A light mist hangs suspended in the air, air that is sultry and moist. The birds sing their dawn chorus. Little Guy had a bad dream. Aroused from sleep at 4am I stumbled in the waning dark in search of "magic spray" (my perfume)that chases bad dreams away. A kiss and a cuddle and Little Guy sleeps again but mama's wide awake! And so it goes....
It seems I may have unintentionally created drama with my last post. No need for drama, no need for worrying or fretting. In fact her words, if anything, bring comfort, "time...", "peaceful....".
Have I told you lately that I am feeling really well these days? I feel like the sparkle is back, the energy is flowing. I had another infusion yesterday and it went really, really well. As I lay there receiving the medicine in my veins I imagined the healing that was taking place. I have been experimenting a little with meditation and was able to do a little healing meditation, blessing those around me, those in pain, those taking care of me and those close to my heart. (I don't know if that really helps others, but I know it helps me and my relationship with the world.)
The results from my CT scan of the previous week came back and my lungs appear to be stable, no new damage. Good news indeed! It seems that the remicade infusions, while maybe not completely eliminating the disease is at least inhibiting further lung damage. The report notes the loss of lung volume from previous disease activity and extensive fibrosis and scarring of lung tissue and of course bronchiectasis (floppy airways)in the lower lobes. But...just a week or so ago the New England Journal of Medicine published the findings of a study funded by The National Institute of Health and carried out at Brigham and Women's Hospital in Boston. This study claims to have identified stem cells capable of repairing damaged lung tissue. Of course it is a controversial study and of course it so far has only been conducted on mice (to which we owe so much gratitude for their contribution to medicine, seriously!) but surely it is a sign of hope and progress.
http://www.sciencedaily.com/releases/2011/05/110511170837.htm
I certainly think it is!
"Well, you will never run a marathon." Etty suffers from ongoing Sarcoidosis which is a chronic inflammatory disease that primarily involves the lungs. Niamh, her sister, likes to run and is going to run the Cork City Marathon on June 6th to raise funds for those suffering from chronic lung diseases. This blog will be a parallel account of their trials and tribulations in the coming months: the would-be marathoner; the mother-of-three moving home and struggling with serious, ongoing Sarcoidosis.
Showing posts with label remicade. Show all posts
Showing posts with label remicade. Show all posts
Friday, May 27, 2011
Friday, April 15, 2011
Running...
I just read Niamh's last two wonderful posts and I am filled with pride, wonder, awe and love for her! What an undertaking this is, something that requires such dedication, strength of body, mind and will. She is truly an inspiration. Boston is gearing up for the Boston Marathon this coming Monday so our airwaves are full of marathon chatter and I have enjoyed the newfound perspectives and deep respect I have on the day to day life of a marathon-runner.
I have been quiet on here, I know. There are expectations that I feel unable to meet right now. I confess to being quite overwhelmed. It is all good, really, it is, but I have been struggling to find my center, to be grounded, to feeling "all-put-back-together-again". The needs of the children and of the upkeep and organization of the home seem to be constant and there is never enough time in the day to meet them all. It continues to feel like a positive move for us, there are no regrets in the least but, as Mam reminds me every week when we chat on the phone, there is such huge upheaval in moving, it takes time to settle...
I had another week of running (figuratively of course!) in and out of Boston to the hospital but finally, on Wednesday, I received my remicade infusion, only two days late! I consider it quite a miracle that everything fell in to place. The infusion went really well and the infusion staff were so lovely and kind that they made it almost a pleasurable experience! I usually feel quite tired for a day or two after and this time was no exception, it seems to take me until about day five before I start to feel the effects of the medication. I am so grateful that it all worked out and so grateful to Pulmo Doc for pulling it all together. There was an anxious moment just before the infusion when the nurse "read" my PPD to see if I had a reaction to the TB test that had been placed two days before. It looked like it was showing positive for TB exposure. The injection site was red and rashy. This would have been a complete show-stopper for remicade. After three different nurses looked at it, a call to the head TB nurse who reads these all the time and a consultation with Pulmo Doc they decided that I had an allergic reaction to the serum used for the injection and I got the all clear. Whew!
I will be thinking of you tomorrow Niamh: run well, run free, breathe deep and full, stretch those beautifully long and toned legs, enjoy the wind on your face, at your back, embrace the hills and love the straights and imagine us, all of us, running right there beside you, urging you on, loving you on, hear our cheers on the wind and whispering in the trees, run for us, breathe deep and full for us...
I have been quiet on here, I know. There are expectations that I feel unable to meet right now. I confess to being quite overwhelmed. It is all good, really, it is, but I have been struggling to find my center, to be grounded, to feeling "all-put-back-together-again". The needs of the children and of the upkeep and organization of the home seem to be constant and there is never enough time in the day to meet them all. It continues to feel like a positive move for us, there are no regrets in the least but, as Mam reminds me every week when we chat on the phone, there is such huge upheaval in moving, it takes time to settle...
I had another week of running (figuratively of course!) in and out of Boston to the hospital but finally, on Wednesday, I received my remicade infusion, only two days late! I consider it quite a miracle that everything fell in to place. The infusion went really well and the infusion staff were so lovely and kind that they made it almost a pleasurable experience! I usually feel quite tired for a day or two after and this time was no exception, it seems to take me until about day five before I start to feel the effects of the medication. I am so grateful that it all worked out and so grateful to Pulmo Doc for pulling it all together. There was an anxious moment just before the infusion when the nurse "read" my PPD to see if I had a reaction to the TB test that had been placed two days before. It looked like it was showing positive for TB exposure. The injection site was red and rashy. This would have been a complete show-stopper for remicade. After three different nurses looked at it, a call to the head TB nurse who reads these all the time and a consultation with Pulmo Doc they decided that I had an allergic reaction to the serum used for the injection and I got the all clear. Whew!
I will be thinking of you tomorrow Niamh: run well, run free, breathe deep and full, stretch those beautifully long and toned legs, enjoy the wind on your face, at your back, embrace the hills and love the straights and imagine us, all of us, running right there beside you, urging you on, loving you on, hear our cheers on the wind and whispering in the trees, run for us, breathe deep and full for us...
Thursday, April 7, 2011
A Day in the City 3, (The "To-Do" List)
Pulmo Doc was concerned about the aspergillus exposure and also concerned about my recent exposure to TB while visiting Ireland in November last, even though the person with the history of TB had successfully completed the required treatment for TB several months before. "Because of the risks that come with remicade we'll need another PPD before we proceed" he said. A PPD is a tuberculin skin test that indicates exposure to TB. "We'll need to get you set up with a cardiologist too. I'll think carefully about the right one to follow you. It needs to be someone accustomed to following sarcoidosis patients as not all cardiologists recognise sarcoidosis in the heart. We'll need EKGs every three months or so to establish data and then see how we should proceed after that." The thought of this was making my heart flutter already! "We'll need to see a rheumatologist to follow the remicade infusions and of course you'll need to see an opthamologist to get regular eye exams to make sure you don't develop involvement of the eyes. And of course we'll need another CT of the chest and lungs to take another look at the lung cavity. It's best to get the remicade infusions done here in Boston at first so we can keep an eye on things and get your regular bloodwork established, then we can think about transferring you to an infusion center closer to home. And I'd like to read your medical history thoroughly and do some thinking and get together with you in a few weeks again". I felt myself wilting in front of him. I knew he was right of course, and I was grateful for his commitment to being thorough and in establishing good care but I could tell that the next several months were going to involve several trips in to Boston. I was going to get very good at this train thing!
All in all, it was a good visit. I had no doubt that Pulmo Doc was skilled in the treatment of sarcoidosis but I left with the feeling that perhaps Pulmo Doc wasn't used to treating sarcoidosis patients with remicade and that concerned me. There is a strong possibility that insurance will reject his request that I be treated with such an expensive drug. (Remember that my insurance requires me to get "permission" for any visits with specialty doctors and for any procedures). Will Pulmo Doc feel strong enough in his convictions to fight with them for me when and if the time comes? Only time will tell. My next infusion is due this coming Monday. I don't know if we can pull all of this together in time....
All in all, it was a good visit. I had no doubt that Pulmo Doc was skilled in the treatment of sarcoidosis but I left with the feeling that perhaps Pulmo Doc wasn't used to treating sarcoidosis patients with remicade and that concerned me. There is a strong possibility that insurance will reject his request that I be treated with such an expensive drug. (Remember that my insurance requires me to get "permission" for any visits with specialty doctors and for any procedures). Will Pulmo Doc feel strong enough in his convictions to fight with them for me when and if the time comes? Only time will tell. My next infusion is due this coming Monday. I don't know if we can pull all of this together in time....
Tuesday, April 5, 2011
A Day in the City 2 (How do you get to NJH?)
Over an hour later I heard my name called and looked up to see a white coated gentleman walking towards me. On the hospital website there is a picture of Pulmo Doc siting very tall and straight, looking bulky and well built like a football player. I recognised his face but this was no football player. When I stood to greet him I was the taller one (although to be fair, I do stand at 5' 10" in my bare feet!) He lacked the easy affable, friendly nature and banter of my previous pulmo doc and I felt unsure about him at first but I quickly came to recognise a quiet intensity that I could identify with and an attention to detail and specifics that was reassuring. He was very soft-spoken and kindness and gentleness radiated from his eyes. We chatted about my health history, chatted about my current medication regime and as expected I found myself having to justify some of that.
You may remember from previous posts that currently my main treatment for sarcoidosis is an infusion every 6 weeks of a TNF inhibitor called remicade. It inhibits the reproduction capability of the specific cells that are understood to be responsible for forming granulomas or inflammation in the sarcoidosis disease process. Remicade was developed for use with rhematoid arthritis patients, it has not been officially sanctioned by the Food and Drug Administration for the treatment of sarcoidosis. This can cause concern for physicians and insurance companies. I have heard that one infusion of remicade can cost between $10,000 and $15,000. Physicians are concerned about the longterm effects of taking remicade: increased susceptibility to developing certain kinds of cancer being a major one, heart disease being another. The immuno-suppression that comes from taking such a drug also increase one's susceptibilty to serious infection, respiratory infections in particular. Remicade has been known to reactivate otherwise latent diseases such as TB. To begin a regime of remicade in the treatment of sarcoidosis demands that one have explored many other medication options first. It is not a treatment to begin without serious consideration and weighing of the risks and benefits involved.
I imagined I could see all of this passing through Pulmo Docs mind. He was quiet and thoughtful, then came the big question. "Have you ever had any kind of serious infection?" he asked. I paused wondering how best to answer this. "Well, yes. In late 2006 I developed pneumonia-like symptoms that my primary doc treated repeatedly with antibiotics. It got progressively worse." The memories came flooding back... I had been having frequent coughing fits that became increasingly productive (think thick green mucus here, sorry to be so yucky!) and eventually coughing up blood. Sometimes I observed tiny black specks in there. This went on for months. I was losing weight rapidly. In March of 2007 I asked my primary doc if we could take a sputum sample. It came back positive for some kind of fungus. The immediate thought was that I had cocidioidiomycosis or Valley Fever, not an uncommon diagnosis in the desert southwest although uncommon up in the mountains where I lived. I started on treatment for Valley Fever while we waited for the culture to grow out some more. It takes 6-8 weeks to get accurate, specific results. Finally I got a call from my primary doc, he was on vacation but had been checking in with the lab. "It's not Valley Fever" he said. "It's aspergillus niger. That's a common fungus all around us but usually doesn't pose a problem except it finds a compatible host. It has colonized in your lung. We need to get you to a large medical facility that is skilled in treating such things. This is bigger than I can handle" he humbly said.
A CT scan of the lungs revealed that chronic inflammation had eaten away a cavity in the upper lobe of my left lung creating a perfect environment for some opportunistic and reproductively-anxious aspergillus to set up home. I now knew why my left lung hurt so much to breathe in and why it hurt so much to cough and why I coughed up little black specks and blood all the time. This was a dangerous diagnosis. If left unchecked it could be fatal. I was still on some low dose of prednisone, an immuno-suppressing steroid. That had to be stopped immediately to allow my immune system to fight back the infection. A treatment of aspergillus-specific anti-fungals needed to be begun. My primary doc had done his residency at National Jewish Hospital in Colorado, one of the primary hospitals in the US for lung disease, and had some contacts there. He started working on getting me in for a consultation. And thus began my relationship with NJH...
You may remember from previous posts that currently my main treatment for sarcoidosis is an infusion every 6 weeks of a TNF inhibitor called remicade. It inhibits the reproduction capability of the specific cells that are understood to be responsible for forming granulomas or inflammation in the sarcoidosis disease process. Remicade was developed for use with rhematoid arthritis patients, it has not been officially sanctioned by the Food and Drug Administration for the treatment of sarcoidosis. This can cause concern for physicians and insurance companies. I have heard that one infusion of remicade can cost between $10,000 and $15,000. Physicians are concerned about the longterm effects of taking remicade: increased susceptibility to developing certain kinds of cancer being a major one, heart disease being another. The immuno-suppression that comes from taking such a drug also increase one's susceptibilty to serious infection, respiratory infections in particular. Remicade has been known to reactivate otherwise latent diseases such as TB. To begin a regime of remicade in the treatment of sarcoidosis demands that one have explored many other medication options first. It is not a treatment to begin without serious consideration and weighing of the risks and benefits involved.
I imagined I could see all of this passing through Pulmo Docs mind. He was quiet and thoughtful, then came the big question. "Have you ever had any kind of serious infection?" he asked. I paused wondering how best to answer this. "Well, yes. In late 2006 I developed pneumonia-like symptoms that my primary doc treated repeatedly with antibiotics. It got progressively worse." The memories came flooding back... I had been having frequent coughing fits that became increasingly productive (think thick green mucus here, sorry to be so yucky!) and eventually coughing up blood. Sometimes I observed tiny black specks in there. This went on for months. I was losing weight rapidly. In March of 2007 I asked my primary doc if we could take a sputum sample. It came back positive for some kind of fungus. The immediate thought was that I had cocidioidiomycosis or Valley Fever, not an uncommon diagnosis in the desert southwest although uncommon up in the mountains where I lived. I started on treatment for Valley Fever while we waited for the culture to grow out some more. It takes 6-8 weeks to get accurate, specific results. Finally I got a call from my primary doc, he was on vacation but had been checking in with the lab. "It's not Valley Fever" he said. "It's aspergillus niger. That's a common fungus all around us but usually doesn't pose a problem except it finds a compatible host. It has colonized in your lung. We need to get you to a large medical facility that is skilled in treating such things. This is bigger than I can handle" he humbly said.
A CT scan of the lungs revealed that chronic inflammation had eaten away a cavity in the upper lobe of my left lung creating a perfect environment for some opportunistic and reproductively-anxious aspergillus to set up home. I now knew why my left lung hurt so much to breathe in and why it hurt so much to cough and why I coughed up little black specks and blood all the time. This was a dangerous diagnosis. If left unchecked it could be fatal. I was still on some low dose of prednisone, an immuno-suppressing steroid. That had to be stopped immediately to allow my immune system to fight back the infection. A treatment of aspergillus-specific anti-fungals needed to be begun. My primary doc had done his residency at National Jewish Hospital in Colorado, one of the primary hospitals in the US for lung disease, and had some contacts there. He started working on getting me in for a consultation. And thus began my relationship with NJH...
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