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After years of going to doctors for chest pain, fatigue, and a chronic cough, I have been told that I was having anxiety attacks, gas pain, or I just had a cold. I have been on OTC meds for congestion for months at a time. I have been told I had pleurisy. I have gone to the doctors. I have followed their recommendations. Nothing has helped.
Yesterday, my MIL is a nurse for an asthma/allergy dr, insisted that I come down. I had said I didn't feel well and she heard me cough while she and I were on the phone. SHe just felt like something was wrong. It scared her. SHe called me 4 times yesterday asking me to come down and get a pulmonary function test. She never bosses me around or insists on anything. When I figured out that she was scared, I went.
THe first thing she did when I got there was give me a Pulmonary Function Test. I knew it was bad when she teared up looking at the screen. 11.9% lung capacity in my small airways. 13% in the other. They tested it twice. In the end it took 2 epinephrine shots and nebulizer treatments to get me to 50% lung capacity.
I am not just asthmatic, I am acutely asthmatic. The nurse who worked with my MIL has been doing this 20 years and never seen a test as bad as mine.
I have been suffocating for 35 years. I have stood in ER's and InstaCare's, switched dr's, gone to herbalists. I have done everything within my power to find out what the problem was. But even though I gave what I know now to be symptoms of severe asthma, I didn't have one symptom that they look for. I don't wheeze. Largely because I cannot move enough air to do so. So when I had diminished breath sounds, I always got treated for congestion instead asthma.
It is unbelievable to me that I could have such a serious problem that is actually life threatening and have it go unnoticed.
It is also extremely annoying that I haven't gotten a single birthday wish in 35 years. Because I cannot blow out candles. What a rip off. And epi hurts. And I don't want a chronic illness. And my monthly meds are going to run just slightly less than our mortgage. And medic alert bracelets are not cute. And I don't want to go the dr as often as he wants me to.
And yes I am very grateful that my MIL pressed the issue. I realize that she was inspired to intervene. I am grateful that she and I have a good relationship and she was someone that I would listen too.
I just don't understand how I could be seriously ill and not get any help all these years. On the upside, maybe I'll like breathing once I start. My Dr says it's fun.
Posts: 7932 | Registered: Jun 2005
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Sorry to hear about the chronic diagnosis, Gracie. And about the birthday wishes.
Casi's mom had a similar experience, where she went undiagnosed for a long time. I'll let her tell that story....
Posts: 2801 | Registered: Mar 2006
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I'm just not up to telling that story today.
Gracie, I know how you feel, in a way. I know how it feels to realize that you have a "normal" life and turn around one day and realize that you never did and that you have this crap that you will have to deal with everyday for the rest of your life. And you don't want it. And on top of the rest of it, it's just overwhelming. So, I will send you some and let you know that you aren't alone. But I am so glad that you will have improved health now.
Posts: 3274 | Registered: Mar 2006
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quote: I know how it feels to realize that you have a "normal" life and turn around one day and realize that you never did and that you have this crap that you will have to deal with everyday for the rest of your life. And you don't want it.
I was having a hard time figuring out why I am so mad. That's it.
Posts: 7932 | Registered: Jun 2005
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posted
Gracie, treatments are expensive and inconvenient but what a blessing that you will be able to breathe! Your life is about to change. And no more quessing.
We found out a long time ago that Dr.s are people. We spent over a year frantically trying to figure out what was wrong with Ryan. The worst diagnonis was a sympathetic look and a pat on the head, the best was hearing loss. Even Primary Children's was unable to give us an accurate diagnosis. Dr.'s are fallible. Cases that don't fall into the usual pattern are a puzzle, even to them.
posted
In a little while (maybe more than a little while) you will start to realize that you had to deal with it all anyway, though you didn't know that's what you were doing. And that treating it will make it better in the long run. But the mental process of accepting it all takes awhile. I can't tell you how long yet. When I find it out, I'll let you know.
Posts: 3274 | Registered: Mar 2006
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EDG. No wonder! Oxygen does wonderful things for you. I'm sorry about your diagnosis, but on the other hand I'm glad you finally know where the problem is.
Posts: 4325 | Registered: Jul 2004
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There sure are a lot hurdles to overcome, nice to get a name for the hurdles, then we can learn how to jump them better. Sorry you got a big one. Thoughts and prayers for you and your families new adjustments. PS. You can re-bead the medical alert bracelet and make it a little more snazzy.
Posts: 682 | Registered: Jun 2005
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I have to buy a nebulizer. Do you know how many massages or cute shoes you can get for the price of a nebulizer?
Part of this is just good old fashioned denial. I've lived without all this for years. Do I really have to have it now...
Posts: 7932 | Registered: Jun 2005
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posted
I guess it is better late than never to know and be able to treat your asthma, EDG. Now you can treat your problem (as much of pain as that may or may not be) and enjoy better breathing. So, I have to say congratulations on finally getting a diagnosis that will probably change your life and I hope for the better.
As a child in PE I always struggled with the running. It had to do with the problem of breathing (it was hard). No one seemed to care I was having a hard time with it. I would take a couple of days to recover from the long runs. It wasn't until Ricks that I went to a doctor about it (my father always threw a fit when my mom would take us to doctors for any reason so I never saw a doctor for it). He diagnosed me with exertional asthma and I got out of having to run 1.5 miles for a mandatory class.
I had my first kinda scary asthma attack while helping the YM with a service project a few years ago. It was scary merely because I had never had a asthma attack before and not because it was severe (it was not). We were removing a tree from a members front yard. I think a combination of allergies and asthma created the attack. I haven't had one since but I am careful to stop activity before I get to one.
Posts: 5574 | Registered: Sep 2001
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hello. my name is ethos. and I am an asthmatic.
I have had chronic asthma that was diagnosed over 25 years ago. as a child, my parents were scared to death on many occasions. I also have many many allergies which provoke my asthma and then things get crazy. I do not know what it means to run, swim, bike, play sports, without having trouble breathing. I will be on inhaled steroids for the rest of my life (provided something better doesn't come along). I have managed to control my asthma, and do not feel that my life has been less than normal. I know how it feels to go w/o medication, and I offer my encouragement to you, grace. I hope you see tremendous improvement in breathing and quality of life now that you will be able to breathe clearly and get some much needed oxygen through your blood.
welcome to the club, sister. we will look forward to perfect bodies together. Posts: 219 | Registered: Sep 2005
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Oh dear. What will EDG's brain be like, now that it has oxygen!? I'm a little scared...
--Ray
PS> When I was diagnosed with chronic sleep apneas way back when, I was told that my blood oxygen absorbtion rate was so low during my sleep that were I not sleeping I'd be dead... and that if I didn't do anything about the problem, I'd most likely have a stroke or some worse health complication within the next 5-10 years...
Posts: 13026 | Registered: Oct 98
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I'm sorry to hear that, EDG. My wife and kids are asthmatic too, though not as severely. Do you guys not have health coverage? Won't the insurer cover part of the costs?
Posts: 2205 | Registered: Feb 2002
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We actually have really good insurance. It is just that the meds I need are so expensive and need to be taken on an ongoing basis.
Plus I have to buy equipment like the nebulizer because in the long run it is cheaper to buy it than rent it even with the insurance paying part of the rental.
Posts: 7932 | Registered: Jun 2005
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Can you eBay a nebulizer or anything like that? I know my sister has one but she needs it for her son...
Posts: 3274 | Registered: Mar 2006
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posted
I'm assuming you'll be checking what percentage your insurance will pay toward durable equipment. But, if you haven't thought to do so ask if they have a prefered vendor, they may have a volume discount setup.
Posts: 10860 | Registered: Oct 2004
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quote:And my monthly meds are going to run just slightly less than our mortgage.
Contact the company that makes the medication. They will often pay for all or part of the cost of your meds if you can't afford them.
I'm glad you've been diagnosed. I have a friend whose sister died of asthma. Much better to know that you have it than to not.
If you have insurance, they'll often pay most of the cost of a nebulizer if you're that bad, and that can really save on emergency room bills.
Everyone in my family seems to have asthma to some extent or another. You learn to deal with the medication, because let's face it, it's much better to breathe and have some side effects than to die.
(((lots of hugs)))
Posts: 8147 | Registered: Aug 2004
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I am so sad for you - the great advances in medicine should extend to everything - including timely diagnostics. Posts: 248 | Registered: Mar 2005
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quote: Oh dear. What will EDG's brain be like, now that it has oxygen!? I'm a little scared...
This is exactly what I was thinking! I've been a bit intimidated by EDG's intelligence and I was wondering how much greater it would be on oxygen.
Posts: 578 | Registered: Feb 2006
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One thing you may want to consider after things have leveled out and your breathing is on even keel is to look into if any sort of allergen or pollutant contributes to the problem. Mrs. Cat Herder developed juvenile asthma in her mid teens, and had it really bad when we first started dating and the first couple years of our marriage. She has been relatively free of it for the past 5 - 8 years (can't remember how long), but we determined that there were definite conditions that contributed to asthmatic episodes. She was on inhalers and took oral medication for it, but sometimes the only way she could get through an episode would be to pass out, and that would make her weaker and more susceptible until conditions got better. She has pretty much grown out of it, and now we just have to watch out for is her getting too run down (emotionally as well as physically) when it is hot and humid. Make sure the whole family gets educated in what to expect, how to react, and what to do in an emergency to help if an attack comes on.
quote:I've been a bit intimidated by EDG's intelligence
Please do me a big favor. Make a list entitled "Human train wrecks that I should never find intimidating in the least because they are flawed in just about every possible way and also eat too much chocolate ice cream when faced with the most minute amount of opposition". Then put me on the very top of the list.
Posts: 7932 | Registered: Jun 2005
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quote:Contact the company that makes the medication. They will often pay for all or part of the cost of your meds if you can't afford them.
True. My Dr. requires Remicaid treatments be paid for in full at the time of service. Even with insurance, we have paid as much as $1200 out-of-pocket for one treatment. Almost by accident we discovered an organization that reimburses us for out-of-pocket. Check into it. Ask your Dr. Ask the local or national asthma foundation. Ask the maker of the drugs you take. There may be help available.
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Blue Bunny's light chocolate rocky road ice cream isn't bad either. Not that I know that from any kind of personal experience.
Posts: 5737 | Registered: Oct 2004
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You know what else is nice about Blue Bunny? They have some nice oval-shaped containers. Much easier to hold than the regular half-gallon circular ones. If you were to, just for instance, say, want to eat right out of the carton.
Posts: 5737 | Registered: Oct 2004
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YES! And I like the lids much better. Less chance of freezer burn (as if ice cream in this house has ever had the chance to get freezer burn).
Posts: 4325 | Registered: Jul 2004
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I just had to point out to my husband that the red part comes off, not the white part...otherwise, his manly strength would have wrestled the whole top off.
Posts: 5737 | Registered: Oct 2004
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I knew a number of medical doctors when they were just humble students. My association with them from those days did not inspire uniform confidence in their analytical skills. In fact, if I did not know any better, most of them could have easily passed for sociology majors. Concern for "public health" issues tended to have them believing in their incipient omniscience regarding public policy. I can honestly say that only two were genuinely scientific in approaching problems...the rest were cookbooking it. (Veterinary students actually faired much better in this respect.)
I am sure that the practice of medicine eventually turned most into very capable health care providers, but no MD should be given the benefit of the doubt. I had an emergency room doctor prescribe ANTIBIOTICS for Poison Oak not long ago! More recently, a well known OB/GYN in our area told my wife that Rh negative women could experience difficulty getting pregnant from an Rh positive male due to immune respone against spermatozoa.
Sometimes it is not just human error a doctor is falling prey to, it is bonafide stupidity.
I am so sorry to hear about your recent diagnostic revelation...I would be livid. On the bright side, you are about to appreciate what it must be like to go from mortality to immortality. My youngest daughter has problems similar to Ray's, and her world changed when, even partial, relief came. By the way, it was an astute anesthesiologist who discovered her problem when he had difficulty passing an infant diameter breathing tube through the tracheal opening (She was three years old.). What frosted me is that I had pointed out her labored breathing to one of Sacramento's best cardiologists two years previously, and he passed it off as parental oversensitivity (Can you believe it...me over-sensitive? ).
Posts: 1942 | Registered: Feb 2005
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My MIL reminds that they are just practicing medicine in hopes of getting good at it. Every time I got told that I was having panick attacks I would get really mad. Because I knew they weren't going to help me. I knew that I wasn't having panick attacks but they were just sure they knew best.
It makes me a little concerned about others getting that diagnosis. They passed me off like that without ever checking for a serious life threatening illness. It makes me wonder what other disease can hide behind "Well ma'am you're experiencing a panic attack".
The funny thing is that I wa so calm yesterday, the Dr and I actually talked about what I was doing in my head while this was happening. My mother in law said that I would have gotten help years ago if I wasn't so calm about it.
Panic attacks indeed.
Noel, I'm so glad your baby girl has vigilant parents. I wish more kids did.
Posts: 7932 | Registered: Jun 2005
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Congratulations!! I don't mean to be crude, and you DO have good reason to be upset - but you also have great reason to celebrate! 11% increased to 50%, that is GREAT, and they will likely to be able to increase it further.
All the mis-diagnosis suck, but the correct diagnosis should bring nothing but comfort and increased capacity for both breathing and enjoying other areas of life! Besides, you can always choose to skip doses of medicine or Dr. appointments if you chose to...
Posts: 1237 | Registered: Sep 2002
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EDG, I sympathize. It's taken me over a decade to get diagnosed with one medical problem (sleep apnea) which was originally diagnosed as depression. Just a leetle bit of a difference there.
And it took me until I was 34 to be diagnosed with asthma, which I'd apparently had since I was a small child but had no clue. Well, except the first doctor (a specialist, no less) told me it wasn't possible that I was experiencing ashtma, despite the poor results on the lung function tests, based on the fact that I did not respond to salbutamol (however it's spelled). Whatever. Saw a GP, and he diagnosed it no problem, gave me different asthma drugs, and started breathing again almost immediately. Gee, funny how different people react differently to different drugs.
It took me until this last year to find out what had really been going on with my wacko hormone levels my entire life since I was 12 and got my first period and started going through what I affectionately call hell, and now I've entered perimenopause, and the doctors won't believe me, no matter what. I'm too young, therefore it Simply! Isn't! Possible! Blood tests be damned!
*sigh*
I feel your anger. I really do.
OTOH, I'm glad you're finally diagnosed. I hope you experience much improvement in the quality of your life.
Posts: 4285 | Registered: Apr 2003
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EDG, From one train wreck to another . Please don't waste too much time in anger. It doesn't change anything and raises your cortisone levels.
Here is the ONLY good thing to come out of my personal catasrophic health issues: I study my Scriptures better.
Actually, you will find work arounds. You will come to a truce with it. Life will go on. It will just not be anything like you thought it would be. As long as your support system continues to function, you will get up and do what needs to be done.
But I understand the mourning, the frustration, the anger and the grief. I am with you.
Posts: 5469 | Registered: Jun 2002
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I have a friend whose wife has suffered for years w/o O2 and has had to be on oxygen for the past couple of years. They diagnose intersitial lung disease, then because she was getting so weak and because nebulizers etc... weren't working, they finally did a biopsy of her muscle tissue and she has been diagnosed w/ polymyositis. Interstitial lung disease is just one of the many symptoms of this devastating disease.
Ray, have heart, perhaps now that she is getting more O2, she'll be thinking more clearly and will let more of your stuff remain.
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and let you know that you aren't alone. But I am so glad that you will have improved health now.
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Whatever. Saw a GP, and he diagnosed it no problem, gave me different asthma drugs, and started breathing again almost immediately. Gee, funny how different people react differently to different drugs. ![[Kiss]](graemlins/kiss.gif)
. Please don't waste too much time in anger. It doesn't change anything and raises your cortisone levels.![[ROFL]](graemlins/rofl.gif)
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