Last year at this time, I wrote about my experience in living with HIV/AIDS and waiting for a liver transplant. I have been living with HIV for 18 years and chronic hepatitis B for 36 years.
It was rough back in May 2004, but I am doing really well, considering what I went through. I'm feeling stronger and have more energy now. It's like I am a new person.
On May 14, 2004, I received the call from Northwestern Memorial Hospital that a donated liver was available for me. Wow! The moment had arrived. I felt that I and the surgeons and surgical staff were not going to be alone in that operating room, that the Lord or His angels were going to be with us.
Still when I woke up the next day in intensive care I felt like a truck had hit me. I was hooked up to many machines and IVs and tubes down my nose and throat.
The first four months were the hardest. I had a lot of pain, discomfort, nausea, diarrhea, fevers and lots of medications. My doctors told me it would take six months to a year before I could feel normal. I said "What! I want to feel good now!" The doctors didn't tell me everything I needed to know about the recovery after the surgery, probably with good reason. They have taken very good care of me and have encouraged me to not give up. There were other concerns last year, like two complications after the surgery which landed me back into the hospital, nausea and vomiting for two months, and adjustments with my medications.
During those four months, I had to take medications around the clock and tried not to miss any dosages. I had to check my blood sugar and give myself injections of insulin to control my elevated blood sugar. I had to go to the Kovler Transplant Center at Northwestern Memorial Hospital two or three times a week for blood draws and IVs of magnesium, potassium and injections of hepatitis B globulin.
I had lots of water retention (which was uncomfortable) and the incisions were very uncomfortable. I slept on my back for the first two months until I felt comfortable enough to rest on either of my sides. I would get up every hour on the hour at night for four months. It was hard to get good rest and manage my medication schedule, plus doctor and treatment appointments.
Before the transplant, I had tried medication for depression, but I couldn't function with them, so I went through counseling instead. After the surgery, I was given a prescription of Ativan for nausea and vomiting, but it is also an anti-depressant and works well for me. I thank my partner, and many friends and family members who heard my cries and gave me support. I was not going to let these diseases take control of me.
My friends say I'm like the phoenix, the mythical bird that rises from the ashes. I have been severely ill many times and always came through.
Now I am the second person with HIV to undergo transplantation in Chicago and there are very few others in Illinois. There are 19 transplant centers in the U.S. participating in a study specifically in HIV, as well as other centers conducting transplants in HIV that are not participating in the study, including Northwestern. (visit www.emmes.com or call study data coordinator Craig Lazar at 1-301-251-1161 for more information on the study).
Michelle Roland, M.D., from the University of California-San Francisco, recently reported at the 12th Retrovirus Conference (CROI) on the results of the transplantations in the first three years of this study. Those in the study showed a similar survival rate as those who are mono-infected (or those who are just infected with hepatitis B or C). Although there are complications with survival in transplantation with hepatitis C, such as re-infection, transplantation is viable.
Six years ago, transplantation was not an option for me and many others; however, we are here just like other transplant recipients. Some people decided to change transplant protocol six years ago. Well, now let's take it up to the next level and change federal law to allow HIV organ donation.
I know this is a subject that many infectious disease specialists, transplant surgeons and HIV/AIDS activists would question, but I and others who have undergone transplantation would not be here today if protocol wasn't changed six years ago. Again, safety and efficacy is vital in survival, but I know I took a chance in deciding to have the transplantation. What did I have to lose? My life? I have fought all the way.
I'm past the critical point, and now I am an activist and advocate. Yes, hepatitis C is the main concern ("the sleeping killer"), but hepatitis B is also a killer. Transmission is mainly from sexual contact and blood products. While there is vaccination for hepatitis A & B, many people still haven't been inoculated.
Illinois has passed a law allowing HIV-positive individuals to donate their organs for HIV transplantations. The Illinois HIV Organ Donation Law allows those with HIV to donate their organs for HIV-positive individuals on the organ waiting list, and takes the state criminalization aspect (it is a federal offense) away from the transplant surgeons. Transplant surgeons cannot perform HIV to HIV transplantations because federal law prohibits it. I am advocating to take the Illinois State Law nationally and change the National Organ Transplantation Act (NOTA), which prohibits using organs from HIV-positive individuals.
In addition, I am supporting more education, awareness, prevention, vaccination, and screening. It is time as a society that we accept the fact that hepatitis is an epidemic. We have accepted cancer, diabetes and other diseases; we need to overcome the stigma and shame of living with hepatitis and liver disease.
I am a member of the Community Advisory Board for the HIV transplant study. I am getting involved in various HIV/AIDS organizations locally and nationally.
To those who are co-infected, I guess I would say hang in there, you're not alone. The medications, treatments, side effects, and all the rest are hard, but so are cancer, diabetes, and the other illnesses.
Have faith in the Lord or your Higher Power. I know that is easy to say, but I experienced depression in the past few years and wanted to give up, and I am glad I hung in there. To those on the transplant waiting list, there is life after transplantation. I feel more energy and I know I'm a different person than I was last year. I have felt like there is a positive influence in me. Believe me, I wouldn't have put myself out there a few years ago. I have been living with the stigma of hepatitis for 36 years. Thirty-six years of feeling that I am "contaminated," of feeling like I am a leper, of hiding my true identity.
I hear from other people who are living with co-infection or have undergone or will undergo transplantation. I thank them for getting in contact with me. One new friend, who's HIV-negative, took my advice to "shop around at other medical centers." He got evaluated at Northwestern, was placed on their transplant list, and received a new liver. I met an incredible body builder from Connecticut who was placed on the transplant list at Drexel Medical Center in Philadelphia. His story of kidney disease touched me. I felt I had met a kindred spirit and we have developed a friendship/brother relationship. Then there is Efren, who is the other person in Chicago to undergo a liver transplant with HIV, in September 2003. Efren is Latino, and a strong, educated and spiritual individual. Yes, living with HIV is hard and living with another disease on top of that is even harder.
I want to thank Illinois State Representative Larry McKeon, who is HIV-positive, for spearheading the passage of the HIV Organ Donation Law in May 2004. Thank you also goes to the Illinois State Legislature and Governor Rod Blagojevich for taking the bold move of being the only State to pass such a pioneering bill into law.
I also want to thank my medical team, for without their diligent expertise, I wouldn't be here. So, thank you to head surgeon Michael Abecassis; Dr. Jonathan Fryer; Dr. Thalia Baker; Dr. Patrick Lynch, Dr. Robert Murphy; Dr. Anthony DeSantis; Dr. Andri Blei, and last but not least, my primary care provider and the one who I owe my deepest gratitude for catching my case in time, Dr. Anthony Vaccaro. I have been seeing Dr. Vaccaro for nearly 13 years now. I have had the longest relationship with him than with any of my former partners. Thank you, Anthony!
I just left my life in the hands of the Lord and if He decided it was my time, then okay, take me home. But it isn't my time to leave and I still have work to do. My philosophy now is "Live Life, and Love Life."
Many people with disabilities inspired me, including Larry Kramer, the first HIV-positive person to receive a liver transplant (he survives).
Most importantly, I thank my deceased donor and donor family who gave a donation of life so that I and others may continue to live. Organ donation is truly a selfless gift.