New and struggling/scared

Hi,

I used to post under GERD a couple years ago but needing guidance with asthma. Sorry probably will be long. Diagnosed at age 24. Suffered severe attacks and hospitalization so for about 3 yrs. Doubled my weight on steroids. Lost most after 2 yrs. returned to being healthy. Minor asthma issues with pregnancy and illness and exercise after.

Good until last winter. Got a cold that turned into a hell 'ish cough for 3 months. After the first month I ended up in hospital bordering on respiratory failure. Every test imagine able done looking for a cause. Blood work, VQ scan, CT scans, chest X-rays, Broncoscopy, LFT's, etc.
O2 levels high 80's but then I could maintain it above 92% without oxygen. Pulmonologist wanted me back on puffers, not nebs, and off oxygen. I went home still struggling but better. Used O2 at home as needed. Took another month before I was ok. It was terrifying. A patch showed on my VQ scan but they said it was nothing. Both lungs were full of wheezes. No blood clots in lungs but did develop a superficial one in my leg while in hospital.

I returned to my active lifestyle hiking etc after. No colds or anything since until Jan 1. That night my chest started to really hurt. Woke Jan 2 really sick. Went to clinic and got antibiotics for upper respiratory infection. Jan 5th saw my GP who started 50mg Prednisone for 10 days. Cough is constant and severe. Lungs good though. Few wheezes only. It's all upper airway. Back to GP Jan 9th and he said my chest sounded better. Then breathing felt more difficult. Could get air in and out but didn't feel like I was using that air. Extremely tired and weak. Dizzy just moving. After 3 days of this went back to my GP. This was Jan 14. He called my Pulmonologist and explained everything and to see me. Sent me for chest X-ray and straight to Pulmonologist. I was hyperventilating which I knew. Didn't realize I couldn't breath b/c of this, not so much tight airways.

Pulmonologist wanted me to take Ativan and sleeping pills to slow me down. Said my asthma had spiralled me into hyperventilating but that I was in a viscous cycle now. If we didn't break it I'd end up in hospital. I was changing my brain chemistry. I react very strongly to meds so didn't take them. We tried the paper bag route. Needed my O2 down and CO2 up. He wanted blood gases but decided I was going into respiratory alkalosis regardless so no bloodwork. Paper bag worked amazing, to my surprise. 24 hrs to slow things and stabilize. 36 hrs to really not need them any more. I did take codeine cough syrup and finally 1/2 a sleeping pills on 2 nights. I was sleeping maybe an hour a night. He said the exhaustion was also taking me down. X-rays showing bronchial wall thickening. I'd had it show on an X-ray from Nov too which was just a routine follow up X-ray. Does this mean my lungs never calmed down since last winter? Is it permanent damage or can it be reversed?

I can blow 450 all along on my peak flow meter. My O2 has stayed high. Last year they learned I have above average lung volume as does my twin and brother. My mom died of copd. I never smoked but grew up in 2nd hand smoke. My mom survived 17 yrs on oxygen b/c she was such a fighter. They say I don't have copd. I've asked several times. Probably the worst diagnosis you could give me to be honest. I'm terrified. Yesterday I had a better day but was at a funeral. Too hot, too much old lady perfume and emotions. Now I'm set back last night and today. Think I've got inflammation in my tight upper chest b/c it hurts a lot today. Took Tylenol and Advil so I can breath and cough without so much pain.

I've recently had blood tests showing an auto immune disorder but no idea which one. They think I have a connective tissue disorder and I'm hypermobile. I'm recovering from 2 prolapse surgeries ( 10 months and 10 weeks post op now). I've previously had a nissen fundoplication surgery for severe GERD 2 yrs ago. Told silent reflux caused my asthma. Was suppose to have sinus surgery Jan 7th as I keep getting severe sinus infections. They're thinking post nasal drip triggering my lungs. Cancelled due to lungs.

I'm using our infrared sauna, laser therapy, making teas out of crushed ginger and rose hips, making tea with fennel seeds, using honey and cinnamon, taking turmeric capsules, adding garlic to foods, was steaming sinuses with eucalyptus. Using codeine cough syrup at bedtime. I'm on Symbicort 2 puffs twice a day but went up to 6 puffs daily when I got sick. Was using a ton of Ventolin and by nebs but now just 1-2 times a day. Using steroid nose spray.

Pulmonologist mentioned doing another ph study and endoscopy last Nov but we never decided to do it or not. Thinking I should now. I'm back on Tecta in case this is reflux adding to this. Thinking I need to push for determining if this is autoimmune causing this now. I have lots of symptoms of one. I'm really scared. I can't function. I'm very active and barely getting through a day with basic care right now. I'm fed up. I'm grouchy with my kids and husband. My prolapse surgery is failing due to food poisoning Dec 21 and now this coughing. I'm a mess. I'm just trying to be healthy and get back to my life.

. Oh yes, had allergy testing done last winter/spring too. Going to ask re allergy shots starting soon. I'm going to go wheat free as I show a bit of an allergy to wheat. I don't touch much to begin with. I'm lactose intolerant so minimal to no dairy already. MAST was mentioned as I react or show allergies to so many meds but also go anaphylactic to insect stings and some drugs yet testing shows I'm not even allergic to them. One blood test done for it but was done wrong and no follow up.

What do I do? I see my Pulmonologist tomorrow but said to cancel if my breathing was ok. I don't want to cancel and wait another month to see him. I want answers. I'm so scared this is going to be my life. I can't live like this. Thanks for bearing with me. Sorry such a long post.

Hi Wendy,

You and I sound similar, although you have been through so much more. I'm very sorry you are where you are with all you have been through. I'm going to try and sum up my story as briefly as I can.

I have had lifelong allergies/asthma from being born very premature. I finally was stabilized greatly in my 20's-30's. All of a sudden around 40 I had a major flare, that felt like severe asthma. I went to the ER after a few days of no relief from my nebulizer. They said it wasn't asthma since I was not wheezing. We then thought it was GERD, since I went off my PPI. I got better and PCP still had me go to pulmonologist and cardiologist, which were good. I didn't not completely feel the PPI's were working so after the battery of tests I had a toupet fundoplication in March 2016. I still had my same symptoms after surgery. Surgeon did another Bravo probe and EGD, said wrap was good and Bravo showed no acid. He thought I had a hyperactive esophagus. After several meds finally the Baclofen worked. I was on my typical Qvar and now Baclofen for 4 months without any issues.

After surgery did not help I also went to an allergist. Testings showed I was highly allergic to most outside stimuli. I started allergy shots in May 2016 but quit in September 2016 when I felt great on the Qvar and Baclofen. The allergist said we were "taking a shot in the dark" with this being allergy related anyways, since I did not have any of the typical allergy symptoms. Around the time I quit I had reached my maintenance, so now I'm not sure if this played a role in improvement.

about a month ago, I had another flare after skipping some of the Qvar because we were busy with family in town. It felt the same as it always has in these 2 years, hard to breathe and constant chest pressure/discomfort.

I now have been back to my PCP twice and she is perplexed. The weird thing with me is that my lungs always sound great, my PFT's are good, and I actually feel better laying down. I did fail the methocholine challenge, so they say my lungs are very reactive. I'm now going to go back to the pulmonologist, GI, and cardiologist.

With that said, for about a week now I've been back on my PPI and also PCP added Spiriva. Yesterday was the best yet and today so far I still good. So, I'm not sure if the PPI or Spiriva is helping, if this continues.

I feel for you and know how much these issues impact day to day living. If you would like to chat further please reply or I'm fine off post as well. A few things, read about Spiriva and talk with your pulmonologist if this haven't already been covered. I'm sure you have tried Singulair, correct? I tried this but had horrible sleeping and weird, vivid dreams that were defiantly related, so that did not stick but many swear by Singulair.

Best wishes and hope they get you back to feeling good!

Kristin