Living with RRP

Recurrent Respiratory Papillomatosis (RRP) or laryngeal papillomatosis is a rare form of the Human Papilloma virus (HPV) located in the larynx. It causes wart-like tumors (or papillomas) to grow inside the respiratory tract and on the vocal cords (in other cases it can go even deeper, in the trachea and into the bronchi). These tumors block the air circulation and if they are not surgically removed, the patient suffocates. The tumors grow back within months after surgery (hence the “recurrent” part). (More information about RRP here and here.)

I was diagnosed when I was 6 months old. In most cases, the disease goes away when the patient reaches puberty. In some cases (like mine) it becomes chronic. I’m currently 33 years old, and up to this date, I’ve had a very high number of surgical interventions (I must say this high number is pretty common for a patient of my age with chronic RRP). I lost count after a while. Sure, I could look through the files, check my medical records, but, frankly, I don’t really care about the exact number. Due to the numerous operations, my vocal cords are not as flexible as they should be, being thickened by the scar tissue; also some (small) portions of them have been cut, so they are not all in one piece anymore (LATER EDIT: They’ve been removed completely, along with another portion of my larynx). Last year I’ve had my thirteenth tracheotomy.

I’ve had many… medical mishaps throughout the years (nice alliteration). I remember when I was between 6 and 8 years old (maybe?) I experienced something that now I know to be anesthesia awareness – basically I could feel and hear everything that was done to me during the surgery, but I couldn’t move – because too little general anesthetic was administered (during a surgery they give you a general anesthetic – the drug that makes you sleep – and a paralytic that paralyzes your muscles, so you don’t move during the operation). When I was about 8 or 9, the anesthesiologist (I think it might have been the same one – really good doctor, this one) got the dosage wrong for the paralytic (too much) and I had severe muscle and joint pains whenever I moved for about a week or so after the surgery. And these were just a few…

I’ve had various vaccines, various drugs (Cidofovir, Interferon…) that had various to zero effects. Interferon, for instance, increased the time between surgeries (by slowing down the development of the tumors), but as a side-effect, it caused depression. I’ve also tried various homeopathic/ naturist/ New Age/ alternative treatments (with no effect at all on the disease). Some made me feel like crap, some… well… I remember an energy therapy session with a strikingly beautiful blonde Russian woman in her early thirties (I was about 13-14). She put her warm hands around my neck and all I could think of was that she wasn’t wearing a bra.

I’ve had my share of humiliations, too (it’s not easy to grow up as a kid who’s different from others). And I still have, to a certain extent… Sometimes when I talk (some) people ignore me, or respond to the person next to me, or laugh, treat me like a freak (telling me – when I was younger – “hey, say something,” just to hear my voice), etc… A guy at a job interview compared my voice to a nose piercing – hey, people eventually get used to it… well, no, not really, you can take off the nose ring, but I can’t exchange my voice for a better one…

I’ve always felt kind of isolated from any group I was in. When you’re a little boy, the only way to really connect with other little boys is through play. And, at that age, the play is usually physical (running, jumping, fighting, etc…). I couldn’t do that because I’d lose my breath really quick. Later on, in my teenage years, another important part of socializing in a group is talking. Groups tend to be noisy and you have to be able to make yourself heard. I couldn’t do that either.

With that being said, I think it’s important to say that I don’t blame anyone for my situation, the doctors, my parents, other people, “God,” or whatever… That’s just the way it is. For a while, I did though… I did blame everyone, I did wonder and lament all the time why did this happen to me, why me, and so on and so forth, like any other egocentric teenager who thinks he’s the only one who’s ever really suffered and no one really understands his suffering… I understand now that it could have been much worse, and I should be content that it’s not… And I am, sort of… It’s just that sometimes I feel so sick and tired of all the hospitals and doctors and needles… Sometimes I feel that my life is just breaks between hospitals, I feel like my life in the hospital is the real life. The rest of the time I’m trying to enjoy the 6-7 months of breathing… knowing that breathing will eventually become heavier and heavier.

Nietzsche said that what doesn’t kill you makes you stronger. I’m not so sure about that. I have to live with these memories that I desperately tried to forget for the rest of my life. I have to live with this virus. I have to live this life. I really don’t know if that makes me stronger. People seem to be amazed that I seem so detached from everything, that nothing seems to affect me, that I always try to keep a smile on my face no matter what. What they don’t understand is that I don’t have a choice. I can’t give in to depression. I won’t give in. Otherwise, all is lost. I’m lost. But I’m not filled with anger or anxiety. I’ve found a sort of balance… of acceptance of my fate. I don’t have a problem with it anymore. It’s part of my life. There’s nothing I can do about it, so I might as well accept it. There’s a sort of passiveness to it… It’s that sense of fatality that you experience in hospital. Nothing really depends on you. Not really. The fact of being a patient implies a certain passiveness. You just sit (or lie) quite passively and wait… to get treatment, to go to surgery, to get better, to eat, to go home, or simply to die… I can’t control what’s happening to me, but I can control my attitude towards it…

Some say that going to sleep and dreaming is a little bit like dying. I disagree. In dreams you see things, you hear, you can have conversations… you’re very much alive. Death, if anything, is like general anesthesia. After experiencing a lot of those, I got used to it. I got used to dying. I accepted my mortality and lost the fear of death.

This was the most personal text I’ve ever written and probably I’ll ever write. It was also one of the hardest (if not the hardest) text I ever wrote. I’m not a very open person; I don’t like talking about my illness because, in my mind, it would divert the other person’s attention from who I really am to the disease. I don’t like public displays of one’s diseases, or deformities… They remind me of a freak-show, and all my life I’ve been trying to avoid that. But talking about these things means to leave them behind and move forward. It means being completely honest with myself. For a long time I’ve been trying to ignore the disease, and to forget all the bad memories, being kind of ashamed of my situation, of not being “normal” (partly because of how other people have treated me, and partly because of how I saw myself, as “inferior”), desperately trying to fit in. Now I’m ready to accept them as being a part of me. I won’t let a virus dictate how I live my life, but I do need to accept it. I’ve spent so much time rejecting it (rejecting who I am, essentially), denying it, now I need to accept it. This is who I am.

I guess I wrote this to better solidify my knowledge of my own self, if that makes any sense.

P.S.: I’ve translated the RRPF brochure into French (rrpfbrochure_2014singlepages – FR) and Romanian (rrpfbrochure_2014singlepages – RO), for anyone interested.


9 thoughts on “Living with RRP

    1. Glad to hear from other survivors :)) I honestly haven’t met anyone older than me that still has RRP ! What treatment are you on right now, if you don’t mind me asking?

      1. Lucian, are you on Facebook? There are a few “groups” with folks like us! Long-term trach for myself with no “treatments” other than surgery. Have tried treatments in the past, but I’ve not been one of the ones that responded. You are NOT alone!!

        1. Oh, I know I’m not alone, I have read about people older than me with RRP, I’ve just never actually met or talked with anyone of them. I’m also one of those patients that did not respond to various treatments (except surgery, of course :)). Yes, I am on Facebook, I will look for those groups, thank you!

  1. Everything you wrote sounds so familiar. My daughter was diagnosed at 22 and we had not a clue in the world what would lie Ahead for her. She had many surgeries some as close as three weeks apart, went through experimental treatments and interferon. She had to travel to Houston, a six hour trip, for surgery. She did have a trach when she was pregnant with her first child, lost her voice and her to depend on an artificial larynx.the trach it actually came out on its own. During her second pregnancy they continued to do surgery. She had two healthy little girls. In December 2010 she was diagnosed with lung cancer and died three months later. This is a horrible disease with very little known and much less research. Her doctor told her it’s because no one famous has it. Keep your chin up and continue to fight.

    1. Sandra, thank you for your kind words and for sharing your story. I’m so sorry about your daughter. That’s actually what I was talking with a friend, the reason why this disease doesn’t get much attention or much funding is because no celebrity has it.

  2. Thank you so much for sharing. I have recently been diagnosed and I am having so much trouble accepting that I can’t perform at work and seem to adapt to my condition. I am afraid that surgery might make it worse. So far i have had none and since I keep hearing that most people that come in contact with hpv overcome it with a healthy immune system and I am praying everyday for a blessing as I am taking everything in the book to boost my defenses. I can imagine how much research you all have done to gain awareness and knowledge about possible treatments. I am sorry to hear that there have been little to no positive responses to the alternative therapies but just keep up your hope and have faith. With all due respect, I can’t help but to ask what therapies have you heard work on others? Im sure many people made suggestions or maybe you read others who have had success in achieving remissions even if its in rare occasions. Can you please share what you have heard that has worked for others… You never know is my motto and I won’t give up trying… when I do find something I would make it my mission to share it with others. Even if there is a 1% chance its enough for me to try, after all we were affected by a virus that causes RRP in less than 1% of the United States population! Odds have been against us from the very beginning who is to say we don’t join the 1% that found remission someway or somehow. Im just hoping I find a case or two where it has been achieved pre-surgery. Please comment and share your knowledge. God Bless you all. thanks

    1. Thank you for your comment, Jayme! Well, Interferon has worked for a while for me, but not anymore (in the sense that it slowed down the development of the papillomas, thus enlarging the period between surgeries; now it doesn’t have any effect anymore – beside the side-effects…). Cidofovir has worked for others (it hasn’t for me, but you could try it). I also tried Indole-3-carbinol (with no effect). To my knowledge, these are the top three drugs used in the treatment of RRP. But first and foremost, you need to talk to a ENT doctor, to establish a proper treatment for you, you need to be very careful in choosing the various drugs. You also need to know the type of your papillomas, to see whether it can become carcinogenic or not (I don’t mean to scare you, but some types can develop into malign tumors). Other than that… what else can I say than good luck and never lose hope. If you have any more questions, don’t hesitate to contact me.

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