on the rest of the criteria, and their kidney could be acceptable for donation.  This is great news for people who have considered getting tested, but are not type O.  Please share this information! 
The option of a swap, known as "paired donation" increases the likelihood of finding a matching kidney for Patrick.  And honestly, we want him to find the very best match out there, because that will give him the greatest chances of a successful transplant.  If you would like to get started with a consultation (completely confidential and absolutely no expenses) please call the Renal Transplant Coordinator at UNC, Ann Litts.  Her direct number is (919) 966-3079.
Please keep following an passing this blog along.  Patrick is creating a new website, as well as planning personal activities and public events to get sponsership from some outdoor gear companies.  He has ideas in terms of marketing his own cause and highlighting the needs of so many others who have shared the experience of acute renal failure.  So look for a new website and a few new articles by him to come out soon.
Take care everyone.  All the best~

Donor Coordinator Information

In May, Patrick visited me in Asheville and we took a day trip to Rumbling Bald, a rock climbing mecca near Lake Lure, NC.  He has been on previous climbing trips to the area, and though I have lived here for over a decade, I had never been to the cliff.  It was a beautiful day and we had a great time together walking, talking and checking out the rocks.  He plans to come back when he is stronger and do some serious climbing.

Last week I called UNC and spoke with the Renal Transplant Donor Coordinator, Anne Litts.  She can be reached directly at (919) 966-3079.  She seems more than willing to answer any questions that a potential donor might have, and upon request she can send you a Kidney Donor Patient Guide.  This is a handy little booklet that outlines in detail everything a donor needs to know to get started... including the process for finding out if the donor is a match to the recipient and the studies to determine medical eligibility (urine studies, chest x-ray. EKG, renal ultrasound, psychological evaluation, etc..)  The book also describes pre-op procedures, surgical risks, post-op care, and discharge instructions.  If you, or anyone you know, is considering becoming a living kidney donor, please call her to request info.  The donor coordinator's job is to protect the donor.  Everything is confidential.  And if you decide to begin the process, you retain the right to discontinue at any time.  We thank you for reading and for keeping Patrick in your hearts and prayers.  He just created a Facebook page, so check him out and add him as a friend request.  It turns out there are two Patrick Dunnagan's from Raleigh, NC.  Crazy!

looking for a match

To those of you making the time to read and consider the information about kidney transplant, THANKS.  Your support is invaluable at this time of feeling overwhelmed by a recent doctor's visit that confirmed Patrick's eligibility to receive a donated kidney.  Because the transplant will be largely paid for by Medicaid, the government required the specific diagnosis of “Chronic Renal Failure” to qualify Patrick for a transplant (kidneys at 0% function), meaning that his dialysis treatments will need to be permanent if he does not receive one.  It is my understanding from talking with one of his nurses that he will also be screened for general health, such as cancer and infections (due to the need for immune suppressant drugs post-transplant), before he is approved as a healthy candidate.  He is now in the process of a series of appointments to establish his profile to include the criteria that will be looked for in a match (bloodtype, tissue, and crossmatch).  To learn more about these types of matches, please read the American Association for Kidney Patient’s website.

A living organ is the best option for Patrick.  It would be stronger than a cadaveric, and means that he might not have to wait on a very long list for a donor.  Please read this information, consider the option to become a donor, and pass it on to others who might be in a position to do so.  The more people who are tested, the greater chance of finding a match.  This testing is completely confidential- it is NOT conducted by Patrick’s team of doctors and they will NOT know the results of your test unless you choose to tell them. The donor would have absolutely no expenses, all are covered by Patrick’s insurance and Medicaid.  The only expense, and biggest sacrifice, is a 6 week recovery period after surgery, during which the donor could not work or engage in other strenuous activity.  Family Medical Leave Act can help cover lost wages, yet this depends on employment status. 

Canidates must be at least 21.  There is no age limit for donating, however the best match would be someone in Patrick’s in age group (20s-50s).  Please be aware that only a healthy person will be able to give, and will be able to recover completely and live a normal active life with just one kidney, yet is required to have health insurance (for their own protection, should a pre-existing condition be found during screening).  Evaluations for the potential donor include kidney function, hypertension, cancer screening, dental, reproductive, psychological, etc.   A series of tests to find the acceptability for the organs to be a match (see the AAKP site) can be done at any nephrology clinic that is willing to cooperate.  UNC, where Patrick is a patient, has an excellent facility, and a Donor Coordinator there will help find centers in other locations, states, and even countries.  We will be gathering more information on how this process works.  For now, please contact me directly at katedunnagan@gmail.com if you have specific questions, or call the Kidney Clinic at UNC.   

Patrick requires an organ donor with type O blood only (positive or negative).  However, anyone can let the coordinator know if they are interested in being added to a donor directory to find a match for Patrick elsewhere and essentially ‘swap’ organs with another chronic renal failure patient.  By getting tested and joining the directory, although my blood type is not O, I could still be a match for a recipient with a loved one/willing donor whose blood type is O, and we could then switch the donor action so that Patrick and the other patient both receive the organ that they need.  This could be a really good option for him.  Imagine how much the chances of finding a match could increase!  His next appointment is June 15, and by that time information will be available for people who would like to be tested.  If you would like to contact the UNC Kidney Center yourself, anonymously, please view the UNC website.

April Advances

Greetings- thanks for keeping up with the latest for Patrick's kidney page.  Please check back mid-June to read about the results from his upcoming appointment at UNC.... they are going to start testing his DNA, etc, to determine the specifics for finding a match from a donor.  Until then, he needs to concentrate on getting as healthy as possible, and it is challenging to stay on that strict CKD diet. Dialysis is keeping him stable, but his kidney function is not improving at all, according to blood and urine tests.  After training to be a lunch-time host at Tripps, he had to quit because working at a restaurant turned out to be too demanding.  His energy is really drained during dialysis treatments.
Thanks to you all for your support.  All of the encouragement has been invaluable to Patrick and to us as a family.  We'll keep you informed as we know more. 
PS- Patrick celebrates his 26th birthday on April 25.  Give him a shout if you can!
Peace, love, and gratitude.

Kidney Transplants in the news

This experience, becoming aware of how many people require a new kidney, has been shocking and incredibly eye-opening.  There are about 110,000 people in the U.S. on the national waiting list for a kidney, and people die waiting every day.  To consider someday becoming a kidney donor, while you are living or after you've passed, a couple of great sites to research are http://www.matchingdonors.com and http://www.kidneyregistry.org. You can also contact your local hospital.

For more enlightening  reading, follow the links below.  There is a lot of press about kidney transplants, if one looks for it.  Everything from policy to human interest... 

Under New Law, Kidney Transplant Priorities Will Shift

Donating a kidney to mom part of a cross-country chain of events

WFU coach donates kidney to player

Jailed Sisters Are Released for Kidney Transplant

Additional news, Patrick and our mom, Betsy, are both doing well.  Mom feels much better than before she went into the hospital!  Both are recovering and continuing to follow doctors' orders.  Patrick just started a new part time job at Tripp's, our family's favorite neighborhood restaurant. He will be hosting lunch, three days a week.  A perfect fit for him to get back onto his feet!  Also, he was asked to give a group presentation about being a dialysis and kidney disease patient by a church, the Freedom Temple in Raleigh, this coming Saturday.  We expect this experience to be very empowering for him.  His numbers are looking good so far, and last week he met the transplant team for an informational session with optimism. There will be some more time until the operation can happen, and it's a time for making the most of it. 

The Renal Diet

For those of you wondering what the most healthy diet and lifestyle is for Patrick, here are some excellent educational resources.  The main foods that he needs to avoid are those that contain sodium, potassium, and phosphorus (his blood already contains levels that are too high in these elements).  It is tricky to avoid these things, because many foods that we think of as "healthy," that are low in sodium, are high in potassium and/or phosphorus.  Basically, whole grains are NOT allowed for people on dialysis. White rice, white bread and enriched pasta are good carbs for Patrick- he needs to bulk up after losing weight over months in the hospital.  Meats can be prepared in a low sodium recipe, and he needs to be getting plenty of protein because he is losing a lot in his urine (one of the obvious signs of kidney failure).  Fruits and veggies are limited according to a specific list of what's allowed (bananas, melons, beans, potatoes and tomatoes are NOT okay.  Apples, berries, mushrooms, peppers and cooked greens are alright).  For the most part, dairy is NOT allowed. 

There are different diets to be adhered to during different stages of Chronic Kidney Disease.  Patrick has already started hemodialysis, and the link to reading about this specific diet plan is below...

http://www.davita.com

About sodium intake:
http://www.davita.com/diet-and-nutrition/diet-basics/sodium-and-chronic-kidney-disease/a/481

About potassium intake:
http://www.davita.com/diet-and-nutrition/diet-basics/potassium-and-chronic-kidney-disease/a/479

About phosphorus intake:
http://www.davita.com/diet-and-nutrition/diet-basics/phosphorus-and-chronic-kidney-disease/a/478

As the disease evolves and different treatments are required, his dietary needs will change.  This is confusing and hard to stay on top of.  Anyone who has tips on low sodium/potassium nutrition, please share!  There are a lot of health benefits to reducing sodium- I know of plenty of people who have maintained a similar diet, and felt much better for it.    

In terms of exercise, it would help to find a good physical therapist who is familiar with kidney issues.  By late January, Patrick was really worn down (losing weight and muscle, unable to be even moderately active).  February and March have seen a major turn-around due to he dialysis treatments three times a week.  Now that he feels motivated to move again, he is ready to start achieving some goals, such as bike riding, lifting weights, even practicing a little yoga :)

Focal Segmental Glomerulosclerosis

Sending you a link to the UNC Kidney Center, where Patrick is a patient. It is awesome to see that he is in such an outstanding facility.  When I typed "FSGS" into google, their website was the #2 spot on the search results (after Wikipedia)!  If you follow the link below you can read all about FSGS, the different kinds, causes and treatments.  It is a thorough explanation and easy to follow.  I made some notes based on the criteria as it relates to Patrick's case.    

http://www.unckidneycenter.org/kidneyhealthlibrary/fsgs.html#looklike

-FSGS could have been present for a while, unnoticed until symptoms were present in September 2010
-it is not currently known if Patrick's disease is "secondary" or "primary"
-all of the symptoms listed have been present
-collapsing variant has been diagnosed
--the first symptoms that were noticed when Patrick was living in West Virginia were diagnosed as "Nephrotic Syndrome."  The docs at WVU thought it was being caused by something other than FSGS.

"End-stage renal failure" is the term used to diagnose the end of kidney function, and the need for a transplant.  He has not yet received this diagnosis, which means that the doctors are hopeful that his kidneys can maintain some function.  Dialysis treatment has been very successful so far, in terms of his quality of life.  Receiving treatments at the clinic from 7 am to noon three days a week is not ideal for a long-term solution, but for now it is allowing Patrick to reclaim the rest of his days and nights- his appetite is healthy, without the nausea, and he is sleeping soundly through the night.  There is even an option to have dialysis at home at some point in time, depending on what his medical team deems best.

Some of you have heard about our mother's hospitalization this week (Wednesday until present).  She is feeling much better and is scheduled to come home tomorrow, after a check-up following the minor procedure that took place this afternoon called "cardioversion."  A slight shock was given to her heart to reset its rhythm because although her blood-pressure has been dangerously high, her pulse was quite low and her heartbeat irregular.  We are so grateful that this episode did not result in stroke or other organ damage.  And all of her vital signs are now looking healthy and strong.  THANK YOU to everyone who called and visited while she was at Rex.  And to everyone reading this blog- words cannot express the gratitude we feel and blessings that you bring by sending your love, support, and concern.  Keep praying- it is working!

Last Summer in WV

A few photos from the Nelson Rocks Preserve in Circleville, WV.  This is where Patrick worked as a guide on the Via Ferrata, the "Iron Way."  Don't let his goofy grin fool you, it's a facade.  He was really shaking in his boots the whole time.  Not me, I conquered my fear of heights in mere minutes.   Can't you tell?

Introduction

About this blog- it's a hard for someone who doesn't usually do this sort of thing to write a blog.  Neither Patrick nor I (his sister, Kate) currently have a facebook account.  And these days, the internet is the best resource for keeping in touch with friends and family, and for sharing information.  Writing this blog is a way to use the "social network" and be in the loop with others.  Please follow and share, post comments. There have been so many changes and events in Patrick's health since September that it's been hard to follow and keep track. The more communication on this post the better.  All of your insights, questions, ideas, support, and love are welcome!  Anything that Patrick wants to share or needs can be posted here too.  For example if a new kidney is needed, someone reading this blog might just be a match.

There is no way for anyone to know what will happen in the future, the best we can do is be aware of what is going on in the moment, and what has led up to it.  For the past five months Patrick has been living with a "nephrotic syndrome" (kidney disease) that has led him to deal with a slew of unpleasant symptoms, a closet full of medicine, restricted diet, and frequent hospitalizations.  It's been a roller coaster-  in January a stomach virus caused severe dehydration and led to "acute kidney failure."  The hospitalization has been mentally and emotionally exhausting.  His doctors and team at the UNC Kidney center are globally recognized, and being in the care of such knowledgeable and compassionate experts has produced some very positive results.  Patrick is currently on an up-swing.  He is living at home, receiving out-patient dialysis three days a week, and taking good care of himself nutritionally (more to come on that later). 

The next posts here are mostly going to deal with topics, educational and specific to Patrick's needs.  If you know Patrick, please send him your love and support.  Mailing address and email to reach Patrick are:  patrickdunnagan@hotmail.com,
 2309 Wheeler Rd. Raleigh, NC 27612

As mentioned before, a living kidney donor may be needed for Patrick to recover, and it could be weeks, months, or years before we know if the disease will turn in that direction.  We will post information on how to be tested as it becomes necessary.  For now, please be aware that only a healthy person will be able to give, and will be able to recover completely and live a normal life.  The donor would have absolutely no expenses, yet is required to have health insurance (for their own protection, should a pre-existing condition be found during screening).  The only expense, and biggest sacrifice, is a 6 week recovery period after surgery, during which the donor could not work or engage in other strenuous activity.  Family Medical Leave Act can help cover lost wages, yet this depends on employment status.  There is no age limit for donating, however the best match would be someone near to Patrick in age.  Patrick would require an organ donor with type O blood only (positive or negative), and there is a series of other tests (DNA, etc) that have to be similar for the organs to be an acceptable match for transplant.  So stay tuned!  And thanks for you love and prayers.