Terri's Kidney Transplant

On behalf of Terri's family, we are fundraising for her much-needed kidney transplant. The emotional burden of such a life-changing surgery is more than enough to deal with and we would love to be able to ease the financial burden.

The need for a new kidney came very unexpectedly and things are moving quickly. We want Terri to be able to focus on preparing for, undergoing, and recovering from this without worrying so much about the large financial strain (insurance covers a lot, but there will still be a large outstanding balance for such a big procedure).

We would so appreciate any and all support friends and family are willing to give to help Terri and Rick through this time.

See below for more info in Terri's own words:

"Those of you that know me, know that I have had some medical issues most of my adult life. You probably notice that I do my best to deal with them on my own and try to live the best life that I can moving forward...with occasional complaints You will also most likely know that I don’t typically ask for help from others and I don’t typically talk about what’s going on in my life outside of my small group of close friends and family. I now find myself in the position where asking for help and talking about what’s happening in my life could actually save my life. I implore you all to kindly take the time to read and share my story.

Back in October I had my standard yearly blood work done. That evening I received a call that the doctor had seen my glomerular filtration rate (GFR) results came in at 11. A GFR is a blood test that checks how well your kidneys are working. Your kidneys have tiny filters called glomeruli. These filters help remove waste and excess fluid from the blood. A GFR test estimates how much blood passes through these filters each minute. The normal range is above 60 with most people being in the 90% range. I was told this was a dangerous level and I was being referred to a Nephrologist for first thing the next morning. Nephrology is the special study of the kidney.

I had my visit with the Nephrologist NP and he explained to me that typically a patient at this level would be referred to dialysis asap, however, the correlating tests weren’t showing the typical levels that align with kidney disease. Though I do not have diabetes or a heart condition to be considered a cause I absolutely had an issue causing the low GFR level. He ordered a gambit of blood tests to try to find the cause and rule out other diseases as well as an ultrasound. I had the tests completed immediately. 2 weeks, 17 vials of my blood and warm jelly on my abdomen later and he was still not able to find a reason for the sudden kidney failure. He then told me to make an appointment for the Nephrologist Specialist at Sparrow and meet with him.

In my ignorance, at this appointment I was expecting to hear that though they did not have a reason for it, my kidneys were failing, and they would give me directions on how to correct the problem and get them working properly again. I felt a punch to my gut though when he said that I was in stage 5 kidney failure and that there is no cure for it. He said my options were dialysis and transplant and that I was being referred to be put on the United Network of Organ Sharing (UNOS) “registry” (national transplant waiting list) and sent to the dialysis clinic for a consultation. They would prefer I had a transplant before needing to start dialysis, calling it “preemptive transplant”, due to better outcomes from surgery and a longer life of the donated kidney. He reiterated that I would not need to begin dialysis just yet because I wasn’t having typical symptoms and my blood work wasn’t coinciding with the levels that would tell them to have me start. Thank God! I asked why this was happening, he also said he did not see an obvious reason, but that my ultrasound showed him that my kidneys were small, weak, and scarred and that was enough to make his diagnosis. I cannot quite remember much of the conversation after that. I know there were platitudes and instructions, but I must have just nodded my way through the rest of the appointment and started coming to around the time I reached my car. I just sat for a minute or 10 and didn’t know what to do…so I went to my parent’s. I told them everything I could remember and what led up to it. I think I cried a little and laughed (as I do when I’m feeling lost). I received the support I knew I would and had enough courage to then go home and tell Rick everything.

Since then I have met with the dialysis center, Fresenius Kidney Care, and have had an assessment at Henry Ford Allegiance Medical Center at the Nephrology Clinic in Jackson. Rick went with me, and we spoke with a surgeon, a social worker, and a nurse coordinator. After many, MANY questions, and loads of information from each member of my new transplant team, I was told I was a viable candidate for transplant surgery and that my case would go through to the board for approval to be put on the UNOS waiting list.

It was again strongly suggested that I try to find a living donor over waiting for a deceased donor organ because of the life expectancy of the kidney being much longer and my body managing the surgery with greater outcome.

This, my friends, is why I have come here with my story. I’m putting out a call to all to please read and share my story in hopes someone might be willing to consider testing to be a living donor. Most donations occur after the donor has died, but it is possible to donate certain organs or tissue to someone in need while still living and in the case of a kidney a person only needs one to survive. A donor would share one of theirs with me and still have one and continue living their normal life. If you don’t think being a living donor the right choice for you, please at least consider registering with your state to be a deceased organ donor. As you’ll see in the stats below they are greatly needed. I have a plethora of resources if you’d like to reach out to me, but to learn more about living donation to anyone, you can begin by visiting https://unos.org/transplant/ or https://www.organdonor.gov/. I've listed the website at the end of this post to test to be my living donor for Henry Ford (my hospital). I've also attached an informative video of the process, https://youtu.be/K4bS7YZjqhY

Following are some stats and more information about the process.

• Over 100,000 people in the U.S. are in need of an organ transplant.

• 41,354 transplants performed in 2021.

• 17 people die each day because no organ is available.

• Every 10 minutes another person is added to the national transplant waiting list.

• Approximately 90% of U.S. adults support organ donation but only 60% are registered as donors.

A living-donor kidney transplant is when a kidney from a living donor is removed and placed into a recipient whose kidneys no longer function properly. Only one donated kidney is needed to replace two failed kidneys, which makes living-donor kidney transplant an alternative to deceased-donor kidney transplant.

The first steps

Basic information.

The first step is often as simple as the potential donor giving the transplant center’s staff some basic information by phone or email or even online. This might include the potential donor’s relationship to you and some very basic medical history.

Testing

After that, if both the potential donor and the transplant center think it makes sense to continue, the living donor team will do testing to make sure that the potential donor does not have medical or other issues that make living donation too risky. Typically the patient’s insurance will cover all testing costs, surgery costs, and after care.

Education

The transplant center will talk about all aspects of living donation to be sure the potential donor understands everything in order to make the right decision.

This includes:

• Surgery

• Risks

• Benefits

• Recovery

Possible non-medical costs related to living donation, and how to get help if needed

• The importance of following up with the transplant center after donation and lifelong healthy habits and medical check-ups.

• How donating could affect a person in the future

During this time, the transplant center will not give me any information about the donor or test results. This is to protect the potential donor’s privacy. In fact, it’s possible for someone to be evaluated without me even knowing. The transplant center

will only tell me if the potential donor asks the center to let me know.

The Henry Ford Center for Living Donation provides organ donors with answers to questions about living donation, as well as support before, during and after their procedure. Our financial specialists will help living donors navigate insurance and other resources for expenses.

We will work to help donors understand the risks involved with surgery, prioritize their comfort and safety, offer robotic procedures when appropriate and acupuncture for pain control. Donors who wish to learn more about their procedure and recovery are provided learning tools via an iPad.

For those in need of a kidney or liver transplant, The Henry Ford Center for Living Donation will help navigate the delicate process of reaching out to those individuals who may be willing to consider living donation. To assist you or others reaching out on your behalf, the Center for Living Donation can help educate potential donors about donor screening and the process of living donation.

The wait time for an organ in Michigan can be as long as five years. Every living donor shortens the wait list and saves lives. In addition, living donation offers multiple benefits to the organ recipient:

Living donor transplant can often be scheduled prior to the recipient becoming significantly ill.

The health history of the donor is known well in advance, which allows significantly more screening and planning by medical staff.

Organs donated through living donation typically last longer and work immediately.

Long-term illness can have negative effects on the rest of the body. These are avoided with living donation.

Although you are born with 2 kidneys, you only need 1 to lead an active, healthy life. For this reason, it is possible to donate a kidney to someone in need.

Donating a kidney is a serious life decision. Our priority at Henry Ford is to protect your good health while minimizing risks as much as possible. We respect that you have the right to change your mind about your decision at any point during the donation process.

There are several ways to donate a kidney:

• Directed donation: You select a specific person, usually a relative, loved one or friend, to receive your kidney.

• Non-directed, or altruistic, donation: Henry Ford, in conjunction with the United Network for Organ Sharing (UNOS), arranges for your kidney to be given to someone who is on the national kidney transplant waitlist.

• Kidney paired donation: If your blood and tissue type do not match your intended recipient, the Kidney Paired Donation Program run by UNOS can help. It works by:

o Matching you and your intended recipient (Team 1) with another paired donor and recipient (Team 2) who are also not a match for each other

o Sending your kidney to the recipient on Team 2, with Team 2’s donor kidney going to your intended recipient (Team 1)

I truly appreciate you taking the time to read this and share with everyone you know. It was extremely hard for me to write this, put myself out there, accept this weakness and call out to those who will listen. I have always felt I was strong enough to get through the hard times myself and feel I have been in most cases, but in this case, I must admit that it is more than I can do on my own.

My blood type is A+ so there are a few blood types that will be a match for me. My hope is that someone will come across this who is willing to donate and is a match. You never know who might be the one. Worst case is that I’ve spread enough information that people may consider getting on their state registry and possibly save a life one day. Below is a summary of what would happen should you decide to be a living donor.

1. Someone says they might want to donate.

2. The potential donor talks to the transplant center Following HIPAA policies the transplant center will not share your information with the patient.

3. The potential donor and transplant center decide whether

to test or whether it’s not right for any reason.

4. If both agree, testing begins.

5. After testing, the potential donor and transplant center think

about whether donating is right for that person and talk more

6. The potential donor may decide not to donate up until the time of surgery.

7. Donation and transplant.

If you would like to see if you are a good candidate for a living donor, please follow the link below. I believe there is a section where you can enter my name as patient/recipient. Teresa (Terri) Allen.

www.henryfordlivingdonor.org

If you have questions, or would like to talk to someone in person first, you can reach my Transplant Team at email [email redacted] or call 1-313-916-7893.

EDIT: I'm hearing that you'll need my birthdate when completing the questionnaire, it's 10/05/1969

I also want to post the compatible blood types, they are:

Donors with blood type A... can donate to recipients with blood types A and AB

Donors with blood type B... can donate to recipients with blood types B and AB

Donors with blood type AB... can donate to recipients with blood type AB only

Donors with blood type O... can donate to recipients with blood types A, B, AB and O (O is the universal donor: donors with O blood are compatible with any other blood type)

Thank you all again!! You have my heart, my love, and my wishes that you always live your best life every day and at all times!

With my deepest sincerity,

Terri"