ANGEL Stories

 

Finding a Kidney Angel

 

Becoming a living donor is not that hard, other than being such a special and heartfelt person that you may turn an initial stranger into a life long friend (if you choose) by offering part of yourself so that another person might have an extended quality life. You may also stay completely anonymous, if that is your choice. Nonetheless, there are numerous steps and at times some hurdles. But it is really not that difficult.

Update: I received a kidney from a deceased donor on Friday October 13, 2023. I am eternally grateful for that person’s sacrifice and ultimate gift. 

I had a living donor. But for good medical reasons and at the very last minute my Kidney Angel, Kerri, much to our mutual disappointment, was disqualified. Here are our stories.

A wonderful woman, a complete stranger, volunteered to take the Heath Assessment Survey. Based on the results of the survey, she qualified to potentially be my donor. She contacted me via Facebook messenger directly to tell me this. I was so excited, and of course humbled. We met each other for the first time October 9, 2021. Turned out she just happened to live in the next county over. It was amazing, emotional, and again humbling. You can read her story below. After she completed some more testing, she was found to be a direct match to me. Prayers answered, my Kidney Angel had been found. We were very joyful. Our transplant was originally supposed to be scheduled around February 2022, but COVID-19 got in the way of further testing for me and my donor. By the time some restrictions were lifted, and testing could resume, I had started dialysis April 13, 2023, going two days a week, Monday and Friday. Because we were still considered in the pandemic, there were no dialysys facilities accepting new patients. I had to go to the ER at the hospital at 6:30 am, get my blood drawn to prove I needed dialysis, and then wait to see if I could receive treatment that day. Sometimes I would wait until 2pm to get my session. Having my blood drawn was and still is a challenge. I have very small veins and it is challenging to find one willing to offer blood. It was a difficult time. I was finally able to start at an actual dialysis center on June 20, 2022. This made things much easier. A few days later, on June 23, 2022, it was a day of happy celebration as Kerri, the complete stranger who volunteered to undergo testing to be my donor, had been approved. She truly was my Kidney Angel.

We were then scheduled for transplant September 20, 2022, but my donor got COVID-19 in August 2022. Fortunately she came out of it with no long term issues. Our transplant was then postponed and rescheduled until November 1, 2022. But in mid September 2022, I, unfortunately, started having trouble breathing and started coughing. I went to the Emergency Room and after x-rays were taken, it was determined I had accumulated fluid around my left lung. I was hospitalized for nine days. During that stay, I had three, very painful, lung taps (fluid drained through my back from my lower left lung). First 1.5 liters were drained. It looked like foamy apple cider. The second time was .8 liters. And the third was .5.  They recommended I do dialysis three times a week to prevent future fluid accumulation. After I was released, I had one more lung tap in October as an outpatient where .25 liters more were taken. I went for another lung tap a few weeks later, but the ultrasound taken prior to the procedure showed no excess fluid. Hurray! In the following weeks, after many chest x-rays and tests, the surgeons at OHSU finally released me in late November 2022 to get back on the transplant schedule. Finally!

We were rescheduled for transplant to be on Tuesday April 18, 2023. However, earlier that March, my donor had a routine Dermatology appointment. These exams are required yearly to be a donor. Because we had been wait listed for transplant so many times previously, her annual exam was due. Unfortunately, this appointment was the beginning of the end of our journey together. She had some suspicious skin spots that her dermatologist thought should be biopsied but could wait until after our April transplant so she wasn’t trying to heal while donating her kidney to me. OHSU received her exam notes and thought otherwise. On April 13, 2023, just days before I was leaving for Portland, we were notified our transplant had been canceled yet again, until my donor had further testing and biopsies on those suspicious spots. This was a blessing in disguise.

After the biopsies were taken and tested, it turned out, two of three spots biopsied were Melanoma skin cancer. Fortunately for her they were only on the surface, not deep, not serious, but serious enough to disqualify her as my kidney donor as Melanoma is transmissible.

On May 19, 2023, my Kidney Angel, Kerri, called to tell me that she was no longer qualified to be my donor. We cried, we consoled, we comforted each other. 

The fact that these skin spots were suspicious in the first place is what caused our April 18 transplant date to be postponed, now canceled indefinitely. I do not look at all of the roadblocks and canceled surgeries (September 20, 2022, November 1, 2022, April 18, 2023) as having the rug pulled out from under us or a waste of time. I look at it as us, Kerri and I, being saved. If we had gone through with the transplant on any of those previously scheduled days, she could have given me Melanoma cancer because it is transmissible. If I had developed it after transplant, being on immunosuppressive drugs and only having one kidney, it could have made it very difficult for me to fight it. If, in the future, Kerri should need treatment for a more serious metastasized type of Melanoma, even though she would not be on immunosuppressive drugs, having only one kidney could have made it difficult for her to have any kind of radiation or chemotherapy. Therefore, like I mentioned earlier, I feel like we were both saved. A higher power KNEW.

Now, here I am in need of a new donor, a new Kidney Angel.

My Kidney Angel must be in good health, no tobacco use, no diabetes, no internal cancers, no Melanoma skin cancer, no high blood pressure, no heart issues, and of course no previous or current kidney issues like kidney stones. If my Kidney Angel is over age 50, please make sure you have had your required routine mammogram and well-woman exam if female, prostate exam if male, and colonoscopy for either male or female.

Kidney donation isn’t just helping me to get back into life, it also helps me help my parents, who are in their late 70’s, who need me to be able to help them as they age, especially after losing everything in the Oregon firestorms of 2020.

With the Paired Donation program, my Kidney Angel is not required to have the same blood type as me, mine is O, by the way. You don’t even have to live in the same state. With the Paired Donation program, you donate a kidney to someone who is a match for you, and in return I get a kidney from someone who is a match for me, it is a Win-Win scenario. OHSU participates in the first Pacific Northwest kidney Paired Donation program.

Start with taking the health assessment survey first at https://www.ohsulivingdonor.org/ to see if you qualify. If you made it through the survey and you potentially qualify to be a donor, call 503-494-0345 M-F 9-4 PST. Tell them you filled out the health questionnaire to be a potential kidney donor for Trisha Studer. And tell them if you are not a direct match for me, you would be interested in Paired Exchange or Paired Donation program.

For more information on becoming a donor, what is needed, FAQ, testing information, and how Paired Donation works, please visit https://www.ohsu.edu/transplant/living-kidney-donation.

I can put you in touch with people who have donated a kidney so you can talk to them, ask questions, and they can share their experience with you.

Donate Life Northwest created a lovely write up about me here:
https://www.donatelifenw.org/stories-of-hope/trisha-studer

My Facebook page and blog is https://m.facebook.com/KidneyAngelForTrisha/
Please use this link to read updates and share my story on Facebook. I would appreciate it.

Won’t you please be part of my journey? Help me find my Kidney Angel. Share. Share. SHARE. Maybe, just maybe, someone you share with will be willing to donate to me. The more people this reaches, the better off I have of finding a donor.

Kidney donation is a huge act of courage and love. Thank you for your consideration, and most of all for your love, support, and friendship. It is appreciated beyond measure.

Meanwhile I wait, living my best life under the circumstances, continuing to help others whenever and wherever I can, and being blessed with the opportunities and connections I have been given.

Be well, love and light,

Trisha

An angel grounded

My donor story

My name is Kerri. You could call me Trisha’s “Almost Donor.” We were SO close!

For almost 2 years (thanks to COVID-19 in part in 2021) both she and I went through testing, prep, jumping through hoops, and a whole lot of waiting. The surgery was actually scheduled 4 different times, but canceled each time for a variety of reasons, sadly. But, on the other hand, we are both very thankful that Someone was watching out for us because the issue that canceled the last surgery date was that I was found to have Melanoma. If that had not been detected, it could have been passed along to Trisha at a time when she was least able to fight it, and it may have been fatal to her.

Thank you for coming to this website to at least investigate the idea of becoming a donor! I was devastated to not be able to donate to Trisha, and my prayer is that she will find another donor with a healthy kidney. OHSU is extremely concerned, not only with Trisha’s health and well being, but the donor’s just as much. They don’t want to take any risks.

It seems like a lot, but it was actually all very easy and the nurses and doctors were so kind and caring and the tests are painless. They answered all my questions.

While not exhaustive, here is a basic list of things and tests to expect if you are considering donation:
Blood tests
Urine tests
A 24-hour urine collection
You can’t be diabetic or pre-diabetic

You must be up to date with your routine exams from:

Dermatologist
Dentist
Gynecologist/mammogram
Proctologist
Colonoscopy if over 50

Then, a whole day of testing at OHSU (or your nearest hospital that OHSU works with if you are participating in Paired Donation) that includes:

Fasting blood test
Urine test
CT scan
Chest x-ray
EKG
Possibly a stress test
Meeting with transplant team

Then, if you are able to be a donor and have the transplant, being in or near Portland (or your surgical hospital) for 2 weeks for the transplant surgery and have a caregiver(s) with you 24/7 for those 2 weeks after surgery.

I am passionate about organ donation. I’ve given 124 units as a blood donor, I’ve signed up to donate organs upon my death through my driver’s license, which is so important that I believe everyone should do. 

My husband received a living kidney donation 25 years ago. Fortunately he had a live donor, and they have both continued to live full lives and are happy and healthy to this day, no complications. I see the value, first hand, of organ donation and how important it is to educate people about the possibility of not just improving another person’s life, but the gratification it gives to SAVE a person from a life of pain and suffering.
Not everyone is able to find someone that is willing to donate and is a good match. When I found out I was an actual match for Trisha, I wanted so badly to do this for her. I admit I was a little concerned about finances and missing work. One of Trisha’s transplant team told her to suggest to me that I contact the National Living Donor Center at 503-418-7663 or https://www.livingdonorassistance.org/.

From their website:
Our mission is to reduce the financial disincentives to living organ donation. To this end, we operate a nationwide system that provides reimbursement of travel and subsistence expenses, lost wages, and dependent care expenses to people being evaluated for and/or undergoing living organ donation.

Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

As a donor, I was issued a credit card that would activate when it was time to use it. It is for transportation, lodging, gas, food. When you swipe the card, it sends the information they need so that serves as a receipt so that makes it easy. It can be used for testing, trips for testing and transplant, related, expenses, and even the follow ups afterward if you still have money on the card. But they deactivate it and activate it during the active times.

When I went up to Portland for my day of testing at OHSU, Trisha was able to arrange for us to stay at a very nice hotel at a discounted price, which was very helpful.

If you are going to donate directly to Trisha, OHSU has many resources to help. Your transplant coordinator can also help you with resources. 

What if someone in your family desperately needed an organ, and you couldn’t find anyone that was a good match? How desperate would you be to get the word out? Maybe YOU can be that very special person for Trisha! To give her back a healthy life. Please do what you can.

God bless.

 

Kerri