Through education and awareness, you can fight kidney disease and make a difference.
My story, it all started with an idea. "...be the change you want to see in the world." - Mahatma Gandhi. I think we all dream of different things..ideas, concepts, trips, the future, but we don't act on them. I had a vision. Do something to help someone, not a friend or a family member, but someone I didn't know, a complete stranger. I had heard of someone donating a kidney to a friend years ago, and I remember thinking, "Hmm, I would do that." I thought of it again, but this time, I decided to act on it.
In July of 2017, I made a choice to look into kidney donation. I registered with the National Kidney Registry. They contacted me and the process started. They had me choose a hospital from a list of locations near me, and I chose UCLA. I couldn't have imagined how this would change my life. My first appointment was in August. Everyone in the Connie Frank Transplant Center that I came in contact with was more than wonderful. I met people that, I'm confident, will be lifelong friends. It's not just about them "wanting" your kidney; they genuinely care about you as a person. You're evaluated as a potential donor, and you're also educated on the whole process.
Education. Awareness. Huge concepts in the would of kidney disease. Who could imagine that, once a person is on the list for a kidney, they wait an average of 8-10 years! Years. Not months, but years. There're over 103,000 people that are registered and waiting for a kidney. Many people die before they receive one or become too sick to get their transplant. I didn't know.
On November 1, 2017, I gave a gift to a phenomenal, kindhearted man. I donated a kidney. He calls me his guardian angel. In all reality, he's mine. He allowed me to discover something in myself, I guess it was that something that I needed to find. It's one of the best things I've ever done. People talk about having a "bucket list", I don't need one anymore. I now have a sense of joy inside, you might think it sounds crazy, but I'm truly content. I'm sure that somehow, our paths were meant to cross, and our bond is undeniable.
A quick summary of me...I'm a 53 year old, single mom. I have three amazing children (Brynne 22, Cole 19, Riley 16). We're definitely a pet household, which the 4 dogs and 2 cats can attest to, if they could talk. I love to run which helps my mental health as well as physical. I also have two full time jobs, all of which keep me busy. My point? Six weeks after donating, I'm back to doing everything I was before, except I do them with a little more spring in my step. No limits, except I was told to refrain from participating in contact sports, as not to risk damaging my other kidney. If you've ever thought about donating, but thought you wouldn't be able to do the things you used to, rest assured that you can!
One thing that I want to add...ultimately, I would hope to inspire others to donate or, at least, encourage others to get the word out about how important kidney donation is. During my donation process, I met the most astounding group of individuals, who each have their own part that add to the cohesiveness of the group - the UCLA CORE Kidney Program, Dr. Rastogi and his team and the Green Ribbon Campaign. When people talk about Dr. Rastogi, I hear the words amazing, caring, genuine, kind, great..honestly, in my opinion, there are no words to describe him. It's more of a feeling that you get when you're around the doctor and his team. Passion. True, sincere passion to help others. You feel a bond, and, at risk of sounding cliche, you just know they're there for the greater good. And then, you want to be a part of that bond, that family. Their mission - "to go where no man has gone before", well kind of..actually, in their own words "Our mission is to improve healthcare delivery to patients with kidney disease by implementing our CORE values of Clinical Excellence, Outreach, Research, and Education." Through education and awareness, you can fight kidney disease and make a difference. I have to say that it brings me such inner joy to be able to be a part of it. My journey didn't end when I donated a kidney, it just started.
Be that person. Be the change.
Sou Lang Tang
I was one of the lucky patient’s to have crossed paths with the world’s best nephrologist, Dr. Anjay Rastogi.
My name is Sou. I was a dialysis patient; I am a peritoneal dialysis nurse and I am also a kidney transplant recipient. In November 2011, I was one of the lucky patient’s to have crossed paths with the world’s best nephrologist, Dr. Anjay Rastogi. Dr. Rastogi and his teams were very compassionate from the first day I became a dialysis patient. I recall Dr. Rastogi and his teams asking what I was currently doing, I replied I just recently started nursing school, and based on my answer they had a plan of care for me.
In May of 2014, I graduated from nursing school. I could not have done it without the compassion and encouragement from Dr. Rastogi and his peritoneal dialysis team. Because of the inspiration of Dr. Rastogi and his peritoneal dialysis team, I myself also became a peritoneal dialysis nurse all the while being a dialysis patient. As a nurse, most days it was not easy, there were many barriers I had to overcome. However, knowing that I was able to empower another dialysis patient and made a difference in their life made all the barriers I had to overcome very satisfying.
I never gave up hope that I would receive a kidney transplant. With the encouragement of Dr. Rastogi, his research team, and his peritoneal dialysis team I started listing myself at multiple transplant centers with the hope to one day get a kidney transplant. That all became possible on June 08, 2017 when I finally received the phone call from Mayo Clinic I had been waiting for 5 ½ years. I was lucky to have shared that phone call with Dr. Rastogi and my peritoneal dialysis team. On Saturday, June 10, 2017, exactly one month after I was placed on the waiting list at Mayo Clinic, I received my kidney transplant from a deceased donor. Dr. Rastogi and his teams personally stayed in touch with my family to help comfort and guide them through that anxious nerve wrecking waiting period of surgery.
Dr. Rastogi and his teams also constantly stayed in touch with me post surgery. No other doctor’s I have known has ever personally stayed in contact with me and to me that makes Dr. Rastogi the world’s best Nephrologist.
To me, as a dialysis patient, a peritoneal dialysis nurse, and a kidney transplant recipient; kidney disease is a very common disease. Kidney disease can affect a person of any age. However the general public is not really aware of how serious kidney disease is. With my new found health comes a new mission. I would like to help Dr. Rastogi and his team brings awareness, education, and the importance of organ donations to the general public attention while continuing to care for other dialysis patient.
Linda Takvorian
I Encourage Nursing Students to Attend Dr. Rastogi's Clinical Education Programs
Kidney disease has affected many individuals in my immediate family. My dear uncle, a physician, who inspired many with his passion for medicine, was fortunate to receive a kidney transplant and continued to care for others throughout his life. He asked me to change careers and become a dialysis nurse and improve the quality of care for individuals with renal disease. I have been a practicing nephrology nurse for over 20 years and genuinely love it.
As a nursing instructor I encourage nursing students to attend the Dr. Rastogi's clinical education programs to better understand the importance of primary prevention, education, and behavior modification to live life to the fullest by achieving optimal healthy outcomes.
Bryan Taylor
It Was a Dream Come True
I found out completely by accident that I had PKD, or polycystic kidney disease, 12 years ago. I transferred care to UCLA Health a year ago, after finding Dr. Anjay Rastogi. He was the first doctor I ran across who not only specialized in kidneys, but ran the transplant department and knew about PKD. It was a dream-come-true. Everybody at UCLA is wonderful. The treatments are tailored to who you are as a person; you aren’t just a medical number walking in and out. It’s wonderful.
Caitlin Flanary
I Couldn’t Ask for a Better PKD Team
I was diagnosed with PKD (polycystic kidney disease, in which cysts grow on kidneys and cause kidney failure) when I was 15. My doctor at the time said it was no big deal. My mom and I went home and researched it. It felt like I won the lottery from hell,” says Caitlin Flanary, a 24-year-old college student who discovered UCLA Health and PKD specialist Dr. Anjay Rastogi two years ago. “I’m in a clinical trial, and the medication is supposed to slow or maybe halt the progression of the disease. It’s showing promise so far. I have high blood pressure and a couple other side effects, but all my labs are stable, which is good. I try not to let PKD affect my life too much; I try to live as normal a life as possible. I hope this trial, and others like it, help advance better treatments for the disease, and eventually lead to a cure. I feel lucky to be able to do this; it’s really amazing, and I couldn’t ask for a better PKD team.
Juan Perez
A Reason to Live
Three years ago, my wife died, and I just gave up. I didn’t want to do dialysis anymore, so I stopped for a month and a half,” says Juan Perez, whose high blood pressure caused his kidneys to fail five years ago. Juan had started dialysis with UCLA Health right before his wife passed away. “(Nephrologist) Dr. Anjay Rastogi told me I needed to continue. He said my wife was going to be very upset with me if I didn’t take care of me. He motivated me to come back [and continue doing dialysis]. And I thank God I have another opportunity. I’m so thankful to everybody here, because otherwise I wouldn’t be here today. There are very few people like [those at] UCLA who really care for the patients.
Michelle Obespo
My personal experience with UCLA is that I couldn’t ask for anything better, especially in such a traumatic time.
There was a time where I didn’t do dialysis for a month, and I refused hemodialysis,” says Michelle, whose high blood pressure led to kidney failure. She notes her biggest battle with kidney failure was ensuring that dialysis didn’t ruin her high-profile career as a consultant for major athletes. "Another hospital said, ‘You have to do ‘hemo,’ and they were trying to put this thing in my arm. I said, ‘Absolutely not.’ I need to wear dresses and do all these things, and this will not be the end of my life. " At UCLA, nephrologist Dr. Anjay Rastogi and Joe Ephantus, the head nurse, gave me all the options and told me about peritoneal dialysis [where you can give yourself treatments at home, at work or while traveling] It wasn’t the easiest process, and I definitely had complications, but it was a better fit for my lifestyle. I’m 100 percent better now that I have a kidney, thanks to an altruistic donor. My personal experience with UCLA is that I couldn’t ask for anything better, especially in such a traumatic time.
Anonymous
The Kidney Health Fair held by Dr. Anjay Rastogi is the best kidney awareness event.
The Kidney Health Fair held by Dr. Anjay Rastogi is the best kidney awareness event. The event hosted a lot of informational booths that allowed the community and myself to gain further knowledge about kidney diseases, kidney treatments and most importantly about kidney donation. All the guests even had the pleasure of meeting and talking to one of UCLA's best kidney specialist-Dr. Rastogi! He is very humble and one can tell that he is very interested and time-invested in his patients and medical studies. Dr. Rastogi is trying at the moment to promote Kidney awareness among the Los Angeles Community and has successfully reached out to 1000+ individuals and he soon hopes to reach more than 10,000.
Julie Ngo
He (Dr. Rastogi) has been there for us as a family, for my mother and my sisters and myself. He’s just a tremendous person.
Nothing was being done for my father. The word dialysis was thrown around, but my father was having a hard time coming to terms with [having kidney failure]. We were all resistant to the idea,” says Julie Ngo, who brought her father to Ronald Reagan UCLA Medical Center after visiting several other hospitals. “We saw (nephrologist) Dr. Anjay Rastogi and his peritoneal dialysis nurse Joe, and instantly they had a plan. It always seems like that was Dr. Rastogi’s thing — we have to have a plan. It was music to our ears, really reassuring. Eventually, my father started peritoneal dialysis, and he was just well taken care of for the past three years. Things took a tragic turn when my father fell and hit his head. He was transferred to a long-term nursing home, and Dr. Rastogi still tries to see him. I think it speaks volumes for what he does for his patients and their families. He’s been there for us as a family, for my mother and my sisters and myself. He’s just a tremendous person.
Arlene Dunaetz
We’re just tremendously grateful. Dr. Rastogi has saved both our lives.
I was on a gurney ready to have surgery and my blood pressure was over 200. I said that can’t be right, it must be the machine. They tried another, and it was 213,” says 83-year‐old Arlene Dunaetz. “They couldn’t go ahead with surgery; I could have had a heart attack or stroke. When Dr. Rastogi, my husband Richard’s nephrologist, found out, he came out of a meeting and said, ‘I want you to be in my blood‐pressure-study group, I want to help you.’ And he’s helped me tremendously!” Arlene has now been in UCLA Health’s blood-pressure-study group for three years. Richard Dunaetz, whose high blood pressure led to kidney failure, adds, “Within two months [of joining the study group], her blood pressure dropped to below 120!” Smiling, Arlene, says, “We’re just tremendously grateful. Dr. Rastogi has saved both our lives.
Kathleen and Pete Koch-Weser
The level of caring and compassion is extraordinary.
My husband, Pete had a stem cell transplant because he had non-Hodgkin’s lymphoma, and the [subsequent] prescription drug interaction is the reason he experienced kidney failure,” says Kathleen Koch-Weser.
Pete adds, “I’m on PD for nine-and-a- half hours each night, every night. And I will be for the rest of my life.
Kathleen explains, “Pete isn’t eligible for a kidney transplant because of having had lymphoma. So even though there’s been no recurrence since 2000, the doctors can never feel it’s truly gone.” Pete hopes to remain healthy, and he feels fortunate to have found Ronald Reagan UCLA Medical Center and nephrologist Dr. Anjay Rastogi. Kathleen agrees, “The level of caring and compassion is extraordinary. There is just a high level of expertise and knowledge. We feel so fortunate to have come here.
