Networking with other Canadian patients

[lesley-scheerle]

Hi Charlene: I was newly diagnosed with IPF in Oct. of 17. I’m from cottage country on lake Manitoba so I know all about cold weather. You mentioned the warmer temps. bothering you. I worry about the effect of Snow Mould in the spring. We usually have lots.

I got my diagnosis just a couple of days before we were due to leave Canada for out winter home in the U.S. My pulmonologist said he couldn’t start me on any meds if he couldn’t do blood tests. But away we went anyway. Now I’m wondering if it was the right thing to do. I’ve had one bout of ‘Bronchitis?’ so far this year and I feel that it’ s made things worse. I can hardly wait to get back home and have my next high resolution C.T. so I can see if there’s been much change in the last 6 months. It’s all so new to me and of course frightening. I’ve been scouring the internet for information and have found a lot. But it’s still a shock.

It’s one and a half hours from home to the city and I understand there will be lots of appointments etc. Do you know if there’s an IPF support group in Wpg?  Thanks for setting up this forum so we can all ask and hopefully answer lots of questions.      Lesley

 

[Charlene Marshall]

Hi Lesley,

Thank you so much for joining the PF forums and for contributing to this discussion topic. Welcome, although I wish it was a different reason we were being introduced.

Yes, being from Manitoba, I can imagine you are familiar with the impact of the cold on our lungs! I have visited Winnipeg before and I remember talking to someone I met there about your winters. They sound very similar to winters in Ontario, although colder by the sounds of it. With regards to the warmer temperatures bothering me, yes unfortunately this does happen. Mostly though spring temps seem to be okay, it is the high humidity and heat that seems to cause me trouble in the middle of the summer. I’m not familiar with snow mould, but I would definitely ask your Pulmonologist about this if you are concerned. Any type of mould, or even airborne allergens can cause trouble for someone with a lung disease, so probably important to chat with your Doctor about this. Have springtime allergies ever bothered you before (even though you didn’t know you had IPF)?

I can absolutely relate to the shock of being diagnosed, it is very frightening as you say and somedays I still can’t believe it. Do you have a good support system in place? Other than your bout of bronchitis, have you noticed a change in your ability to breathe or participate in activities? I hope your next HRCT scan doesn’t show too much progression, and that your Doctor offers you an anti-fibrotic medication (Esbriet or Ofev) to help manage your IPF. Have you done much reading on those two drugs? I have found connecting with patients directly about their experience has been more informative regarding the drugs than anything I’ve found online. If you think this would be helpful, please feel free to check out the forums on both Esbriet and Ofev.

I think there is a support group in Winnipeg actually, I believe I recall seeing that on the Canadians Living with PF Facebook page. If you do have Facebook, or someone you know does, the page I mentioned above is very helpful in connecting with other Canadians too. It is run by the Canadian Pulmonary Fibrosis Foundation (CPFF). Here is a link to the support groups, although I’m not sure which ones are still running: http://cpff.ca/community/support-meetings/

Goodluck and please connect anytime!
Charlene.

[lesley-scheerle]

Hi Charlene: You mentioned you were improperly diagnosed with Asthma when it was an allergy problem. I guess I was lucky in that with me it was just allergies. I think the fact that it would become a problem every spring is what pointed to allergies instead of asthma.

I’m happy to say that today seems much better than yesterday. As we all know, no two days are alike.

The wedge pillow I mentioned is shaped just like it says – a great big foam wedge. Higher at the top and gently sloped to the bottom. Amazon has lots of them. Just type in ‘wedge pillow’. Since I’d never tried one before, I chose the cheapy (Scottish, don’tcha know!). It is really better for me than two pillows that put my neck at an uncomfortable angle. I use the wedge with one pillow on top and am a side sleeper.  Hope this helps.  Lesley

 

[Charlene Marshall]

Hi Lesley,

Yes, you are correct: unfortunately my Doctors thought I developed asthma as a young adult (mid-20s) and treated me for it via a pretty rigid schedule of puffers, including ventolin and a few different steroid puffers. I took them faithfully, and in 2015 I started to know that what I had wasn’t asthma as it wasn’t really being relieved with puffers. I was really sad for the 9 months that no one would really listen to me about my lungs not feeling right, as it was chalked up so many times to “you work with kids so you’re frequently just sick”, or “you are too young for a lung disease”. Thankfully I am on a better path now and also work hard at being a better advocate for my own health!

I am so glad today is better for you, that is a great news. I completely agree, no two days are alike and I am glad today was improved and hope yesterday was just a bit of a fluke day. You mentioned you were doing a bone strengthening program, is this part of a pulmonary rehab program you are doing for your lungs? Or is it more of a recreationally enjoyed program?

That is a great idea about the wedge pillow. I am going to take a look! I will take anything that leaves me with a more restful and comfortable sleep at night. Thanks Lesley 🙂

I hope you’ve had a great day!
Charlene.

[Shaw Jennings]

Hi Charlene,

It’s been over a week since my last post.  I have now completed my first 9 days of Esbriet and I have had no side effects other than some very mild queezieness.  I have been eating a lot and gaining weight – got to learn to eat less, but still eat enough to buffer my meds.  I also saw my pulmonologist yesterday, did well on my 6 mwt with only a mild drop in my 02 levels and my blood gas was still at a normal level.  I guess am doing better than I feel, which is probably due more to very bad allergies than the disease.  Nonetheless, good news.

I have been considering a purchase of a spirometer I can use at home.  Can you or anyone recommend one?  The very affordable patientMpower bluethooth unit looks promising.

If you are going to buy a wedge pillow, I recommend you get one that is long as possible.  Otherwise, you will find yourself contantly slipping down if it is too steep – at least that was my experience.

Hope you are doing ok,

Shaw

 

 

 

 

 

 

[Charlene Marshall]

Hi Shaw,

I am so glad to hear from you – I’ve been thinking of you and wondering how you’ve been tolerating your Esbriet. I’m really glad to hear that you aren’t experiencing terrible side effects, and I hope the queasiness continues to be manageable for you! Does anything in particular help when that happens, maybe grabbing a small snack or something?

I struggled with the learning to eat less but still have enough to manage medication side effects as well, particularly when I started prednisone. This was hard because I felt hungry and I wanted to eat so that I didn’t feel nauseous from the medication. One thing I started to do, after talking to my nutritionist about this was buying protein shakes. I spent a bit more on this than I would have liked, but I focused on getting a good quality protein that wasn’t high in sugars (this is often a problem with protein shakes….) and high in protein amounts to keep me feeling full. I started to “snack” on these, usually with half a banana and a scoop of natural peanut butter and that seemed to help curb my hunger without extra calories or sugar. Maybe something to keep in mind, if you think this might help you?

I’m really glad to hear your visit to the pulmonologist went well though. It is frustrating when our “numbers” from various tests don’t seem to reflect how we feel though, isn’t it? Gil also mentioned he really struggles with allergies, are these seasonal / environmental triggers for you? One thing Gil shared in another post was actually about switching his shampoo/soap and laundry detergent and he said this helped a bit.

With regards to the spriometer, I’m not sure which one to suggest as mine came from my pulmonary rehabilitation specialist. It is an incentive spirometer to help exercise my lungs, the one with the little ball on the inside. Does anyone else have suggestions for a good spriometer for Shaw? If it would help, I am happy to send you a picture of the one I use and I usually do my exercises each night before bed and first thing in the morning (although the morning ones are starting to hurt…) and it seems to help.

Thanks for the advice on the wedge pillow, good idea! So you use one as well? I’m really glad that Lesley shared this with me.

I am doing well thanks, trying to prepare as much as I can ahead of my appointment on February 28th. I am hopeful it goes well, and I do have lots of questions so I am trying to compile them all. I also have had unusual lower back pain the last few days, like right in the middle of my lower spine which is weird. I’m hoping it is just unusual movement and that it goes away in a few days. Otherwise I am well thanks for asking!

Take care and write any time.
Cheers,
Charlene

[bev-mix]

Today I’m struggling with having a bad night. I generally sleep ok but yesterday evening started coughing (even though the most strenuous thing I did was get off my chair and walk to bathroom), my chest hurt from the coughing and found myself waking every 3 to 3 1/2 hours to take a T3 and Lorazepam. New thing for me. I am suspecting that eating meat is starting to be a lot of work for me. Seems to be such a silly thing and I feel odd about actually voicing it but eating and dense meat seems to do it. Poached chicken, fish, and beans seem to be ok. And so far ground meat ie tacos or meatloaf seems alright too. I guess I’ll be eating more good quality yogurt too.

[Charlene Marshall]

Hi Bev,

Thank you for joining the PF forums and for sharing your experience on this thread! Please don’t ever feel silly for sharing something, this disease manifests itself so differently in all of us and you might just find that someone else has the same experience with dense meats as you do. I wouldn’t be surprised, as this makes sense in my head 🙂

And, if it helps: just yesterday I was chewing (quietly of course) and trying to hold a conversation with a colleague, and I had to stop because I couldn’t do both at the same time. It felt embarrassing, but I just tried to make a joke out of it. Isn’t it interesting the finds we find difficult with this disease? May I ask how long ago you were diagnosed Bev?

I am also so sorry to hear about your sleepless night, this is such a frustrating experience of the disease. Sometimes it feels like a vicious circle: we want to sleep because we’re tired, but can’t due to constant coughing, and then the cycle of being tired is repeated all over again. Do you have trouble falling asleep, or would you say it is more staying asleep? Have you tried a humidifier in your room to reduce the dryness? What about essential oils that are calming and help with sleep? Raising your pillows a bit? Just all things that I’ve heard others talk about.

Hang in there, and I look forward to getting to know you more through the forums Bev.

Warmly,
Charlene

[holly-smith]

Hello,  I have IPF. I live in Ladysmith on beautiful Vancouver Island. I travel to Vancouver for medical care. I am getting-ready for a transplant. We have horses dogs and all the things that go with a country property. This is my first forum that I have ever participated in. Ch.eers Holly Smith

[Charlene Marshall]

Hi Holly,

Thanks so much for joining the PF forums and I am glad you made this post…. welcome! 🙂

I am not certain we have another patient from our beautiful Canadian west coast yet, so it is nice to hear from someone who is treated in Vancouver. I am flying to your beautiful province on Thursday and cannot wait to explore the west coast for a few days. On our agenda is: the Capilano suspension bridge, taking a gondola ride up to Whistler and between the twin peaks and visiting some of the southern gulf islands. Any other suggestions?

I also have IPF, and was diagnosed two years ago almost to the day. My biggest fear was that I’d miss out on opportunities to travel so I am very thankful to be able to fly to Vancouver and spend a few days there, with my portable oxygen concentrator (POC) in tow.

Will you receive your transplant in BC when you are eligible, or will you have to travel to Ontario to get it at Toronto General Hospital? I know they have the biggest organ transplant program in Canada, but unsure what BC offers.

Thanks again for writing, and I look forward to getting to know you a bit more through the forums.

Warm regards,
Charlene.

[david-collard]

• What’s your name?  = David Collard
• Where in Canada do you live? = Kemptville Ont,
• What treatment facility are you associated with?  = I am being treated by Dr. Krishna Sharma
• What kind of PF do you have, and how long have you had it? = I was diagnosed with IPF in March of 2013
• Share an interesting fact about yourself = after 5 years on Esbriet, I am now on Oxygen at the rate of 2.5 for period when I am active ( walking, talking, and moving around)  Found that the time on oxygen has increased either because I am doing more activity or it takes more oxygen to do more.
• Have questions and interest in how best to travel with Oxygen.  Does any one have liquid oxygen tanks that have a greater capacity over oxygen gas?
• looking for support groups in the Ottawa area – Does anyone know of a group?

[Charlene Marshall]

Hi David,

Welcome to the PF forums! I am so glad you’ve joined us, and hello from another fellow Canadian 🙂

Sorry for the delay in getting back to you, and formally welcoming you to this online community. I was off exploring the west coast of our beautiful country and in Vancouver most of last week. Have you ever been out there? It is so beautiful, and I now no longer question why people who visit BC often move there!

I am in Ontario as well, but a few hours from Kemptville, although I do know where it is!

Thank you for sharing a bit about your IPF story with us. If I may ask, how long were you living with IPF before you needed supplemental oxygen? I also use 02, though not all the time and usually vary between a rate of 2-5LPM during exertion, depending on what I am doing. Did you find Esbriet helped you? Are you still on it? Sorry for all the questions! I am on OFEV, and have never tried Esbriet.

I’ve never travelled (or tried) liquid oxygen myself, but there was a thread just recently started about it. You can read more here, and I know Jan loves her liquid O2. She may be able to answer your questions:  https://pulmonaryfibrosisnews.com/forums/forums/topic/ever-used-liquid-oxygen/

Also, it does look like there is a group in Ottawa according to the Canadian Pulmonary Fibrosis Foundation. Here is the information for you: http://cpff.ca/community/support-meetings/ 

More information can be found on their site about Peer Support as well.

Take care,
Charlene.

 

Have you ever used liquid oxygen?

[david-collard]

Thanks for your reply Charlene and your notes about supplimentary  Oxygen – here are the responses to your questions:

As to the beauty of the West Coast – I was born and raised in Vancouver, a graduate of UBC and two of my children are living in Victoria.  I was hoping to visit with them this summer, however now being on Oxygen, my travel days are numbered.  That is one reason that I was looking for ideas about liquid versus oxygen gas.  Even though I am only on 2.5 oxygen levels for when I am active, travel with oxygen tanks is very restrictive. Further I am not certain how I would manage on a 5 hour flight, and what I would do about Oxygen tanks when in Vancouver and Victoria.  Will be talking with my Oxygen supplier over the next few weeks.

Kemptville is just off the 416 on the way to the 401, about 40 minutes south of Ottawa.
I was diagnosed with IPF in March of 2013 and have been on Esbriet since about June of 2014.   It has definitely slowed down the IPF progression.  However, over the years, my activities and energies have slowed down.   I did continue to travel and be active for the first couple of years.  However, in 2016 after an exciting and exhausting cruise in the Baltic and visiting St Petersburg I ended up with a heart attack and required three Angiograms.   I put the blame on the lungs not being able to supply my heart with oxygen.  Or, maybe,  I was just pushing myself too much.    I  did recover from my heart attack and the Ottawa Heart Institute did a great job on my arteries..  However, my stamina continue to decline and after spending the winter in Florida to avoid the cold, my regular breathing test indicated that my oxygen level where dropping, and when I did a test to determine if I would qualify for supplimentary oxygen, my oxygen levels fell below the 75 range….  so the next day, I was delivered supplimentary oxygen.  I have a machine and two tanks which last about 2 hours and a 50 ft hose that lets me travel around most parts of the house.

As to your questions “Did you find Esbriet helped you? Are you still on it?”  – yes Esbriet has helped and I believe has slowed down the progression of the scarring.  I am on 9 caps per day.
Thanks again for the Oxygen thread and it was some help – what I need now is to determine if my supplier of gas oxygen can supply liquid oxygen and will it provide me with tanks that last longer.  Also where are not it is covered by OHIP.

David

[Charlene Marshall]

Hi David,

Thanks for your reply, and I hope this note finds you doing well!

As for travelling with supplemental oxygen, please let me know if I can be of assistance in sharing my experience with this. I have travelling both domestically and internationally while being on oxygen, and while it is more difficult than travelling without it, I certainly haven’t found it impossible. Do you have a portable oxygen concentrator? This made my travels much easier compared to tanks. All of this being said, it is of course important to speak with your doctor and oxygen provider to see if travelling is indeed a good idea for you.

Thanks for sharing your experience about the west coast! We visited UBC campus and it was beautiful, as is the whole province of BC I would imagine. I loved our visit to the islands, which included both Salt Spring Island and Victoria. A beautiful place to visit, so I do hope you get to go this summer and spend time with your children living there.

I am so sorry to hear of your heart attack, that must have been so scary for you. Did they ever indicate that it was due to increased work/pressure on your heart from declining lungs? This is one of my greatest fears about living with IPF. I am glad the heart institute in Ottawa was so helpful for you – I’ve heard great things about their cardiac program! I know you mentioned you are on supplemental oxygen when you’re active/ “up and about”, does this include moving around at home for you? Just curious, as I know exertion can mean different things for different people.

Goodluck with your travel inquiries, and please feel free to connect any time.
Warm regards,
Charlene.