Just Plain Ruff Posted November 23, 2008 Share Posted November 23, 2008 Well after a terrible scare to my wife and I my father in law is ok. He collapsed at home and when my ambulance crew arrived at his house he was blue and what appeared to be nearly a respiratory arrest. This is not the first episode of this type he has had but this is the first time it has been as bad as it was. The responding crew requested a scene flight and transfer to the cardiology center St. Lukes Hospital in Kansas city which is where is doctor is. He was alert and awake on his arrival at the receiving hospital . The ED physician poo poo'd his symptoms and didn't even look at the EMS copy of the 12 leads saying "well paramedics only have a high school education so I don't put too much stock in their reading of 12 leads" and my wife and her dad spoke up and said "my husband is a paramedic" and her dad said "and he has a master's degree" and the doctor couldn't extricate himself out of the room fast enough. Fricking jerk. Well they admitted him and his cardiologist worked him up. He didn't have an MI I don't think even though his markers were slightly elevated. What they have over the last several years done for my dad in law is a million tests with no set in stone diagnosis. The one they are working on right now (a hypothesis) is mastocytosis which is a bad thing in adults. He will progressively get worse spells and one of them will kill him. I guess the question I have for any of you is is anyone out there very knowledgeable in the disease Mastocytosis. It's so rare that only 7 in every million people have this disorder. My father in law is one in a million so I wouldn't put it past him that he has this rare disease. I also believe that my wife may have it because she has some of the same symptoms. I guess I"m putting out a call to the core group here, dust, AK, ERDOc, Doczilla and others in helping me find more info about this. The two main reasons are as follows 1. so I can help my wife and her family deal with this and get them good information and second 2. so I can help my EMS crews better take care of my father in law when this happens. They flew him from his house to the city and we were fortunate to live in the city so he wasn't alone when he got to the receiving hospital. If anyone prays please do so for my family and my wife and her father in law. I'm working on 3 hours of sleep in the last 42 hours. I'm heading to bed now Link to comment Share on other sites More sharing options...
spenac Posted November 23, 2008 Share Posted November 23, 2008 Ruff sorry about the hard time. Hope your family the best. As I am not familiar with this I'm going to let the others come up with information. Hang in there, your EMS family is pulling for you. Link to comment Share on other sites More sharing options...
itku2er Posted November 23, 2008 Share Posted November 23, 2008 Riff Raff we are here if you need us BRO...... Hope everything continues to improve. Thoughts and prayers for you and your family. Link to comment Share on other sites More sharing options...
emtannie Posted November 23, 2008 Share Posted November 23, 2008 Ruff, my prayers are with you and your family... I am sorry I don't have information, but next time I am at the hospital, I will ask a couple of my favorite docs and see where they direct me. Link to comment Share on other sites More sharing options...
Just Plain Ruff Posted November 23, 2008 Author Share Posted November 23, 2008 remember that the mastocytosis is a working hypotheses but it's the closest to his symptoms and his symptoms are pretty textbook masto. I've been to emedicine.com and the most glaring thing was that most adults diagnosed with this do not live more than 5 or so years past onset of symptoms. Mastocytosis from what I can read is a massive influx of mast cells that invade the body causing syncope and unconsciousness. This spell was by far the worst he's had. The crew on scene first thought he was in arrest. I'm going to be teaching the wife and brothers CPR and I'm going to push for an AED at his house. I'll even help her get trained on using a bag valve mask if the doctors are willing. It will take us 11 minutes to get to his house from our hospital so that's a little too long to be without oxygen or god forbid a heart beat. Link to comment Share on other sites More sharing options...
spenac Posted November 23, 2008 Share Posted November 23, 2008 Thats good thinking. AEDs are getting cheaper and maybe insurance would cover if prescribed. Link to comment Share on other sites More sharing options...
Lone Star Posted November 23, 2008 Share Posted November 23, 2008 Ruff, My thoughts and prayers are with you and your family. Please keep us posted with what you find out. We're here if you need us, so don't be bashful about picking one or some of us for a 'leaning post'. It's what family does! Link to comment Share on other sites More sharing options...
Dustdevil Posted November 23, 2008 Share Posted November 23, 2008 Man, this is a new one on me. I mean, I know what mastocytosis is simply from defining the terms in the word, so I can guess what is happening. But I have no experience with this. I would assume that acute treatment would be similar to the anaphylactoid and auto-immune states, but long term treatment would be something very different, I'm sure. My thoughts are certainly with him and the family. I know how frustrating it is to want and need answers, when the doctors don't seem to be in any particular hurry to find them for you. But there's only so many tests you can do, I suppose. I hope this situation gets worked out favourably in the very near future so you can all have some peace of mind. Link to comment Share on other sites More sharing options...
ninjaemtff Posted November 23, 2008 Share Posted November 23, 2008 Ruff, I'm sorry to hear about this. My thought and prayers are with you family. Link to comment Share on other sites More sharing options...
Kaisu Posted November 23, 2008 Share Posted November 23, 2008 I am sorry to hear of this situation Ruff. I am a praying gal so that is what I will do. You stay strong and post often to let us know what is happening. Perhaps you can educate us as you learn about this. PS.. don't take those prognosis of life expectancy to heart. Your father in law is one in a million and there isn't that large a sample size of this illness to predict. My husband was diagnosed in 2000 with his lung condition and the average life expectancy is 10 years. He is almost 9 years out (in January) with NO loss of lung function since diagnoses. He will probably outlive me. (only the good die young) Link to comment Share on other sites More sharing options...
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