Joyful Holidays and a Happy New Year from our family to yours

Seasons Greetings to all, may the holidays bring you peace, comfort, love and joy.

It has been a wonderful Christmas in our home and hearts this year. I cannot express the gratitude that is felt for all being together with family and friends, after such a challenging year for Patrick, Morgan, and everyone who has shared this journey by showing support, love and friendship to our family.

In just a short while we should hear back from UNC regarding the ABO-incompatible transplant. The best possible outcome is that I will be the donor for my brother, Patrick, even though we have different blood types. It truly is a miracle of science that transplantation has advanced this far. We'll be sure to let everyone know what we hear, when we hear it. Every kind of decision related to transplant takes soooo long. There are a few more tests to run, and a team of MDs will then vote on the fate of the transplant. It's a lot to anticipate, and we are beyond ready for it to happen!

Patrick is feeling much better than he has in months. Essentially, he had lost a lot of ground this summer during his trial treatment period using peritoneal dialysis. It was a huge setback for him, physically, mentally and emotionally. His recovery since then has involved a mind-body-spirit regeneration, and has required careful attention to diet, lifestyle, exercise, therapy, medication and rest. He was thrilled the other day when some blood work showed the highest levels of albumin (protein) that he's had since this summer. It means that he is feeling better, more energy, stronger, and more fit, which leads to having a better, more positive attitude. We are very grateful for this improvement and encouraged for the transplant!

Mom and Patrick, Christmas 2012

This season, love is alive. I am inspired by the courage that I see in ordinary individuals, facing unfathomable hardships. My wish for you all is that you experience many blessings in 2013, and if faced with such adversity, you find the strength, support, grace and love to carry on and inspire others.

November News

After a couple of rounds of testing at Johns Hopkins and the UNC transplant center in Chapel Hill, we're still waiting for an answer about the possibility of an ABO-incompatible transplant between me and Patrick.

Last fall with Mom, Dad, Patrick, Aaron and Christi 

At Hopkins, Patrick was evaluated by the transplant team, and met with Dr. Robert Montgomery, renowned transplant surgeon. He and Mom were very impressed with the staff and with the facilities. Hopkins is a leader in doing blood type incompatible surgeries, and their success rates in retaining kidney function post-transplant are excellent. So we are feeling that the opportunity to have the procedure there could be very fortunate for both of us, but logisitically not as convenient becuase we would have to travel to Balitimore and Patrick would need to stay there for at lease a month post-op. At this point, he has not yet been accepted as a patient; they are waiting  on a few more lab results. After they approve Patrick as a recipient, they will evaulate me as a donor. As we know from experience, this is a time-consuming process, and it may move more quickly at UNC, where Patrick is already approved for transplant, and currently on the wait list.

I was evaluated at UNC last week, and met the director of the Living Donor Program, Dr. Tomasz Kozlowski, who would perform the surgery if we go with UNC for the transplant. The staff were all really friendly, and although UNC is relativiely new to doing ABO-incompatible transplants, they have been sucessful with the surgeries they have performed and are confident that Patrick's proceedure would go smoothly. I have not yet been approved, pending a few more labs to be done asap. We are looking to go with whichever center can give us approval and schedule a surgery date quickly and move the process along. Unfortunately, it looks like the transplant will not be able to happen over the Decemebr break, between semesters, so it would be in January, at the earliest. I am anticipating having a disruption in my spring semester, and hoping for the best with juggling my classes at UNCG.

In the meantime, Patrick's health is stable, his blood pressure is much lower that it was in Sept- Oct, and his spirits are overall a little more positive. It's just been hard to keep hanging on, but we know that there is so much to be grateful for, and so much to be hopeful about! Positivity is the key, for sure, and in this time, as the holidays, the season of lights, and the darkness of winter approach, I wish everyone a beacon of hope that love, blessings, and solidarity may abound in our hearts and lives in the new year. It's almost here! My best to you all.

Keeping the Faith

Hello all,

Despite complications and set-backs, we are keeping the faith that a kidney transplant could happen soon. Patrick and I are being referred to two transplant centers, UNC and Johns Hopkins, as an "incompatible donor match." It is a procedure that has been proven to be successful at leading research institutes, where organs with incompatible blood/ tissue types are transplanted, after a series of Plasmapheresis- "to remove antibodies from the bloodstream, thereby preventing them from attacking their targets." The treatments are rigorous, and there is an added level of risk due to the complication of the procedure, but we have been told that the outcomes are as successful, or more so, than a transplant between two organs of the same blood type. After the transplant, of course, it will be most important that Patrick continues to take immune-suppressant drugs forever, because a transplanted organ can be rejected at any time, even years or decades after transplant. Here's the web page for Hopkins' incompatible program- there's a very informative video as well as reading material about the procedure.

Obviously, we don't know how quickly this process will move along, and there are no guarantees. I may not be accepted as a donor after the evaluation. After working and waiting for so long to see if Morgan could be a donor, we have all been very disappointed and frustrated with the process. (Morgan and Patrick especially!) It is unclear exactly what has happened with Morgan's evaluation at Wake Forest Baptist Hospital. At present, it seems like he will not be accepted as a donor. My heart goes out to you Morgan, for your ongoing persistence in this fight- you've been there for Patrick in more ways than I could count. Already you have given him the greatest gift of friendship!!

For now, the name of the game is being strong, holding on, and getting prepared for the transplant to happen. Patrick has to be healthy enough for surgery, and his blood pressure has continued to fluctuate all month. It gets especially high during dialysis treatment, which is not supposed to happen. He's been in and out of the hospital lately with high BP, with no sign of the cause.  This past week at Rex, they did a Doppler radar of his kidneys looking for evidence of artery damage, but did not find the results that they were looking for. It's good that the arteries look okay, but frustrating to not have an answer. With the seriousness of his hypertension problems, there's a good chance that he will need to be back in the hospital for some time before the transplant happens, and next time he'll go to UNC, to see the nephrology specialists who diagnosed his FSGS two years ago. We are hoping and praying that Patrick can overcome this setback, that his BP can be regulated, and that he does not have any more seizures. He hasn't had any since the one episode, about a month ago. 

Please keep us in your prayers! The sooner this transplant can happen the better, and there are a number of factors that need to fall into place for that to happen. Most important is the love and friendship from family and friends. Sometimes its hard to remember to be grateful for the blessings of life, and friendship and love are blessings that we can always hold onto. Thank you! ~Kate

Fluctuations

The post today is to share what information we have about Patrick's status- he has been hospitalized  three times in the past week due to high blood pressure. He is in Rex hospital at the moment, in Raleigh, and we don't know when he will be discharged. It seems that his b.p. will not regulate. Each time he's been sent home from the hospital, he's had to return the following day.

Last Wednesday morning, September 19, he had a couple of seizures due to high b.p. There was some swelling in the back of his brain, known as PRES syndrome. He was in the hospital for several days, and his b.p. fluctuated a great deal. On Monday, Mom brought him home from Rex. He will not be able to drive for several months due to the seizures. On Tuesday (today), she took him to dialysis and his blood pressure was very high, so he ended up back in he ER. Please pray for Patrick and send him positive thoughts, strength, and healing energy.  His high b.p. seems to be linked to a nervous condition- he's experiencing a lot of anxiety and trauma. This is definitely an example of an imbalance in the mind-body-spirit connection. So Patrick has a lot of healing to do, and he is in good hands at Rex.

Without kidney function, the body has no way to regulate blood pressure. His doctors have been adjusting medication over the past week, and still don't know why it continues to fluctuate when he is on so many meds. Ultimately, the b.p. will not regulate until Patrick has a kidney transplant. At this moment, we don't know if/ when that will happen. Wake Forest Baptist Hospital seem to favor Morgan as a donor, and he should be hearing from them soon regarding the final phase of work-up. This is a really stressful waiting period, because we are trying to be optimistic, but also realistic and be prepared for whatever the future may hold.

Patrick has some awesome friends like Morgan, of course, and friends from elementary and high school, and college who keep in touch and have traveled a long way to see him.  That friendship, love and support means everything! Please, keep it coming!

With love, as always, and more updates to come soon...
Kate

Family Photos

Family time in August. We took a trip to Waynesville, NC to visit with our cousins, the Armstrongs, and attend the christening of the newest member of our family, Harvey Baker.

Patrick, Mom, and me in the mountains.

Some states offer tax incentives for organ donors

An article today from NPR examines a recent study by Massachusetts General Hospital on the tax incentives offered by certain states for organ donors to help defer expenses related to the event. Legally, there can be no out of pocket expenses for the operation itself, or related medical procedures, but the donor will typically incur related expenses such as time taken off work, lost wages, travel, and other household costs related to recuperation. The article states that "the financial burden for a living kidney donor can range from $907 to $3,089."  States that now offer tax breaks for organ donors include Arkansas, Georgia, Idaho, Iowa, Louisiana, Maryland, Massachusetts, Minnesota, Mississippi, New Mexico, North Dakota, Ohio, Oklahoma, South Carolina, Utah, Virginia and Wisconsin.

The study found the tax breaks ineffective as financial incentives for organ donation. Donation rates have remained flat within two years of passage, and the waiting list for kidneys, livers and bone marrow exceeds 100,000 patients.  Perhaps the tax breaks need to offer greater household savings? By federal statute, it's illegal to pay someone for the organ itself. For the full article, click here. If you have comments or opinions to share about this information, please feel free to post below.

I also heard recently that blood donation levels at the American Red Cross are at emergency levels for all blood types. This is a crisis in the US, and with all of the current political controversy about our health care system,the public needs to know that one of the greatest ways to make an impact as an individual is to be a donor- whether it is by giving blood, becoming a living donor, or registering as a deceased organ donor. Contact the Red Cross or National Organ Registry for more information.

PS- not much news about the transplant for Patrick as of today. We are still waiting (!) to hear from Wake Forest and Carolina Medical Center about their evaluations. Thankfully, Patrick is feeling MUCH better now that he has been back on hemodialysis for about a month, so some healing has taken place during the time, physically, mentally and emotionally. Thank you, again, for your prayers and support.

with love,
Kate

Where we're at

If you have type O blood and would consider being a kidney donor, or know anyone who would, please look into the following information. Patrick has been in need of a living donor for almost 2 years, and currently is a patient at 4 transplant centers in NC. If you have any interest in finding out more information about being a living kidney donor (aka HERO) you can contact the donor coordinator at any of these hospitals, just follow the links for contact info:


UNC Chapel Hill
Duke University
Wake Forest Baptist Hospital
Carolina Medical Center, Charlotte

All communication between potential donors and the medical staff is completely confidential, to avoid conflict of interest. There are no out-of-pocket expenses for the donor, other than the time taken off work for recovery, which for some employees, will be covered by the FMLA.

Last fall it looked like Patrick would soon receive a kidney from his best friend, Morgan. That did not work out in the timing that we had hoped, and now it is unclear if the transplant between Patrick and Morgan will even be an option. There are still a couple of hospitals doing evaluations (Wake Forest and CMC in Charlotte) but both UNC and Duke have denied Morgan based on a previous prescription, and the process is getting evermore complicated. Please send positive energy, love, prayers, and uplifting thoughts for both Patrick and Morgan, and that the best kidney that he can receive will be found. 

This has been a challenging transitional period. Patrick stopped using the penitential dialysis at home about 2 weeks ago. The PD was not working well, he was sick for the entire 3 months that he was on it, and there are a number of factors that may have contributed to why it wasn't working well for him. The bottom line was that physically, mentally and emotionally, using PD was exhausting and had a negative effect on Patrick's well being. He had another outpatient procedure to remove the access from his stomach lining, and insert a second catheter into his chest, and he has now returned to the clinic three times a week for hemodialysis. Patrick knows now that receiving treatments at the clinic is a better option for him- he feels bad when he gets there, but much better when he leaves, and knows that it is working to cleanse his system.

A few days after this procedure, Patrick was back in the hospital with a low fever and treated for an infection, which turned out to be C Dif, and we are unsure how long he's had it or if there are any other related issues. A CT scan last week showed inflammation in his colon, and he has been suffering bouts of nausea and vomiting. Right now he is back at the ER at Rex hospital in Raleigh, where our mom is keeping an eye on him and trying to coordinate with specialists. He will need a colonoscopy soon, as well as further examinations by a nephrologist. It's been a bad week, to say the least, and its hard to have hope when the news continues to be discouraging. But we know that what is meant to be will be and that there are brighter days ahead.

Beginning August 1st, Patrick is officially living with me in Greensboro, though he will still be receiving dialysis either in Burlington, Mebane, or Carrboro, due to the Medicare snafu. Morgan is now living with his family as well, since their lease in Chapel Hill has come to an end. A year ago they rented an apartment to be close to the hospital, thinking that the transplant would happen soon. It is disappointing that the surgery has not yet happened, so the move to a new place is a welcome change and chance to set out with good intentions for the next step in this journey.

We truly appreciate our friends and family who give unending support, and please share this blog widely. It may help to find a donor for Patrick, and certainly the more prayers he receives, the better.
Thank you all.
With love,
Kate

Upcoming Appointments

Greetings all,

Not much has changed since the last post. Patrick has been referred to three transplant centers since the kidney donation from his best friends did not work out at UNC. This month we are waiting for appointments at Carolina Medical Center in Charlotte, Duke University, and Baptist Hospital at Wake Forest, for further work-up, where labs will be drawn and evaluated. The first step is for the medical teams to determine whether Patrick will be accepted as a candidate for kidney transplant. After he is evaluated, Morgan will be re-evaluated, and given a second (or third, or fourth) opinion about his eligibility as a donor. If for any reason it is determined that donating a kidney would jeopardize Morgan's health in any way, there are other options to be explored for Patrick. All we can do now is be patient and do everything we can to support a healthy process.

In the meantime, he's been doing dialysis at home now for about 2 months. It is a different technology that the one that Patrick was used to in his sessions at the clinic. This method is called penitential dialysis and it uses the stomach lining as a container and filter for fluid that draws toxins out of the body. It has been a challenging adjustment- sleeping and eating have been difficult; energy level has been low. Patrick has learned a lot about self-care and the freedom gained by doing dialysis at home has been countered by tremendous personal responsibility. It should pay off, when his body has adjusted to the new schedule, routine, and physical burden, and he is able to regain some freedom and flexibility in his daily schedule.

For now it looks like Patrick and I will be living together in Greensboro come August. This has been long anticipated, since we planned on living together last summer, until Medicaid required him to stay at the dialysis centers in Raleigh/ Chapel Hill. It will be a fresh start in a new place for him, and for me, a chance to spend more time with my brother and keep a closer eye on him, and on the health care system that he is navigating. Hopefully there will be big, productive changes to come in the second half of 2012!

Best to you all.
sincerely and with love,
Kate

New referrals

Since being denied at UNC, Patrick and Morgan have been referred to 3 other transplant centers in North Carolina and are still at the beginning phase of being "worked up" for evaluation. In May we went down to the Carolina Medical Center in Charlotte for kidney transplant orientation. The good thing about being referred to CMC is that they have the shortest waiting list for an organ in the state, and although it is ideal for Patrick to have a living donor rather than a cadaver, it is still a great back-up plan. Patrick can actually transfer is current wait time (one year) from UNC to CMC to reduce the remaining time on the list.

Yesterday he had his first appointment at Duke. They took a lot of blood which they will being testing to see if he is eligible to be a kidney recipient. It's interesting that even though Patrick was approved at UNC, this does not mean he will be approved at the other transplant center (though we have no reason to believe that he will not).

Next week is his first schedule visit to Baptist Hospital at Wake Forest. We have confidence that all of these transplant centers are excellent facilities with exceptional staff. Patrick and Morgan both will be evaluated at each of these centers, and it essentially means that they are starting over with a clean slate, and with more options now than we had before. We will continue to share news as it develops, and for now we believe that patience will be a great virtue, as this could be a very lengthy process. Thank you now and always for your continued love, prayers, and support.

Wishing you all a peaceful and joyful summer!
Kate 

Exploring Options

 Hi, all.
Thanks for reading. It's been a while since the last post. Since the beginning of 2012, Patrick's situation has taken a new direction.  His best friend Morgan, was not approved for kidney donation by UNC at this time, due to factors that are out of his control.  He is seeking a second opinion, and there is still a chance that the transplant could happen, when the time is right. This would be a wonderful option for Patrick, because his kidneys have already been tested against Morgan's, and they are what the doctors call a "perfect match." However, if the donation would in any way jeopardize Morgan's health or well-being, then the evaluation process will be discontinued.  In the meantime, we are considering other possible options, including the following:

1. finding another donor candidate, with type O blood.  Because Patrick's chances of recovery are greater with a living donor rather than deceased, we are continuing to look for a donor candidate to give a kidney directly to Patrick for transplant. Currently he has referrals to several hospitals in the state- UNC Chapel Hill, CMC Charlotte, and Duke transplant center. These centers can be contacted anonymously for information about kidney donation. There are no expenses for kidney donor testing, evaluation, or surgery.  All expenses are paid by Patrick's insurance. The expense for the donor is unpaid time away from work (which can be covered by the FMLA, if applicable).

2. waiting on the organ list. When a cadaver's kidney becomes available, it is tested and evaluated for  transplant eligibility. The genetic criteria is then cross-matched with the list of patients across the country, to find the best match for the organ. The list also identifies which patients have been waiting in line the longest and who is next in line, before the kidney is sent to the transplant center where the recipient must be available for surgery within 48 hours. The average wait time for a cadaver kidney is 5 years. Patrick has already been waiting on this list for one year. Although his medical team has made it clear that a living donor is the best option for his recovery, there is still a chance that waiting on the cadaver list could lead to a successful transplant. If you have not legally identified yourself as an organ donor, please do so by contacting the DMV, as well as telling family members about your decision and indicating it in your will.  

3. paired-donation kidney swap. Kidney transplant centers are starting to have great success finding donors by swapping organs for patients with matching blood types.  As Patrick's sister, I am willing to be a donor but my blood type (B) is not compatible with his (O). When my kidneys are evaluated they can potentially be matched and swapped with a recipient with type B blood, if that person has a friend or family member with type O blood who is willing to donate a kidney to Patrick. If a paired-donation match can be found, this is a wonderful way to ensure transplants for people who need them, and save multiple lives at once.

4. ABO incompatible transplant. Patrick has been referred to Johns Hopkins kidney transplant center as well, which is a leader in a new procedure that makes it possible to transplant kidneys between incompatible blood types. The science is relatively new and the procedure is somewhat risky- it involves desensitizing the immune system to allow the recipient's body to accept an incompatible blood type. For Patrick it would mean that he could accept my type B kidney, but only after an extensive and risky procedure called plasmapheresis. It's not our first choice for the transplant, since it such a new technology (only 6 ABO incompatible transplant surgeries have occurred in NC) but we are very happy to know that this option exists. To learn more about this procedure, follow this link to Johns Hopkins:
http://www.hopkinsmedicine.org/transplant/programs/kidney/incompatible/ 

It is going to take some time for these options to be evaluated, and we really appreciate the on-going love and  support from our dear friends and family. Patrick is starting a new type of dialysis next week, called Peritoneal dialysis (PD)  which he can do at home, even over night while sleeping.  This should be a big improvement in his quality of life, since he's been going to the dialysis clinic three times a week for the past 15 months. His energy level will increase and diet will be less restrictive, so starting PD is a positive step for Patrick while waiting for the transplant options to develop.  An interesting article about PD:
A Better Life Through Home Dialysis (NPR, 2009)

Thank you for continuing to support Patrick and our family with your love, prayers and concern.
Sincerely~
Kate

Happy Birthday Dad- 70, Patrick- 27

A New Direction

Last week we received unexpected news from the transplant center- Patrick's dear friend, Morgan, may not be eligible to be a kidney donor.   This is another example to us of miscommunication with UNC.  It seems like we may have been under the wrong impression for months...  and still there is no clear outcome.  The decision may be overturned, or it may not.  We don't know what will come next.  

I have been amazed by Patrick's attitude since hearing this news.  Rather than holding onto anger and disappointment, Patrick has a sense of relief knowing that the surgery is not impending, and that he and Morgan can get on with their lives, ending the wait for a transplant to be scheduled. For Patrick, this means continuing on dialysis, possibly with a new procedure that will allow him to have treatments at home.  And we will begin examining other medical options.  In a way, being back at the start of the search for a donor is a chance to start over fresh and with a renewed sense of life purpose and well-being.  Patrick wrote a message, below, to let everyone know what's happening. Please continue to support Patrick and Morgan, with grateful hearts and loving and prayers.    

~Kate

Hello Friends and Family,

I hope that you are all well and happy as we watch the winter fade to spring. First, I want to thank you for the support, prayers, positive thoughts, and well wishes; they have been a blessing to me.  

I know that many of you had heard through the grapevine that I was very near to receiving a kidney transplant from my dear friend, Morgan Marshall, but we will both have to continue to be patient and wait for this mile stone in our lives. His continued devotion to be my personal hero is testimony to friendship and beauty.   

In recent months I have found it very difficult to be in touch/share myself with friends and family... believing that I was so close to recovery it seemed easier to suffer in silence than to expose the hardship and pains of life with End Stage Renal Disease. With the recent developments (again having to wait for and unknown amount of time) I was released from the anxiety I had been feeling...I was able to see more clearly the joys in my life NOW... not focus only on the good things that I will have. Yesterday i had a proved experience and the desperation that i had been dealing with faded, and tears of joys flowed for hours.
There is a light that shines in the living, and I am so grateful that mine still is.  

~Patrick

February 2012

Mom and Patrick at Machu Picchu Peruvian Restaurant, Raleigh

Since the last post there's not much progess to report.  Patrick's kidney donor-to-be, Morgan, is still waiting for appointments to be scheduled for additional testing before the transplant can occur.   It seems like the surgery is near, yet so far away, because nothing is yet conclusive.  The only expectation that we have is that when Morgan is approved and the UNC Transplant Center is ready to perform the surgery, it will happen.  And it may be scheduled on very little notice.  That's what we hope anyway, for Patrick and Morgan's sake.

They are both healthy and doing well.  Morgan was married to his long-time girlfriend, Michele, last week!  Love abounds between these two, and Patrick is extremely blessed to share their friendship and support during this time of meaningful changes in all their lives'.

Waiting for a transplant has been challenging because for Patrick because it means the chance regain a healthy life.  The medical and self care follow-up after the surgery is critical for transplant recipients.  For the rest of his life, Patrick will be monitored closely for signs of complications- either a possible rejection of the organ, or a occurrence of FSGS, the renal disease that he was diagnosed with in November, 2009.  He will have rigorous supervision from the renal transplant team at UNC, especially during the first year, then gradually waning in regularity to once per week, to twice per month, or possibly less as time goes by.  The website below describes the life-long importance of properly taking medicine, diet, healthy lifestyle and exercise for kidney transplant recipients.  After Patrick receives the amazing gift of a new kidney, the journey to wellness will begin with healing of the mind, body and spirit.  Now is a time to be optimistic and continue to offer prayers and support for Patrick and Morgan.  With all of our love ~ thank you

The Kidney Transplant Experience

Transplant Update

Tomorrow is a big day.  Morgan has an appointment at UNC, for a final evaluation before the surgery can be scheduled.  We're not sure what will happen tomorrow, but hopeful that the transplant can take place in the month of February.  We are very grateful, anxious, and excited.

Over the past year, stories and news of kidney donations have been sources of hope and inspiration.  
Here are a couple that have recently come over the internet.... thanks Marilee!

Atlanta Nurse Donates Kidney to Hospital Patient

Justin Bieber Makes 'Huge Impact' On Organ Donor Registrations