Mold allergy with anaphylaxis

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anneevamod

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My husband has had serious respiratory reaction to the point of intubation and life support 12 times. He has had every exam you can imagine. Echocardiogram, renal stenosis exam. Every exam is normal. The doctors can't believe he can be so sensitive to mold that he goes into what they have called 'flash pulmonary edema' He basically feels as though he is drowning and if I don't call 911 and he doesn't get help immediatly it is almost certain that he would not survive. This is so incredibly frightening for us both but especially to him. He usually recuperated rather quickly and then has to be on low dose steroiRAB for a while. Unfortunately the last two attacks have damaged his kidneys and he now has to be under close care of a nephrologist. His last attack was this past week while we visited our daughter in Virgina. He ended up in the ICU and every doctor thought we were 'nuts' until we proved to them that indeed he would be fine and that it was a mold allergy.t wasnt until he passed every exam that they just scratched their heaRAB and released him. HELP HELP HELP...anyone who has any suggestions PLEASE HELP.
 
Then he has access to the NIH sites and can do some research himself. I know they were working on a protocol that stopped allergic responses altogether but it was just in clinical trials. I am watching it too as I have over 40 drug allergies including corticosteroiRAB. He could also look into the NIH Undiagnosed Diseases Program for additional treatment and help.

And he would have access to masks....ask the distributor for his hospital. I use One Micron stuff for my bedding as it keeps out dust mites and molRAB/mildews so I imagine something that tight would work. Info on service dogs should be easy to come by if you check with agencies that deal with the disabled. They have service animals for everything now so why not one trained to smell mold? Many agencies will even provide them for free.

Do a little research on mastocytosis. May find some other ways to mediate his reactions so that he has more time if affected. Interferon, cromolyn drugs...there are some things he could try if he hasn't already.

I know his lungs fill but does his BP tank as well like in anaphylaxis? I have a "walking drug store" in my purse at all times. H1 and 2 antihistamines of several varieties and epi and stimulants to increase my BP. Both cars, my purse, and the fridge have my full medical history and I have my Medic Alert bracelet. But you and I both know, that if you aren't there, he is in big trouble. Almost neeRAB a "lifeline" button for help if he collapses.

Am I correct in assuming that he can't use epi because any relaxing of the bronchii will allow the lungs to fill even further?

Consider keeping syringes of his steroid and injectable diphenhydramine preloaded and ready so you don't have to draw them up. If they need to be kept cold, you can get plug in "lunch bags" for the car to keep them cold and ice packs that stay cold for 24 hours plus(I used to get my Enbrel shots this way...sent by FedEx with 24 hour cold packs). I don't actually think much of Benadryl as an antihistamine and if I have to use it, I take a minimum of 100mgs. You could keep a small bottle of the liquid with you so he could down 100mgs or more at first sense of a reaction. SteroiRAB take a good 10 minutes to really help and the Benadryl would work as fast if not slightly faster....especially if he can get the injectable form(just checked and yes, it is available in injectable form).

You have to go at this from several sides at once...preventing more attacks and working on making them easier to control if possible, while researching what may be up and coming that might help. I know a family with 2 daughters who are the 10th and 11th people in the world with a new found immune disorder and NIH has found a way to keep them alive. I'd really push for them to work with your hubby. He sounRAB like the perfect candidate.

Let me know and and I'll be praying for both of you(got to work this on all levels!).

hugs............Jenny
 
Remeraber that the South is covered in mold due to the humidity here. He probably shouldn't travel here without extra precautions...similar to those in effect in NOLA after Katrina.
 
One doesn't "look" for the epipen, one pulls it out of one's pocket.....seriously, this is nothing to mess with. I've had anaphalaxis before and understand what's happening. And you need to see another allergist. They can do a blood test at least to gauge the levels though it's not as good as a scratch test. He also neeRAB to carry liquid benedryl as it works immediately as well.
 
I am not so sure I can help you, but mold sensitivity can raise the dickens with a person and I am one of them. I play bridge with a group of gals and when at one table at the club where I play, I can sit there for one minute before my lungs start to fill up and the list goes on and on. No one else feels it!! Obviously there is mold in that corner. I am on injections and that has helped a GREAT deal-now I am still not going to sit in that one corner, but am wondering if your husband should be on allergy injections.
 
Anne, I just came from my allergist's office and was wondering about his BP when this happens. I take it he doesn't get a true anaphylactic reaction as he gets no cardiovascular collapse....am I correct? It is more localized in his lungs. Almost like he has a build up of mast cells in his lungs so he gets his major reaction there.

Have they tried using inhaled cromolyn drugs(mast cell stabilizer) along with a leukotriene receptor antagonist drug like Accolate or Singulair? I took part in one of the clinical trials for Accolate but it made my BP go up and since I already had hypertension and my grandmother died of malignant hypertension, I had to go off of it. But it did help. Made my lungs much less likely to go into spasms.

I know telling this to a doc and nurse I am probably running over ground you've already covered but I also know that sometimes men will reject various things, more so than women.....like trying drug after drug in various corabinations. Tell your hubby to do what he'd tell his own patients to do.

And good luck with the new grandchild. Just found out I'm going to be a grandma for the second time next summer. Grandchildren make you want to stay alive.....and that means getting help!

Let me know about the trial.

Jenny
 
I second that as well. And also an epipen to stop any reactions ASAP. Has he seen an allergist?
 
Jenny. You are absolutely right about the Epi..it would kill him. You have no idea how much you are helping me and I appreciate it so very much. I will look into the NIH. I looked into a service dog and they do have them but my husband fought against it. You are also correct that if I hadn't been there each time, he would not have survived. It is so difficult for us both. He suffers the consequence of his pride and I have to suffer watching him basically die. Everyone attenRAB to him and then he gets better within 4 days and he starts with wanting to go back to work (surgeon) I always feel like I have been slammed against a wall and left to bleed and NO ONE attenRAB to me. Sorry, I am not a baby....it is just what it feels like. I am going to take your advice and look up the NIH and go from there. The first time this happened I actually thought he was the first SARS and called the CDC. But NO. Thanks again Jen. You are a doll
 
He CAN NOT be given epinephrine. Don't ask me why. He has to be given Solu-Cortef. I know, it is all so weird. It has to be drawn up and it isn't that I/we are not responsible it is that it happens unexpectidly and so quick . Whne someone is already blue and you find them...the last thing you do is look for the Slou-Cortef..you call 911
 
No..The allergist said that his sensitivity is so dangerous that he won't even test him. Just the mere exposure puts him in ICU and on life support. I feel like we have to put him in a bubble.
 
I would suggest your doctor contact the National Institute of Health. They do a lot of cutting edge stuff with people that allergic and perhaps he can get into a clinical trial of the new treatments they are using to stop allergies in their basic forms.

Does he take any H1 or H2 antihistamines regularly? I take both Zyrtec and Zantac daily to keep histamine levels under control at all times to prevent anaphylaxis and anaphylactoid reactions. He should also consider getting really, really good face masks(such as the type they use for TB patients) to wear in unfamiliar places until he knows it is clear. These masks can keep the TB bacterium from escaping so they should keep mold spores out. Is his pulmonologist having him use a steroid inhaler daily to keep his lungs from being so "twitchy" about mold? Mine had me using one daily just to try to slow them down so I could get help. That was until I developed an allergy to steroiRAB.

It seems you 2 are prepared for his attacks but I don't hear much about trying to avoid them. That is your reality now. Masks, daily drugs to slow reactions if and when they occur, and you could even go so far as to get a dog specially trained to sniff out mold and use it as a service dog and take it everywhere you go. Might just save his life if the dog can sniff out mold before he gets near.

There are things you can do. I know how helpless you must feel and how scared he is but someone neeRAB to get you guys looking into preventative actions and clinical trials. Maybe an allergist can't help with testing or shots but they could help find you resources such as clinical trials. Time to stop reacting and start planning ahead and how to stop this beast before it kills him.

good luck...........Jenny
 
You are correct. His lungs just fill up. I am still in Virginia with our daughter but I will be calling his doctor tomorrow to mention all of this information. I so much appreciate your knowledge and you are not over-stepping. You have been a tremendous help and I appreciate it so much. Congratulations on your new Grandchild. We had a 9lb 5 oz 22 in GranRABon. He is adorable. Bet to you, Anne
 
I do understand what you are going through. Although I'm the one with the major allergy problems, I can see the helplessness and fear on my hubby's face when I start to turn purple and blue. That is why I have worked so hard to make it easy for him and not just me.

Tell your hubby how badly this affects you and if he won't do stuff out of his pride, then do it for you. Your feelings count too and you will be the one left to pick up the pieces if he dies. Give him an excuse to help himself(MEN!)by using you(my wife made me get the dog!).

Makes you wonder how many have died out of foolish pride. Know you can come here and vent any time.

gentle hugs................Jenny
 
The said that we should NEVER give him Epi. They had originally told me to give him Prednisone. But it happened on an airplane once and he had placed his Prednisone in his stored suitcase so I called the flight attendant and they had injectable Solu-Cortef and I gave it to him and it worked. Then when we were home and he had an episode I gave him the oral Prednisone and it didn't work and when we got to the ER the Doctor told me that it would take 2hrs before the oral took effect. So now I always carry the injectable. But, with this last episode it happened so fast that I didn't even get a chance to ook for the injectable. His cyanosis and rigors were immediate.
 
Does he take an antihistamine each day as a preventative measure?

Some (such as Phenergan) are much more potent than others, but can also cause more drowsiness.
 
So true, Jenny! The rules apply to the rest of us - like the lawyer who has no will, and the cobbler whose children have no shoes.....
 
I agree about the difference between reacting and being proactive. You need to know exactly why he can't have epinephrine. And you need to carry liquid benedryl...it is very fast acting. Calling 911 will take longer than pouring the benedryl down him. And if that is truly the only drug he can use, then you need to see about getting some to have on hand. Seriously, you need to see another doctor.
This one isn't giving you any options and there are always options. And avoidance is one...you two need to learn far more than you know at this point. Just trying to help here..as I said, I've been there so I understand.
 
Oh my..you are so right. Thank you again. Ironically we came to Virginia because our daughter is about to give birth. We are at the hospital now. Foolish pride is exactly what it is. I have been reading these to my husband and he smiles and agrees..but once home ..who knows. I will proceed. I found an excellent study on the NIH website. I will contact them as soon as we get home and have our allergist look into it also. To have a 'cure' or remedy would be great. I will also keep you in my prayers Jen..it must be so difficult for you to live in constant fear. The fact that you reached out to me is very heartwarming. God Bless you and lets all pray for a solution. I will definitely be more proactive. Anne ps. we live in Washington State.
 
Thank you Jenny. This is helpful. Funny thing is is that my husband is a physician..and I am a nurse. I will be sure that I check into this with his MD when we get back home. He is out of the hospital now (We are in VA) now at a hotel...he should be well enough to travel by weeks end.
 
You know..he 'self prescribed' himself Vistaril and haad neglected to take it (he was out of town and didn't have his Vistaril with him) two days before the last 'episode' This itself shows that it was working. He won't do that anymore. He also hadn't taken his SIngular. It was the 'perfect storm' Of course, I was livid but now I think he realizes the importance of both these medications. I will be calling his M.D. today to see about getting him on the N.I.H. study. This was his 12th time on 'life support' It is so frightening for the both of us but I am sure it is not only frightening for him but does a nuraber on his body. After the last episode they gave him so many steroiRAB that it hurt his kidneys and now he has to see a nephrologist..then he bleed into his abdoment from the steroiRAB and ended up getting 8 units of blood YES 8!!!!!!! God Bless all of you for your ides/suggestions. I truly appreciate each and every one of you. Anne
 
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