I hate being sick. when I'm sick, nothing seems to go right. I feel misunderstood, everything hurts, and a lot of times I'm really weak. I shouldn't really complain too much though, I mean it could be worse. I'm alive, I'm healthy, and I have HIV.
When someone hears the word HIV they still think of a terminal illness. Oh, I know, I've heard it all. "With today's medications people are living longer than ever. HIV isn't the death sentence it used to be". And it always seems like you're either really sick or not so bad. Sometimes the really sick get better. Sometimes the not so bad get worse.
Well this is my story. I tell it the best way I can remember it.......... exactly as it happened.
I am a warrior. I have HIV. I survive. I don’t JUST survive. I thrive. I fight and live because I am a warrior in my fight against HIV. I remember attending a support group shortly after being diagnosed back in 1999, in NYC. Support groups were in my opinion, supposed to be helpful. To be an avenue for those dealing with difficult situations. To help process and handle what you are going through. I was not prepared for what I was about to hear and see. Person after person complaining about the pain they were having, and the side effects of the medications. The wasting, the inability to work or care for themselves. The stinging pain of Nephropathy. All with no cure. I felt like I was looking forward into my future. It scared me. It horrified me. It was easily, the most depressing moment of my life. I mean, I had done this to myself right? I had had unprotected sex in a time when we KNEW what the consequences could be. Would I feel the same things these people were feeling? Would I suffer the way they suffered? Maybe.
Leaving that meeting I realized I had a choice to make. I could either choose to be a victim or I could choose to be a survivor. I choose to be a survivor. I live with HIV. It is a part of me. It is, now, part of what makes me who I am. Yes, it may kill me. But then again, it may not. I am a warrior, I fight on.
Like everyone else living with this disease I have good days and bad ones. The medication helps in the same way that it harms. The only side affects I had were the same ones I would hear about from my friends. Nausea, vomiting, diarrhea, cramps, I guess I’m lucky really. It could have been worse.
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| Courtesy of HIV Victorious.org |
I had it good for a few years…the HIV reacted well to the medication I was on and within 30days I was undetectable.
I am a flight attendant and being a Flight Attendant, I traveled all over the world. Met some great people and even had a boyfriend or two along the way. In December 2001 is where things really start to get interesting though. I was home sick from work. I was so weak I could barely lift my suitcase. I remember getting home and laying down on the couch on Christmas Eve and the next thing I remember is being awakened by my roommate. She wished me a happy Christmas and then went to her room to unpack from her trip. She told me I was very hard to wake up, she had been shaking me for 20 minutes, but she heard me breathing so she thought I was just really out of it. I remember being confused because she wasn’t supposed to be home until the day after Christmas so I asked her if her trip cancelled. Her reply,” no dear…it’s the 26th”.
I had slept through Christmas.
By now I was realizing I wasn’t feeling any better. I asked her to take me to the hospital.
She drove me to Beth Israel Hospital in Brooklyn, off of Kings Highway. I could barely walk and she had to help me with my arm around her shoulder to get into the ER. Once I was triage'd and blood work was run, we knew what I was facing. The news was less than stellar. I had gone into full kidney failure. Fortunately not the HIV related kind or I would already be dead. No, my End Stage Renal Disease was caused by years of untreated high blood pressure……If I’d only known I would have actually taken those stupid little white blood pressure pills. Hind sight being 20/20 I had to simply surge ahead.
A few days later, after emergency surgery and dialysis, I remember the conversation I had with my doctor about having a transplant. I had undergone two days of emergency dialysis through a catheter in my femoral artery….for those of you who don’t know what that is, it’s the artery in your groin and is NOT comfortable. I was however, feeling incredible. I remember waking up after the dialysis session, I was very, very sick and it is typical to sleep through dialysis, and everything looked different, smelled different…and what was that grumble? Good god, I was hungry. My doctor walked in and asked how I was doing. I told him I felt fantastic and that I was actually hungry. He said that was a good sign and told the nurse in the room to get me some food. He also told me it was a close call and by all rights I should have been in an irreversible coma my (blood) numbers were so bad. I laughed it off thinking…I am a warrior. I have survived yet again.
Then came the crushing blow. When I asked him what I needed to do to get on the list to have a transplant, he told me I couldn’t have one. I sat there stunned. I remember asking why and being terrified because I already knew the answer. My doctor told me that I could not have a transplant because I was HIV+ and patients with HIV were not eligible for transplantation. No further explanation. That was it. I had HIV and therefore I WOULD NOT be allowed a transplant. I remember staring at him. Just staring at him. He said he was sorry and that he would check in with me later and left. The nurse in the room gave me a look of kind pity and left as well. I lay back in the hospital bed and starred at the ceiling. This had to be a mistake, I thought. I was 32 years old. I was just starting out in life. I mean at least just getting serious about it. Was I really being told, Sorry….you out of luck?
The nurse that was in the room at the same time as my doctor came back later to draw my bloods or to check my tubes or something, I don’t exactly remember. I don’t know how or why we started up the conversation but I remember it strayed to the fact that I couldn’t get a transplant, not that I couldn’t, but that they wouldn’t allow me to have one. It was what she said next that took my by surprise. She said to me. “Child…they give the kidney’s to the ones who are gonna live! You already dead!”
I was floored. I was hurt, I was crushed, I was angry; I wanted to scream THIS ISN'T FAIR. I could do nothing. For one minute I thought I have nothing left to live for I might as well just wait to die. But only for a brief minute, then I remember saying to myself. No…this is the united states… this will change…you have to stay alive and healthy long enough to prove them wrong. The medical community had not made this decision out of malice but out of sheer untested, scientific, egotism. I mean it is not unknown that surgeons only take on the cases they can be a success with right? Who wants to go to a doctor with a 50/ 50 success rate? Time is what I needed, Time. Something all of us with HIV treasure. So I would wait. I would bide my time. I would fight to stay alive and to stay healthy. It was not hopeless. I did have something to live for. I had to fight, I had to fight and get my transplant so others could too. I had to help show the world that just because I live with HIV, I AM WORTHY.
I am a warrior.
The next four years were again a battle. I performed my dialysis on myself at home while I slept through a tube in my stomach called peritoneal dialysis, and continued to work. At first I flew fulltime and carried my 48lb machine and 25lbs of supplies with me for my layovers. Then I ran for the position of Vice Chairperson within my union and then the base chairperson. Union work is extremely stressful, thankless and frustrating. It is also extraordinarily rewarding and what motivated me to wake up each morning through the fatigue and pain and make it through each day. I was still biding my time when in a doctor’s visit in 2004 I flipped out. I was by this time in so much physical pain due to the severe toxicity of my body that I could barely stand it. I had developed renal bone disease, a form of osteoporosis but one that affects kidney patients. It manifests in sever bone pain. I would take Xanax to sleep, and Vicoden to deal with the pain during the day. I told my doctor that I didn’t want to live like this anymore, if he didn’t do something to help me, I was going to start looking outside the united states for transplant options. After he calmed me down, he told me that Mt. Sinai Medical Center in Manhattan, was one of 8 hospitals in the United States that were beginning clinical trials on Liver, Kidney and Pancreas transplantation in HIV+ patients. I had done it! I had kept myself alive and healthy long enough for some brilliant angel in the medical community to realize they needed to at least TEST the ability to transplant HIV+ people.
I broke down in tears right there in my doctors office. He handed me the name and number of the Physician heading the trials at Mt. Sinai and told me he’d already notified them I was a prime candidate. I left his office and stood outside in the sunshine feeling invincible. Grinning from ear to ear. I had won another battle.
I made the appointment to meet with Dr. Murphy who was in charge of the program at Mt. Sinai. It was a very cursory meeting; little did I know they were summing me up both physically and mentally before they subjected me to the battery of tests needed to get on the United Network of Organ Sharing (UNOS) waiting list. At the end of the meeting the doctor shook my hand and told me that in her opinion, I could be a poster child for the trial. I was in excellent health, at least as one can be in kidney failure. I was young, and I was still working which showed a strong desire for independence, and now I could proceed with the testing.
I was just surviving.
I went through test after test and everything checked out except for one. My viral load was still high. One of the requirements for the program was a viral load of less than 50 copies for 6 months or greater. I had not been on any form of HIV medication while I was on dialysis as the dialysis itself was washing the virus out of my body and keeping my viral load below 10,000. Time to get back on meds. My ID doctor put me on Viramune, Epivir and Ziagen, which I tolerated extraordinarily well, with no side effects. Now I would wait. The 6 months passed very quickly. I would look forward to getting my blood work run so I could submit it to the program. I finally got the call that I was now on the UNOS waiting list for a cadaver donor. Again….I would wait.
I was starting to have trouble walking up stairs and found myself breathing hard. I was a smoker. I had smoked for 18 years so I figured it was catching up with me….time to quit. In December of 2005 I checked into the hospital with severe chest pain. I was having a heart attack, or so they told me. All I knew was I couldn’t let it end like this. Stay away from the light Carol ann….stay away from the light. All jokes aside, along with the hi stress job, the dialysis making my veins sticky, and the HIV medication raising my triglycerides to over 2000,( yes I said 2000), was it any wonder that I had four blocked arteries?
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| Beth Israel Manhattan, NY |
I was transferred to Beth Israel Manhattan, coincidentally during the MTA transit strike of 2005, where I met the chief of surgery and tried to negotiate a better deal. I told him I was available next Thursday for surgery. He smiled and said “tomorrow 4pm.” If I didn’t do it this way, he could not guarantee my survival. This was one of those times that you have to give in….you can’t fight. You have to trust that the person who is holding your life in their hands is right and believe….just believe.
Before the chief left my side, I said to him, “Will this hurt my chances of getting a kidney transplant? I mean I’m in a clinical trial at Mt. Sinai and am on the waiting list?” He smiled at me and said, “No…they would have found this when they did the cardiac work up. You would have had to have the bypass before a transplant anyway.”
So on December 20th 2005, I became the second youngest patient to ever have bypass surgery at Beth Israel in Manhattan. I was 37. Someone had beaten me out for the number one spot at age 35. It was a hard recovery but rewarding, I now have the heart of an 18 year old as my doctor loved to say. To which I would reply,” Well….at least I’ve got something of an 18year old.”
The transplant institute keeps tabs on you through the waiting period. The run your blood to make sure you are still within range and that nothing is coming out of the blue that could knock you out of the program. My coordinator told me I could start asking people to be living donors. WHAT? How the hell do you ask someone for a kidney? Hi, how are you? By the way, mind if I take a kidney? I couldn’t image doing that.
Being adopted I was very close with my siblings. Of course I asked my family but unfortunately all of them had a disqualifying illness or symptom. So now I turned to my extended Biological family. Nope…no good there; Kidney failure, Kidney disease, heart disease, and diabetes on both sides. So again…it looked like I would have to wait. I didn’t know how to ask my friends. I felt like I would be putting too much pressure on friendships. My best friend Joey McFadden, now Granata, jumped at the chance to test. Her father had passed from Kidney failure when she was young. She couldn’t help him but was eager to try to help me. Well, Joey was not a good match and she was devastated, but she then turned into one of my biggest advocates. She would tell the flight attendants at our base about my situation, I mean they all knew who I was through the union and they knew I was in kidney failure but they didn’t know about the possibility of transplant. Two other flight attendants came forward and tested. Peter Moran, a dear and long time friend, and Charlotte Newman also a longtime friend through the airline.
Peter was not a blood type match so was disqualified; Charlotte however called me and told me she was a match. I was elated…ecstatic…I was going to live! I would win. Unfortunately later on in the testing Charlotte was disqualified and I was back to hanging on.
It was the Association of Professional Flight Attendant’s annual Convention in February 2008 that my life would turn around. It was during a break in the meeting, that the DCA International Chairperson, Cindy Horan approached me and told me that she would like to test to be a donor. I was still reeling from the emotional let down from the first potential donor. I didn’t want to go through it again, but how do you say no to someone who is eager and offering? I told her to talk to her husband, since it was a big decision and then I would be happy to give her the information on who to talk to at Mt. Sinai.
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| Cindy and her husband Pat |
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She came to me the next day and told me that her husband Pat, was totally supportive of her in this. I gave her the name and number of the living donor testing contact at Mt. Sinai. The next day Cindy told me she already had an appointment to test. I remember thinking, hmm...This is a bit different than the last few times but I really didn’t want to get my hopes up again.
I told Cindy that this was a clinical trial being done through the National Institute of Health. They did not know how successful it would be. They did not know how long we, the recipients, would live as they only had day by day to tell. The current recipient was coming up on 2years. Cindy asked me if I was worried about this. I remember emphatically telling her NO! I would rather take 2 good years, pain free and healthy and make the most of them, then live in constant pain and uncertainty. She smiled and said, well, that’s good enough for me!
The following week Cindy had her blood drawn at Mt. Sinai and a week after that I received a phone call from her. I remember the call perfectly.* Ring ring* “Hello?”, “Hi Eric, its Cindy I got my results back and apparently I’m a match! So when do you wanna do this?” (Followed by hysterical giggling.) I remember saying NO WAY! Over the phone and laughing along with Cindy. I then responded with, “Well, it’s your Kidney…it’s completely up to you.” After more laughter and a few tears, we decided on a June transplant date, which was three months from the day we found out Cindy was a match. This would give us the time needed for Cindy to have the complete medical workup necessary and myself to have all my testing updated.
There are three things that make a donor a match. Blood type, antibodies and genetic markers. Cindy and I were both A- so we matched in blood type. Where the genetic markers are concerned, If I had an identical twin, they would have matched 6 out of 6 genetic markers. Since Cindy was not blood related family, they look for a maximum of 4markers. She had 4 out of 4. A perfect match. Next was the antibodies match. In today’s day and age it is not unusual for people to have some of the same antibodies. We all get various illnesses through childhood and life. Too many differing antibodies would be too difficult for me to fight off, being already immuno compromised. Keep in mind, I would be further suppressing my immune system with the anti rejection medications. Amazingly, Cindy and I had the exact same antibodies. Even the testing staff was surprised. It was a perfect match!
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| a typical blood chemistry draw |
The three months passed very quickly and suddenly it was the night before. My sister had flown in from Oregon to be by my side and my lifelong best friend and partner Bunnie, was flying in a few days later. Cindy and I spoke the night before the transplant. I gave her one last opportunity to back out. I told her she didn’t have to do this and if she had a change of heart to just tell me, I would handle everything else. She sighed and told me to stop saying that. She then proceeded to tell me that in the morning, along with her husband pat, I would meet her mother, father and her aunt, who would be there for the surgery and the recovery. I thanked her again for saving my life and we agreed to see each other at 5am at the Mt. Sinai hospital admitting station.
I went to sleep that night thinking, tomorrow everything changes……
My sister and I checked in at the operative check in desk at 6am. Cindy walked over to me. We hugged and smiled and she introduced me to her mother father and aunt. Her mother was a small bubbly woman who was all smiles and excitement. Of course there was an underlying aura of fear as it was her daughter going under the knife. Her Father was a tall proud man of few words but power stature.
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| Cindy and I a few minutes before surgery |
I was a bit nervous. I was sure there would be probing questions trying to decide whether I was worthy enough for what was about to happen. I mean I was about to receive their daughters organ. Maternal and Paternal instincts are strong. In the end, there was nothing but hugs, love and well wishes. At 730am or so, Cindy and I were called to the pre operative area to change into our dressing gowns and check all our personal effects, which of course had already been turned over to our family members. Cindy was placed in a waiting room with a curtain directly across from mine. I quickly changed out of the sweat pants and t-shirt I was wearing and donned the two dressing gowns. I opened the curtain just as Cindy opened hers. We smiled at each other and started to laugh. She told me she liked my outfit. I thanked her and said, they were all the rage.
As we were lightly talking, a nurse walked around the corner and called Cindy’s name. When she acknowledged him, he stopped, smiled and said, “You are one of our hero’s. You are saving a life today and oh…..you’re just wonderful. I remember thinking yes….yes she is. Then the nurse turned to me and said, “Cindy’s going to go in and be put under and then about 30 min later we take you in.” He smiled and left. I looked at Cindy and said “thank you”. She just smiled. Soon they came to take Cindy in to the operating room. When she got in the wheelchair she said, “I’ll see you after soon Eric.” I said, “See you soon Cindy.” Tears were welling up in my eyes…..this was finally really happening. I stood there watching as they rolled her down the hall and tried to take a few deep breaths. My life for the past 8 years had been extremely difficult. It was finally about to change. I was excited, nervous and even a bit scared. It seemed like forever but then the nurse came and told me it was my turn.
They wheeled me into an Operating room where everyone was very busy prepping equipment. There were smiles from everyone. I got up on the table and settled in. Dr. Bromberg came in and put his hand on my shoulder and said, “Are you ready to get your new kidney?” Absolutely!!!!! The oxygen mask came over my mouth and the anesthesiologist told me to take several deep breaths……and that’s the last I remember until I woke up in recovery.
I was a little groggy but very aware. My sister was standing next to me smiling. My first words were, “Did it work?” She told me the doctor said everything went fantastic. I remember asking the recovery nurse, “What’s my urine output?” He responded with 200ml in the past hour. I breathed a sigh of relief and relaxed back into the gurney. Perfectly normal urine output. My new kidney was working fine. My friend Suzanne came in next to see me. She gasped when she looked at me and said, “Eric! You’re all pink! It’s the first time I’ve seen you not gray…..and your eyes…there so clear and crystal blue!” I just smiled, overwhelmed by it all and on not a few drugs for the pain. But her excitement was enough to confirm this was all good.
It was when my friend Christian Casaday came in to see me that things got a bit hectic. While we were talking, a technician was running an ultrasound on my new kidney. This is a common practice to make sure that blood flow is unrestricted and there are no complications. We were worried that due to my high ability to clot that I could blow a blood clot in the kidney which would kill the kidney if not caught in time. While Christian and I were talking, the tech stated, “What the hell?” We stopped talking and both looked at the tech. The tech turned to a nurse and said, “Get Dr. Bromberg over here now!” I asked what was wrong, and he said, “I don’t know yet.” Dr. Bromberg came over and peered at the screen, then turned to a nurse, spoke and the nurse ran off. He leaned down to me and said, “Eric, do you remember when I told you there was a risk for a blood clot?” I replied, “Yes”, “Well it looks like that might have happened. We need to get you back into surgery NOW.” As he pulled away, I grabbed his arm and said, “Please save my kidney.” He responded with, “ I’m going to do everything in my power.” My friend Christian went back out to the waiting room to inform everyone of what was going on while I was being rushed down the hall to an OR. I remember the orderlies screaming while running me down the hall,” Clear the way, clear the way” and banging my gurney into the OR door throwing it open. I looked inside to see a flurry of activity…everyone was moving at what seemed the speed of light. The orderlies said, “Ready, 1,2,3” and hoisted me from one table to the other while simultaneously the anesthesiologists was telling me to take deep breaths and placing the oxygen mask over my face. And then everything went dark.
When I woke up, Dr. Bromberg told me that the renal artery, which was used for the outflow of blood from the kidney had kinked. Fortunately it had not been a blood clot. But all the same, blood flow was stagnant inside the kidney. The team decided to move the kidney to a better location in my body to keep the artery straight. With the trauma of coming out of Cindy, going into me and then having to be moved around inside of me yet again, the kidney went into a coma or “sleep”. I asked when it would wake up and they didn't know. Again it would only take time.
I continued on dialysis for the next three weeks and in the second week and I was sitting on the sofa and fidgeting. My abdomen was extraordinarily uncomfortable and I didn't know why. It hit me like a ton of bricks. The pressure in my stomach was from my bladder. I leapt off the sofa screaming, “Oh my God I have to pee”. I ran to the bathroom while family members were clapping and cheering and crying in the living room. It had been eight years since I had urinated. It was the most wonderful feeling in the world.
Day by day, over the course of the next week and a half, my kidney functions returned to normal. During the last two dialysis sessions I ever had, I had to be removed from the machine two hours into the session so that I could go to the bathroom.
On June 24, 2010 I celebrated my two-year anniversary living with Cindy's kidney. I am still undetectable. At my most recent blood work, my T cells were approaching 700, and to date I have never had an opportunistic infection. The clinical trial at Mount Sinai medical Center is still going on with the expectation of the results being submitted to the national Institute of health within the next two years. Hopefully my participation will help others with HIV who need transplants.
It was an incredible journey and I'm sure it's not over. Having had so many things go wrong with me, so many things that could have killed me, it is even more important for me to share the story with others , living with HIV or not.
We are strong
We survive
We are warriors
Eric Hodgson
