Thursday, October 31, 2019

Family turns to a unique way to find a kidney donor

Family turns to a unique way to find a kidney donor

Wednesday, October 30, 2019

Teen Needs $75k to help out with Transplant Expenses

Teen needs $75k to help with transplant expenses

Sunday, October 27, 2019

Boy receives kidney transplant

Boy receives kidney transplant

Thursday, October 24, 2019

Former Pittsburg Steeler, Willie Blackwell Needs A Kidney

Hello Everyone.  Just wanted to give you all an update on my need for a new O positive Kidney.  My one Kidney function is holding steady. I still need an Kidney Transplant as soon as possible. If you see my posts,  keep sharing them with your friends and family. Also, the Kidney Donor candidate should be in fairly good health.  Go and complete Medical Questionnaire Survey for me. Also, you may call Leanne Whitehead at:404-605-4605 at Piedmont Hospital in Atlanta, Georgia. Thank you all again for your prayers, and continue to share our information so others may help me find a new O positive Kidney. With all my Love, and God Bless.  Willie Blackwell.

Wednesday, October 23, 2019

Father Walks Daughter Down the Aisle After Receiving A Kidney Transplant

Father walks daughter down the aisle after getting kidney transplant

Tuesday, October 22, 2019

My Transplant Experience


I was home on an off day, April 26th, 2016. It was an ordinary Tuesday. I was puttering around on my computer, updating my social media accounts and advocating to raise awareness for kidney disease. I received a call from IU Health in Indianapolis. I had received calls from them many times before. IU was one of 3 places that I was listed for a kidney transplant, IU Health, Rush Medical in Chicago, and UW in Madison, Wisconsin. Typically, when I received calls from them, it was about testing to remain listed. I had already done my testing for the year. IU and UW accepted each other’s tests, while Rush did everything independently. This meant I was doing two compete sets of transplant testing every year. I had recently taken a colonoscopy at Rush. My driver at the last minute had bailed out on me. I was supposed to take anesthesia before the surgery and the driver would take me home. I went up to Rush and took the test anyway, but without the anesthesia. I thought this maybe the reason IU was calling me, maybe they wanted to me to take the test over. This had happened to me in the past, so I was prepared when I saw the caller id.
I had also gotten calls for a kidney two times before. Both times I was 5th or 6th on the list, was told to fast and wait, and on a moment’s notice to come to Chicago or Indianapolis. Both times I moved up the list to third, but it was just not my time. So, I was conditioned to be very patient, not to get too high or too low when I received such a call. This coupled with the fact that I had met with my pre-transplant doctor in early April, and he had told me that it would be another 2-3 years before I would receive my kidney transplant at IU.
My pre-transplant coordinator was on the phone, Kristy Williams. At first it was just some general chit-chat, then she paused. I thought to myself, here it comes, what test am I taking over?
Kristy: “We have a kidney for you.” It was my turn to pause. It is usually at times like this I say something stupid, trying to be funny, while I process the other person’s statement.
Me: “You would not kid your Uncle Jim (my advocacy nickname) would you?”
Kristy: “No Jim, can you get here by this afternoon, we’d like to do the surgery later tonight or tomorrow.”
Me: “Yes, I can, my bags are already packed! (from the previous false alarms).
I hung up in a daze and looked at my roommate at the time. “I’ll drive!” she said. All I did was talk fast and grin from ear to ear on the 2 1/2hr hour ride to Indianapolis. I was not particularly nervous until I saw the sign on the wall, “Organ Transplant.” It became very real to me then; this was really happening. I checked into the hospital, was taken to my room, a wide, odd-shaped room for people with wheelchairs. (I’m am ambulatory guy). And then the wait started. It was about 4 o’clock in the afternoon Indianapolis time. I was not able to eat and allowed to drink very little. I lay on my bed, in my gown, talking, watching tv and staring at the clock. My son, Jim arrived from Cincinnati. It was good to see him, and we talked and laughed. He helped me to relax a bit.

The Anesthesiologist came in, talked for a while, we signed papers. Dr Goggins, the Surgeon and his Resident came, we talked, signed some more papers.
Around 2 o’clock in the morning, they came for me. No mistake now, no false alarm, no bad kidney. They were taking me down to surgery to have my kidney transplant. The past swirled through my mind, the blow it was when I was diagnosed with polycystic kidney disease a few months after my father died from it, fighting to stay off of dialysis for nearly 30 years, hitting end-stage and going on dialysis, struggling to get on the transplant list, dealing with anemia many times, issues with my fistula, undergoing angioplasties for the narrowing in my fistula, to the point where a few doctors would not do the procedure and they sent to me to a surgeon they referred to as an “artist,” doing dialysis out of town, dealing with vertigo when they took too much fluid off, multiple hospitalizations every year from kidney/dialysis related issues and the general fatigue that comes from dialysis. Having my teeth pulled, stress tests, heart tests, travelling to different transplant centers, I thought of the many things I had to do to get on and remain on that list. I remember breathing hard and feeling very anxious.

For the first time, I felt fear, anxiety and a general, “it’s out of my hands now” feeling. A short prayer was said. I was wheeled through a couple of doors and into a very well-lit, bright place. Not my first time here, I knew this was the operating room. They were all trying to calm me, hooking me up to things and putting a mask over my face, monitoring me.
Voice: “Count backward from 100.”
Me: “100, 99, 98…”

Next thing I remember is being in the Recovery Room. A pleasant nurse was speaking to me calmly. I remember feeling groggy with some pain in my right hip and groin area. The transplant was a success. My new kidney had begun to work right away. No more dialysis. My rebirth had begun. They took me back to my room, back to my friends and family. I was slightly dizzy, but happy. I had been transplanted after 4 years of dialysis. Diagnosed with PKD at the age of 25, on dialysis at 58, transplanted at 62. The transplant continues to be a success. I lead a fairly normal life now. Except for an appendectomy, I have not seen the inside of a hospital as a patient in 3 years. I am a very happy Kidney Advocate. No more 3 hours every other day on dialysis, no more bleeding out or being stuck with needles. No more fatigue from the removal of blood from my body. I must take pills twice a day, and there is a cost to pay for those pills, but I’m still here. It’s a very small price to pay. I got a break my Dad and 4 other members of my family did not get. I am extremely grateful to my donor and their family. I hope I get to meet them some day. I’m doing very well with my new kidney, “Woody.” Woodrow is a family name, my grandfather’s, my Dad’s, mine and my son’s. I named him Woody out of respect for my Dad.


I am three years into my transplant now. In June of this year, I had a conversation with my transplant doctor, Dr. William Goggins. We had worked together on a webinar involving pediatric patients. He told me that my transplant was the subject of a scientific study. I was very surprised. Here is a link to the copy of that study: HYPERLINK ""
Because of the anemia that I suffered; I had been given blood transfusions on numerous occasions. This in turn caused certain antibodies to arise. The deceased donor had antibodies as well. The study stated, “…the main question was whether or not the donor’s A*24:02 was going to evoke a memory immune response in the recipient.” Apparently, my A*24:02 would react at times and at other times did not react. The big question was how it would react once I was taking immunosuppressant medications? (Page 6, under Assessment/Clinical Recommendations). It was felt it could be easily reversed with treatment. He decided to proceed with the transplant. With infusions after the transplant, the antibody profile was described as “quiescent.” Dr. Goggins was right, the transplant took. I asked him one time how he knew it would work? He grinned at me and said, “I just knew.” I’m glad Dr. Goggins was my doctor.


Be compliant. Regardless of whether you’re on dialysis or not, do whatever your doctors ask you to do. Non-compliance means no transplant;

Get listed. It is very, very important to get on the transplant list through a transplant center. I have read cases where a potential recipient had a willing donor, but the center turned the recipient down because they had not gone through the testing to remain listed;

Consider pre-emptive transplant. If you can be transplanted before dialysis, you chance for a better and longer outcome are radically enhanced. Discuss this with your transplant nephrologist;

Do the testing and re-testing every year to remain on the transplant list. I took and Colonoscopy without an anesthetic once to remain on the list. I was transplanted a couple of months later;

Don’t get discouraged by bumps on the road. You will have periods of time where you are put on hold for a transplant. There will be delays waiting for test result, either for yourself or for your potential live donor. You may very well have false alarms. You may be called in or told to fast and wait for the “The Call” only to find the kidney went to someone else. This means you are high up on the list and you will eventually get “Your Call.” Sometimes kidney transplants require great patience. Don’t get too high, don’t get too low, stay on an even keel. Your time is coming.

Work hard to obtain a live donor. Talk to your family, friends, work buddies, church goers, wherever your social circles are. Express you need for a transplant. Put signs on your car, use social media, put up a billboard. Whatever you need to do to get the word out. Enlist your army of supporters to put notices up on bulletin boards, do an interview with a newspaper, go on tv or radio. Make you need and desires known. Do not give up if this does not happen right away. This is a process. Sometimes, when you least expect it, your transplant falls into your lap. Remember my doctor telling me that I may have to wait 2-3 more years, and later in the same month, I got the call. This was completely unexpected, even though I had a couple of false alarms beforehand.

Make sure you are insured and financially healthy to avoid the pre-transplant deposit;

Make sure you avoid people who are ill or could pass communicable diseases, any infection could delay your transplant.

Links to other tips:


Saturday, October 19, 2019

Rockin for Ryleigh

Rockin for Ryleigh

State rep Mitchell donates a kidney

State rep Mitchell donates a kidney

Friday, October 18, 2019

Dr Goggins Study

Case 4
Solid Organ, Deceased Donor: Kidney

Reason for Presentation:
This case is an example of transplanting a high PRA individual with historically positive Donor Specific Antibody (DSA).

Age: 61
Gender: Male
Ethnicity: Caucasian
Diagnosis: Autosomal Dominant Polycystic Kidney Disease

Clinical History

61 y/o male who presented for transplant evaluation in October 2012.  The patient has been followed by his local Nephrologist for years with the diagnosis of Polycystic Kidney Disease.  He progressed to End Staged Renal Disease and initiated hemodialysis in August of 2012. His Father had Polycystic Kidney Disease and died at the age of 63 on hemodialysis.  His past medical history includes hypertension, diverticulosis, cholecystectomy, and bilateral hernia repair.  He is currently on the list for a deceased donor kidney transplant in Wisconsin and Chicago.  He wished to be listed as well in Indiana.  

Sensitization History

Organ Transplant: none
Transfusion Hx:  Multiple
Pregnancy: n/a

HLA Testing

Technologies/Tests Used

HLA Class I typing by CDC, HLA Class I and II typing by SSO
Antibody Screen by Flow Cytometry
Antibody Identification by Single Antigen Beads (SAB) to HLA Class I and Class II
Flow Cytometry (FCXM) T and B cell Crossmatches

Pre-Transplant: Recipient Testing

At our institution, Recipient HLA Class I, low resolution typing, is performed by CDC method. Recipient typing at the C locus is not routinely performed.

Recipient HLA Class II (DR/DQ/DRB345), low to medium resolution typing, is performed by SSO method using Labtype® from One Lambda. Recipient typing at the DP locus is not routinely

In October 2012, the recipient was evaluated to be listed for kidney transplant. The Recipient Typing is shown in Table 1.

Table 1. Recipient Typing by CDC and SSO Methods













Recipient Antibody Testing:

The initial screening method to determine the presence/absence of HLA antibodies is by FlowPRA® from One Lambda.  Single antigen beads (SAB) using LabScreen® Single Antigen from One Lambda for antibody identification is performed on all recipients with positive Flow Screens.  All samples used in SAB testing are dithiothreitol (DTT) treated to eliminate the possibility of prozone issues.  After the recipient is listed for Kidney Transplant, PRA is followed quarterly, testing is determined by algorithm and performed by FlowPRA® from One Lambda, LabScreen® PRA from One Lambda or by CDC technique.  SAB testing is done every 6 months unless otherwise indicated.

FlowPRA detected 42% Class I antibody and 69% Class II antibody.  SAB testing was scheduled to be performed on the first sample after the recipient was listed.

Summary of Pre-Transplant Testing/Clinical Recommendations

61 y/o male with End Staged Renal Disease secondary to Polycystic Kidney Disease.  Immunologically complex recipient with history of multiple blood transfusions and evidence of HLA sensitization by Flow PRA.  The recipient was listed for deceased donor kidney transplant on 12/18/12.

Antibody Evaluation While on the Waiting List:

On the day of listing, the recipient was admitted to an outside hospital with an upper GI bleed.  He received 3 units of blood during the course of that admission.  The recipient was retested for the presence of antibody with blood drawn on 01/14/13 (Table 2).  FlowPRA and SAB testing was performed.

It appeared that the recent transfusions had further sensitized the recipient when FlowPRA was analyzed.  Flow PRA on 01/14/13 detected an increase in Class I antibody, 51% compared to 42% on 10/17/12, as well as Class II antibody, 77% compared to 69% on 10/17/12.  SAB testing showed Class I antibodies (Figure 1) to A2, A23, A24, A68 and A69, and Class II antibodies (Figure 2) to DQ4, DQ5 and DQ6.

Table 2. Summary of recipient HLA Antibody Testing, and SAB antibody identification.

Class I
Class II



A2 A23 A24 A68 A69

Figure 1. SAB Testing from 1/14/13. Recipient Class I SAB results showing antibodies to A2, A23, A24, A68 and A69.

Figure 2. SAB Testing from 1/14/13. Recipient Class II SAB results showing antibodies to DQ4, DQ5 and DQ6.

Repeat SAB testing on 08/01/13 showed Class I antibodies (Figure 3) to A2, A68 and A69 unchanged, A23 and A24 were now negative.  Class II antibodies (Figure 4) to DQ5 and DQ6 were slightly decreased and DQ 4 was now negative.

Figure 3. SAB Testing from 08/01/13.  Recipient Class I results showing antibodies to A2, A68 and A69 unchanged from 1/14/13.  A23 (bead 10) and A24 (beads 11 and 12) are now negative (black circles).

Figure 4. SAB testing from 8/01/13.  Recipient Class II results showing a slight decrease in the intensity of DQ5 and DQ6.  DQ4 (beads 32, 34, 70 and 98) is now negative.

The recipient’s antibody profile remained unchanged until the recipient received another blood transfusion in May of 2014.  Repeat SAB testing on 6/09/14 showed Class I antibody (Figure 5) increases in A2, A68 and A69. The return of significant A23 and A24 antibodies, as well as new increased in A32, B51, B57, B58 and B78 antibodies.  Class II antibodies (Figure 6) to DQ5 and DQ6 were increased to similar levels seen on SAB testing from 1/14/13.  Additionally, DQ4 antibodies had increased in intensity.

Figure 5. SAB Testing from 06/09/14.  Recipient Class I results showing increases in intensity of antibodies to A2, A68 and A69.  A23 (bead 10) and A24 (beads 11 and 12) are once again significant (black circles). The are new antibodies to A32, B51, B57, B58 and B78 (red circles).

Figure 6. SAB Testing from 06/09/14.  Recipient Class II results showing increases in antibody intensity to DQ5 and DQ6, similar to SAB testing in 1/14/13.  DQ4 antibodies (beads 45, 46, 47 and 48) have increased in intensity (black circles).

When SAB testing was repeated on 5/11/15, the recipient’s Class I antibody profile (Figure 7) was similar to the 8/01/13 testing (Figure 3) with elevated antibodies only to A2, A68 and A69. The Class II antibody profile was unchanged from 6/09/14 (Figure 6), elevated antibodies to DQ5 and DQ6 and low levels of DQ4 antibody.

Figure 7. SAB testing from 5/11/15.  The recipient’s Class I antibody profile is similar to SAB testing from 8/01/13 with only antibodies to A2, A68 and A69 positive.

Deceased Donor Offer

The recipient’s antibody profile remained stable over the next year with antibodies detected to A2, A68, A69, DQ5, DQ6 and low levels of DQ4.  He did not receive any further blood transfusions.

On April 26, 2016 he received a deceased donor kidney offer. Recipient and Donor Typing are shown in Table 3.

Table 3. Recipient and Donor HLA typing. The Donor is A*24:02 a historically positive antibody


1 29
8 62



Sero Type

1 29
6 62
11 17

2 7


Sero Type

24 30
7 71
7 10
4 17

2 7
1 3

SAB testing on 4/26/16 showed the recipient’s stable Class I antibody profile (Figure 8), A*24:02 with an MFI of 610. T cell FCXM on 4/26/16 was low positive (ΔT = 58) (positive = ΔT > 50) (Figure 9). B cell FCXM was negative.

Figure 8.  SAB Testing on 4/26/16. Recipient Class I results showing antibodies to A2, A68 and A69. A*24:02 (bead 11) with an MFI of 610 (red circle).

Figure 9. FCXM from 4/26/16. Left side: T cell FCXM is low positive (ΔT = 58) (positive = ΔT > 50) possibly due to A*24:02 with an MFI of 610. Right side: B cell FCXM is negative (positive = ΔB > 150).

Assessment/Clinical Recommendations

In assessing the immunological risk of proceeding with transplant, the main question was whether or not the donor’s A*24:02 was going to evoke a memory immune response in the recipient.  Ideally, it would have been preferable to have SAB testing at the time of the recipient’s work up.  This would have shown the recipient’s baseline antibody profile prior to the blood transfusions in December of 2012.
When one looks at the recipient’s antibody profile over time, it appears that his quiescent antibody profile has antibodies to A2, A68, A69, DQ5 and DQ6 and lower levels to DQ4.  When his immune system is stimulated with a blood transfusion, he develops short lived antibody increases in A23, A24, A32, B51, B58, B78 and DQ4. He has shown twice that his immune system returns to the quiescent antibody profile around 6 months after the immune stimulating event.  At the time of the deceased donor offer, his antibody profile was stable for almost 2 years.  

The transient nature of the recipient’s A*24:02 antibody production while the recipient was not on immunosuppression suggested that the recipient would be at a lower risk for a memory response to the A*24:02 once he was immunosuppressed.  If he did develop a memory response to A*24:02, it most likely would be easily reversed with the treatment of AMR.

The recommendation was to proceed with transplant.  The low positive T cell FCXM is most likely a false positive with the MFI of A*24:02 < 1000.  The recipient will need to be monitored for the possibility of developing a memory antibody response which could cause early graft dysfunction.
Post-Operative Course/Follow up.

The transplant was successfully performed on 4/27/16.  The recipient was treated with standard immunosuppression, IVIG and Rituximab were not given.  He was discharged on POD 7.  He required additional hydration in the first post-operative month due to tremendous urine output.  He has not experienced any immunological and is more than 2 years post-transplant.  His most recent serum creatinine is 1.31 mg/dl.  SAB testing at 5 weeks post-transplant (Figure 10) and 16 months post-transplant (Figure 11) show a stable quiescent antibody profile with antibodies to A2, A68, A69, DQ5 and DQ6 and low levels of DQ4.

Figure 10. SAB Testing from 6/03/16. Top Panel: Recipient Class I results showing antibodies to A2, A68 and A69. A*24:02 (bead 11) (red circle) is negative with an MFI < 100. Bottom Panel: Recipient Class II results showing antibodies to DQ5, DQ6 and low levels of antibodies to DQ4.

Figure 11. SAB Testing from 8/28/17. Top Panel: Recipient Class I results showing antibodies to A2, A68 and A69. A*24:02 (bead 11) (red circle) is negative with an MFI < 50. Bottom Panel: Recipient Class II results showing antibodies to DQ5, DQ6 and low levels of antibodies to DQ4.

Thursday, October 17, 2019

Teacher Donates Kidney to Save the Life of his Student's Father

Teacher donates a kidney to save the life of his student's father

Willie Brown Needs a Kidney

Are you a match?  Former NFL player & community leader, Willie Brown needs a Kidney

Make A Wish Helps Child with Kidney Disease

Make A Wish grants kidney child's wish

Monday, October 14, 2019




           Can you afford a kidney transplant in America?  Kidney transplants seem to go to the people who can best afford it, are insured for it or can raise an outrageous deposit for it.  Although the rules appear to suggest that kidney transplants go to the sickest patients, the truth is, if you are deemed a financial risk, many centers require you to make a pre-transplant deposit prior to your being placed on the waitlist, and to maintain that balance until the time that you are transplanted. These deposits are not cheap.  They range from $10,000-$30,000.  For a person that is ESRD and on dialysis, who may or may not be working, this is a lot of money to raise and maintain while on that waiting list. It is my belief that this discourages people from seeking a transplant, resulting in catastrophic results.  The struggle to raise and maintain this hefty amount of money, just to get transplanted eliminates needy, sickly, yet worthy candidates.  It is grossly unfair, and inequitable.




          A recent study done by Dr. Raymond Givens and associates from Columbia University Medical Center studied transplant data from 2000-2013.  It resulted in the conclusion that people who were affluent enough to afford to be listed in multiple geographic organ transplant lists were more likely to receive organ transplants, than those who could not afford to multiple list.  Despite being less ill, the multiple listers were receiving more transplants.  For example, people living in New York, who could travel to Los Angeles obtained second listings, enhancing their prospects of obtaining an organ transplant much sooner, than someone who could not afford to multiple list.   The bottom line is that wealthier people were more likely to get transplants and less likely to die waiting for a transplant.




The study found that the medium average gross income for the multiple listers was $90,153, while the people with just one listing had a medium average gross income of $68,986. 


          Here is the point for our purposes.  If you are wealthy, you have advantages in obtaining a transplant, over the more sickly or needy.  The ability to pay for a pre-transplant deposit, or to forego that option altogether, is one of those advantages.



-In 2017 on average 12 patients die every day in the United States each day awaiting kidney transplants, more than 4,600 candidates in 2017 died while on the waiting list, or within 30 days of leaving the list for personal or medical reasons, without receiving a kidney transplant[i];

-According to UNOS, in 2018, 21,167 kidney transplants were performed[ii];

-There are over 93,000 people awaiting kidney transplants currently in the US;

-Currently, the average cost of a kidney transplant in the US is $260,000, including pre-transplant screening, donor matching, surgery, post-surgical care and the first 6 months of medications;[iii];

-Currently the average costs for anti-rejection meds for a kidney transplant is $17,000/yr.;[iv]

-The difference in cost between average costs for anti-rejection meds and costs for dialysis are striking.  Transplantation and medical care costs after the first year following surgery averaged $16,000, mostly for antirejection medication.  In comparison, a return to dialysis costs average $70,000-$106,000 per year[v].  Medicare only pays for the first 36 months of anti-rejection medications, and if you are under 65, you must have coverage or be able to pay for the medications for the life of your transplant.  If your kidney is rejected, mostly likely you return to dialysis, which is completely covered by Medicare for the rest of your life, at a higher cost. 

-A recent study has shown that there is a cost savings of between $73.4 million and $120 million over a decade by expanding payment for immunosuppressant drugs to help patients avoid returning to dialysis or undergoing additional transplants.  This savings could reach as much as $300 million[vi].



          The concern of many transplant centers is whether the patient can afford the anti-rejection medications that prevent your body from rejecting your transplanted kidney, resulting in a removal of the kidney and the patient’s return to dialysis.  Almost all of the nation’s 250+ transplant centers refer patients to a single national registry, requiring the patients to verify how they will cover post-transplant bills which can include $400,000 for a kidney transplant, plus monthly costs that average $2500 for anti-rejection medications, that must be taken for the life of your transplanted kidney.  Coverage for such medication is extremely difficult to find, less likely than the transplant operation itself. This is despite the fact that the transplanted kidneys will not last without the medicine. For this reason, kidney transplant centers have linked a lifesaving treatment to your finances.  Requiring proof of payment for organ transplant and post-operative care is becoming more and more common. Without the recommended pre-transplant deposit, the patient will not even be listed.  This is done to “prevent the wasting of transplanted organs.”  The centers are basically saying, if you wish to receive a life-saving kidney transplant, you must be able to afford it, when the basis should be if you are sick, this is your opportunity.   The problem I have is that there are many other sources of help with payment for anti-rejection meds that may go unexplored before rejecting the patient, putting the less wealthy patient at risk for his/her life. The rich have an unfair advantage when seeking a kidney transplant.




          Nearly half of the patients who are waiting for organs in America have private health insurance, while the rest are covered mostly by Medicate and Medicaid.  Medicare covers kidney transplants for all patients with end-stage renal disease, but there is a catch.  While a kidney transplant is covered for people under 65, Medicare will only cover the costs of anti-rejection drugs for 36 months after your transplant.  For this group of patients, there may be bills for            $3,000-$4, 000 a month. Recently, two federal projections demonstrated that Medicare may save money paying for anti-rejection medications for life as opposed to paying for dialysis in the amounts between $73.4M and $120M over a decade, possibly reaching $300M in that period. Legislation that would extend this time period has yet to even receive a vote on the floor of Congress. 


GoFundMe type efforts have become more and more frequent in such cases. According to CNN, about 1/3rd of campaigns on the GoFundMe site are for medical needs. Other organizations that help include HelpHopeLive, the National Foundation for Transplants and the American Transplant Foundation.  It is of note that sites like Go Fund Me may take a portion of the money raised, and it may be considered as taxable income. Special plans for payment from the manufacturer of the medications may also be available.


UNOS lists the following sources to consider:

·        Private health insurance;

·        COBRA extended employer group coverage;

·        Health Insurance Marketplace;

·        Medicare;

·        Medicare Prescription Drug Plans;

·        Medigap Plans;

·        Charitable Organizations;

·        Advocacy Organizations;

·        Fundraising Campaigns;

·        TRICARE & Veterans Administration;










There is a definite disparity that exists between the have and the have nots, when it comes to obtaining a kidney/organ transplant in the United States.  It is an unfair, unreasonable and irrational disparity that exists and is fueled by the 36 months coverage of anti-rejection medications for transplants patients before you are own your own with very expensive medication.  The immunosuppression Medicare rule must be changed.  It is unreasonable to request an ESRD patient on dialysis, who very well may be unable to work, to raise tens of thousands of dollars and to maintain that balance until transplant.  With an average wait time of 4-6 yrs. in most states and almost a 10 yr. wait in the State of California, this is an unreasonably long time to ask kidney patients to hold their breaths.  A kidney/organ transplant is a life-saving act.  This is where the true focus should be, on saving the lives of needy patients, not denying patients life-extending medications or eliminating poorer patients from obtaining the only life-saving option available.  How many kidney patients opt not to attempt a transplant solely based on costs?  How many lose their listing because they cannot maintain that required balance?  In this writer’s opinion, even just one is one patient too many.




Lupkin, Good Luck Getting An Organ Transplant If You’re Poor in America, (November 12, 2015);


Aleccia, Kaiser Health News, ‘Wallet biopsy’: Organ transplant often depends on patient’s finances, (December 24, 2018);


Aleccia, No Cash, No Heart. Transplant Centers Require Proof of Payment. (December 5, 2018);



Whitlock, Ways To Pay For An Organ Transplant Surgery,; (July 28, 2019);




ASSESSING THE COSTS AND BENEFITS OF EXTENDING COVERAGE OF IMMUNOSUPPRESSIVE DRUGS UNDER MEDICARE, U.S. Department of  Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation,, (5/10/2019);


Memo, Department of Health and Human Services, Center for Medicare and Medicaid Services, Office of Actuary, Proposal to Extend Coverage of Immunosuppressant Drugs, https://, (May 22, 2019);







[i] Email on October 1st, 2019 from Anne Paschke from UNOS
[ii] 2018 Transplants by Organ Type, Kidney, (2019)
[iii] Cost of a Kidney Transplant-Consumer Information, https://health.costhelper/kidney-transplant.html (2019)
[iv] Id
[v] Thomas, Cost of Immunosuppressive Drugs and the Patient with A Kidney Transplant,, (March 14, 2019).
[vi] A ‘No-Brainer’? Calls Grow for Medicare to Cover Anti-Rejection Drugs After Kidney Transplant,, (July, 2019);
ASSESSING THE COSTS AND BENEFITS OF EXTENDING COVERAGE OF IMMUNOSUPPRESSIVE DRUGS UNDER MEDICARE, U.S. Department of  Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation,, (5/10/2019);
Memo, Department of Health and Human Services, Center for Medicare and Medicaid Services, Office of Actuary, Proposal to Extend Coverage of Immunosuppressant Drugs, https://, (May 22, 2019);
Thomas, Cost of Immunosuppressive Drugs and the Patient with A Kidney Transplant,, (March 14, 2019).

Sunday, October 13, 2019

Bressler Accepts Award

Bressler Accepts Award

Bressler accepts award

Kent Bressler of Kerrville, a co-founder of the local group and a kidney transplant recipient himself, attended the meeting and accepted the award.

Bonnie Arnold | Posted 21 hours ago

The American Association of Kidney Patients celebrated its 50-year anniversary this fall as the oldest and largest fully independent kidney patient organization in the USA.

The organization held their highest attended National Patient Meeting and awards program in more than 10 years; and Kerrville’s own “Transplant Support Group” which meets at Peterson Regional Medical Center, was among the honorees.

Kent Bressler of Kerrville, a co-founder of the local group and a kidney transplant recipient himself, attended the meeting and accepted the award. He has been an advocate both locally and nationally for kidney transplant matters.

AAKP national awards were presented for extraordinary leadership and excellence in the fight against kidney diseases.

“AAKP National Kidney Patient Support Group of the Year” was given to the Kerrville, Texas, Transplant Support Group, and the award was accepted by Kent Bressler, co-founder of the Kerrville Support Group, and pre-emptive transplant recipient. He also serves on the AAKP Board of Directors, and as an AAKP Ambassador.

Awards are inspired by AAKP founders such as Shep Glazer, a kidney patient and former AAKP Board Member who dialyzed in front of the U.S. Congress 50 years ago to show that dialysis was a life-saving bridge to kidney transplantation and a return to the workforce. His brave act helped facilitate the 1972 Congressional passage, and subsequent signing by former President Richard M. Nixon, of legislation that created the modern Medicare ESRD Coverage Program.

AAKP unveiled “Decade of the Kidney” at its June 20, 2019 National Policy Summit in Washington, D.C.

Interest in Decade of the Kidney has accelerated since both President Donald Trump’s signing of the Executive Order on Advancing American Kidney Health and AAKP’s accompanying joint statement of support for the Trump Administration’s kidney actions by AAKP leaders, President Richard Knight and Chair of Policy and Global Affairs, Paul T. Conway.

Bressler also attended the ceremony at the nation’s capitol when Trump signed that executive order.

The meeting, entitled “Driving Innovation & Changing the Status Quo,” was held in Washington D.C., Sept. 6-8.

Thousands of patients and medical professionals engaged via live streaming and meeting space hit capacity as hundreds of attendees engaged in-person. More than 30 pharmaceutical, diagnostic and device companies and non-profits exhibited.

Participants were invited to offer recommendations for the AAKP-initiated “Decade of the Kidney,” a 10-year national and international effort starting in 2020 designed to intensify the focus of policy-makers, researchers and the private sector on a broad, patient-focused agenda targeting kidney diseases, new care innovations and an aggressive expansion of patient care choice.

“AAKP’s national strategy to improve patient outcomes, drive innovation and expand patient choice continues to produce solid results due to our non-partisan efforts to engage patients directly with key allies and policymakers at every level. AAKP national awards recognize those who share our principles and long-term mission to defend patient choice and to genuinely respect the intelligence and dignity of all kidney patient consumers,” said Knight, former hemodialysis patient and current kidney transplant recipient. Knight is also a patient engagement leader for the NIH/NIDDK Kidney Precision Medicine Project.

Monday, October 7, 2019

Family adjusts to long term challenges with their baby with kidney disease

Family adjusts to long term challenges with their baby with kidney disease

Sunday, October 6, 2019

Baby beats odds

Baby beats odds

Woman donates kidney to childhood playmate 

Woman donates kidney to childhood playmate

Boy Beats Odds

Boy Beats Odds

Thursday, October 3, 2019


Woman answers call, donates kidney to a stranger


When a woman needs a kidney,  a stranger a few streets down donates

Wednesday, October 2, 2019

Oliver Springs father in need of kidney transplant


by: Kirstie Crawford

Posted: Oct 1, 2019 / 07:30 PM EDT / Updated: Oct 1, 2019 / 07:30 PM EDT

OLIVER SPRINGS, Tenn. (WATE) — Jason Robbins was diagnosed with a genetic kidney disease in 2005, and nearly 15 years later, he is in need of a kidney transplant.

For several years, he was able to live a fairly normal life with Autosomal Dominant Polycystic Kidney Disease, or ADPKD.

In 2010, Robbins started to feel the side effects of his disease: high blood pressure, back pain, loss of kidney function and cysts covering his kidneys.

“Most kidneys are the size of your fist. Mine are about the size of footballs,” Robbins said.

He said most kidneys weigh less than a pound, while his had an estimated weight of 7 pounds.

As his disease progressed through the year, Ribbons started to have other common side effects: kidney stones and cystic ruptures.

“I’ve had 76 kidney stones in the last eight years,” Robbins said.

In February 2018, Robbins health took a turn for the worse.

Robbins went to the restroom at work and all of the sudden felt lightheaded. He fainted, hit his head on the sink and was rendered unconscious for a few minutes.

When he came to, he went to the hospital and stayed for about two weeks.

His doctor, Kendra Henson with the Knoxville Kidney Center, then told him he needed dialysis. His kidneys were functioning at 7%.

The dialysis treatments are tough make it difficult for him to keep a normal schedule. Robbins is a supervisor at Tate & Lyle in Loudon and is the main provider for the family.

His wife, Eva Robbins, is a special education teacher and, while her benefits are better than his and helps with the medical bills, she makes a lot less money.

“I don’t have a regular schedule. I can’t go to a dialysis clinic three times a week,” Jason Robbins said.

Eva Robbins, their eldest daughter Hannah and a couple of others trained for five weeks on home dialysis.

Jason Robbins needs dialysis four times a week, and each treatment takes at least four hours.

The family heavily depends on a schedule that Eva Robbins puts together.

“We have to rely on this machine to keep my husband alive, and that’s what we’re going to do,” Eva Robbins said.

Jason Robbins’ kidney function continued to decline. His kidneys, as of Sept. 26, were functioning at 4%.

“You realize just how fragile life is. Cause you can go just two days without doing something and your body literally starts to fall apart,” Jason Robbins said.

He said the constant pain and dialysis also affect the time with his three children and wife.

“A lot of times I feel like I’ve failed my family, my children, because I get sick a lot,” Jason said. “I’ll be at a function of theirs that I really want to be there for them, and I have a kidney stone or a cyst rupture or, with this disease, you just get sick.”

“We either don’t get to go (to family functions) or we have to arrive late and miss out on the family time and stuff because we have to do dialysis. I mean, that’s what’s keeping him alive,” Eva said.

Jason Robbins said he felt like his children had to grow up faster because of the disease.

Not only did Hannah Robbins have to learn how to administer home dialysis for her father, but the youngest sibling, Jonah, had to call 911 for his father.

“Jason passed out on (Jonah). Luckily, Jonah knew to call 911 … it’s just a constant worry. And we don’t really talk about the worry either. It’s just something that, you know, is always there,” Eva Robbins said.

His children also miss him at their volleyball games, golf tournaments and football games.

“Whenever we do have like events and stuff and he can’t be there, it does kind of make you upset but then you gotta think positive. And then when he is there it makes it a lot better,” Emma Robbins said.

“People don’t understand that maybe one day he might not be able to be at my wedding, or there for a while I didn’t even know if he was going to make it to my high school graduation,” Hannah Robbins said.

To enjoy life with his family, Jason Robbins needs a kidney transplant.

The Robbins family was originally told their father would only have to wait a couple of years on the transplant list.

One issue though, is that Jason Robbins has blood Type O-positive, which means he can only receive a kidney from someone who is either O-positive or O-negative.

Two people have already tried to donate their kidney to him.

He said that one person from his church went through testing for eight months.

The chances were looking good, until they weren’t. The doctors found an underlying condition making the person unable to donate to Jason Robbins.

The family recently received the bad news about the other person.

“We had a kidney donor, someone who had, just out of the goodness of their heart, decided to get tested and was a match for me. But they had a significant possibility of developing kidney stones. So they turned them down as a donor candidate,” Jason Robbins said.

He said there was a list of health issueshis donors cannot have.

“We’re very thankful for these people that have attempted to be my hero. And that’s really what I’m looking for, is a hero to help me and my family out,” Jason Robbins said.

If you want to donate a kidney to Jason Robbins, contact the Vanderbilt Medical Center and state that you would like to donate a kidney to Jason Robbins, birthday 12/24/72.

The Robbins family is also setting up several fundraisers to help pay for medical expenses.

Click here to donate to their GoFundMe.

The Robbins will have a booth at 10 a.m. Oct. 5 at the Pleasant Grove Baptist Church in Coalfield.

The family will have a booth Oct. 12 at the Coalfield Alumni Homecoming at the Coalfield School football field.

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