A Darling Story :  Dr. Richard Darling shares his inspiring story as he triumphs over being a three time liver transplant recipient. Also his work as an advocate for research spending and donor awareness

A Darling Story

I often wonder how it is to be faced with knowing you will need a liver transplant? To wait by a phone, with your beeper hugged tightly to your waist, knowing a donor must die in order for you to live. The fear of the operation, the worry of rejection, the guilt and compassion for the donors families, and the emotional pain knowing what your family will soon face.

I only have an inkling of knowledge to how it might be. I have had the pleasure of corresponding with some of those brave individuals. All of them have been the most humble, intellectual and courageous humanitarians I have ever ran across. Dr. Richard Darling is one of those people, let me tell you a little bit about him.

Dr. Darling is a Dentist who resides in California. While receiving a blood transfusion in 1972 he contracted HCV. He not only suffers from HCV but also has undergone three liver transplants. He has been faced with the challenges of cirrhosis, liver cancer, diabetes, a coma, not to mention a heart attack. How does a man who has seen so much physical and emotional pain continue to cope with life? His story is simply a phenomenon, a miracle, and an incredible journey he is sharing with all of us.

We all are faced with barriers in life, we either climb over them, break them down or succumb to them. Dr. Darling has embraced them and then used what he has learned to bring peace and enlightenment to others suffering with life threating diseases. He has also gone a step further and, with his national organization, ProrateNIH (www.ProrateNIH.com)  has helped raise awareness of research spending for not only our disease (HCV) but for the other 15  diseases that kill more people then AIDS. The challenge he has taken on is huge, which is to put research funds where they belong, in order of the mortality rate of each disease. He is our advocate, along with being an advocate for the other 15 diseases that are receiving grossly under funded NIH research allocations.

He also has written a book called ComaLife  and I feel his book, his work towards donor awareness, and research spending is one of the many things about him which I for one most admire. His work is a very important part of his story. For those who have lost loved ones to HCV, Dr. Darlings book will give you a calm, and inner piece you might of never known before. He talks about life in a coma, which I know; many of us have watched our loved ones succumb to. I see his book as a gift to anyone who has witnessed those they love sleep, and yes he will tell you, it was a peaceful sleep. He has dedicated the proceeds from his book to HCV research at Loma Linda University Medical Center's Transplant Institute and a smaller portion will go to promoting organ donation (the "Gift of Life") and the policy of Presumed Consent, which he explains in his interview. Dr. Darling's book is available at http://www2.xlibris.com/bookstore/bookdisplay.asp?bookid=15665 or by calling 888-795-4274 x276....24 hours a day, 7 days a week.

Dr. Darling believes God has kept him here to help others with the extensive experience he has obtained in his battles to survive. To further this goal, he founded the Coachella Valley Hepatitis C, Liver Disease and Transplant Support Group to help, not only those recently diagnosed with HCV (Dr. Darling has taken interferon also), but also those waiting for transplant. Loma Linda University Transplant Institute refers their Coachella Valley patients to Dr. Darling for educational and emotional support. Dr. Darling's recent involvement in saving the life of one of his patients can be viewed here: http://www.proratenih.com/media/news_results.htm

We have met so many people from all walks of life while working in our forum. I still wonder why I am so fortunate to be apart of all of this. People like Dr. Darling I see only as a special gift, they come to us ready to help in anyway they can.  Dr. Darling is another one of those remarkable people who gave us his time, without even giving it a second thought. He has joined the heroes, and heroines who have done our interviews. We would all like to thank you for being a part of Janis and Friends. You are not only an inspirational force, you are a light at the end of the tunnel, which so many of our friends are faced with before a transplant, and afraid to enter.

We all hope you are well Dr. Darling, and that you are responding well to this transplant. Would you say you are feeling well, and living a good quality of life?

Yes, with my new liver I feel GREAT! As we all know, when living with liver disease it's impossible to get up at 7AM with tons of energy and retain it until midnight. A healthy liver stores sugar as Glycogen and releases it when needed as our "second wind." There is little Glycogen in a sick liver so patients need naps and are very fatigued. That is normal for sick patients and eventually after successful treatment for HCV with Peg+Riba, or with transplant in those with end-stage liver disease, that energy level will come back to normal.

First let me say transplant Hepatologists are extremely good at stopping rejection episodes so I feel we should remain optimistic that a retransplant will not be necessary.

In regards to whether or not each transplant was more difficult, "Yes and No." Let me explain and educate as to how to overcome the depression of learning another transplant is necessary, or indeed, overcoming depression of liver disease from any cause. When told I needed another transplant only 18 months after coma, heart attack, chemo, diabetes, cellulitis, atrial fibrillation, myasthenia gravis, etc., etc., I got quite despondent for the first time ever. After a week my wonderful wife, Kress, who is the Caregiver of the millennium, brought me a notebook like we all used in grade school and said, "This is your Grateful Journal. Write in it every day at least five things you are grateful for. It can be anything positive since you were a child with your family, whatever, but no negativities in this journal."

It is a time in support group when the patient needs hugs and many words of encouragement. They need to be reassured that they will get a new liver (most qualified patients do) and that after they get their new liver, their days of struggling mightily with liver disease will only be a memory. A few days after surgery their jaundice will be gone because of dramatically lower bilirubin levels, their swollen legs, etc. will be getting back to normal size with increased albumin levels, their energy will be coming back quickly and mental confusion will be clearing out faster than one can ever dream of. It is not uncommon for a post-transplant patient to be walking around the nurse's station two days after surgery! Until that time, use the Grateful Journal. "Grateful for another day of life" "Grateful for my wonderful caregiver" "Grateful that I will not have to be "tapped" anymore and won't need lactulose to keep my ammonia levels down."

The United Network for Organ Sharing (UNOS), is a nonprofit, charitable organization that maintains the nation’s organ transplant waiting list under contract with the government. Separate private, for-profit entities called Organ Procurement Organizations (OPO) recover, preserve and distribute organs and tissues for transplant. There are sixty-one OPOs in the USA.

A hospital (that accepts reimbursement from Uncle Sam--Medicare, e.g.) with an imminently brain-dead patient who has agreed to be an organ donor must, by law, contact the local OPO and tell them they have a patient ready for transplant. The OPO’s skilled procurement transplant coordinator comes to the donor hospital and evaluates the donor’s organs. If they are acceptable, the coordinator will approach the donor's family with the utmost respect and compassion and request approval. Once it is obtained, the transplant coordinator will request the waiting list for the respective organ from UNOS and then contact the hospital that has the patient who is next on the waiting list.

The recipient’s surgeons travel to the donor and retrieve the organ. They want to evaluate the organ by sight. In the case of a liver, the requirements are that the organ be of a similar size and that the blood type be compatible. If the surgeons determine the liver isn’t acceptable (e.g., incorrect size), the OPO procurement transplant coordinator will contact the hospital whose patient is next on the list. In my transplants, the OPO was OneLegacy (formerly SCOPC), which is headquartered in Los Angeles.

Meeting my donor, Mark's, parents, Jim & Kathy Antonowitsch, was one of the best moments of my life. We hugged and  kissed and I have continued to kiss them every time I get together with them. As I describe in detail in my book, ComaLife, the entire story of our get-together is quite moving and has numerous incredible facets to it, not the least of which is when I met my donor's 12-year old son. He hugged me so tight knowing his dad was in me, then I took him to Disneyland with Jim & Kathy, his grandfather and grandmother. As I was walking with Christopher, he said to me--with emphasis on a word in a manner that only a child can--"What part of Daddy do you have?" I was taken aback and it was a very emotional moment for me. I barely kept it together and said, "I have I have his liver under my rib cage. It filters my blood, keeps me alive and I'm proud to have it.” At that moment I knew he was going to say something that would make me cry. It was such a tender moment. Sure enough, he said, "Cool, let's go on the roller coaster." Whew. He just wanted to hear the truth and get on with life. Kids, they just want the truth.

Communicating with your donors with a letter expressing your deep gratitude is a must. Jim and Kathy have stated that meeting me has given them great healing from the loss of their only son, Mark. It is not a requirement that you meet in person, of course, but the letter, in my strong opinion should be written as soon as possible.

I know liver cancer is a fear for many of us who have HCV, cirrhosis, or chronic liver failure. When you were diagnosed with cancer, did you think what next? I know we are all wondering how you find the strength to continue your struggle with each medical illness life is handing you. Have you ever said enough is enough?

First of all, know that of all HCV patients only approximately 20% ever get cirrhosis and of those that do, only a few percent will get hepatocellular carcinoma or primary liver cancer (originating in the liver). So this is not something one should be thinking about at all. If you are, you are dwelling on the negative and it is time to get out the old Grateful Journal and focus on the positives in life around you: "I am grateful the chances of my getting primary liver cancer are very, very small."

This is an interesting question for me. In 1998 the government (UNOS) was not allowing transplants on patients with liver cancer so I was going to die. In ComaLife I detail the preparations I orchestrated with my reluctant wife, Kress, including purchasing my plot in the cemetery, paying for my funeral in advance and we designed our marker with the inscription "Together Forever" because we believe in life after death. One must approach life's difficult times with a sense of humor and positive attitude (grateful for just one more day of life, for the beautiful desert mountains, etc.). Kress and I are musicians so I joked that the gentlemen next to me in the cemetery, Sonny Bono and Frank Sinatra, and Kress and I might have a "jam session" someday. Then I said, "No, Sonny and I were hippies and Frank had a lot of class. He probably wouldn't play with us." Kress, in her wonderful way of adding onto my humor said, "Don't worry, you'll have a long time to change his mind." We laughed and hugged. UNOS changed the rules and allowed transplant in some patients with liver cancer when I only had weeks, at most, to live.

If cancer starts in another part of the body and moves to the liver (metastasizes), one will not be eligible for a liver transplant because one's prognosis is poor and the liver would be wasted. To be eligible for a liver transplant when having liver cancer, the cancer must have originated in the liver, not be in any other part of the body, be in only one lobe of the liver, be three lesions or fewer and they must be small. There are some exceptions to this in marginal cases where treatment like I had is effective in reducing tumor size. For example, transarterial chemotherapy is a technique I had whereby a catheter (I was awake) is threaded into the femoral artery in one's thigh up all the way to the liver and then the toxic chemotherapeutic chemicals are injected into the liver to kill the tumor by cutting off it's blood supply. It was difficult, but I continued to be grateful for yet another day.

In addition, some transplant centers are more liberal as to which patients with liver cancer they will transplant, so if one is turned down at one center, they should seek a second opinion at a second, larger institution that performs more transplants.

I believe every patient with HCV should read the "Bible" on HCV by Gregory Everson, M.D.,  from the University of Colorado and Hedy Weinberg entitled: Hepatitis C, A Survivor's Guide. In it he relates many things all HCV patients need to learn and study. He also including text on the success of Peg-Intron + Riba versus Pegasys + Riba as follows:

I know many people who have HCV and who are waiting for a donor also have diabetes. Does diabetes hinder a liver transplant in anyway? Or make diabetes a more difficult disease to keep under control?

Diabetes usually doesn't hinder a patient from receiving a transplant and one can be transplanted when taking insulin injections. However, it is possible that a diabetic has such severe symptoms that a transplant is not possible. My transplant didn't make my diabetes more difficult to control and I don't know if anyone whom has had that problem post-transplant. In fact, if one's diabetes is from his liver disease, it is possible (and not uncommon) for the diabetic's insulin need to lessen post-transplant or even be eliminated. It happened with me as I no longer require insulin.

I'm not sure, but I believe my heart gave out due to my overall poor health, the stresses of the multiple surgeries and coma. When I received my second transplant, my surgeon had called my Kress in her hotel room to notify her I had 24 hours before brain death. Twenty minutes he called back as she was distraught with his previous news to inform her he had received a phone call from the OPO and a liver had become available for me. 12 hours later I received the "Gift of Life."

I can honestly say that if they read my book, ComaLife, they will understand where their loved one was, what he was doing "inside" his coma and realize that we have no pain (a tiny bit of discomfort only), no distress, no anger, simply a world of unusual events, places and people that keep us company. If you have a loved one in a coma, talk to him, touch him and explain things to him. As I relate, Brijie, my transplant coordinator came to me and held my hand while she spoke, "Dr. Darling, if you can hear me squeeze my finger!" She repeated it. I could hear her and see her (a bit foggy, but I knew it was Brijie), but I couldn't squeeze. Did I get upset? No. Just calmly realized I was not squeezing and went on with my ComaLife. Many "realities" came into my coma and I relate them in ComaLife. I wish those around me had explained things to me a bit more, as you will read, it would have cleared up some of my confusion as to why things were going on. Many things were not real, although after I woke up I argued with Kress that they were real, like my Angel Tabby cat that kept me company the entire time I was in my coma. She sat on the floor at the foot of my bed in a doorway and she was the cat in the hospital that stayed with the sickest person. The day she left, I woke up. We are ok in there, once again, just touch, talk to and explain things to us.

Ignorance inspires fear. I teach patients in my support group and, more importantly, those in the ICU waiting while extremely ill, what to expect during a transplant and how great they are going to feel after with no encephalopathy, ascites, lots of new energy, no yellow or gray skin, etc. I educate them about the operating room in that their first impression will be that it's very cold in there (and the reason for that is to preserve organ health), then they lift you onto the operating room table, which is heated beautifully and very comfortable with a donut pillow, very nice, next they'll tell you they are going to give you something to relax you. At that moment you must remember that when you wake up it's best to not fight the intubation tube, just RELAX, and breath as calmly as possible. You will look up at the ceiling and say, "My gosh, I've got a new liver." No pain before surgery, no pain during surgery, no pain after you wake up. With this knowledge they are prepared and ready to have surgery and get healthy like they see that I am.

Those of us with HCV can be organ donors. When I was in the ICU my Hepatologist came to me and said, “If we receive a liver from a donor who has hepatitis C, will you accept it? If so, you need to sign this form acknowledging these facts,” he said. Let’s review my options. Option A is death. Option B is I get a new liver with hepatitis C. I already have hepatitis C; give me the liver, please!

We must ask our politicians the following question: “Why don’t we as a country mandate by law the use of organs from the deceased for organ donation?” This policy would be called Presumed Consent. People could still have the option of not having their organs utilized. It would be presumed that you are willing to donate unless you have a “NOT” card with you, which stands for “No Organ Transplant.”

Presumed Consent places the burden on those who are unwilling to help save lives, instead of on those who are giving the “Gift of Life.” If you don’t want to donate, you carry the card. Let’s not continue to make those who want to save lives carry the card. Variations of Presumed Consent are in effect in Spain (with the highest donation rate in the world), Italy, Belgium, France, Austria, Finland, Norway, Denmark and Singapore. If they can show such compassion for those waiting for the “Gift of Life,” why can’t we?

Such mandatory use of cadaveric organs would eliminate the organ shortage with dramatic speed. Approximately 2,300,000 people die annually in the USA while 79,000 are waiting for a lifesaving organ. Since 79,000 is 3.4 percent of 2,300,000, that means that under a perfect scenario, 96.6 percent of the people who die would never have their organs touched at all. Many die of causes that leave their organs unsuitable for use; however, hundreds of thousands of deaths occur in which organs could potentially be available under Presumed Consent. Once the 79,000 people waiting to receive the “Gift of Life” receive their organs, the number of mandatory organ replacements would be miniscule compared to the number of people who die each year.

The point is that even under Presumed Consent, the chances of one’s organs being used would be extremely low. Hopefully all major religions that now support organ donation will join in this cause to make it mandatory.

Our organization, ProrateNIH  www.ProrateNIH  has as its goal the proration of NIH research monies for disease research according to the disease's mortality rate. If you have a disease that is killing the most Americans, it shall get the most research funding. If you have a disease that is killing the second largest number of Americans, it shall get the second largest amount of research funds, and so on.

As I mentioned earlier, the National Institute of Health (NIH) spends $5,300 on each AIDS patient and only $22 on each HCV patient in research, $64 on each diabetic, $126 on each patient with prostate disease in 2002 even though AIDS deaths are down to less than 14,000 while HCV equals that, diabetes kills more Americans than AIDS and breast cancer, Alzheimer's kills almost four times as many as AIDS in the USA. Heart disease kills over 700,000 compared to AIDS's 14,000 yet receives over 1/2 Billion less than AIDS. Absurd!

I would appreciate everyone's support in obtaining equitable distribution of our government's research funds toward the sixteen diseases (The 16) killing more Americans than AIDS patients.

I would be honored if your viewers would come to our join link at http://www.proratenih.com/signup.asp  and add their voice to the other patients will all 16 diseases that kill more Americans who are joining from all over the country. With all these patients, we will have millions marching on DC and we'll need porta-potties from the Lincoln Memorial to Memphis. We WILL get ProrateNIH legislation enacted and we will effect change!

You could also help by coming to the Hepatitis Magazine Annual Conference on Nov 8 & 9th and supporting me when I give my ProrateNIH speech where I expose this outrageously small amount of money being spent on HCV and other diseases. Read more here: http://www.hepatitismag.com/conference/speaker2.html

If you have HCV and are reading this, go get your caregiver and tell her/him to read this paragraph, please. You caregivers are out Angels. Without you we are sunk. We need your constant reassurance that "we'll get you through this. This too shall pass and the bumps in the road will be gone." When I was going into and coming out of my coma, Kress was there saying just that, "We'll get you through this." I had hope, not despair. We need your hugs and your understanding that we simply cannot do the things we used to do, our livers are not producing the sugars we need for energy, we need naps, ache, have mental lapses and sometimes we get cranky. That is normal. Please do not take it personally, we are not ourselves and in time, with treatment or a transplant, we will be better. We love you for your help, your patience, for doing the things we cannot do when ill. We LOOK OK. We are not, we feel like hell most of the time so thank you for understanding and thank you for this (((HUG))) from you that we need so badly.

On the other hand, if you are the person with HCV, read this: Because you are sick, you will have a tendency to be "snappish," and less tolerate of those around you. You MUST overcome those moments of temper and aggravation. Because I asked your caregiver to be understanding of you crankiness does NOT give you carte blanche to be mean. AND!!! If you act like a jerk, you will know it as you walk away: "I shouldn't have said that," you will think to yourself. GO BACK. GIVE IT UP. SAY, "I'm sorry, honey" or "I'm sorry, son or my lovely daughter, I shouldn't have said that. If you do that, your caregiver will say, "I know, you're not feeling well" and give you a hug. If you don't, you may get a negative reaction from a caregiver who forgot you are not yourself and you'll be sleeping in the garage! Okay, that part is an exaggeration, but the rest is true.

It's hard  to summarize like that, but I guess here are a few: you must have a positive attitude (the Grateful Journal and thank God for every day of life); what goes around, comes around--be mean, you'll get mean; be down, you'll get same; try to stay upbeat, those around you will uplift you; compliment those with you by telling them how much you love them and appreciate their help, their work in your absence and their understanding that you are sick; if you are not getting what you need from you doctor, go to a support group and get a new MD to go to; in that support group, VENT. Do not vent at home. You are in charge of your care and your attitude in life.

Disclaimer

Any information found on this site is for educational purposes only. We do not give out any medical advice. Janis and Friends does not endorse any Physicians or Pharmaceutical companies mentioned throughout our Web Site. We strongly recommend you see your HEALTHCARE PROFESSIONAL  for the quality care you deserve. Please do not use any  information found on our Web Site for diagnosing any aspect of your disease.