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July Transplant Birthdays

We are so excited for our patients who received lifesaving transplants last month!
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Serpentine trap

 

Here I am. Look me in the eyes.

You may stone me, stab me,

savor me, or surrender to me.

But look me in the eyes.

 

Life may spring at you and ensnare

around the serpentine of my ankle bells.

Come hither..

where do you go?

There is more,

these musings of my gypsy heart.

 

 

- Nomad

 


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NFT Receives Charity Navigator & BBB Recognition

We are thrilled to announce that NFT has been given a four star rating from Charity Navigator, which means NFT exceeds the standards and outperform most charities in our industry. We were also recognized as a part of the Better Business Bureau's Wise Giving Alliance, which shows NFT meets high standards in terms of governance, finances, fundraising practices, website disclosures and donor privacy.

 

At the National Foundation for Transplants, we strive to go above and beyond for our patients who are facing tremendous transplant-related costs. We are honored to receive this recognition, as we aim to meet our own high expectations every day.

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Swim: A Memoir of Survival by Bill Coon

In 1989, Bill Coon was born with a congenital heart defect. That year, he received the fourth infant heart transplant in the Midwest and the eighth in the nation. At the age of 20, his transplanted heart began to fail, and due to a lifetime of medications, his kidneys failed as well.

After he was diagnosed with heart and kidney failure, Bill unknowingly began writing his first book on July 5, 2009 when he began journaling his thoughts. These thoughts would later become a story of a young man's physical, mental and spiritual journey as he fought the clock, awaiting a double transplant and another chance at life.

Swim: A Memoir of Survival was written to provide support for individuals who find themselves faced with a life-threatening or life-altering illness. Swim was written so readers would no longer feel alone in their journey. They are given the inspiration of knowing any obstacle can be overcome.

With this idea in mind, Bill developed the Give Back Program, which donates a percentage of book sales to organizations devoted to providing support for patients battling illnesses. By combining efforts, both the organization and BillCoonBooks.com can accomplish their mutually beneficial objective--helping the greater good.

You can purchase a copy of Bill's book and help NFT at the same time! When placing your order, enter the code: NFT in the coupon code field (on the last page before submitting the order) and 20% of the proceeds will benefit NFT.

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Now what's going on?

Went to urologist July 8 and got a surprise, a test I was not expecting. Unfortunately the test went horribly wrong before it even really began. The pain was above  the 10 pain scale and doctor said that is not normal so he stopped the test. After several minutes to let the pain subside a little he came back in and discussed possible problems, but won't know further till he goes in and takes a look. So when he gets back from vacation I will be put under for this test so he can look at my bladder, get some tissue samples and tissue samples of the prostate since it is large for my age which is not normal for as he said, a young person. I will be in as much pain as I am now after the procedure is done and I am not looking forward to hat. I do not want to urinate at all for awhile!
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sunscreen

Does anyone know of a way to remove sunscreen stains from clothing?  Even better, does anyone know of a way to prevent these stains from happening?  At first i thought it was the brand and have had this problem with 3 or 4 brands now.
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June Transplant Birthdays

We are so excited for our patients who received lifesaving transplants last month! Many people don’t realize the long-term financial challenges related to transplantation. At NFT, we’re dedicated to helping patients fundraise so they can focus on their health without worrying about their medical expenses.
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five plus years

hi all:

i am a 54 year old male that had a double lung transplant in may 2006, in montreal canada.  for the most part i've been healthy now, but had a rough time just after the transplant.  i caught pneumonia in the hospital, then had "free air" in e after they inserted the feeding tube.  i was in an induced coma for about 6 weeks and lost all my mobility.

since then i've been fairly good, although not back to where i used to be.  i still have 'down days' that mostly are determined by the weather, stress, sleep and diet.

 

i now golf 2-3 times aweek{walking}, and do aqua fit and ice skating in the winter.  i am truly grateful for this transplant, as i now have 3 grandchildren and 2 great nieces and nephew.

 

my wife and i will be married 33 years this summer and treasure  each other more now.   we have travelled to both atlantic and pacific coast and to the mid-west usa.  last place to go is hawaii, [wife won't fly unless its here]. 

 

i wish all the best to everyone who had a transplant and to those that are waiting, be patient.  luckily i was 9 months from the time i went on the list until surgery.

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Not Just Another Blog.

Life is an endless ride of elevators, its not necessarily the direction your going but the ride.

Let me tell you a little bit about my situation.

 

I am currently in pre-transplant at Clarian Transplant Clinic in indianapolis. This has been a ten year battle for me. 

 

I hope to add any and all information I have.

 

Sincerely,

 

Mark

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FAQs about NFT

How does NFT work?

NFT helps establish fundraising campaigns in patient communities. Our trained fundraising consultants work with each campaign to develop personalized fundraising goals and tailored methods to raise funds. NFT also writes personalized appeal letters and works with the media to raise awareness in the community about the patient's needs.

NFT's fundraising campaigns have generated nearly $59 million to assist patients during their transplant journey, and NFT assists more than 1,000 patients.

 

When funds are raised in my community, how will that money be used?

Funds raised are placed in an NFT state fund in honor of the patient (i.e. NFT Tennessee Transplant Fund in honor of Jane Doe). 98% of all funds raised in the community will be used to pay for transplant-related expenses, such as hospital and doctors' bills, co-pays, medications, insurance premiums, and travel expenses. Only 2% is used for NFT administrative costs.

 

What expenses will NFT cover?

NFT can help with transplant costs; hospital bills and deposits; co-pays; doctors' appointments; medications; caregiver expenses; insurance premiums, temporary mortgage assistance following the transplant; travel, food and lodging expenses; and more.

 

How do I get started?

Just contact us at 800-489-3863 and ask to speak with a fundraising consultant, who will explain the process of fundraising through NFT. You may also contact us at info@transplants.org for this information. After your initial conversation with the consultant, NFT will send you a packet of information, including an application, policy agreement and other materials to begin the process.

 

Please visit www.transplants.org to learn more about NFT!

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New Transplant Drug "Nulojix" (belatacept)

"THURSDAY, June 16 (HealthDay News) -- Nulojix (belatacept) has been approved by the U.S. Food and Drug Administration to prevent rejection of a transplanted kidney in adults.

The immunosuppressant drug is among a class called selective T-cell costimulation blockers. Without immune-suppressing drugs, the immune system could recognize the transplanted organ as foreign, leading to organ rejection, the agency said in a news release.


Nulojix was considered safe and effective after being evaluated in clinical studies involving more than 1,200 patients. Common adverse reactions recorded during the trials included anemia, constipation, kidney infection, and swelling of the ankles, legs or feet, the FDA said.

The new drug, designed to be injected with other immunosuppressants, will carry a boxed warning for increased risk of post-transplant lymphoproliferative disorder (PTLD), a form of cancer characterized by excessive white blood cell growth after an organ transplant. A separate label warning will note an increased risk of other forms of cancer, as well as serious infections, the FDA said.

Nulojix is marketed by Bristol-Myers Squibb, Princeton, N.J."

http://health.usnews.com/health-news/family-health/digestive-disorders/articles/2011/06/16/nulojix-approved-to-help-thwart-kidney-rejection



http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm259184.htm

comments from Rise' "It is great to hear that this drug is now approved.
I know we have a member here who was in the clinical trial study. He was very excited to be a part to help make a difference in patients lives.

Please share this news. I will be posting this on Facebook. If you are a member of http://facebook.com/transplantbuddies please share by clicking the link that says "share".
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Boy do I need to update here!

Boy do I need to update my profile! A lot has happened since I last posted on here about my health. I had more hospital stays, one that was severe, surgeries, medication changes, finally being trained to use a cane so I can apply to more guide dog facilities than just one, doctors wanting to do more surgery, and I haven't won a lotto yet!...lol

 

Back in September I really had issues going on, but it really started in June of 20010. Kidney numbers were dwindling, pancreas function was a concern, transplant center wasn't concerned at all, but other doctors were, weight loss, fatigue, lightheadedness, lots of sleep going on along with other issues. Finally after trying different antibiotics from PCP that made things worse

I was sent o a GI doc. I almost didn't make it there I was so weak and going by myself (I do not have anyone to rely on). When I did get there and in back to the patient room, the doctor actually took one look at me and said we are admitting you. I was actually happy that someone is finally going to look into what is going on. The problem was that the hospital was full and I had to wait for a room on the transplant floor to open up, which took 4 hours.

 However the doctor that was admitting me was no longer going to see me because now the transplant center is taking over my case. I was like why now, you weren't doing anything beforehand, so why try and take credit were credit isn't due. The GI doc deserves credit for stepping forward to do something above my PCP and transplant centers slackness. Once settled test were being done, I was told my kidney was shutting down, numbers way above normal, so more test. I was told to stay in bed due to weakness and unstability while walking, which didn't stop me from going to the washroom and setting alarms off (I hate using urinals, so unclean) Doing that was a chore, but I am hard headed about using the proper facilities.

 Condition got a little worse while they are trying to figure things out, so I had to start using the urinal to my dismay and then a student doctor tells me to get up and walk around the room. I get up, the lights make me dizzy, but still try and as I try to walk back to the bed I fall and the darn student just stands there, not asking if I need help, which I did, or call for help, so I reported about that.

Anyway to cut 2 weeks plus a few days short, it was determined that I have developed an allergic reaction to CellCept/ Myfortic after 10 years of use. The doctor said this usually happens with new patients, but can happen to patients who have been on it for awhile. I was switched to Rapamune and my Prograf was lowered for a few weeks.

 Now my kidney numbers are way better than they were when I was on CellCept. I still have trouble trying to gain back the weight I lost, butalways had trouble gaining weight, I just need even more now. So far I haven't been back in the hospital which has been the longest period of time so far for not being admitted. I've gotten sick, but not to were I need to be admitted again.

 

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What A Difference A State Makes

Hi

Two months ago we moved from PA, my husband was offered a job he could not turn down in Michigan.

I lived in PA for 5 years pre transplant and every one was very supportive, here in Mi they are one of the lowest

donor states, people look at you like you are crazy and have no comment that is good.

The understanding here is "why should i give my organs for the health industry to make money"

I am shocked just wondered what everyone else thinks.

There is a man here with a daughter that needs a kidney and he is offering free hair cuts just for people to become donors on their driving license.

Maybe they do not get sick here.

In Grand Rapids the medical community has nothing for Lung Transplant patients either, I am driving back to UPMC in Pittsburgh all the time.

3 hospital could not run an immune cell function test. sad huh.

So maybe my mission is to convert MI.

Your Thoughts.

 

Gilly

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Every Little bit counts

My Name is Bryan I was told in Dec I need another Kidney Transplant. It is something I was not prepared for and I lost my job I am on Cobra but as many of you know those payments can be out of this world so I am doing some fundraising so plaes head on over to facebook and Like my page. This page is for me to pass on info and keep everyone updated on how I am doing and also to get the word out on how many people in the US are affected by Kidney Disease and what you can do to help. With the help of my good flamily friends we are also planing a fundraiser and more info will be posted on how you can get involved

 

Please Like my page and Know every Dollar counts!!!

http://www.facebook.com/pages/Bryan-Dooses-Kidney-Transplant-Fund

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I need everyones help on getting my Transplant

Hi everyone my name is Ted I'm 42 and waiting for a Pancreas Transplant. I wanted to ask for everybody help We have been challenged from a large Company here in Indiana. We been asked not to give out the name of them until after the challenge. They have told us that they will donate up to 1.00 per person that "Likes" our cause. We have accepted the challenge and we hope that all of you can also help. We have until June 4 2011 to complete this and we are looking to get 5000 LIKES. PLEASE GO TO http://www.facebook.com/pages/NTAF-Great-Lakes-Pancreas-Transplant-Fund-In-Honor-of-Ted-Coar/217399831608258 and click on the BIG "LIKE" next to my picture and then Click on the share button below to help get the word out. If we can reach this goal then my Transplant will be paid for. So please help me and my family and you to can be my angel.
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On the kidney/pancrease transplant list.

Hello all I am a 32 year old dad of two beautiful girls ages 3 and 8. I am looking for someone who has done on or the other or both to talk to, as of right now I can't seem to find anyone to share their experience with me. Please just sent me a message. Thank you in advance for your time.
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I received a double lung transplant April 1 of this year. A few weeks ago I entered a contest on facebook to win an engagement ring for my girlfriend of 5 years. One of the administrators for this site told me to post my story here. The contest is put on by JC Penney and the entry with the most votes wins. We are currently in 2nd place out of thousands! The entry in 1st place didn't even share a story. All it says under their picture is "It is what it is."! With only a few days left we need every vote we can get to kick-start our new life together. You can vote once every 24 hours and the contest ends at 11:59 PM Eastern time on 5/12. 
To vote you can go to http://www.facebook.com/jcp?sk=app_141672109230293&app_data={%22submission_id%22%3A1972} If it doesn't take you directly to my entry please go to the leaderboard and look for "in sickness and in health". You have to "Like" JC Penney and then you can vote. THANK YOU SO MUCH FOR YOUR SUPPORT! I can't tell you how much it means to me.
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Anemia

Hello everyone Happy Mothers Day 

 I was wondering if any one had a problem with severe anemia. about 2 years ago my physical activity went from jogging 3-4 miles per day to riding a bike then to nothing. my Hemoglobin went from 15 slowly down to 9 the hemotologist started to administer 10,000 of EPO weekly until my Hgb went to 12. I was checked for all viruses CMV, Parvo and BK all negative and all done PCR and blood 1st bone marrow test showed no signs of any cancer ar any kind of abnormal activity. Once my Hgb went to 12 they stopped for a  moth it went down to 9 started 10,000 again not working increased to 20,000 count stiil down up to 50,000 no increase. went to NYU to see a professor in hemotology 2nd bone marrow biopsy same as first. recently was admitted to NY Colombia Hospital had to get 3 units of blood went back 3 weeks later 3 more units. seems losing 1 unit of blood per week The hematologist bone marrow test number 3. results were red blood cell precursors not responding to EPO. Transplant team suggested stopping Cellcept wants to raise prograf levels to 8 I was on a steady 5-6 for 7 years post transplant 2mg twice a day now after transfusions my levels went down to 4.2 on 3mg twice a day don't make any sense My cellcept has been lowered from 500mg twice a day to 250mg twice a day. This is only a guess by the doctors because of statistics. But I hope I'm risking my organs by stopping the Cellcept can anyone let me know if they have heard of this or experienced this loss of blood. every test was done 2 and 3 times to check for internal bleeding have no answers. Just feeling horrible tired of doctors and hospitals felt great for 5 years was so lucky to get the gift of life wish I could go half way back Sorry to bother because we all have some problems and if I could help in any way feel free because I have learned so much more in the last 2 years Thanks Glenn

 

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my liver transplant experience

you can see part of my story on my website and how i was before my liver transplant on www.jordandelricci.com i had my liver transplant 1-19-11 it was a rough and rocky road of recovery between them adjusting my medicine i was went back to the hospital 6 or 7 times because of infections or high levels now its almiost 4 months and everything is starting to get better and now i feel better than i ever did
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7 years post kidney transplant

I had my kidney transplant over 7 years ago. I take my medications daily & faithfully. Never miss anything. I was on dialysis for 4 years. It was not an easy road. My friend offered her kidney after watching me go through a VERY difficult 4 years.She has 3 sisters I have no siblings. She did a lot of research on the computer & realized giving up one of her kidneys was not dangerous @ all. So after she had all her testing done--we went up to Johns Hopkins Hospital in Baltimore Md. and interviewed with surgeons and doctors and she was t5old it was a safe thing to do. We went ahead with the surgery on 2-17-04....I was in & out of the hospital for 7 weeks as minor issues came up that had to be dealt with. Then I came back to Florida where we have been living for many years. I am going to a great doctor in Fort Lauderdale. Dr. Valle. Very happy with him. My numbers have been great and I am on the lowest dose of prednisone -cell cept-prograf--I am greatful for my life.
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Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at susygar@aol.com Thank You So Much!

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