Tag: pulmonary fibrosis

The Facebook Group

Grace by any other name1 Comment

It’s one thing being sick. My people and I have lived my terrifying lung infections before and heard the weird sounds. But we didn’t know that each sickness was making my long term prognosis worse. We didn’t even know I had any kind of prognosis. But truth is, people with interstitial lung disease with fibrosis live on average 3-5 years. Some live 6 months. So here I am, diagnosed, and suddenly, my clock is ticking. And I tried my best not to get sick.

When I saw the GP, he gave me Duplin breathing meds for my nebuliser. It’s meant to open up my airways so I can breathe better. He said, “and you can keep the ones you don’t use for winter.” I thought to myself, “You obviously have no idea how sick I am. I will finish these ten! Especially given I’m meant to nebulise three times a days! I really feel terrible! This is just the beginning and I came ‘early’ before the worst of the symptoms, only because my rheumatologist said I should. This is getting worse.”

I only have two left. But my chest is still wheezing badly and I’m still not sleeping thanks to bad coughing. So much for him telling me the meds would “stop your cough.” For AS, we have to lie down as flat as possible, not even using a pillow. (To stop the higher risk of us fusing in a bent position.) But I can’t breathe. It’s worse flat, so I wake up gasping and add a very thick pillow. But then that puts weight on my painful bones and I just can’t get comfortable. I’m in a nightmare! I’m so so tired. And scared. When will my lungs heal? What damage is being inflicted? When will the now very settled sinusitis heal? I’m going natural treatments for it on top of the antibiotics for my nose the pulmonologist gave me last year. Sinusitis is bad.

And being off ASAP treatment is BAD!

And the groups, the lung disease groups don’t help at all. I am scared to go in. Someone dies all the time. They’ll be perfectly healthy, get bronchitis (like me), go off treatment because the course is finished (I still have some prednisone and antibiotics), then get pneumonia because the actual bronchitis isn’t gone. and go into hospital and die. It happened last week. Or they get bronchitis and die. Or they get a lung infection and die within six months of initial diagnosis after hoping they’d live with the disease!

The group is proving my research correct. I wanted to plan my last days. I wanted to die in hospice, not at at home, and not in a hospital. Hospital brings no rest, no peace at all! And hospice would be able to manage my bone pain better. But the research journal I saw said that most of us don’t die from the disease progression, but mostly from an infection that suddenly comes up. And when treating it- where do you go? Hospital. It’s not like people don’t recover from infections so you don’t know in advance that THIS is the killer infection and decide to stay home. Plus..it’s painful. The chest is sore, you’re tired, you want help with your breathing. So though most want to die at home, they go in, and die in hospital.

The number of daughters, uncles and sisters and spouses that have come in to announce a loved one’s unexpected death is shocking.

Also, unlike many, I can’t have a lung transplant. So many members have HOPE. But I don’t. Thanks to AS restricting my rib movements, I’d not be a candidate for lung transplant. They transplant into healthy people.

Do you know how horrible that is? Being part of a group you’re not really part of? They have a positive (Well, the long term treatment etc is AWFUL. But I would do anything to be with my children longer) to look forward to. I don’t. Though once in a while, someone does state that the risks are just so high that they have chosen to die rather than try go through transplant. But it’s not the same. The choice has been taken from me.

I hope one day I find a group specifically for those of us who can’t have a transplant. But still, I won’t go in often. We keep dying.

Dead Serious

Grace by any other name1 Comment

I really really want to beg everyone who works with people as clients or patients to be very thoughtful. If you’re sick with something infectious, don’t go spreading it. Take sick leave or if you can’t, wear a mask and tell the person you’re working with or will be working on, that you’re not well so they can decide for themselves if they want to risk getting sick.

What this sweet lady told her relative is what I mailed to my son’s physiotherapist yesterday. We went on Friday, and during the session? I noticed that she was coughing and sniffing quite a bit. I even asked if she had allergies or sinus issues. It didn’t even occur to me that someone would work with clients while sick. She said no, she’s “at the tail end of a cold.” Ie. She was sick.

Instead of running out of there -don’t know how long we’d already spent in her when I asked- I thought to myself, “Oh well, that’s good that she isn’t feel too sick.”

I’m also dense. It’s not only her fault.

I should have run. But we finished the session.

And I brought her ‘cold’ to two daughters who got sick on Monday. and took it into my body. The children are not too bad but I’ve got a hectically sore throat and it keeps closing up. Like..sticking together so I can’t breathe at night. It was a bad night. And my nose is super runny and blocked. A cough has begun today. The very thing my pulmonologist warned against. An upper respiratory tract infection is a matter of life and death for someone in my situation. To treat people knowing you have one. And even if it doesn’t lead to death, it weakens the lungs further. I even told her during the appointment that I have interstitial lung disease with fibrosis when she asked about my restrictions. I’m frustrated. It’s such a stupid way to get sick. Getting it from someone who KNOWS they are sick but instead of giving patients the option to postpone, risks their patients’ health so they can make more money.

My people know how I’ve always complained and hated that- like the lady above- when I get sick, I get sicker than others. It’s scary, listening, knowing the next video after the one I posted. And it’s eerie, knowing she too felt that her calling was to be a help to others. Thats me. I feel I’m here to help others, to bear their burdens.

I had been feeling thankful. I survived Covid. I survived other infections which were so bad I was given inhalers and had chest X-rays for. But my lungs are worse today than last year and than previous years. It will be even harder to survive them and I plan on doing so. I ordered N95 masks to wear in winter in the store and church- if I go. And a pulse oximeter so I can check my blood oxygen at various times (You usually tend to need extra oxygen first at night and when walking/ busy. I do struggle at night but I want solid numbers before I go back to the pulmonologist. It’s not a big struggle.) Have sanitizer in the car. But I didn’t know the first source of infection would be the physiotherapist. I didn’t think to at least wear the disposable masks I wear to see my pulmonologist who also wears a mask.

And so, I ask you to please be more mindful of how your actions will impact others who are vulnerable. Nobody deserves to catch a cold or flu anyway. But for some, every single infection can cause death.

Just like what happened Billie ‘BJ’ Thomas, the lady above, who did HER best to stay safe, thought she was doing well with her lung disease, but was killed by Covid 19- as announced by her sister in the last video posted on her channel.

Your thoughtfulness can preserve a life. Think of it that way and do the right thing. All I needed was the option to attend when she’d fully recovered…That’s all.

Thank you for reading

That’s Perfect

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My nine year old, Ammy, saw me last week taking my injection out the fridge. She even expressed surprise that I was doing it myself. All along, she thought I was going to a doctor to inject me.

I hadn’t even meant for it to be a big production. But I’d had an appointment earlier on so didn’t take it out to warm it up at my usual time. Yes, my older children see it in the fridge when they take stuff out, but it’s not in their faces. (I hope.) I doubt they look inside and think, “ Oh yes, Mom has an incurable disabling disease, this should hopefully slow it down.”

So I was startled and amused when yesterday, Ammy asked, “Mom, is your ankysauraus spondylitis gone now?” I giggled inside at the name, and told her seriously, “No…I will always have it. Why do you ask?” (How could she forget that I’m treating it weekly? Did she think last week’s injection was the last treatment?)

She replied with, “You don’t act sick. You act normal. So I thought maybe it’s gone now.”

The sweetest words this mom could ever hear! There are so many things AS stops me from doing. So many minutes I cannot stand or sit with my children. But they don’t see that! She just sees a mom who is teaching, doing chores, hanging laundry, taking laundry out (I don’t take a huge basketful in one go. So I make multiple trips.) She doesn’t see the CAN’Ts. She sees a normal mom. Sometimes these invisible diseases are better. I don’t want her worrying. When the pain hits too hard, I give them something to do and I go lie down. I try not to burden them with knowledge that will worry.

And that is why I haven’t told any of the children the latest lung diagnosis. Interstitial lung disease isn’t good. To have fibrosis too is worse. The lungs are scarred and struggling. And the only way is down. I haven’t told them a thing.

I know of some angels who put university on the back burner when they hear their parents was not great. Truth is, an infection can kill me before I even get too bad. But I could also live 10 years on a slow decline. So why worry them? Why clip their wings if they want to fly far? (My daughter wants to go work overseas after she’s done her nursing degree.)

And so, I rejoice that to my angel who is a worrier by nature, I act normal. I pray I don’t need oxygen for many years to come. Then I will look normal. Invisible is a blessing when you don’t want to cause little ones to worry and fear.

And a smile, daily smiles, go a long way in reassuring little ones that life is normal.😊

She is Right-ILD, Fibrosis Awareness

Grace by any other name1 Comment

My dear friend asked me if it’s right for doctors to not be forthright with patients. To not tell it exactly like it is. I said no, it’s definitely not right, she is correct there. (I’d told her about an AS patient who suffered terribly after they had to basically undo her bent over spine and insert rods and pins to make it straight so no longer wanted to fix her permanently bent neck. The doctor even phoned to ask when she would have the surgery. She said no.

I don’t think the patient knows what I know. The cases of people who died because their bent necks crushed their tracheas and they were not able to breathe. I saw it in a dedication post by a daughter whose dad died like that. I suspect her doctor wants to save her from that possibility. But hasn’t told her so. Hasn’t told her what can happen as the AS progresses.)

After my lung functions tests, which hurt and led to much more discomfort than I’d ever felt after some of them, the doctor wasn’t happy with the fact that the lung diffusion test also had a bad result. (We have long known my lung capacity is low.) He asked about my iron, suggested that I have a full blood count done so he could check my iron and I told him I’d had a blood test two weeks before, requested by my rheumatologist.

He then phoned his receptionist and asked her to phone the pathologists and get my results as he needed to know my iron levels.

HE DIDN’T TELL ME WHY HE WANTED MY IRON LEVELS EXCEPT TO SAY THAT IF MY IRON IS LOW, IT WILL EXPLAIN MY POOR RESULT.

We waited. And waited. I didn’t even realise how significant it was that we didn’t just continue with the rest of the appointment, end it so I could leave and he just look at my results whenever they came through. I also didn’t get the significance when he said (after the results came in and he saw the official copy) a baseline CT scan would be good, just so later when damage is visible, we can track it…After a good 10 minutes of us just sitting there, waiting for LathCare to respond to the request, I got tired of awkwardly reading a book in front of him, and decided to go onto my PathCare app and show him from there. He saw that my iron was definitely not a reason. But didn’t say what exactly it was not a reason of. Didn’t say what lung diffusion is about.

So I assumed it meant that air was not going everywhere it should be going when I’m breathing in.

But that’s only a very high level understanding.

It means that oxygen is not passing properly from my lungs into my BLOOD. This is now not only about my lungs themselves, but about my whole body. Blood is life. If my blood doesn’t have oxygen properly, we have fatigue, weariness etc. And of course, it’s not good. Our bodies need oxygen.

Before the scan results came through, I’d been hoping that perhaps I had just been having a bad day that particular day when I went to do my lung function tests. After all, I’d done them twice before and I’d never had the pain and discomfort AFTER them that I had this time. Maybe something had been off that day.

But the scarring and bands (I read my CT scan report after the pulmonologist update me and told me to go in if I feel my lungs are deteriorating, instead of waiting for our next formal review and scan.) in my lungs put paid to that. There’s a physical reason why this test was so horrible this time. Why my lungs felt like they were struggling.

They are.

And so, it’s sad that I had to find out what the lung diffusion test is about via online websites on pulmonary fibrosis. I wish he had just been open. Yes, he did say we will intervene when you can’t sing and can’t walk and talk, but he didn’t tell me that intervention eventually stops working and you die. He didn’t tell me that yes, some do live long, but the average life expectancy after diagnosis is 3-5 years.

Knowing my days are shorter than hoped would help me take each one that passes without a crisis and make it even more special to me. I’ve been very grateful that despite having AS, I can still move my neck and twist my back. Things I’d have never been thankful for. If he’d made the reality more clear, I’d have been grateful even more that “today, my lung function hasn’t become so bad that I have had to ask to see the doctor.”

And besides the Enbrel suppressing my immunity, I’d make sure even more that I don’t get sick. Last year when I had a chest infection, my husband spent a night awake, very sure I was dying because I kept breathing like I was taking my last inhale. It was ‘rattly’ and the breaths were very far apart. Now we know it’s a possibility. An infection killed quite a few of the members of the fibrosis group I was in who weren’t yet inactive and on their death beds. They thought they still had time. Each time I’ve told my friends I felt like I was dying, it was more real than I thought. So grateful for LIFE.

But

Life is full of surprises. Lots of hardship. The first rheumatologist I saw thought the never ending AS pain and constant fatigue plus the children’s extreme needs were “too much, it’s not fair.” He asked, “Why is God allowing this?”

I don’t know why. But I do know that friends who care about every aspect, offering moral support, not unsolicited advice😉, make it easier to bear.

Bearing each others’ burdens. A theme of mine lately.

And I hope I never become so self focused that I stop caring about my friends’ hardships because I seemingly think mine are more important. I hope my people never stop telling me that I’m caring and kind for remembering them. There’s room in my brain for the problems of everyone who has made room in their minds for mine!❤️

I don’t want to become the person who out of the blue writes, “Hey A, how are you? I just wanted to check on you and hear how you are these days. My lungs are terrible, I can’t sleep at all and would you believe, my loc broke and it’s the third one this year to break off at the bottom and I’m in so much pain! The Enbrel is giving me horrible side effects and life really sucks. I have nobody to listen to my complaints so under the pretense of wanting to know how you are, I’ll really update you about how important I think my problems are so that you think this message was about checking on you when really, I won’t recall how you respond, i won’t internalize your response at all because I just wanted to get off my chest how miserable I think my life is so you pity me.”

Shoot me if I become that person.

When I want to check on someone, may I mean it. May I just write and ask. And wait for a response. Even when I’m using oxygen – in 100 years’ time!

Common Signs of Interstitial Lung Disease, Fibrosis That I Had

– chest infections that become very bad. One doctor even said I’d been so worried about the children’s sickness that I put myself last, endangering my life. She reminded me that a dead mom can’t nurse the children

– crackling when your doctor listens to your lungs via stethoscope

– doctor not hearing sounds of air in parts of your lungs

– being given asthma pumps but them not helping

– dry cough

– discomfort in lungs when lying flat. Less ability to breathe

– breathlessness

– wheezing

– tiredness. This one I have only thought was caused by AS fatigue / exhaustion

– chest x rays that are clear yet doctors think you have a problem with your lungs

If you have these and others that you can freely google, please rather see a pulmonologist instead of your beloved GP. My GP kept prescribing antibiotics even though chest X rays showed no sign of infection. She never suggested a specialist. I just figured that if antibiotics hadn’t ’put any air’ in the bottom of my lungs where she couldn’t hear any, a second round wouldn’t either. I needed someone with more expertise.