Truly Overwhelmed by the Generosity of Others

     I can not  begin to thank everyone for their generosity as I go through this journey for a kidney transplant.  This journey seems surreal and I still cannot believe it is happening to me. Once again, I am overwhelmed by the generosity of so many.  Each day this week I have been brought to tears by the kindness of others. To explain how I feel, can not be put into words. 
 

     A few weeks ago, Tiffany Barber called me to say she was going to sell 31 Gifts as a means to fundraise for me.  She sponsored an online party and sold an abundance of products.  I received credit for about $1000 in free products and chose several items for raffles at various fundraising events. The commission of the party was approximately $400 and 100% is allocated for fundraising.  Tiffany surprised me once again with announcing 50% of the commission for parties held in February will be for fundraising. At this time, four parties are booked.  Please let Tiffany or me know if you would like to book a party or make a purchase.  Thanks to everyone who helped this first party become a success or booked a party for next month.
 

   Many people loved the Urine My Heart pin I received from Janice Wilson.  It is incredibly touching to see many co-workers wearing the kidney pin in support of the transplant.  Last weekend, Ronnie and I decided to order more pins after a few friends asked about getting one.   A phenomenal number of friends have requested pins since that time.  We will place the order today and should receive the pins in about a week.

   Ronnie and Rick Green, Director of Golf at Lane Tree Golf Course in Goldsboro have been planning a golf tournament.  I am amazed  how much they have accomplished this week.  The tournament will be held, May 2 at Lane Tree Golf Course.  We need golfers, volunteers, sponsors  and raffle items. Responses thus far from people and organizations contacted have been exceptional.   One VERY EXCEPTIONAL response includes Anthony Floars of Deacon Jones Kia offering a 2014 Kia Optima for a Hole in One!  I am still in awe! Anthony's parents, Jackie and Sue Floars are the couple who took Ashley as a newborn when I had renal failure.  Thanks to everyone who has already contacted us wanting to participate.  Please share the news about the golf tournament.  We need lots of individuals to make this day a success.
 

     Other fundraising events will be taking place in the next few months.   Kathryn West will sponsor a Premiere Jewelry party and we are planning Wine and Design events in Cary and Goldsboro.  Also, we are planning a 5K at Benson Park in Garner in the fall.  If you have ideas for successful fundraising events, please let me know.  I want to have all donor out of pocket expenses covered for before, during and after the transplant.

     Finally, thanks to everyone who has contacted UNC about becoming a potential donor.  This transplant journey has to be one of the most humbling experiences of my life.  Earlier this week, Michael, the husband of my dear friend Lanie who died last January of cancer told me he wanted to be a potential donor. Lanie would be so proud!  It is just unbelievable to see how much others care and want to help me.  If you have been considering becoming a potential donor, please contact Amy Woodard, Living Donor Coordinator at 919- 966-3079.

 

    Wish I could find the right words to say thank you to everyone for helping me through this journey.  God is blessing beyond my expectations.  I am truly overwhelmed by the generosity of others.  Please continue to pray specifically that I find a living donor, maintain present kidney function so that I do not have to go  on dialysis and remain well enough to work.  Thank you!

If you would like a copy of the flyer and registration form, please email me at Carolinakidney@gmail.com.   I will gladly send you the information.   Thanks!

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You're In My Heart

      Once again this week, I have been in awe of such selfless, caring, creative, and sensational friends who are encouraging me as I go through this journey for a kidney transplant.  When I began this journey, I prayed for God to help me make it through as smooth and easy as possible.   It is amazing how prayers have been answered.
 

      Selfless friends have encouraged me this week by contacting UNC about being a living donor for the transplant.  I can not even explain the emotion I feel knowing others are actually willing to go through this process.  Their willingness to sacrifice for me is very  humbling.
  

     There are also others who would like to be a potential donor, but can not due to health conditions.  I received the sweetest message this week from one of Ronnie's childhood friends stating she and her husband went to the doctor to determine if they could be potential donors.   Both were diagnosed with diabetes. She was extremely disappointed about not being able to help me.  Brings tears to my eyes when I think about them, because they truly wanted to be potential donors.
 

     Caring friends have definitely brightened my soul this week and depleted my tear supply  at the same time.   I have cried so much in the past week due to the caring spirit of others. A friend from work began writing blog at the beginning of the year.  Earlier this week she wrote about my journey for a transplant and asked others to consider being a living donor and  participate in the 31 Gifts online fundraising  party hosted by another co-worker.  Other friends have also been sharing through social media  about my journey and fundraising.  It is touching to see my blog and fundraising information on  Twitter, Facebook, email and even Pinterest.  A childhood friend who I have not seen in countless years shared my blog on  the kidney page for Pinterest. (I had no clue there was even a kidney page on Pinterest).  Another childhood friend sent an email to members of The Class of 1982 from Rosewood High School with a link to my blog.   I can not thank each of you enough for what you that have done during the past few weeks by sharing my journey. 

      An extremely creative friend put a very big smile on my face this week.   Don't think I am exaggerating to note many co-workers have been talking behind my back during the past few days.  The conversation has been about  the cutest kidney pin you have ever seen.  A co-worker discovered this pin on the web and knew she had a phenomenal means to assist in fundraising.  I was sitting at my desk Friday morning, when 3 co-workers came in my classroom wearing kidney pins in support of the transplant.  I could not believe it!  My mouth hung open for  few minutes in amazement of their creative support . The phrase "Urine My Heart"  is priceless.  The pin is a kidney and the background is paper.   $5 donations are being accepted if you would like to order one.


       As you have read, I have sensational friends. Information will be shared in the near future about fundraising events which include a golf tournament,  Premier Jewelry sale, painting  at Wine and Design, t-shirt sale and possibly a  5K fun walk.  The  31 Gifts fundraising online fundraising event is through January 31.  100% of the commission from this event will be given to my fundraising account.  You can shop at  Jinzo for Jones on Facebook.  Also,   if you are interested in becoming a living donor, please call Amy Woodard at UNC. Her number is 919) 966-3079. 
 
     Prayers are greatly appreciated as I continue this journey.  My biggest struggle at this time is feeling exhausted.   Next week will be the first week I will be at work each day since the last week in October. Besides the week of December 23, I have been to kidney transplant related appointments for 11 weeks.   The are many appointments in the future, but I will gladly take a week off from waiting rooms, needles, medical tests, stethoscopes and white coats!
 

      Thanks again to my selfless, caring, creative, and sensational   friends.  Always remember,  Urine My Heart!

Selfless Friends and Sensational Fundraising

     I am awesomely amazed with how God blesses me with so many selfless friends.  My emotions have been on overload thinking about how many wonderful people have approached me since I began this journey and offered to help me in countless ways.

 

     Several people have offered to be a potential donor for the kidney transplant. My heart was truly touched by a friend at work this week who told me she and another co-worker looked up the criterion for being a kidney transplant donor.  They discovered  individuals with diabetes can not donate.  Unfortunately she is a diabetic as well as the other co-worker.  My heart broke as she started crying and talking about how much she wanted to help me with donating a kidney and could not. Being overloaded with emotions, I went to my classroom and sobbed.   Another example is that  a dear friend told me she wanted to be a donor immediately after she learned I needed a transplant.  Shortly after that, this dear friend was diagnosed with cancer.  She is also extremely disappointed about not being a potential donor and has told me repeatedly. I am truly blessed with selfless friends. 

 

      Anyone is interested in being a potential donor can contact Amy Woodard RN, UNC Living Donor  Coordinator at  phone number (919) 966-3079.  It is my understanding she will either ask you questions or send you a questionnaire.  Once Ms. Woodard has a pool of potential donors,  a committee reviews the responses on the questionnaires and chooses the best potential donor based upon a specific criteria that best meets my needs.  Even though I have O Positive blood type, you do not need to have the same blood type as me or know your blood type to become a potential donor.  Dr. True, renal transplant doctor states that Cross-Match Blood Typing is possible for the transplant.  The blood contains antigens and matching antigens is the most important component between the  transplant donor and recipient.  If you are considering, please contact Amy Woodard and thanks so very much.

 

     It has been amazing as well emotionally overwhelming to be approached by friends who want to assist with fundraising.  Many friends including Katie Patrick, Teresa Howard, and Heather Shoaf have been sharing ideas for fundraising.  Many of the ideas included involving Briarcliff faculty, staff, students and families.  Unfortunately we are unable to participate in fundraising activities as a school due to county policy.  Last Saturday, a friend from work named Tiffany Barber called me.  She has joined 31 Gifts as a sales consultant as a means to fundraise for me.  Almost every time I think about it, I start crying (like now).   Until January 29, Tiffany will donate 100% of the commission to a transplant fund for me.  Subsequent parties will yield a portion of the commission as well.  Please share the link and tell others about the online party.  The link is: Jinzō for Jones.  Jinzo is kidney in Japanese. Another friend at work, Karen Hargett suggested a fundraising  event at Wine and Design in Cary.  Approximately 50 people can participate in the event and 25% of the cost will be allocated to the transplant fund.    I received an email from a co-worker, Kathy Borkowski about fundraising through Chilli's.  Chilli's will donate 10% of the profits. Since most of us like to eat,  I don't think this fundraiser would be difficult  at all.  Some of Ronnie's friends are planning a golf tournament for the spring.  Details to come.   As you have read, my friends have thought of sensational fundraising ideas.

 

    Even though I have health insurance, the cost of a kidney transplant is not cheap.  Yesterday I received a $2800 bill for blood labs.  I have been to appointments every week since November 4.  One of my greatest desires for fundraising is to assist the donor with expenses.  Of course, it is illegal to pay anyone for an organ, but I can use funds from fundraising to help offset the donors expenses.  The donor not only donates their organ, but a tremendous amount of time before the transplant with medical tests and afterwards with recovering.  My health insurance will pay for their medical bills, but there will be expenses for the donor such as gas for driving to and from appointments, parking at UNC, food, time from work, etc.  I am in the process of completing the registration form for a non-profit fundraising organization named HelpHopeLive.  To learn more about HelpHopeLive, please go to their website. The link is: www.helphopelive.org/. ‎

 

    Don't know how I can possibly thank everyone enough who is helping me by registering to become a potential donor or fundraising.  Your efforts, love and concern are priceless. Also, another selfless friend helped me Wednesday.  Shelly Pleasants spent several hours with me at UNC for a medical procedure/test.  I was sedated and not allowed to drive.  She is truly a great friend and blessing.    Thanks Shelly.  So many friends have been praying for me as well.  Please continue to pray specifically that I find a donor match in the next few months, don't become too ill to work or have to go on dialysis.  If you have any ideas for fundraising or would like to help, please let me  know.  I look forward to sharing more good news each time I write about this journey and  I appreciate you following it.

 

 

Fifty and Fabulous News!

      Well, it is no secret that today is my 50th Birthday.  Received homemade cards from students and serenaded several times with renditions of the "Happy Birthday" song.  Cha, Cha, Cha! Walked into my classroom this morning greeted by birthday balloons and later treated with a chocolate chip cookie cake, gifts and cards from co-workers.  Truly blessed by such great co-workers and friends.  I also received an abundance of  texts, phone calls and Facebook messages today.  Tonight Kelsey and I are celebrating our birthdays with family at the The Peddler . 

 

     Ronnie and I met with Dr. Karin True for a little less than two hours this afternoon.  She was very professional, but yet personable. We really liked her. She began with asking MANY questions about my health and then began explaining the transplant process.  After she started explaining the transplant process I was feeling pretty overwhelmed and decided to tape our conversation with my phone.  Hope to take some time this weekend to listen to it and probably will a few times after that as well.  Felt like information overload!

 

     Extremely relieved to have the appointment behind me.  My blood pressure was extremely high during check-in with the nurse, but I am confident it was due to feeling stressed.  To sum up the appointment, Dr. True gave me great news!  She shared that Cross-Matching makes it very possible for me to receive a kidney from a donor of any blood type!  Knowing this information gives me more hope of finding a donor.  Dr. True said that anyone interested in donating should contact Amy Woodard, Transplant Nurse Coordinator at 919-966-3079 even if you don't know your blood type. (Also good news because you do NOT have to go to the American Red Cross to determine your blood type).  Basically, the transplant team will review information on the questionnaires completed by potential donors and choose who best meets the criteria for being my donor.  That person will complete blood tests, medical tests, a psychological test and meet with a social worker.  If you are truly interested in being a donor, please contact Amy Woodard.  Since I saw Dr. True today, the process of finding a donor can begin, but I still can not be placed on the transplant list until I see the surgeon.  That appointment is not until March 17, but in the meantime, WE CAN FIND A POTENTIAL DONOR.

    I also met Gwen, the transplant coordinator assigned to me.  She helps set up appointments and assists me through the pre- and post- transplant processes.  There are some tests Dr. True wants for me to have and I will wait to hear from Gwen as to when they are scheduled. 

   Thanks to so many of you for your encouraging words and well wishes.  Please continue to pray that I find a donor before the crucial time arrives for needing dialysis and/or becoming very ill.

 

 

 

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Amazing How Quickly Things Happen When You Email The Boss

       I mentioned in a previous blog that Dr. Falk is the Chief Nephrologist at UNC.  Well the old adage ..."It's not what you know, but who you know"  came true for me tonight. Back on December 19, Dr. Falk stated he wanted me to see the doctors in the transplant clinic in January.  Around the second week of December, I received appointment notifications for March 17 to see the kidney transplant surgeon as well as abdominal transplant surgeon.  Dr. Falk commented that  I could not wait and needed to see the surgeons in January. ( I had even called December 16 to find out if the appointments could be set at an earlier date and was told it was not possible). 

     Since I had not received any appointment notifications in the mail for January appointments with the surgeons, I decided this morning to email Dr. Falk.    Well tonight,  I received an email from the kidney transplant surgeon with an apology stating Dr. Falk had asked her earlier to set up an appointment with me and she had forgotten.  He had forwarded her the email I sent him this morning.  She asked me to come in Thursday afternoon or reply with another date that would be convenient. Well, I will be seeing her Thursday at 1:00!  Anxious, but ready to move forward in this journey! 

First Offical Appointment at Transplant Clinic

     Today, Ronnie and I went for the first official appointment at the transplant clinic.  The appointment was with a transplant social worker.  We had met her previously at the Transplant Orientation Class in November and I had seen her at the Fundraiser Workshop a week later.  It was cool to find out that she grew up in  Goldsboro and graduated from Eastern Wayne HS. 

 

     The  appointment was for an hour with her asking us questions. Needless to say... it was  rather interesting!  At the end of the hour, she went over some information about the transplant.  The one thing that stood out from the information shared was that I will NOT be allowed to have visitors for the first four to six weeks after the transplant.  Only "care takers" will be allowed to spend time with me.  Looks like I will need lots of different care takers during that time (and learn how to Face Time  correctly since Ashley made fun of me last week on Facebook).

 

     Next, I went to have an echocardiogram (ultrasound of heart).  It was dark in the room and extremely quiet.  The test took about 30 minutes and I fell asleep!  Don't think the test is designed for patients to take a nap.  I am sure the poor fellow administering the test heard me snore!

 

     I have been very fortunate to have many friends state they want to be tested to determine if they are a match for donating their kidney to me.  It is overwhelming to know how blessed I am to have such great friends.  I am truly touched!

 

     My blood type is O Positive.  Dr. Falk states that my donor should have the same blood type.  If you are uncertain about your blood type, you can go to the American Red Cross and give blood in order to find out.  I was told by a AMR representative that individuals can contact them at 1-800-RED-CROSS about 5 days after donating and find out their blood type.  If you find out that you are O Positive or already know, you can call Amy Woodard, Transplant Nurse Coordinator at 919-966-3079.  She will send you a questionnaire to complete. Once you return the questionnaire and it is reviewed, you will then be contacted about coming in for further testing.    The tests include blood tests,  medical tests, a psychological test and meeting with a social worker. 

 

     Listed are locations, days and times American Red Cross is open in Cary, Raleigh and Goldsboro. 

 

Cary Office-919-468-8867

3700 Regency Parkway Suite 150
Cary, NC 27518       

Near Lifetime Fitness

 

Monday: 1:30 pm-6:30 pm
Wednesday: 8:00 am-12:30 pm
Thursday: 1:30 pm-7:00 pm
Friday: 8:00 am-12:30 pm
2nd & 4th Saturday: 7:30 am-1:00 pm

Or By Appointment

___________________________________________________________________________________

 

Raleigh Office- 919- 231-1602

100 N. Peartree Ln.

Raleigh, NC 27610

Off New Bern Avenue Near Wake Medical Center                     

 

Monday: 2:30 pm- 7:00 pm

Thursday:7:30 am- 12:30 pm

Or By Appointment

___________________________________________________________________________________,

 

Goldsboro Office- 919- 735-7201

600 N George St.

Goldsboro, NC 27530

 

Second Tuesday of Every Month:  1:30 pm- 6:30 pm

Blood Drives in the County Throughout Each Month, Contact Office for Dates and Locations

____________________________________________________________________________________

 

      Please contact me if you have any questions.  As you have read, the process is very detailed and time consuming.  Please pray I find a donor before needing to go on dialysis, become too ill to work or function day to day.

    

     Thanks again to everyone and especially those who are considering going through the donation process.

New Year and Prayers for a New Kidney

 

     Many friends have asked me to write a blog about my experience while going through the process of a kidney transplant. Several people have inquired into why I have kidney problems. I really wish I knew what happened in 1988 while in child labor or soon after Ashley was born. Unfortunately, we will never know the answers, and it is actually something I have not dwelt on for the past 25 years. I have looked at the circumstance as an opportunity to thank God for a second chance at life, because I was very close to death.   

     I was 24 years old and the pregnancy was uneventful with no concerns or complications. An ultrasound was not performed, and we did not even know the sex of Ashley until she was born.  The day I was discharged from the hospital, I started running a fever.  A few days later I went to see the obstetrician and  he prescribed an antibiotic.  By the time Ashley was eleven days old,  I was extremely ill.  Ronnie told me he was afraid I was going to die in our home and took me to the emergency room.  I was admitted to the hospital. I will always be eternally grateful to family and friends that prayed for Ronnie and me, as well as, took care of Ashley during the weeks I was in the hospital and when I returned home. Jackie and Sue Floars stand out as far as making a significant impact during those days. They took Ashley as a newborn to live in their home and kept her as if she was their own. Through the years, we have maintained a special relationship with the Floars family.

      During my time in the hospital, my family tells me how they stood over me several times waiting for me to take my last breath, because I was so ill.  I was swollen with 40 pounds of fluid and unable to move, see or even function.  Ronnie was spending his time praying that he would not be a widower with a newborn at the age of 25.  We had only been married 20 months when this happened.  After being at the hospital in Goldsboro for a week, I was taken to UNC Hospitals.  Within a couple days of being admitted, I was diagnosed with Acute Tubular Necrosis and Minimal Change Disease.  The tubes to the kidneys were blocked and caused complete renal failure, as well as, the urine spilled an excessive amount of protein.  With the assistance of dialysis and strong medications, I was able to gain kidney function again.  After about a year, my kidney function was almost 100 percent. 

      While hospitalized at UNC, I was assigned Dr. Ronald Falk as my physician.  I have been very fortunate to have him as my nephrologist all these years.  He became the Chief Nephrologist at UNC in 1993 and is known around the world for his expertise.  Over the years, my kidney function has continued to be monitored by Dr. Falk. 

      During the past 2 years, my kidney function has progressively decreased.  On June 14, 2013, I went to UNC for a kidney biopsy.  Blood work and an ultrasound were performed before I went into the operating room for the biopsy.  From the ultrasound, the doctor discovered my kidneys were extremely scarred and had deteriorated over the years.  The biopsy could not be performed.  I was diagnosed with Focal Segmental Glomerulosclerosis, which means the kidneys do not filter blood appropriately.    In July, Dr. Falk talked with me about the possibility of having a transplant and in October referred me to the transplant team.  The pre-transplant process is very involved and requires many medical tests/procedures. I have a couple more tests before completing this part of the process.  Once the tests are complete and I am evaluated by the transplant surgeons, I should receive approval for the transplant. 

     I appreciate everyone's prayers, love, kind words and concern as I go through this journey. I will continue to document my kidney transplant process on this blog. Happy New Year to you, and I wish you a phenomenal 2014!