July 2, 2019

July 2, 2019

Thank you to all my supporters! It means so much to me. Helping me with some of my medical costs offers me the ability to pay for other necessities in life. Not having a car, I've been using Uber and NYC Taxi's to get to and from wound care and skin cancer appointments downtown. I always require a car following my skin cancer surgeries so I can make it home before the lidocaine wears off.

Having monetary assistance with some of these important costs offers me the chance to save for other immediate necessities such as a couch, a replacement car and a new laptop computer.

Thanks very much to all my supporters. You support means the world to me.

July 2, 2019

It's amazing to believe that almost four year years ago, my friend Cathleen (Walsh) Fox donated her kidney to me, likely saving my life. Thirty-four years after my life changed forever.

It began one Sunday back in 1981 when I was rushed to our local Mercy Hospital Emergency Room (ER) in Rockville Centre, NY. Within minutes I was sedated hoping to halt the violent grand-mal seizures that could harm me causing brain damage, if they continued. Soon after, I was placed on peritoneal dialysis attempting to save my life. They attempted to lower my blood pressure to no avail.

The peritoneal dialysis fluids were flowing in, but none were coming out, worsening my condition. I drifted into a coma and during the night an emergent surgery took place creating external access and hemo-dialysis commenced soon after.

That was quickly switched to hemo-dialysis once surgical access was obtained. and peritoneal dialysis as a child back in 1981 and again in Jan 1992 (25 yrs old) prior to my second living transplant.

In the late 1970's through the mid 1980's hemo-dialysis machines were rarely used and health professional were not competent using them. Not surprisingly, patients like me suffered but they were making attempts to save my life. A few years earlier, I would have died in a local hospital. I was the only patient on the dialysis machine in I suffered terrible effects and was not going to survive without a kidney transplant. These were considered experimental in children

Both of my forearms were used for hemo-dialysis access and my abdomen was used for peritoneal access.

Over the years I underwent renal transplant surgeries donated from four living family members (1981, 1992, 19990 and a non-related friend who had a close MHC-Class II donor match.

More recently, I underwent several abdominal procedures and a laparoscopic cholecystectomy (laparoscopic gallbladder removal).

Prior dialysis access and adhesions and scar tissue formed following abdominal procedures and surgeries did not allow hemo or peritoneal dialysis to be a viable option for me. The antibodies produced by our immune system in response to each blood transfusion (packed rbc) and especially after each organ transplant causes antibodies to be formed, thereby decreasing one's ability to accept and keep a future transplants unless a very good match is located. Thankfully, I was fortunate to have found such a match when an Irish friend decided to get tested.

We underwent our successful kidney transplant in early Aug 2015.

July 2, 2019

Next week I am undergoing my 9th Moh's surgery in 2019. These are aggressive cutaneous squamous cell carcinoma's. Due to the invasive nature of my skin cancer, I am at a heightened risk of metastatic disease. I have several Moh's surgeries involving my foot, ankles and lower legs causing severe pain and immobility. I required a Home Health Aid (HHA) for the first time in my life because my mother has always been my primary caretaker.

My mother, who is known as Bebe (short for Bernadette) has witnessed too much pain and suffering through the majority of my life and with my elderly father's health issues, I felt she had enough to bear. I had a terrible experience where my HHA, where they rarely showed up on scheduled visit dates. I was in severe pain, alone and could not get around my apartment. Today is July 2, 2019 and I underwent my Moh's surgery on my right foot on Jan 30, 2019 and the area is still open, requiring dressing changes twice each day.

April 18, 2019

Getting ready to see my Surgical Dermatologist @ NYU Langone for treatment of my catastrophic skin cancer covering all sun-exposed areas of my skin. Over the 20+ years of battling catastrophic squamous cell skin cancer (SCC), I've endured unimaginable pain and immobility due to the extent of the lesions removed. My skin cancer began after 16 years of immunosuppressant medications. In the early days of transplanttion, the doses used are now known to have been dangerously too high. I was just 15 years old and was treated with high dose steroids, monoclonal antibodies, and other immunosuppressants at terribly elevated doses.

The early 1980's was early in the field of transplantation. There was no wait list for a specific organ. My only hope was a parent. I also had a brother and sister but they were 13 and 16 years old.

This was very early in pediatric transplantation and I've been dealing with the consequences including my severe, invasive SCC, bone marrow failure, multiple episodes of sepsis

For reasons not understood, many of my aggressive skin cancers are located on my lower extremities, ankles, and feet which add to my pain and ability to wear shoes and get around.

Many of us know what a blister feels on the foot, but the size and depth of my skin cancer are often between the diameter of a golf ball and an apple- exceptionally large when located on the foot or ankle. Currently, I have two large open post-Moh's surgery site located on the top of my foot (dorsal) and the front (anterior) of my lower leg, above my ankle.

These cannot be closed primarily due to the size but instead, are covered with a type of skin graft.

Post Moh's surgery sites that are too large to close and are often covered with a sterile, porcine skin graft (acellular pig skin). This is used as a sterile dressing to allow protection of the deep, open, raw surgical site an allow healing to begin. These often take 5-8 months to heal.

Wish me luck today at my visit where I have four new lesions I need Dr. Carucci to evaluate. He will likely biopsy a few lesions located on my back, shoulder, legs, feet and toe. Dr. Carucci may attempt to treat a few areas with liquid nitrogen as a first step and biopsy the lesion if it recurs at my next visit. Unfortunately, I endure painful skin treatments and/or Moh's surgeries every three weeks and my skin cancer is still not under control.

Link to NYU Langone Surgical Procedures for Basal & Squamous Cell Skin Cancers: https://tinyurl.com/y3mhyw8u

May 4, 2016

Thank you to all those who have supported Betsy over the past year! Your prayers, good wishes and donations have allowed her to recover from her 4th transplant and continue to gain her strength.

I would ask that for a special prayer intention today as she is having gall bladder surgery today which we hope will resolve the pain she has been experiencing from gall stones.

Thank you again for all your support!

Courtney Brennan

December 19, 2015

By mid December 2015, my shortness of breath symptoms began to improve. I had developed several painful infections and ulcers caused by over immunosuppression.

After following up with my transplant team and re-adjusting all my immunosuppressant medications, my body's immune system was strengthened a bit and was able to slowly

begin healing. This past week was less painful and I was able to get out more.

Thank you to those of you who read my site and have contributed to help with my out of pocket medical expenses. Each contribution is greatly appreciated.

Wishing you all a Merry Christmas, Happy Holiday and Happy Healthy New Year!

December 19, 2015

Christmas and New Year's 2016 is soon approaching and I have much to be grateful for this year!

I was very fortunate to have family, friends and altruistic (strangers) that offered to be tested as possible donors. I had antibodies to all tested except one person who ultimately turned out to be my ideal kidney donor.

My donor was in the hospital for three days and stayed local in NYC for the remainder of the week before heading home with her husband and child to Ma. She slowly regained her strength and returned to work within three weeks,

Today, just over four months after the transplant surgery, I am still regaining my strength and stamina. My new kidney has functioned well since surgery. I've had multiple effects due to long term immunosuppression which slowed m recovery.

Initially, I was severely anemic which lasted for approx 2 months. Next, I suffered from lack of immune cells, white blood cells. This was treated with injections of neupogen which caused painful bone pain, but repaired my decreased immune cell counts.

Over recent months, I dealt with significant shortness of breath that adversely affected every activity each day. I was tired and breathless with the slight bit of activity. After three months my symptoms of shortness of breath seemed to begin to improve. I started walking a few blocks but was still not strong enough to live alone in NYC.

By the end of Oct. 2015, I decided it was time for me to return living in NYC. The first few weeks were very difficult and my family was still helping me with necessities, food, and wash. I slowly began doing a bit more but would find myself very short of breath needing to take a cab a short 3-4 blocks to my home.

November 24, 2015

With Thanksgiving soon approaching, I have much to be thankful for this year. More importantly, I have so many individuals to say 'Thank you' to.

Many of my family, friends, friends of friends and others whom I have never met showed their support by donating to HelpHopeLive.org (HHL) helping with my ongoing medical costs. These additional medical and prescription costs have been an aspect of my life for more than 34 years and the HHL donations have been a tremendous help this year. I will be forever grateful to all donors.

Many others who were tested offered the greatest gift of kidney donation. Initial immunologic eligibility testing and follow up steps involved for organ donation took time and effort from each of your lives. My expressing words of thanks will never express the gratitude I feel to all who offered to be tested, providing me the chance of a future. My gratitude extends to each of you whether or not you were eligible for organ donation testing.

*Donor testing for organ donation is always anonymous. Unless you personally informed a family member or me that you were tested, I have no way of knowing if additional people were tested as possible organ donors.

My kidney is functioning perfectly, for which I am overjoyed with gratitude to my donor, Cathleen Fox.

Today, 3 months + 2 weeks post transplant, my new kidney is functioning perfectly! I continue to struggle with lack of energy and adverse effects of my multitude of medications but with time, these negative effects will improve.

I want to thank each of you one day soon, once my stamina and strength resume.

This Thanksgiving remember what is most important in our lives- health, family, love and health.

Wishing each of you and your extended families a Happy Thanksgiving.

I was one of the fortunate ones. Please spread the word on the importance of organ donation.

September 18, 2015

After I had my post- op visit with my transplant surgeon yesterday, I walked over to The Rogosin Institute with my cousin, Donna for my 2nd of 5 total iron infusions.

My transplanted kidney is functioning well but I continue to struggle each day with a variety of issues.

My transplant team reminds me that I've been through a lot and this is not my 2nd, or 3rd transplant, but my 4th. My physician spoke about the countless physiologic feedback mechanisms, hormonal and bone marrow communicationswith my new kidney that my system is still learning. Also, that I am immunologically fragile, due to treatment with high dose immunosuppressants and steroids for decades- the majority of my life. For much of this time, doses used were very high, believing that it was necessary to prevent organ rejection. Today, doses are just a percentage of the doses used on me & all transplant patients decades ago. The transplant doctors admit to me that they did not know the correct doses to use many years ago, now they know it was too much. They learned a lot from pioneering patients such as myself who lived through it.

My transplant team tells me that I am immunologically fragile. They need to be particularly careful of the type and dose of immunosuppression used.

Currently, I require iron infusions because I've been suffering from symptomatic anemia, not corrected after monthly infections of Aranesp, a red cell stimulating hormone. I suffer from terribly uncomfortable shortness of breath with high pulse and low blood pressure, making it challenging to walk & breath simultaneously. Thankfully, yesterday I felt a little improvement.

Today has been difficult. I find that if I consume lots of fluids during the first half of the day, the later half is a bit better.

I usually try to go for a walk each day with whomever is with me during the day.

This Friday, 9/18/2015, I have appointments with my transplant team and my anesthesia (pain) physician. I'm also receiving the 3rd of 5 total iron infusions. I need iron via intravenous route due to my very low iron levels were 10%of normal and you need iron for correction of anemia.

I continue to do weekly injections of Aranesp, to stimulate red blood cell production from the bone marrow.

Thank you for continuing to follow my hopehelplive page. Please feel free to Share and/or Forward Link with your circle of friends, family, work colleagues and followers on Social media sites.

Thanks for all your inspiring and warm wishes on the road back to health!

September 15, 2015

Yesterday, I had my post-op check with my transplant surgeon, Sandip Kapur, MD @ NYP/ Weill Cornell.

Dr. Kapur was satisfied with my progress thus far, though he realizes that I have have a way to go.

He wants to see me again in 4 weeks.

August 11, 2015

We're so elated & grateful to announce that Betsy received the life-saving gift from her friend & living kidney donor Cathleen Walsh Fox. The transplant surgery took place this past Thursday, 8/6/2015 @ NY Presbyterian/Weill Cornell. Cathleen is an amazingly generous & courageous friend that saved Betsy's life through her profound gift of life.

We are so thankful Betsy's donor Cathleen Walsh Fox came through her surgery with no complications and was discharged within two days. Cathleen is staying in NYC until her post-op visit on Thursday, 8/13. Praying that Cathleen's recovery continues to be smooth and that she is feeling herself very soon.

Betsy is still in the transplant unit of NY Presbyterian Hospital. She will have a long recovery from the transplant surgery and is still in a lot of pain which hopefully will get better with time. Since this was Betsy's 4th transplant, her surgery was a lot longer and complex. She also is on heavy doses of immunosuppressive drugs to prevent her body from rejecting her new kidney. With her compromised immune system, she is more vulnerable and therefore has to take a lot of new medications to prevent her from contracting any infections.

The great news is that her new kidney is doing it's job & started working immediately!! Her medical team is keeping a close watch and monitoring all her levels as the next few days/weeks will be very important. Praying that her pain becomes more manageable & that she is stable enough to come home soon.

Words of thanks are not sufficient to express our gratitude to Cathleen for her selfless gift to Betsy. She is our angel that made the incredible decision to donate to Betsy and give her the chance of living life with renewed energy and strength. We look forward to Betsy being able to do more as she continues to recover and feel better.

We are also humbled by all those who have kept Betsy in their prayers as well as all those who have contributed to her HelpHopeLive fund. Thank you so much for all your love and support!

July 22, 2015

The big day is now just two weeks away. I have lots of mixed feelings but overall they're dominated with pure joy & gratitude to my donor. I hope & pray that my kidney donor and her husband & daughter are comfortable and able to enjoy some of their time in NYC while Cathleen is recovering from surgery. I'll be in the hospital a few extra days and unable to check in, but my family and friends have offered to help make my donor's entire family week in New York City as pleasant as possible.

Thank you all for your generous donations to HelpHopeLive. Every dollar donated is a tremendous relief.

July 2, 2015

Yesterday I had a f/u app't with my dermatologist who specialize in treating transplant patients with difficult to treat skin cancer.

Tomorrow, 7/2/2015 I have a follow up appointment with my transplant nephrologist, David Serur, MD.

I still need to have laboratory tests to confirm that my labs are safe enough to make it through July without needing dialysis. Thank you all for your continued support!

June 29, 2015

My 4th living related renal transplant is now ~5 weeks away. I have lots of emotions and challenges before then. I feel overwhelming gratitude for my donor- a friend who offered to be tested and was completely surprised to find out that she was a very good antigen match.

Cathie was the only person whom I did not have antibodies against, after more than 35 friends, family and altruistic donors stepped up to be tested.

Thank you to all for your contributions and support throughout this process. I have many challenges ahead, but am fortunate to have special connections in my life who make it all worth it.

June 9, 2015

Thank you to all my supporters! I am very fortunate to have many friends, family and altruistic individuals who've read my story and want to help in some way. I feel blessed.

My transplant surgery date is scheduled on Aug 6, 2015. I visit with my transplant nephrologist this Thurs. 6/11/2015 and will have labs drawn. The laboratory results determine if I'll need to begin dialysis in the very near future,prior to my transplant date.

I've always been against dialysis primarily due to my horrific memories and negative effects of the process when I was a young teenager, in 1981 and 1999. I've been told that the process is very different today.

Please say a prayer wishing that I can remain healthy enough to sustain the upcoming 8 weeks without requiring dialysis.

June 3, 2015

I'm so excited to let you know that a kidney donor match has been found and most important is that she has agreed to donate to me!! Keeping me off dialysis and saving my life!

Transplant surgery date scheduled for Aug 6, 2015 @ NYP/ Weill Cornell.

June 3, 2015

I had a long day at my skin physician app't yesterday. I arrived @ 10:30am and arrived home @ 6pm. I went for UV red Laser light therapy with prior levulan absorbtion. The levulan treatment is taken up by the rapidly dividing cells to allow the UV rays to penetrate and destroy these cells.

Te light therapy gets quite uncomfortable, but is over after several hours. Following the process, it has has no long term lingering effects. UV light therapy is used as one modality along with an array of other treatments to deal with my skin skin cancer.

June 2, 2015

Dear Friends,

Great news: One very generous person has offered to donate a kidney to Betsy! The donor is a terrific match - the right blood type and a 5 out of 6 antigen match. Her altruism came at a crucial time because Betsy's kidney function has deteriorated to a dangerous 13%. We are all so grateful for the compassion of this donor.

The transplant date is set for 8/6!

If you can, please donate to Betsy's campaign. Financial support is essential to ensuring a smooth transplant experience for both donor and recipient.

Many thanks.

May 30, 2015

On Tuesday evening May 26, 2015, I picked up the phone and found out that a friend whose donor testing began months earlier, told me that she has decided to donate her kidney to me! After many tests and trips to NYC from Mass, she has decided to be my living direct kidney donor.

This most recent setback process has taken about six months and I've been fortunate to have ~35 family members, friends, friends of friends, and altruistic donors offer to be tested as a possible kidney donor for me. Due to my renal multiple transplant, and countless blood transfusions, I've developed very high levels of donor specific antibodies (DSA). I was informed that I had developed antibodies (DSA's)to 96% of the general population, lowering my chances of finding a kidney donor to just 4%.

I've lived most of my life with a transplant, totaling 34 years, since I had turned 15 years old.

Each of my three prior family related transplants (81,92,99) lasted between 7-16 years.

God bless my donor, Cathy and all living donors who've stepped up to be tested saving lives and lessen the financial burden placed renal patients and out families

I've been single and independent my entire life. Though in recent years, it has been much more challenging with little energy, mounting medical bills, and endless amounts of insurance paper work to get through.

I feel blessed to learn this week that a good friend had chosen to donate her kidney to me. Overjoyed with gratitude!!

She is a very good match (5 out of 6 antigen) and I could not have asked for a better match.

Cathy is married, has one young child, and lives ~five hours away in Ma. Our living donor surgery will take place in early Aug 2015 @ Weill Cornell Medical College, NYPH.

Follow me on Facebook @ Betsy Needs a Kidney (Community page) on twitter @SaveBetsy

May 22, 2015

Memorial weekend 2015:

Last month while at my Transplant Nephrologist for my monthly appointment, I was informed that a donor match had been found for me. One of my five donors participating in the Paired Donor Exchange was a very god match for the recipient in the Paired Exchange.

My sister was with me and we were shocked and confused when we learned that the recipient in the "pair", turned down my potential donor. The donor was a very good match for me and was approximately ten years younger and otherwise in good health. That's all I was told.

All my donors ages range between 47-55 years old and are healthy with normal renal function. Could their recipient have been a young person and therefore 47-55 seems "old"? We will never know but I know there are many praying for me that a donor match will be found. I am getting sicker and each day is more difficult, but I remain confident that a donor will be found before I require dialysis.

Please consider organ donation or you may help by supporting me via http://tinyurl.com/lngec6q

Thank you for your continued support.

May 9, 2015

I've had a very difficult time locating a donor match due to my high antibody count, but I feel very fortunate that many family members, friends & altruistic donors stepped up to be tested to save my life.

To all the Mother's who are offering to help me- thank you for your support. Wishing you all a very Happy, & Healthy Mother's Day!

May 5, 2015

Please check out Betsy's Blog to Share with your friends/ family who do not use or have access to Social Media.

https://betsyneedsamiracle.wordpress.com/

May 1, 2015

Yesterday at my appointment with Dr. Serur, I explained to him that my worsening symptoms have been making each day more difficult. I am participating very little in life because I have no energy. I'm very tired with little stamina, every day. Each small task is a huge effort.

This is the 3rd day that I've had my vacuum out. I become breathless vacuuming, or just going to the food store to pick up a few items.

I received a lab results from yesterday and learned that my renal function is continuing to decline. All my docs can offer at this point is to encourage me to stay hydrated. Keep drinking water.

I hope & pray that a kidney donor is found in the near future so I can get back to living!

May 1, 2015

I visited with Dr Serur at the Rogosin Institute yesterday, 4/30/2015. He explained to me that there was a donor match for me in the Paired Donor Exchange program located somewhere in the US. Unfortunately, for reasons we will never know, the recipient turned down my donor and the process fell apart, this time.

One of my 6 donors who entered the donor exchange for me was compatible with the paired recipient, and she/he turned my donor down. Was it age? Possibly the recipient was a young person- 20's? This is all speculation but it was positive moment hearing that there was a donor found who I was nit sensitized to.

April 22, 2015

The top 10 States with the Most Patients Awaiting Transplants.

NY State is #6. See where your state ranks:

http://tinyurl.com/nv9b9bg

April 22, 2015

Kidney paired donation (KPD) is a transplant option for candidates who have a living donor who is medically able, but cannot donate a kidney to their intended candidate because they are incompatible (i.e., poorly matched).

Is it right for me as the donor or recipient?

Watch the video series @ http://www.unos.org/donation/index.php?topic=kpd

April 22, 2015

Waiting is tough. Cornell has entered me into the Paired Donor Exchange and at the same time has paused testing additional donors. I've been fortunate to have ~30 friends/ family and altruistic donors get tested but I have had antibodies to all causing them to be ineligible. My elevated antibodies, also names "sensitization", were caused by many blood transfusions throughout my lifetime and multiple (3) renal transplant. Each being a foreign tissue, the immune system performs as it should and produces an immune response, which includes producing antibodies. This usually help the body ward off initially foreign tissues, if it ever appears again. These foreign tissues include antigens, on immune cells, which are involved in transplant matching.

April 15, 2015

Here are a few links to spread the message::

1. Community Facebook site-http://tinyurl.com/pbpxjhp OR https://www.facebook.com/pages/Betsy-Needs-a-Kidney/380326972132120

2. BLOG - https://betsyneedsamiracle.wordpress.com/

3. Twitter @SaveBetsy

4. HelpHopeLive- non-profit set up by a good friend to help solely with out of pocket medical costs. https://m.helphopelive.org/campaign/5860

My friends still hope to make a video sharing organ donation facts for YouTube.com postings. Additionally, Share links on all social media sites including: + Google, Pinterest, LinkedIn, along with those we are using: Facebook, Twitter, and a website.

THANK YOU to all of you who donated to HelpHopeLive on Betsy's site. There is need for additional funding and all donations are greatly appreciated!

April 14, 2015

I'm so excited and thoroughly grateful that my HelpHOPELive campaign page reached the goal set by HHL of $10k. As an award, they've added an additional $1k to my total funds allowing me to cover more out of pocket prescription costs, physician visits and ongoing procedures.

Thank you!

April 14, 2015

Thank you very much to all of you who have donated to HelpHOPELive.org (HHL). I've been reimbursed for medical bills paid and for countless out of pocket prescription costs.

HHL has removed stress from my life. Having been a transplant patient with multiple chronic illnesses for >33 years, filling prescriptions and visiting with physicians is a normal aspect of my life. Each day, multiple medical bills arrive in the mail and knowing have some assistance to pay these, is an enormous help. Thank you very much HelpHOPELive & to all my donors and friends!

April 14, 2015

I had a f/u appointment with my primary care physician @ NYP Weill Cornell. She had read through my records during recent months but I had not seen her since I first found out that my kidney was failing and I would need another transplant to live. I last saw her in Nov 2014, approximately 5 months ago. Dr. Meltzer agrees that any willing and able donor should be tested ASAP though Cornell's transplant team has paused for a few months to give the Paired Donor Exchange an opportunity for a positive result....a match. I was willing to believe that the donor exchange with increase my pool of eligible donors.

I hope that as time passes, others will consider/ or reconsider organ donation and be willing to be tested once Cornell begins the process of testing willing donors once again.

March 25, 2015

Thank you to all of you who have signed and sent encouraging words on my HHL Guestbook site!

March 4, 2015

My sister Courtney- Type O and my cousin Joanne, Type B and myself have an appointment on 3/10/2015 with Dr M.Dadhania, Transplantation Nephrology to get information on and sign legal forms to officially enter the Kidney Donor Exchange. Once this I set up, additional donors will be able to step up to be tested for direct donation testing.

Each of those whom I have antibodies are eligible to enter the Donor Exchange, but are under no obligation to enter the exchange.

We are still hoping that a direct kidney donor match will appear in the coming weeks. It happened once before, so we pray that it can again.

March 4, 2015

Betsy just had painful surgery on her feet to remove cancerous lesions. She is healing well and still hopeful that a compatible kidney donor will be found! We love you, Betsy!

February 26, 2015

Tomorrow, 2/26/2015, I am scheduled for continued follow up after five excisional biopsies performed two fours weeks ago. Last week, I underwent ED&C (electro-desiccation and curettage) on lesions on my left foot and wrist; others areas require further treatment to remove the aggressive nature of pathology results.

J.A. Carucci MD, PhD will perform Moh's surgery on my dorsal (top of) my left.foot. Additionally, he'll treat my 3rd toe lesion and medial ankle.

The foot is very sensitive and these excisions are each performed under local anesthesia administered via injection.

Thank you for your thoughts & prayers. Also, for your contributions to HelpHopeLive.org

February 13, 2015

Thanks for all your positive thoughts & wishes! Also- for contributing to HHLorg to assist with my ongoing medical costs (physician/ prescription /procedures /surgeries).

Next week I have a few appt's:

Dr. Russell MD- @ HSS- Rheumatology f/u

Dr. Serur MD @ Rogosin Transplant Nephrologist. To get updated info on testing and decide if more donors should be tested.

Dr Carucci- MD, PhD. NYU skin cancer treatments

February 4, 2015

Update- renal transplant app't tomorrow, 2/5/2015 @ NYP Rogosin Institute @ 505 E. 70th St with my transplant nephrologist- David Serur, MD, Medical Director, The Rogosin Institute Transplantation Program

Associate Professor of Clinical Medicine, Weill Medical College of Cornell University

Associate Attending Physician, NewYork-Presbyterian Hospital/Weill Cornell.

I met Dr. Serur when he was a young fellow in 2001-02. He was a board certified nephrologist completing his final training in transplant medicine at NYP Hospital, now known as NY Presbyterian/ Weill Cornell.

January 6, 2015

Having additional laboratory tests performed on 1/6/2015. Also, blood drawn to to stay active on the Wait List for cadaver organs. It's a last resort but I must be active in all available options. Ex- Live direct donation, cadaver donation, and Paired Donation.

Read more about Paired Donation @

NYP/ Cornell- http://tinyurl.com/n47jqbc

NYP/ Columbia- http://tinyurl.com/mlmasm9

January 4, 2015

2015 just began and I've been fortunate to have several friends & friends of my family members who've been tested as a possible kidney donor.

Unfortunately, I am sensitized to family and all other individuals who've been tested thus far. I have slim odds of locating a donor and the only way to increase my chances is by having more family willing to be tested. Alternatively- have as many from the general public that are willing to help increase my odds. Thank you for considering organ donation.

December 17, 2014

Earlier today 12/16/2014, I had an appointment with Darshana Dadhania, M.D., @ NYP/ Weill Cornell- Department of Transplant Nephrology.

DR. Dadhania's specialty is immuno-genetics and focus is high risk, difficult transplant cases, which usually include re-transplant patients. I fall into this category.

My mother and I learned a lot of additional information regarding non-ABO compatible (blood types) transplant versus non- HLA compatible transplant success. Based on multiple lab tests, the team caring for me knows that I have antibodies against 94% of all people in the USA. A very discouraging case, but my match may exist somewhere, we just need more people & family agreeing to

Dr. Dadhania repeated several times during our over 2 hour discussion that my priority needs to be informing more friends/ acquaintances/ public and family members that I depend on additional family agreeing to be tested to be tested to help me. More specifically, we need additional close and distant family members to be tested. This offers me the best chance of a ABO and HLA antigen match for long term success. This is likely my last transplant and I'm not willing to give up yet.

How to do this? I do not know.

December 12, 2014

So happy to let you know that a cousin has decided to be tested as a possible donor. Initial Tests take place tomorrow (12/12/2014) @ NY Presbyterian/ Weill Cornell, Starr 8.

She's beginning Step 1 of tests checking for sensitization and to check if I have antibodies against her MHC Class I & II antigens in the morning.

December 6, 2014

Transplant Nephrologist appt on 12/4/2014, one month after registration to be listed as a transplant candidate. Courtney came with me to my appointment.

Had all our questions answered regarding donor testing and any max on number of donor allowed. An In depth explanation of immunosuppression required for 4th transplant and involvement of high sensitization due to prior transplants and PRBC transfusions.

Mutiple O type donors may enter Donor Exchange where only 1 of all other types may enter per recipient. Also brought up immmunosuppression used today and what options were available in addition to other tried in years past.

Lastly- spoke about direct non-ABO compatible transplants and realized it can't be an option fro me due to the increased dosing of immunosuppression required well above that needed for 4th transplant patients. Non-ABO compatible donor with multiple MHC Class II antigens ,atch may only be considered for Donor Exchange due to my catastrophic skin cancer.

Other points to follow.

December 2, 2014

Spent Dec.1,2014 at NY Presbyterian / Weill Cornell to support my sister and my cousin entering the next phase to be considered for the donor exchange. My best option is a direct live kidney donor though we are evaluating all available options to save my life.

December 1, 2014

Hello to my Supporters:

Thank you for your uplifting, kind and supportive words! I'm so fortunate to have your encouragement and belief that I will find a kidney donor match.

Additionally, thanks so much to those who donated to HelpHopeLive.org, helping me during these challenging years.

Fondly,

Betsy

November 25, 2014

Thank you to my all my friends and family for supporting me this this challenging time.

Also, a special thanks to my TRIO Manhattan chapter family who are themselves organ transplant recipients and supporting me during this time.

Wishing you all a very Happy Thanksgiving!

Betsy

November 23, 2014

During this season of Thanksgiving we thank everyone for their support! With love, The Friends of Betsy