Sunday, November 14, 2010

Where To Go From Here?

On the road to a Porphyria diagnosis, I feel like there are a lot of these signs!

Every day I feel better, which after the year I'vehad is amazing in itself. I recently told my mom, "A coupleof months ago I was happy when I only had a few bad days, now I'm down tobad moments." I've been off of birth control pills (estrogen) for 9 months now... and finally I'm able to do what I want, when I want and still feel good. My old friend Vertigo still visits, but she doesn't stay as long (used to be and isn't as strong. The other day I had a few hours of severe nausea, carrying a plastic bag with me just in case. But that's really my main complaint at this time. Yes, there are other porph things in my life: clusters of small blisters on my fingers and toes, edema (but better since being on a diuretic), headaches, black spots in my vision occasionally.... you get it. But for those who have survived a porph attack, or those that have witnessed such attacks, when you're down to these small complaints, it feels like a victory!

However, with feeling better comes a new problem; do I continue to search for my answer/diagnosis? Part of me says just wait to see if you get sick again and if you do, deal with more testing at that time... after all, that's when my levels will be elevated again. But the other part says do the work - research, phone calls, time on the internet doing crazy google searches trying to find something I haven't already read, seeing new doctors, reading over my stack of medical records again and again - while I'm strong and have the energy to do so.

Many of you have emailed me personally and shared your story. I would say that very clearly, the majority have seen a hematologist. I, on the other hand, have not. It might be the only doctor I haven't seen in the last 2 years! The reason I haven't seen one is because Dr. Premier wants me to see someone who has treated a porph before... well good luck there. Even living in a large city, he hasn't been able to find someone. Many of you have offered to send me your hem's contact info to do a phone consultation, and I'm sorry if I haven't answered you, it's just that I don't really know what to do right now.

So the question is, do I find a hematologist to see/consult with now or just live life and cross that bridge when I come to it? This is not a rhetorical question, I would actually like someone's advise!!!


  1. Jan,

    I wish answers came easier to us than they do. I understand exactly how you feel. I only chose to keep fighting for the sake of my children and now my dad.

    Life has given us a "gift" that keeps us guessing. Ask yourself some questions. Do I want kids? What is the chance that my child will have this? Can I handle it if they do?

    I love my kids with my all. They have kept me going through some of the worst attacks but....

    Had I known then what I know now, I don't think I would have had children but I also know that if I had the simple little diagnosis their lives would be easy. It is not hard to go get a glucose or heme IV. Maybe not ideal but none the less a breeze compared to what we go through. So if I had the diagnosis, I would have chose to have my children with little second thought.

    None of us like to go to doctors especially when we know they are just going to tell us we are nuts. You and I have had more than our fair share of quacks that make us feel worse. Like we don't feel bad enough about everything already?

    I would love to tell you not to give up but again, I know how you feel and how it consumes your life. (I try not to say the "P" word to my husband) One begins to think life would be better just to live it and deal with symptoms as they come.

    I give you this to ponder. Is it just me that I have to worry about?

    If you do decide to continue the fight, think of taking a new approach as I have. I have stopped trying to prove that it is Porphyria and started asking the doctors what causes urine to change color with the symptoms of mental change. I have started letting the doctors try to prove it.

    What ever you decide, I will cheer you on and wish you the best.

    Hugs to Jan,

  2. Keep fighting!! The last 6 months have been a nightmare for me but I, like you, will not give up! Those of us that are not diagnosed have to keep fighting!! After the first of the year my doctor is going to send me to Galveston, where Dr. Anderson is. I live in Dallas so it's not a bad drive. I know you live far but you might want to think about going to one of the doctors listed on the porphyria foundation website! Don't give up!!! We're all in this together.

  3. Dear Jan, Im sorry to hear how sick you have been and how hard it has been for you to find help.Thats all we realy are asking for. My 15 year old son has been sick now for over two years, we just sent off DNA to Mt sinia, waiting for results my next step is Mayo. Did you ever make it there? Good luck, Know that your not the only one in the same boat. Keep asking why...