Saturday, February 27, 2016

Of sinuses and asthma

Asthma is often associated with chronic sinusitis. WebMD says about half the people with asthma have sinus infections or chronic sinusitis. I am one of them. 

Elspeth does not have asthma but her sinuses are more of a problem than mine. Fortunately the big infection she had last week had improved significantly by Wednesday. Only one maxillary sinus was infected and hopefully the broad spectrum antibiotic she has been taking for a few days will soon fix that. So far, after 3 cultures, nothing has grown so no-one knows what is actually going on. However, the basic hypothesis is  that the cilia (tiny one-celled "hairs") on the surface of  this sinus have been damaged by previous infections. The damaged cilia  cannot move stuff (like viruses) out of the sinus as they should. Instead the viruses set up an environment where bacteria can grow. Then the bacteria spread to other sinus cavities. If the infection gets up above the frontal sinus it can actually be life-threatening. So she has to be super proactive about going to our sinus doc to get goop suctioned out when this first starts.  

Mike and I went with her to her appointment on Wednesday. I was also having a bit of sinus congestion - so - when the doc asked how I was - I told him. He squeezed me in, suctioned out the goop, and we took my sample to the lab. He and his fellow docs said they thought they saw fungus - which is surprising given all the fluconazole I am taking. I have an appointment with my asthma doc on Tuesday. The sinus guys will send him their results. I wonder what he will think. I am feeling pretty well but am coughing out a few mucous plugs (twirly phlegms) these days - so something is definitely not right. The lungs also have cilia... hmmm.

I probably should not have postponed my xolair injection until next week - but felt it was more important to to take Elspeth to her sinus appointment on Wednesday than for me to stay home for my shot.  If being a week late makes a difference, I guess we will know that the xolair is working. Breath on. 

Stopping now. Mike has brought me a nice cup of tea!

Friday, February 19, 2016

Family Sinuses

On Wednesday we met Elspeth and Brendan in Park Royal to go to see the sinus doc at St. Paul's. Poor Elspeth had suddenly developed problems with her sinuses the week before. This was only 3  weeks after being found to be 100% OK.  Her left maxillary (cheek) sinus had inflammation and pus, etc. - but a culture had not turned up anything. By this Wednesday the infection had spread to the other side and frontal (forehead) sinuses. More cultures were taken but as of today - Friday - nothing has turned up. They washed out her sinuses and put in medication. I have had my sinuses washed out and it's like having a fire hose put up your nose.

The doc doesn't want to give her a prescription until he has evidence about what is causing the problem. I looked up fungal sinus infections on the internet (to find out how to spell maxillary) and, of course, freaked out with what I found.  It is very worrying and she is now off work for a few weeks. I am letting out my worries by writing this.

I phone her a couple of times each day to try to cheer her up. Next week Mike and I are going to go over to the Sunshine Coast on Tuesday with our trailer and take her to her Wednesday appointment at St. Paul's and then home again. That is - as long as she doesn't have a emergency this weekend. She looks very drawn and is very tired but is willing to chat on the phone and seems clear-headed - so hopefully it not really bad.

Deciding to take her to her appointment next week threw off my Xolair schedule. The only option was to delay it by a week. Now that I am thinking of it I think I should email Dr. Doscheid to make sure this is OK - or to see if I can get an injection at St. Paul's on Wednesday when I'm there with Elspeth.. Surely they have a Xolair clinic there - though the scheduler who changed my appointment couldn't find it online.

The good news is that Brendan's sinus problem is clearly a broken nose which probably happened when he was a baby and it can be fixed with surgery - which he will likely have in the summer. The other bad news is that Elspeth probably won't be well enough to go to Montreal at Spring Break - so that plan may have to be cancelled. But mainly - I just hope she soon gets back to normal.

Monday, February 15, 2016

Nanaimo Better Breathers

Today I went to my first Nanaimo Better Breathers meeting. Mike had heard of them through a "what's happening in Nanaimo" website and we both went.

The Better Breathers hold meetings once a month at Beban Rec Centre. There were about 25 people there. Most seemed to be suffering from COPD - but the group is open to anyone with breathing issues. Some had portable oxygen, there was a bit of coughing (including me),  but most seemed pretty OK. Several people were new. The woman sitting next to me had just been diagnosed with COPD and given a puffer by her GP - but she had no idea what it all meant. A man we met said basically the same thing - he had just been diagnosed with COPD but didn't know what to do and was very averse to taking any medication.

The meeting started with a moment of silence for a member who had recently died. Then we did a seated exercise program from a DVD. It was amazingly effective.

The speaker was Heather from the People in Pain Network.  She was amazing. As a result of various spinal problems and surgery 26 years ago, she now has "persistent pain" from her waist down 24/7. She takes opiates to manage (but not eliminate) the pain. She had worked out her own plan for dealing with  pain and had started up a network of peer led pain groups across BC. There is a chapter in Nanaimo. By the end of her presentation, you could see that she was sweating from the effort. Her main point seemed to be that people in pain need to adjust their lives to deal with the reality of their pain - prioritize, take breaks, accept that there will have be bad days, give yourself comfort, involve your family, join a support group, and try to laugh a lot. At the next Nanaimo meeting they will be talking about the medical use of marijuana. This was serious stuff.

I'm very lucky. I don't have pain - just phlegm. However, her advice was good for anyone living with a chronic condition - you have to adapt. A sort of funny thing happened after the presentation. Bernie, the leader, demonstrated how to use a spacer and showed us a Symbicort turbohaler. One of the women in the group asked him whether you were allowed to take more than 2 puffs twice daily. There were a few comments and I put in my 2 bits about my 16 inhalations a day. They were amazed. After the meeting I got talking to a group about Symbicort and took the chance to do my asthma advocate thing - I encouraged them to self-advocate for the best care they could get. They left saying, "We'll fight!" Quite overwhelming actually.

Sunday, February 7, 2016

Sinus appointment

I went to my sinus appointment 2 weeks ago. It was actually a family affair. Mike drove me to the 10 am ferry to Horseshoe Bay and then on to St. Paul's - where our 16 year old grandson Brendan was waiting with Elspeth (his mom and our daughter) to have a CT scan for his sinuses. That all went smoothly and we went to the art gallery and then the Indigo Book Store to fill in the time before our appointments at the False Creek Clinic. Elspeth, Brendan and I were all booked for the same 4:30 appointment and I was a bit worried about finishing in time to catch the 7 pm ferry back to Nanaimo. On Mondays, the 7 o'clock is the last ferry to Departure Bay. The ferry to Gibdon's goes at 7:15 and 9:15.

We finally got in for our appointment around 5 pm. All three of us  - plus Mike - went into the tiny treatment room together. One of the doctor's fellows (a sinus specialist in training) was doing the initial checking. He was new and seemed pretty nice. I was first onto the hot seat. In went the camera scoping out my sinuses. I could see the cave-like structure on the monitor.  Lucky for me, my sinuses were 100% OK - the best he had seen all day. However, my ears were definitely effused - I could see the bulge on the screen.  The fellow thought I  needed tubes in my ears but I explained that I had had them before. They got clogged up and audiologist recommended against them. When the doctor came in, I explained about the candida and he said he would not treat candida if he found it. Everyone has it. He also told the fellow that I was getting it from my symbicort puffer. In the end, we settled on me getting a hearing test, keeping on with pulmicort, and coming back in 2 months. He would send a report to my asthma guy. All the poking around in my ears hurt - but not as much as the time he and another fellow decided to poke a little hole in my ear drums to help them drain.  Eek.

Then it was Elspeth's turn. Her sinuses were 100% too. After 9 years of sinus trouble and 3 surgeries she was OK.  She could cut back on her pulmicort and go back in 3 months.

Then it was Brendan's turn. His sinuses were not good. Much to everyone's amazement, the doctors said he had a broken nose plus bone blocking his sinuses. Unfortunately the CT scan had not made it to the clinic so that information was missing. Elspeth figured his broken nose must have been caused when he was preemie and had to be intubated. Poor Brendan, He's about 6 ft tall now and has a nice neat nose. Who knew?

After our 3 appointments, we all headed for home - in a hurry. Mike and I caught the ferry to Nanaimo with only minutes to spare. Elspeth and Brendan caught the ferry to Gibson's a few minutes later. Strangely, there was a medical emergency and then a police emergency on our ferry so we had to return to the dock - and Elspeth and Brendan's ferry left about an hour  before we finally did. A couple of days later Elspeth heard that the CT scan showed that Brendan has chronic sinusitis - probably caused by the blockage. We are all going back to the clinic on February 17 to find out what to do next for poor Brendan. 

I went to my own GP in Nanaimo to get a referral at his clinic for a hearing test. He thought it was pretty useless and so did I. We know I'm deaf and we know it's caused by dysfunctional eustachian tubes related to my asthma and sinus problems. I could get hearing aids but my deafness will also clear up when I get another dose of prednisone or defeat whatever is causing my other problems. I had the hearing test last week and hope it will add to the data. 

Today I'm a bit more deaf than before - but sometimes I can pop my ears. I'm a bit more phlegmy but I can still walk up hills at a fast pace and I have excellent peak flows. In other words, the drugs are working pretty well - but not perfectly. I will go to see my asthma specialist on March 1 to see what he thinks I should do next.