Tag Archive for asthma

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.

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.

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.

Trying to become more healthy

My allergies have been terrible, similar to everyone else around me, but thankfully my breathing hasn’t been extremely bad. I still have my ups and downs, but it’s not constant struggling to breathe like some summers have been. I saw my lung specialist in Pittsburgh last week and mentioned my periodic bouts with low blood-oxygen saturation so I get to do a cardiopulmonary test in November. That is basically riding a bike while they take blood from an artery (Arterial Blood Gas test or ABG) to see how much oxygen and carbon dioxide is in there. This is more accurate than a pulse oximeter which is placed on a finger. Sometimes ABGs make me a little anxious because the first 2 or 3 I had were a bit traumatic. Blood is generally taken from your wrist, and if you get an amateur phlebotomist doing it…your wrist is going to hurt like hell for a month or so. These days respiratory technicians do this type of procedure and tend to do an excellent job…I just always remember those first, bad experiences.

I’ve done a little research on the cardiopulmonary test, and have talked to a respiratory tech friend of mine about it. It’ll be good to have this done because if I have any problems during the test, they can pinpoint the reason whether it be heart, lungs, or I’m just out of shape. Back in 2011 and 2012 there were two times I was told I could be experiencing heart failure, pulmonary hypertension, or pulmonary arterial hypertension. It ended up being a combination of the right side of my heart enlarged a bit, poorly controlled obstructive sleep apnea, and poorly controlled asthma.

So with all this in mind, my short/long-term goal at the moment is to work on my general health.

  1. Sleep regularly – I’m notorious for staying awake for days at a time or sleeping for hours and hours. Usually this involves bad asthma flares and high doses of prednisone. Other times I happen to be awake and need to watch just one more episode of the current show I’ve been binging. I’d probably do a little better if I had a more regular sleep schedule and got up at a regular time in the morning, whether or not I feel ok.
  2. Drink less pop – Caffeine does wonders for me at times with the side effects of not breathing well and some of the medications I’m on. The problem is I don’t like coffee or tea, and pop/soda is full of sugar. Drinking water isn’t a problem for me, I just enjoy a Mt Dew or several when the mood strikes me. In the past few weeks I’ve been switching to diet Mt Dew and Dr Pepper or sticking to water. I don’t think I need to cut it out entirely, but I could do with more moderation in this area.
  3. Exercise more – There have been times in my life where I probably exercised a bit too much coupled with active, manual labor. Nowadays I have a desk job, and sometimes I work at home which means even less walking. I do enjoy riding a stationary bike which allows me to exercise inside, avoiding outdoor allergens. For now I’d like to get back to riding 5 times a week.
  4. Be mindful of what I’m eating – I’m not an advocate of “dieting.” My personal experience, and data from clinical research shows drastic dieting rarely results in long-term results. I need to be able to eat things I like while still making healthy choices. i got a free app on my phone called MyFitnessPal. I can scan bar codes or keyword search for food items, and the app tracks all the calories and nutritional information. You can track your weight, log workouts, set goals, and receive reminders. There are also periodic challenges if that helps motivate you. One feature I find particularly cool is data from Google Fit syncs with this app to add calories burned from exercise to the equation.

So with all of this, hopefully I’ll lose some of the weight I’ve put on in the past 3 years from prednisone, a hypothyroid, and sedentary life style. Anything I can do to improve my cardiovascular health is also a bonus for my breathing issues. After a couple weeks I’ve dropped a few pounds. If I can make this a habit and keep with it, I’m excited to see where I’ll be in six months.

May is Asthma Awareness Month

May is asthma awareness month. My sister likes to celebrate her birthday for an entire month, so I’ve been trying to share all month about asthma on facebook, twitter, and instagram.

My month has been ok. My little dude ended up in the ER with bronchiolitis again. As time goes on, his breathing resembles mine more and more. Fortunately it’s very episodic for him and only flares up every few months. A few duonebs, some pulmicort, and prednisone fixed him up. It’s interesting to watch him expend as much energy as possible all the time. Even when he’s having trouble breathing, he’ll move and move and move until he ends up lying on the floor.

Speaking of “lying on the floor,” I had a “moment” myself a few days ago. I wasn’t feeling too great and was lying down while the kids watched a movie. The little dude was pretty active, like a spider monkey, as usual. He was kind of climbing on me, and before I knew it, he was jumping on my chest. That triggered some major coughing and wheezing which ended in me crawling towards my medicine, getting too worn out, and lying on the floor for a long time. I was eventually able to get to my meds and noticed my oxygen was 85%. In the moment, these sorts of incidents don’t seem like a huge deal. Afterward, they do seem a bit more serious. I know I’d be exponentially more concerned if I witnessed this happening to someone else.

A couple nebs, magnesium, allergy meds, five hours on CPAP, and some more albuterol had me mostly ok in 24hrs. I should have used an epipen or gotten help. That’s easy to now, but in the moment all i can think about is, “I don’t want to go to the hospital.”

At the moment I’m outside of Pittsburgh and will be visiting my other lung doctor at UPMC tomorrow. It’ll be interesting to see where my PFTs are at and things have changed or stayed the same. A year ago I found out I have idiopathic restrictive lung disease on top of everything else. It’d be really cool if things were better.

Am I the only one that has to pack three times as much medical stuff than clothes on trips? I feel a bit ridiculous sometimes, but I assure you it’s all necessary.

Children and Chronic Illness

I am chronically ill, and I have two children. I don’t like admitting I can’t always take care of them, mostly because it is true. Fortunately they are very understanding and are kind of used to it. It can become really difficult when I’m solo parenting though.

Last week, my special lady friend was in L.A. for a work conference. Kid #1 goes to school during the day and Kid #2 is with a babysitter during the day, but I’m on duty for nights, mornings, and weekends. I was doing alright until the weekend.

I wasn’t feeling well before Liz left. She was worried things wouldn’t be ok. The kids weren’t adjusting well to mom being gone, but I was doing ok. The week progressed, and I became slightly more and more tired each day. I’m often able to rest and recharge on weekends, but not this time.

I did get a break for a couple hours Friday night and Saturday afternoon, but I was already feeling bad enough that it wasn’t enough for me to feel better. Sunday morning I got the kids some food, turned on the TV, and laid back down. They woke me up at 11, 12, 1, and 2. They were hungry, they were tired, and they needed some attention. I was able to get a family member to come get them around 6, but by then I was in pretty bad shape. It’s now three days later, and I’m just now doing some normal things like: not sleeping all day, eating, and talking to people.

I’m fortunate that my oldest can watch over the youngest and mostly keep him out of trouble. I’m grateful to have family around who can help out at times. We’re all glad to have Liz back, and hopefully I can hack it next time. The kids are also fine, I just wonder if they think all dads are like me.