Archive for Asthma Boy

Now I’m on oxygen

me with my new nasal cannula

Things have been a bit up and down this year. I’ve had bronchitis three times, and a bad sinus infection. Of course they all make it harder to breathe. The shortness of breath has become a big issue with almost any amount of physical activity. This past week I’ve noticed my lips turning purple or blue with some regularity.

I’ve been complaining about shortness of breath and low blood-oxygen saturation for at least a year. I have felt like medical professionals haven’t been taking me seriously because my o2 sats tend to be ok while at rest. I did end up doing an exercise desaturation test back in November where I immediately dropped to 89% and stayed there for the remainder of the test. Just one percent lower, and they would have pulled out an oxygen tank.

That did prompt some more investigative work which later resulted in the discovery of diastolic heart failure and secondary pulmonary hypertension. It was assumed I would see great improvement after 4-6 months on bipap, to address the underlying severe obstructive sleep apnea, but that hasn’t been the case.

This past two weeks have been fairly bad as I am sick again. I saw my local lung doctor’s nurse practitioner who prescribed a round of doxycycline and a short prednisone burst. My other lung doctor pushed for breathing tests and a walking test, and luckily I was able to have those done the next day.

I’m not sure what the PFT results were, but they seemed pretty surprised when my oxygen levels dropped after walking down the back hallway for less than a minute. I eventually left the doctor’s office around 3pm and had an oxygen concentrator at my house by 5:30pm.

The supplemental oxygen has seemingly made a huge difference in the past 36 hours. I’m not constantly panting, I don’t feel absolutely horrible, my brain isn’t foggy, I can hold a conversation, my voice has more strength behind it, I sat outside for an hour, I’ve left the house twice on short errands, I’ve been able to do some things with my kids, etc.

I am very interested to see if they can discover the root cause for my oxygen troubles. Usually this would be associated with fibrosis or severe obstruction in the lungs. It could be heart related, and it wouldn’t surprise me if the pulmonary hypertension is involved. For now I am thankful to be breathing more easily, and am hoping to get a piece of my life back.

I have some hope

A lot has happened since I last wrote something. After many medical tests and 4 or 5 trips to the University of Pittsburgh Medical Center (UPMC), it has been determined:

  • I don’t need to drag an oxygen tank around even though my blood-oxygen saturation drops with physical activity. I’m right on the edge, but on the good side.
  • I’ve been suffering from a bit of pulmonary hypertension (PH).

After several discussions with my local pulmonologist and my UPMC pulmonologist, I was referred to a PH specialist with an appointment the following week. It’s  weird to think I have three lung doctors now in addition to the asthma/allergy doctor, two ENT doctors, and a primary care physician. Anyways, the PH doctor is great. She is very smart, appropriately aggressive, and a very good listener. For at least a couple years I’ve had different symptoms no one has seemed too concerned about until now. This doctor seemed to think they were significant. Blood work, another sleep study, right heart catheterization, and a stress test with nuclear imaging were ordered with a follow up in a couple months.

  • The stress test sucked. You know those funny Youtube videos where some unlucky soul is recorded falling off the back of a treadmill? Well that almost happened to me. They hooked me up with an EKG and pulse oximeter, then put me on a treadmill. Both the speed and incline were increased at regular intervals with blood pressure readings. What’s that? No one has ever taken your blood pressure while running from zombie’s in a forest? Well if you can imagine it, that is how it felt. At some point I was to tell them when I was about done, and then they start a 30 second timer. I couldn’t just stop, I had to finish out the 30 seconds. During that time I hit the “asthma wall” and almost fell off the back, but two doctors shoved me forward at the last second to avoid treadmill-road-rash.
  • The right heart catheterization (RHC) was the following day. I was a bit worried they would shave half my beard, but they were able to work around it. I’ve had more uncomfortable medical procedures, but the RHC wasn’t too bad. There is a 60-90 minute recovery time to make sure the puncture site on your neck doesn’t open up. I felt absolutely fine and didn’t quite understand why I couldn’t drive myself home until Liz picked me up and I passed out 30 min later. I later found out they give you a sedative to make sure you don’t move around too much afterward. This helps prevent your wound from opening.
  • I was glad to do another sleep test because I’d been feeling like the CPAP wasn’t doing its job even though the stats on my CPAP machine said otherwise. Turns out I was correct. Results showed I was waking up too often and my oxygen levels were dropping during sleep.

I had that follow up with my PH doctor last week and was surprised at what she had to say. She started me on Lasix (furosemide), also known as pee pills, after the first visit. They help to remove excess fluid in your body and I felt like they were doing some good. I was expecting to hear something like, “You’re fine, no PH, we don’t know what’s wrong with you, and stop taking the Lasix.” It turns out the RHC did come back normal, but my doctor was quick to point out I had been on Lasix for a week. I hadn’t told her, but I peed out 15lbs worth of water before the test. Her summation was my poorly controlled obstructive sleep apnea (OSA) was causing increased hypertension and diastolic heart failure. Those two things had caused me to develop pulmonary hypertension. This is why I have been constantly out of breath, exhausted, and low on oxygen.

So the plan from here is to continue the Lasix, and take care of the OSA in hopes that will take enough stress off my heart and let things calm down to “normal.” Unfortunately my insurance has been fighting the BiPAP order for a few weeks now which is quite frustrating. I just want to sleep and not feel like crap all the time. It is pretty cool to think they may have finally figured out what’s wrong with me though. Always be willing to ask questions of your doctors and do your own research if possible to help inform yourself.

If you feel like interacting with me or want to ask asthma, etc. questions, feel free to find me on Instagram – @asthmageek. In the past few months I’ve found new friends from the UK, Brazil, Canada, and all over the U.S. I’m always willing to chat as I seem to often be awake in the middle of the night.

I also need to give a big shoutout to BreathinStephen for hooking me up with Dr W at UPMC 3 or 4 years ago. I don’t know where I’d be without them.

Pulmonary Hypertention Part 2

After looking for pulmonary hypertention (PH) since 2010, the last echo showed a significant increase in pressure. My doctor didn’t specifically say I have PH, but he added it to my list of conditions. It also appeared on the list of “what ails me” when I was in the hospital. Since March or May the following symptoms have become more frequent:

  • Short of breath
  • Low oxygen saturation
  • Coughing
  • Headaches
  • Dizzy or lightheaded
  • Chest pressure
  • Chest pain
  • Wheezing
  • Heart racing or pounding
  • Exercise intolerance
  • Swelling in extremities / retaining water

This doesn’t feel like asthma. I talked to my doctor about it today and he suggested pulmonary rehabilitation. I think that’s a great idea, but am not confident it’ll fix everything. I have had a long string of exacerbations, infection, exacerbations, hospitalized, more infections, etc. So yes, I have had problem after problem this year. What’s been most concerning is how everything wears me out and leaves me panting. Yesterday I put my pulse oximeter on and went outside to get the mail. My oxygen saturation went from 95% to 89%. I repeated it today and went from 95% to 87%. We’re not talking about a hike or any sort of elevation here. I’m just walking at a normal pace to the end of my driveway and back.

The only thing that seems to really help is my CPAP. If I’m struggling to breathe and feeling a lot of chest pressure/pain, an hour or so on CPAP will give me some relief. The past seven days I’ve spent an average of 12hrs a day on CPAP. I don’t know what I’d do without that machine.

I talked to my doctor at UPMC and they want me to see someone at the Pulmonary Hypertension Center there. Unfortunately I probably can’t get it paired with my appointment next week, but I think it’s a good idea to see a specialist. I just need to be able to function without feeling like I’m gonna keel over. In the meantime I’ve been doing a lot of reading and making some new online friends.

Back in the Hospital

Well, it happened. After two years staying away, I ended up in the hospital for a tune-up. Four days and four nights kind of makes it sound like a vacation or resort reservation, but it wasn’t that fun. This time it was fairly simple, just good old asthma without other complications.

They did all kinds of blood tests to see if any clues came up as to the cause of my exacerbation. IgE levels were about 3x as high as usual so it was determined allergies were the culprit, of which I’ve been complaining for the past couple months. It was a lot of sitting around, neb treatments, IV steroids, and an occasional walk around the hospital floor. I was put into a double-occupancy room but spent almost the entire time by myself.

As usual, my first RT was Scott the sci-fi fan. For some reason every time I’m admitted he is on duty, remembers me, and we talk about the latest in science fiction shows and movies. I recognized a few other respiratory therapists, but none of the nurses. My local lung doctor came by every morning around 7:30 to check in with me and update notes. The hospitalist team quickly decided I had a “complicated and very advanced case of lung disease” and was going to let my lung doctor call the shots. I was glad because doctors unfamiliar with me tend to cut me loose early and I quickly relapse.

While there I got the usual questions and comments:

  • How many years did it take to grow your beard?
  • Are you always this chill?
  • Whoa, your water bottle is HUGE.
  • I LOVE your backpack!

I think my biggest fans were the nurse/tech pair who stuck me 9x before calling a phlebotomist in to draw blood. The phlebotomist walked in, drew the blood immediately, and then trash-talked the other nurses. It was pretty hilarious.

After a few days the hospitalist came by to update me and dispense some advice:

  • We have determined your severe asthma exacerbation was caused by your allergic asthma
  • Be sure to take your medicine when you go home
  • Maybe stay inside with the windows shut cause there are allergies outside

I could have stayed longer, but asked to go. The first day out is always tough, but I’m hoping to bounce back soon.

Prednisone Burst

My lung doc finally gave in and subscribed me some prednisone today. I’ve been feeling bad for about a week. The weather is changing, allergies are bad, one of my kids is kind of sick, and they’ve started harvesting corn. It could be just one, several, or all of those reasons why I’m having trouble breathing. Monday my blood-oxygen saturation kept dipping below 90%, and every day this week my PeakFlow numbers have been steadily dropping. While I really dislike systemic steroids and their side-effects, Liz reminded me it could be worse.

The last time I was admitted to the hospital I had been on 80mg of predisone daily. They gave me two, 120mg IV injections of solumedrol, and then admitted me into a room where they showed up every 6 hours for another 120mg of solumedrol. Some of the side-effects include:

  • It made me a little crazy
  • I became temporarily diabetic and required insulin
  • I retained water and gained weight
  • I developed cataracts
  • I lost muscle tone
  • I couldn’t sleep
  • My hands cramped up
  • My cognitive abilities were diminished
  • I got cranky and moody
  • My vision became blurry at times (probably due to the increased blood sugar levels)
  • My face became round and puffy
  • I lost my appetite

I had been on prednisone for most of the previous 2 years leading up to this hospitalization. When you’ve been on prednisone that long, you can’t just quit. You must be tapered off because your body is somewhat dependent on it. I’m not sure exactly when I developed hypothyroidism, but it was sometime after this long period of time on the medicine. If you want to see a long list of known effects, check them out here.

One of my lung doctors has told me multiple times the prednisone would kill me before the asthma if I couldn’t find a better way to treat my asthma. I’m happy to say this is only the second time in the past 6 months I’ve had to resort to this treatment. I’m hoping the short burst will get me back on my feet.

CPAP Mask Liners

There’s a new-ish product out there for us CPAP users to help masks seal against your face, and avoid those red marks and sores. I give you the mask liner:

remzzzsnasalcpapmaskliner

This past month I’ve been using RemZzzzs mask liners for my Comfort Gel Blue nasal cushion mask and love them. When I’m not feeling well, I’ll use my CPAP even when not sleeping just to get some breathing relief. As many of you know, the extra mask time can really irritate your face. Last summer I got some bad sores from using a mask too much and I’m not really sure what else I could have done about it. I regularly clean my cushions and mask, and was careful not to over-tighten the headgear. It’s the simple combination of time and pressure that can turn coal into diamonds. The mask liner will create a barrier between the cushion and your face, create a uniform surface to help create a seal, and soak up moisture or natural oils from your skin.

I’ve tried to do this on my own in the past. Liz gave me the idea to fold up a piece of toilet paper. It kind of works, but isn’t shaped correctly and I could only do this across the bridge of my nose. The mask liners are made to perfectly fit your mask.

I purchased a box of 30 mask liners on Amazon for about $25. These aren’t the cheapest of things, but if used only when needed, I’m sure you could make them last. I talked to my cpap supply company, National Sleep Therapy, a few days ago and they can sell me mask liners but insurance will not cover them at this time. If you’re not sure about spending the money, the RemZzzs website does have a link for a free trial.

One other trick I’ve done is to have two different masks. Along with the Comfort Gel Blue nasal cushion, I also have a Nuance Pro nasal pillow. I’ll either switch up the masks every other night, or just wear the one that feels best. If my sinuses are clogged up at all, the Nuance is going to be the toughest to handle. Then when I re-order supplies every 90 days, I alternate between the cushions and the pillows so I always have some for each mask type.

I have a full beard and was warned from the start I’ll have trouble finding masks with a good fit. I bet I could wear a full-face mask with a liner.

It’s been feeling a lot like August

August is always my worst month of the year. It’s hot and humid, ragweed flourishes, and I tend to get sick. This summer has been the usual with plenty of missed days, CPAP time, and breathing treatments.

My daughter picked up a cold the first or second day back at school and shared it with the family. It’s been awful. I just finished a z-pack and some prednisone, but still aren’t feeling great so my doc had me do bloodwork and chest x-rays to see what’s going on. In the past, I’ve just gotten stronger and stronger anitbiotics until the sickness goes away or I’ve ended up admitted. I appreciate the attempts to make sure it’s a bacterial infection before the unnecessary use of more medicine.

In a couple days I’ll go in for my echo. One of my lung docs wants me to be re-evaluated for pulmonary hypertension. My right ventricle was enlarged on my first echo back in 2010. I’ve had two since then showing things to be normal, which has been attributed to my strict adherence to CPAP therapy. Lately I’m always short of breath, my chest hurts, my blood pressure is often higher than normal, and there are a few other signs that need to be ruled out. I’d really love them to find something, anything. For years it has always felt like there’s something not yet diagnosed. If they found something, I could at least be treated for it and maybe not feel like crap all the time. I’d love to do normal things again.

SOB

The first time I saw “SOB” written on some paperwork I was a little offended and slightly confused until I learned it was the abbreviation for short of breath. Right now, that seems to be all I am. I’m constantly huffing and puffing while trying to do really basic stuff. I haven’t been getting much work done. Last Saturday I felt sort of ok so I did some cleaning and picking up, but then spent all of Sunday in bed and this week I feel constantly tired and exhausted.

I’ve been talking to both of my lung doctors and I now have an upcoming echocardiogram scheduled. I think this will be the 4th one I’ve had. The first one was about six years ago and showed my right ventricle was enlarged. I started using a CPAP after that which has helped the right side of my heart to shrink back to normal, but every couple years the symptoms come back. This time seems worse than the others for me. A few weeks ago I went in for my PFTs and the numbers were actually 5% better than six months ago. It seems odd to have so much trouble breathing when my lung function hasn’t gotten worse. I’m hoping to find out something sooner than later because this is really cramping my lifestyle. Just going to a store and walking around is enough to tire me out and require me to lie down for a rest.

Weird allergic reaction

I’ve heard people overly complain about a sunburn itching before and thought they were being ridiculous. It’s just a sunburn, how bad could it be?

I got my Xolair injections this week as usual. I’ve never had a reaction before and when my arms started itching, I assumed that light sunburn from the weekend must be peeling.

  • Thirty minutes later Solarcaine seemed to make it worse.
  • Thirty minutes later two Benadryl and ice packs weren’t working
  • An hour later thirty minutes in a cold shower did little to make it better

I called my doctor’s office and spoke to the respiratory therapist who had administered the shots. She thought my symptoms sounded odd and asked for a call back number so she could track down my doctor. By this time the itching had spread from the sunburn area to my entire back, arms, chest, hands, and legs. It felt like I was being bit all over by an army of ants. I say this having been swarmed by an angry ant hill as a kid once. I couldn’t sit still. My arms were shaking. My doctor said he was fairly certain this was not from Xolair and to try some antihistamines.

I take Allegra every day, and had taken two Benadryl 3 hours or so earlier, so I took two more. This took the edge off the itching. I could finally sit still and not twitch. I had never experienced something like this before so I googled insane sunburn itch and discovered other people describing similar situations. The best remedy seemed to be strong ant-histamines. A couple hours later I decided to take two more Benadryl and put my CPAP on so I wouldn’t quite breathing after passing out.

Six freaking Benadryl. I’m pretty sure you’re not supposed to take that much, but that’s what it took to finally make my body stop itching. I passed out for 14 hours or so, my AHI was 6x higher than normal, and I was groggy all the next day, but it seemed to do the trick.

I’ve decided to stop judging people for complaining about itchy sunburn.

Pulmonary Hypertension

I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:

  • Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
  • GERD (from the hiatal hernia)
  • Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
  • Vocal Chord Dysfunction
  • Left Hemidiaphragm that doesn’t move
  • Anxiety because not being able to breathe well for 25 years makes you anxious

Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.

While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.

I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:

  • a fungal mass in my lungs
  • chronic bronchitis
  • COPD
  • right-heart failure

…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.

Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.

So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.