secondary symptoms related to IPF

[Charlene Marshall]

Hi Julie,

Thanks so much for getting in touch with us and sharing a bit of your experience. So sorry to hear of your Dad’s IPF diagnosis, especially his rapid decline. That must be really scary for all of you, you’re in my thoughts and prayers!

Given his low FVC and oxygen saturation’s, he is on supplemental oxygen right? If he still gets really cold and out of breath, his oxygen requirements might have changed and he may need a higher amount. Do you have any upcoming appointments with his doctor who can assess this and adjust the 02 requirements for him, if needed? Oh so sorry, I read parts of a response and reply then read more so I see he had a doctors appointment recently. How did that go for him?

With regards to the uncontrollable shivering and being cold, unfortunately I think this is a symptom of IPF due to the chronic under-oxygenation. I am always cold, especially in my extremities and really struggle to get warm. Although it is physically exhausting, I find a warm bath usually helps with warming up the bathroom in advance of getting out of the bath to prevent catching a chill. Not sure if this might be possible for him?

 

I’m curious to hear how his appointment with the doctor went Julie, do you mind giving me an update? Thinking about you all.

Warmly,
Charlene.

[Janet]

I have had a few attacks of severe chills, shaking like crazy and SOB. Today it was after respiratory therapy exercise.During RT all O2 was all in 90s. In the car going home.had on a down jacket but hands, legs, arms and shoulders all shaking. O2 down to 85, and it took me a half hour on heating pad before I could type this. Sorry (but valiated) to hear others experience this.

[Julie Cuthbert]

Hi Charlene,

Thanks for your reply. He was only diagnosed with IPF 4 weeks ago and he was waiting for some results back/ plan of action from the pulmonologist on the 17th dec. So he wasn’t on any oxygen but we all thought he probably would have to start the oxygen after his results came back. However he went to the doctor on Monday and they rushed him straight to hospital as his oxygen saturation was dangerously low. So he’s in hospital now on oxygen and feeling so much better with it ( but he’s finding getting out of bed to go to the toilet a struggle) I don’t live in the same country as my family so I’ve just been talking to my dad over the phone but I can hear it in his voice that it’s an effort to talk on the phone sometimes as he’s coughing and trying to get his breath back.

He’s just gone down hill so fast in these last 4  weeks. We’d never even heard of IPF 4 weeks ago – I’m devastated as I’m so far away from him. I’m flying over next weekend so see him. However throughout all of this he seems very accepting and positive.

Throughout all this I’m trying to be positive on the phone with him fighting back the tears, when really my heart is breaking.

From all the research I’ve been doing these last 4 weeks I’ve got it into my head that he might approaching the final stage. The doctors did say yesterday that there’s nothing they can do to slow the progression. We should know more today from the pulmonologist.

Julie

[Charlene Marshall]

Hi Julie,

I am so sorry to hear this, IPF is such a cruel disease and absolutely shakes families to their core which it sounds like it has done to you. What were his first symptoms indicative of a lung disease? I’m surprised he had to wait until Dec 17th to see the specialist, and even more saddened to hear that the doctor rushed him to hospital with low saturations. He must have felt terrible! Glad the oxygen is helping a little bit and whoever is his care provider with him really should advocate for home 02 for him. I suspect he will get it now when he is discharged, which will help with his stamina and breathlessness a little bit. It’ll also help his other organs, specifically his heart, not work so hard. This was important for why I was put on home supplemental oxygen at first…

I’m really glad to hear of his attitude towards it all, that will go along way but I know it is way easier said than done. I’m also really happy to hear you’re flying over to see him, that will mean a lot to both of you I am sure. Do you have support to help you cope with his diagnosis? It is so hard for us as patients, but I would argue it is equally as difficult or even more so for our caregivers as I couldn’t imagine watching a loved one go through this and not being able to do much about it. This is a great platform to connect with other patients and caregivers who truly “get it”, which tends to help I find. I’m glad you’re here!

Keep me posted on the update from the pulmonologist if you can.. holding you close in my thoughts and prayers!

Charlene.

[Rene Hakkenberg]

Hi Charlene,

We have been in touch before. I am an IPF patient, diagnosed in 2017 but later traced back to 2014. On 200 mg Ofev.

My question is about you as I am very curious. You do such a wonderful job supporting all of us, so positive, understanding and knowledgeable. I would love to hear more about you, your case, when were you diagnosed, medicine taken, O2 taken, stage, etc. I understand you are from Canada (I went to McGill for 8 years but live in Bonaire, Dutch Caribbean and being the only person on the island with IPF) and is this a voluntary effort or work via some PF foundation?

 

Sorry about my curiosity but I would think that more IPF patients may wonder about the same questions…

Thank you for all you do for us! You give us so much support.

Rene

[Charlene Marshall]

Hi Rene,

Yes I remember that we’ve chatted before, and a bit about your story. Thanks for re-connecting, it is nice to hear from you again! How are things going for you? Are you still tolerating the Ofev well? Usually people are on the 150 or 100mg dose, so its nice to hear someone tolerating a higher dose. Do you find or feel like its working for you? Sorry for all my questions! 🙂

Sure, I’d be happy to share a bit about me and my experience with IPF with the forum. Sometimes I forget to do that, or it slips my mind so I am glad you asked. I was always healthy and active as a child and young adult, never having had any lung problems, nor did anyone in my family. I was overseas in early 2015 and fell ill upon my return home. Suspecting it was just a cold due to travelling, I got antibiotics and didn’t think anything of it. Over the next 9 months I was treated for my shortness of breath, chronic cough, fatigue and tight chest with many different medications: antibiotics, puffers, steroids, etc. All of them seemed to work very short-term but the side effects always returned, so maybe they were just psychological for me to feel better, not sure. Then I went overseas again at the end of 2015 and was going a physical activity that shouldn’t have made me feel breathless but it did and I knew something was wrong. I flew home, was seen in the urgent care clinic and they discovered my 02 sats were in the 80s. I was shipped to the ER right then, and underwent a number of different tests right then over a two week window. It took them 4 more months to officially diagnose me with IPF though, in April 2016. It was a bit of a crazy ride having gone from being completely healthy to now having a fatal lung disease for no apparent reason…. was tough to adjust to my diagnosis! Now however, I’ve really met the most wonderful people through the PF community, and although I wish I didn’t have this disease, I am thankful for the opportunities it has brought me.

Managing this forum is just one of those wonderful opportunities! It is a paid opportunity actually through BioNews services, and with work now becoming nearly impossible, I am so thankful for this additional income and its doing something I enjoy (helping people). This is why your comments and kind words mean so much to me, thank you again for connecting with me and asking these questions 🙂

Oh nice re: McGill, it is a beautiful campus isn’t it? I had friends go to University there but now (especially this time of year) I’d much prefer to be living where you are where its warm! Is the weather nice in the Carribbean right now? It probably is hot year-round, no?

Thanks for connecting and I hope you had a wonderful weekend!
Sincerely,
Charlene.

[Smokey]

Hi Charlene!

I hope and pray that you are having a great day today.  I would like to add my thanks and praise to Rene’s.  You do a wonderful job for us in keeping us updated and informed with such a happy positive attitude.  I for one always feel much more upbeat just reading what you have to say each day.  Thank you very much!

Smokey

[Charlene Marshall]

Hi Smokey,

So nice to hear from you, thank you for getting in touch. How are things going for you?

Thank you so much for your kind words and prayers, I am so grateful for them as they made my day! My day was pretty good, although I am really stuck in a tough position of trying to make a decision about working. I’ve been off as I’m working through an intense cardio-pulmonary rehab program, but my time off is coming to an end and I really don’t want to return to my full-time career. Life is too short, and there is a lot of political/internal crap going on right now at work and I just don’t want to deal with it. Plus I am exposed to a lot, and physically it is just getting so hard. That said, I have a lot of financials (debt from University) that I need to take care of, so I’m stuck in a tough place that is weighing heavily on my mind. So sorry to vent to you …

I really appreciate your kind words though, and this role really uplifts me so I am glad you find the forums helpful too. This is such a unique, and wonderful online community and I feel so lucky to be part of it!

Thanks again for writing.
Your friend,
Charlene.

[Smokey]

Hi Charlene!

I’m sorry that you are having the anguish with your decision on work, but as I’m 73 I understand what your going through.  Looking back I wish I had not put so much of myself into my work as when it is all said and done, they don’t care.  They just want more.  And I have noticed that there is more and more politics in the work places than there used to be.  And it is terrible that most all that we need in the temporal world costs so much to cause us to be debt ridden.

And I’m glad that you feel to express yourself to me as I sincerely do care.  You will be in my thoughts and prayers.  One of the hardest things I ever did was quit a job I hated “before” I had another job lined up.  But it all worked out in the end.  In fact I was called and offered a better job that very night when I got home.  Things will work out whichever way you choose to go.

Smokey

[Charlene Marshall]

Hi Smokey,

Thanks so much for your reply, and for all of your kind words. As always, they are very uplifting to me!

You are absolutely right, sometimes we “bust our butts” working and trying to do the right thing and from an organizational perspective, you’re right, they don’t care. I’d be replaced the moment I indicated I didn’t want to work anymore and since I’ve shared details of my illness with my Manager (I’ve tried to be so open about it, which I thought was the right thing to do) … I think I’m viewed as more of a pain in the neck then an important employee. Recently my Manager told me she didn’t think we’d be dealing with all the accommodations/needs I have as a result of my illness “2.5 years later”, which angered me because all I wanted to do was scream back at her: “Yeah, do you think I want to still be dealing with this!?” .. its like she thought it would go away. IPF doesn’t go away! I lost a lot of respect for her in that moment, and now don’t want to do anything extra for my workplace which isn’t usually how I operate. I always used to be an “above and beyond” type person, but not anymore. As you said, they really don’t care and I don’t need to be throwing so much of myself into what-has-become just a job. There are awful politics at my workplace right now, and Sunday nights are so anxiety-provoking for me before I have to go back to work now. I just don’t want to, but I need the financial security as financial stress is the worst in my opinion. I experienced this a few years back, when I finished school and didn’t yet have a career and I never want to go through that experience of financial stress again…

You’re right, things will work out in the end. I’ll keep an eye open for new opportunities, and just go in, keep my head down and do my job and come home. To find the joy I need in my days, I’ll look elsewhere as it’s no longer found at work. These forums are a sense of that joy … so grateful for that.

I really appreciate you writing and letting me vent. Thank you!

Sincerely,
Charlene.

[Patsy]

Hi, the chills and struggles to get out of bed that Julie’s dad is experiencing, are the early, icky symptoms I experienced too. I was diagnosed in 2015 after many months of the doctors taking test after test trying to identify my illness. They kept treating me for pneumonia that, thankfully, never put me in the hospital. While I had an overall feeling of having a chronic flu and chronic cough, the major symptoms I could not shake off were the horrible chills and muscle aches that wouldn’t even allow me to roll over in bed without tremendous pain. Even though I was taking antibiotics and steroids in those early days, the one thing that eased the deep aches and chills was ibuprofen. Once I got a firm diagnosis and was prescribed cellcept, prednisone and supplemental oxygen, did most of those symptoms start to subside. For about a year I continued to experience what I now call “flare ups” but they were less severe and not as frequent as time passed. I still wear more clothes to keep me warm, even in the summer (I live in California). And you’ll often find me under a blanket. BUT, I gradually began to improve. I take supplements that are loaded with natural anti-inflammatory extracts and eat foods that do the same.

Now, back to your dad, Julie. One of the best things that was prescribed for me was pulmonary rehab. Mine was an 8 week course that I attended at a hospital nearby. There were 6 others in my class that attended 3 mornings a week. We learned about our diseases, what to expect and taught how to exercise appropriately for our limitations (so important). It was so cool to watch each other improve over that period of time. Now, each one of us who suffer from IPF is different, but there is hope when it comes to managing our symptoms. I applaud you for taking an interest in helping your dad. I know he appreciates that assistance.

Patsy

[Charlene Marshall]

Hi Patsy,

Thanks so much for writing to us, and I am deeply sorry for my delayed response! It is really interesting for me to learn about the unpleasant side effects you first had associated with your IPF diagnosis, though I am really sorry it was at your expense. I haven’t heard of chills and body aches/general malaise being a first symptom of IPF, but now that I know, along with others, this could be really helpful information for future patients and caregivers. It can be something more concrete that they can look out for maybe, leading to a quicker diagnosis…

I also was prescribed tons of steroids and antibiotics in the phase of the doctors trying to figure out my diagnosis as well, which took 13 months. Glad Ibuprofen was able to help you, and that once prescribed supplemental oxygen along with the the two other meds, your main symptoms subsided. You mentioned flare-ups, do you have anything specifically that seems to trigger these?

Great words of support for Julia, Patsy, thank you for reaching back out to her. I also agree with you re: the pulmonary rehab course and how helpful it was for me too!

Wishing you both well.

Sincerely,
Charlene.

[Martin Smith]

Hi.

I’m new to the forum. I was diagnosed with IPF November 2017 after i was rushed into hospital with a saddlebag Pulmonary Embolism. A variety of scans and tests after i had recovered from the Embolism showed early stage IPF. The past year has been tough, both physically and mentally coming to terms with the condition. I am due to see my consultant in January, but a question i have which someone may be able to help me with – i have noticed crackling in my lungs when breathing. First noticed about 3 months ago when in bed, but am noticing it more and more, especially when sitting and standing. Is this a normal symptom of IPF?

[Charlene Marshall]

Hi Martin,

Thanks so much for writing and sharing a bit of your experience with us. Welcome again to the forums – this online community is filled with some pretty wonderful people who will be happy to help/support you however we can. Sorry to hear of your November 2017 diagnosis – I remember the first year or so following my diagnosis, and it was tough so I hope you’re doing as okay as possible…

With regards to the crackling, yes it is a normal symptom of this disease, unfortunately. It is one of the most distinctive symptoms of it when it comes to identifying which interstitial lung disease (ILD) a patient has. If you didn’t hear it before, it might indicate disease progression (but maybe not, I am certainly not a doctor, although something good to ask your doctor about in January). They say it sounds similar to “velcro”, does that describe it a bit?

Are you being followed by a pulmonologist/lung doctor as opposed to a regular family doc? If not, I’d certainly recommend that so he/she stays on top of your needs pertaining to IPF. Not sure if any of this is helpful, but if there is anything else we can do to help you, please don’t hesitate to reach out!

Warmest regards, and welcome again.
Charlene.

[Smokey]

Welcome Martin!

To a great forum.  We are glad to have you with us!

I too have crackling in my lungs according to my doctors.  Normal?  I don’t know, I guess so.  It does seem to come and go or maybe the doctors just don’t mention it all the time.  No one has ever explained it to me but I believe it is probably the parts that have stiffened up trying to move or stretch.  Hopefully someone wiser that I will explain it to us.

Smokey

[Charlene Marshall]

Good reply Smokey, thank you! 🙂

As far as I understand, the “crackling” is a distinctive symptom of IPF unfortunately. Do you notice this more often during certain positions/times of day/when you’re unwell, etc? I’d be curious to know as this isn’t something my doctor has heard in my lungs but I am kind of waiting for it to develop. Hope it doesn’t cause you any pain!

Thinking of you,
Charlene.

[Deleted User]

Hi everyone,

Can you please help me sort this out. I have not been diagnosed with PF/IPF, but I am having some symptoms that have been going on for 4 months. Is it in my head or what? I have had 5 rays, 2 ct scans, blood work, spirometer, ekg stress test, 1 million ekg’s. I did not over night o2 test where one night I was fine the next was all over the place so waiting on a sleep study. I get pain in my chest, like swift sharp sensations, sometimes chest is tight, can sometimes feels heavy. I also have really bad lower back pain all of a sudden. I also can get pain behind the lungs and what can feel like painful breathing. I’m up and down with sleep.  I have been worked up and all is well. I did get an endoscopy and I have gastritis, other then that my abdomen ultra sound is all normal. I also have a more vibraty voice, weird. Oh and throw in foamy urine and weight loss which was lots of muscle as I sat around freaked out for months. No cough, no shortness of breathe, no phlem, an dnot noisy sounds in lungs. accoding to docs they sound clear.  I can run and my daily 02 is high. My carbon levels on all blood work have been in range. Have not had an ABG though. My CRP level was elevated but that could be due to gastritis or plain stress. Just looking for advice if there is anything more I can do besides the sleep study to find out if I have ILD/IPF/PF? Or am I just letting my health anxiety run away with me? TY! Rich

[Charlene Marshall]

Hi Rich,

Thanks so much for joining the PF forums and welcome again!

So sorry to hear you’re experiencing those unpleasant symptoms, I can imagine how anxiety-provoking / worrying this would be for you. Was it the heaviness in your chest, pain behind your lungs and lower back pain that caused you to seek out the tests you mentioned above? Those are a pretty conclusive number of tests, but my biggest advice was to keep pushing if you feel something is wrong. Unfortunately far too many people have a delay in getting diagnosed with IPF (and many other things as well) and the disease progression is really far along. Was your CT scan a high-resoultion one? This is the best way to identify IPF, but not many doctors request it. Maybe this could be an ask of your doctor in future? I would also ask for an ABG test just to rule out / confirm the carbon dioxide levels are within normal range. Not sure about the foamy urine, I’ve not heard of this before but my CRP was very elevated before I was diagnosed and I have no knowledge of having any type of auto-immune disorder.

I think you’re right that something might be going on, and if your gut says you don’t feel normal I’d go with that. We tend not to trust our guts as much as we should, and so long as the doctor is willing to investigate, I’d just go with that. What about acid reflux/GERD? I know this can cause so many problems, and unusual issues for people. Have you investigated this yet?

Goodluck and keep us posted.
Charlene.

[Deleted User]

2  ct scans not a scratch. Neither high res. Can’t get a doc to order one. I went o ER for 2nd one cost me lots of money. Initial symptoms were tightness of chest productive cough which went away. Loss of weight and insomnia. Now its tight Chest, chest and back pain, and insomnia. I’ve had 5 xrays a bunch of test, second opinion next month. Sleep study denied as I might have maxed my funds with insurance. Sent in an appeal. Yesterday for 1st time felt true shortness of breath. Not noises in my lungs, no cough, no signs of scarring or other such. I’m losing it, I’m worried of course. Can’t get doc to order the abg! I’ll do anything at this point for an answer. I don’t want IPF of course, but I don’t want to sit around get sick with no treatment. My scans were 3mm slice viewed by 3 radiologist docs. All said no pleural abnormalities. Good news just wish I felt the same way.

[Deleted User]

I have had my own labs and all times my co2 was in range. But not the AHH which I do want. I did have an endoscopy and did get diagnosed with gastritis. On medicine for that. Suggestions appreciated

[Charlene Marshall]

Hi Rich,

Thanks for your reply, although I am so sorry to hear you’re having to fight so hard to get an answer based on your symptoms. That really sucks, and in and amongst itself can be exhausting on top of dealing with insomnia/fatigue already. I am glad your CT scan didn’t show anything concerning, but really wish your doc would consider a high-resolution scan (HRCT) because its usually the best way to pick up scar tissue in the lungs, from what I’ve read anyways – I’m certainly not a physician. Is your cough dry or productive? Often times a productive cough can be a stubborn virus, which unfortunately can take months to go away but the dry, non-productive cough was one thing I couldn’t shake before my diagnosis. I can certainly understand your worry and not wanting to just “sit around” and be getting worse while no one seems to know is going on. I’m really glad you got a second opinion though, I hope that proves helpful!

Take good care, and wishing you nothing but the best in your quest for answers!
Charlene.

[Deleted User]

Yes, I don’t know why she didn’t order that scan being I presented her with my concerns of ILD. But she sent me in for the Angio PE chest ct, so it was a great scan to view chest, heart etc. I don’t smoke anymore, and was not a pack a day guy or anything like that. What lead to this was a night out with the guys and I has a few smokes back to back. That lead to a tightness of chest later in the week and it was a productive cough that lasted for about 3 days. The cough went away but then my heart started to race. Was spitting white phlem with cough. This is when the foamy urine started too. I like you was traveling abroad in England and i started researching stuff.dr Google had   from having PH, secondary to COPD, IPF, and everything else. I got  all worked up in Paris and we flew home early. Sucks wish I would have fought it out missed out on so much in paris. Since then I’ve spent thousands on doctors, counselors, etc. I have been diagnosed with health anxiety and gastritis. After a while I got really anxious, went to an ER, and begged for the HRCT. The ER does not do those scans, you need a special order. That’s when I got my second 3mm c.t no contrast this time around. All clear, that was about 4 months into symptoms. Something should have shown you think? And yes from what I read HRCT is gold standard, but these machines I went in were new up to date. One was a 64 slice, the other 128 slice. It’s torn up my holidays, almost my familu, and my mental game is off. I’m trying my best of course. Now I’m dealing with the chest and lower back ache. Also, my  voice can be very vibratious but doc says it’s not a sign of increases fremitus. With peppermint tea, or a beer, it seems to relax a bit. Anxiety? Getting treatment to try and help the back. Sleep is better than before, but will wake up with a racing heart here or there. In another forum, they were sure I was not dealing with PF of any kind. I would be thankful for that. Just ready to get through this please.

My daytime spo2 is 97 to 100, even when working out so that is good. At night, is my struggle here and there. Perhaps it’s a mental game, or maybe sleep apnea. That’s what I’m praying for. Second opinion is set Jan 22nd, I’m hoping by then I’m feeling better. Yes the foamy urine doesn’t seem to tie in anywhere. My HS crp level was 1.9 and my cardiologist said that’s not bad that just about everyone has an increase in crp. My lung doc also stated that it was not clinically significant to my concerns. Hoping my appeal for my sleep study is approved again perhaps I have my self sleep apnea out of all this. Would also like to put a few pounds back on. Lost like 15, and that happened right away. Stress?

My spirometer was normal, my gas exchange or DLCO was 102%. So im gettin oxygen in blood just fine. Mostly everything checks out well. Yesterday I felt short of breathe but my spo2 was  100%. Just a real brain tease!

Blood levels have all been good, again, would welcome an ABG perhaps my GP will order for me soon. If those number rock then I need to believe my lungs are ok. Because I will not have any justification for HRCT. Unless my second opinion will order it up. Then it’s only a broncoschopy from there but I’m not going that far. I believe that the CT imaging is great these days. That’s what gives me hope on my scans I’ve had already.

So no cough, no crackles in lungs, and no clubbing of fingers. Just pain in chest and back and anxiety that will steal your soul! Thanks Charlene for writing me back. It is helpful.

[Charlene Marshall]

Hi Rich,

I am so sorry to hear what a struggle this has been for you, and especially that you  missed out on time in Paris. I’m guessing that the angio PE chest scan and other x-rays have come back clear then? Do you recall any trauma (ie. being hit, or a fall) to your back/chest in the last year or so? I wonder if you have some kind of an injury to the muscles surrounding your lungs. Does it feel muscular, or does the chest tightness feel like it is within your lungs? I am certainly not a physician, but just trying to help sort out a direction for you although it sounds like you’ve been down a lot of different “roads” to get an answer. This must be so frustrating for you! I would imagine if it was some kind of ILD that some indicator would have shown in the scans, yes, but I can’t say with certainty. Has the doctor listened to your lungs for any kind of sound/crackling? Sometimes this is overlooked because it is such an easy investigative tool and we’re looking much harder for answers. May sound like a silly question, but just thought I’d check.

It could be stress or anxiety, I never really had any idea the physiological effects that could have our bodies until I met with a Rheumatologist. Have you seen that specialist yet? I was skeptical about going but he was so incredibly helpful in explaining things for me that all other doctors seemed to overlook. I actually wrote a column about it, which you can read here if interested. Have you had any stressful events recently in your life where maybe you’ve activated your nerve receptors (see the article for more explanation on this) or that has caused you some anxiety?

I’m glad to hear your scans have come back clean, but I can only imagine how worrisome this is, especially if you’re experiencing shortness of breath. People tend to underestimate the impact of this, and it is by far one of the scariest things I’ve ever dealt with. Please keep me posted on how the Jan 22nd. appointment goes, I’ll be thinking of you and I’m glad you sought out a second opinion – way to advocate for your health needs!

Take care, and I hope you get a chance to mentally and physically rest this holiday season.
Regards,
Charlene.

[Deleted User]

For those who still are reading. What were your key indicators for diagnosis, and what test did you go through that lead to it. Thank you

[Deleted User]

All x rays and scans clear chest tightness is center and sometimes does not allow my chest to full expand. Can have bouts of painful breathing. Yes the shortness of breathe barely hit me the other night. I find peppermint oil and tea helps. I really would like for all this to subside. I have had anxiety before but nothing to where I feel this bodily pain. I read an article of yours about painful pulmonary muscles and that feels like what I’m experiencing. I sure hope it’s treatable and not nothing as sever as IPF. Like you, it’s not a club I’m looking to join. Just an answer would help and a little more support from my lung doc. I’m not pointing the finger at her as she is servicing those who are sick already. But I’d like her to me a little more private eye for me and not just brush it off as anxiety. Praying and remaining hopeful thanks for writing me back. Merry Christmas I’m going to do my best to have a good day. I’m in control of my joy and it’s a joyous time!

Are there treatments for the issues I’m having? If I need oxygen at night will it help with the muscle aches? Are the anti inflammatory Drugs like prednisone helpful? Costcoroids I just want to feel as close to myself again as possible.

[Charlene Marshall]

Hi Rich,

Thanks for providing the clarifications – yes, I can imagine you certainly want answers no matter what they are so at least you can start on a plan or treatment to help reduce your symptoms. I will keep my fingers crossed that it isn’t an ILD, or that it is maybe it is something that can be managed long-term. Do you have any sinus issues, like congestion, that this would somehow be connected to a long-lasting virus? Not that I want to ‘discount’ your symptoms, they are enough to concern you for sure, but sometimes (*sometimes*) various viruses can be really stubborn and cause unusual pain or discomfort. No recent bouts of pneumonia where your lungs could have been damaged a bit? I do find peppermint oil helpful as well, and use the doTerra blend as I know it is certified pure oil.

I’m really glad you’re seeking a second opinion for the symptoms in January. While anxiety can cause a lot of issues for us, like you say, your previous experience with anxiety wasn’t like this so hopefully the second opinion can give you a few more answers. Anxiety or not, no doctor should be dismissing your concerns…

I can’t really advise on different drugs that will help as I am not a physician. I know people find prednisone helpful in terms of clearing out the lungs, but some people (like me) really struggle with the side effects of it. Others find different corticosteroids helpful, but that should be investigated by a doctor for sure as different antibiotics/steroids target different things as you’d know, so you would want to make sure the drug is effective for what you’re treating. I use oxygen and it does relieve some of the muscular pain I have from breathing yes.

Hang in there and keep us posted on how things are going if you can…. happy holidays!

Charlene.

[Deleted User]

Has anyone dealt with a hoarse voice that seems deeper and carries more vibrations. Anyone experience weight loss and can’t get it back?

[Deleted User]

Charlene did your cough just come on all of a sudden? Is it a non stop cough? When you have your ct scan how much of your lungs were already damaged? Do you remember your spirometer results?

[Charlene Marshall]

Hi Rich,

Thanks for your question – sorry for the delay in getting back to you, I’ve been offline quite a bit the last few days over Christmas, which has been nice. Did you have a nice couple of days?

My cough actually didn’t develop as one of my first symptoms, and thankfully isn’t one of my most bothersome still. It was actually shortness of breath during exertion that caused me concern as I’d always been very active up until my diagnosis: playing hockey, swimming and running. When I was completing a tourist-type activity in Australia, I noticed I was really short of breath and shouldn’t have been as it wasn’t a really strenuous activity. This was after 9 months of trying different antibiotics, steroids, puffers, etc for what-I-thought was just a stubborn cold / virus from being overseas. I was a bit more congested than usual, and had a bit of a dry cough but it wasn’t constant (and still isn’t). It was the shortness of breath that concerned me most. After that trip to Australia, I went to the urgent care clinic here convinced now that it was not a cold / virus like the walk-in clinics had been saying and my 02 reading was 88% so they shipped me to the ER. Then it took another 4 months to get my diagnosis. I don’t remember my first spirometer results, or the HRCT scan as it was nearly 3 years ago and the time of my diagnosis was quite a blur because I didn’t want to accept that I had a chronic lung condition so young… does this help clarify a bit?

Charlene.

[Deleted User]

Hi Charlene,

So I wound up in the ER last night to try and get some help. They took another x ray which came back normal. My blood counts were good besides some levels were slightly low. Calcium, hemogolobin, HCT, MPN, and Hemolyzed was abnormal. Other than that things were good. My normal SPO2 was 96%. I tried to fall asleep to see if they could see a difference in my SPo2 at night but had no luck. Darn and I was there for like 6 hours too. My airways were clear once again the doc said. Could it be that my lungs are ok that something else is getting me?

The doc agreed that I needed to take the nuclear anti biodies blood test so I did today. To try and address the increase in CRP levels in my system. So I should get those results soon. I am also worried that one of my toes is starting to club. Makes no sense to me, I have strong day time SPO2, why would it do that? I have been to a pulm doc and an er two ct scans and no diagnosis. My lungs don’t seem to have a problem with that. So that really hurt me today and put me in a deep depression. I read that clubbing was more of an advance symptom of the disease, one in which they find no sign of clinically.  I tried to contact my pulm doc and they said a club toe is not pulmonary related, I was like what? So I guess I am out of luck with their office as I spoke with their manager. So the nightmare continues however I believe this next blood test will give me more insite on the inflammation in my body. The er doc wants me to see a reumy. You have been through this before, it is exhausting trying to get answers. I have a cough right now, but I recently caught a small cold so that is the culprit. Interesting that you don’t suffer from a cough. I did read somewhere that if you are in good shape you might not get that symptom. I was like great! More for me to wonder about. Do you think that whole time you were out over seas you were at 88% SPO2 and did not know it? Wow that’s scary business. I truly hope that whatever is going on it is treatable. I also hope and pray that you and everyone else on this forum gets the best treatment possible and can lead a normal life. I can relate with you as far as being a rock star in shape person. I was on my buddy’s softball team, I played college football and arena football. Top of the world with work and with my family. Couldn’t be more devastated right now and I have even been diagnosed with anything. Maybe I am barking up the wrong tree? But loss of weight, chest and back pain, now a clubbing toe, tightness of chest etc. Why doesn’t imaging pick anything up though?

My sinuses do seem to be narrow, like tighter than usual. No recent bouts with pneumonia, I did have the flu last year and that was hell. No, please do help me try and figure out an alternative to my symptoms, anything than IPF. I never even heard of this disease and now I am really worried about it. But again no scars or abnormalities on my scans so it must be doing a heck of a job hiding out! I sure hope not. Maybe next time you meet with your pulm doc you can ask them what they think about my situation. What should I do next? I just have to sit around until the 17th for my 2nd opinion. Hope you had a Merry Christmas.

[Charlene Marshall]

Hi Rich,

I’m so sorry to hear this and I hope today’s note finds you feeling even a little bit better. I can’t imagine how frustrating this is for you! That said, it’s hard for me to advise or offer suggestions with certainty on what is going on or what to do next, as I am not a doctor. It does sound like maybe it isn’t your lungs though, if so many scans, tests, bloodwork etc are coming back normal and indicating that your lungs are healthy. I know a lot of shortness of breath can be caused by heart issues too, have you had your heart thoroughly investigated?

You’re right about the clubbing: it is an advanced symptom of the disease, and my lung function is between 30-40% and I don’t have this yet, or not obvious to me anyways so I’m not sure why that would happen with a 96% SP02. A real mystery for sure! I am glad you are going to see a Rheumatologist though, mine was incredibly helpful and really shed some light on what was going on for me aside from the lung condition which I had no idea about. He/she will be able to treat the inflammation as well, which might at least reduce any pain/discomfort you are experiencing.

Regarding my experience, I can’t be certain of my SP02 throughout 2015 while I was struggling with shortness of breath, but unfortunately it was an overlooked symptoms for at least 9 months before someone took it seriously, coming from a relatively fit, active and otherwise healthy 28 year old. I hope the nuclear test comes up with something (I do, and I don’t of course, I do only in hopes that it’ll give you some answers) or that your doc offering a second opinion in January offers the HRCT scan. Unfortunately, if no over-the-counter medications are alleviating your symptoms, it might be more ER visits or waiting until the 17th for the second opinion. What might be really helpful for that doc though is to see a ‘tracking’ of your symptoms. Do you write them down (ie. when they occur, what you’re doing, what your numbers/symptoms are, etc)? This might help him identify a trend of some kind… just a suggestion I can think of off the top of my head.

Take care,
Charlene.

[Deleted User]

Thanks Charlene for your help. Gosh 28 darling so young to be hit with this. I can only imagine trying to wrap my head around this 10 years ago as right now I’m really struggling. So the test came back negative with the exception of absolute granular something is high. I’m currently experiencing a cold so it could be do to that. Or do to some other things nflammation in my body. Who knows at this point. I’m just in a ton of prayer at this point and trying to not do anything stupid. I’m really hurting mentally.

getting sick or whatever has been a struggle and has really bottomed me out. I can only hope that there is a reason for this season and I can make my way back from it. I think the toe thing is happening at night. My spo rocks during day but I believe I’m not breathing well at night. Gonna see my GP tomorrow to set up over night o2 to see if it helps. I’m inches away from checking in at an ER telling them I’m going crazy , to see if I can spend the night at the hospital. Then maybe I can push for the HRCT. In the ER they only do 3mm slice non HR which is good, but for peace of mind I need that HRCT.

I don’t think the ABG is going to help me right now. My venous CO2 is always in range and my SPO2 is always good day time. Unless it shows my PH is off. Can’t believe the things I know and talk about now it’s beyond me. I’m sure everyone can relate. I feel like an internal medicine doctor.

Ok have a great weekend and I will keep you posted. Thanks for your help god bless you

 

[Charlene Marshall]

Hi Rich,

Thanks for your reply, and letting me know how you’re doing. It is exhausting dealing with a chronic illness when I know what it is, I can’t imagine the agony you’re going through when trying to understand what is going on but coming up short with answers. I can just imagine how frustrating this would be both mentally and emotionally, on top of physically. Tell me, what types of support do you have while going through this? It’s really important to have someone to connect with to help with the mental/emotional battle this is. You can write us any time, or private message me, but unfortunately I’m not close by. I think it is important for you to have someone close that you can connect with in person. Do you have someone who could fit this role?

Let me know how your conversation with the doctor goes about nighttime 02. While oxygen is important for us physically, I also found that once I begun using it, it eased my anxiety/worry about not feeling like I was breathing well enough, which then contributed to feeling better overall. There definitely is something to be said about oxygen alleviating not only our physical needs, but the mental anxiety that can come with shortness of breath. I hope your doctor prescribes it for you and you can give this a try. There are other methods of obtaining supplemental oxygen out there as well, you can buy concentrators on Kijiji I’ve heard but you really need to be careful about how much oxygen you use as too much can also be damaging to your lungs so its important to get your dose amount from your doctor. Does this help at all?

ABGs also hurt (in my experience) so if you don’t feel it necessary to get one, I’d trust your gut and avoid it if you can. Hopefully the HRCT helps, and that your doctor in Jan will refer you to receive one. Have they investigated Pulmonary Hypertension with you at all? Not sure how much you’ve had test on your heart..?

Hang in there!
Charlene.

[Deleted User]

Do I decided against the ER. I actually drove there but I’m burnt out on needles and EKGs. Going to try and stick it out until the new year. Going to engage in a ton of healing prayers and just keep the faith I’m going to be ok. Happy new year and thanks for your help

[Charlene Marshall]

Hi Rich,

I can certainly empathize with the feeling of being burnt out with hospitals, appointments, etc. It is so tiring! I hope some rest and relaxation helps calm your mind a little bit, and maybe reduce some of your physical symptoms as well. Engage those healing prayers, and take as best care of your body as you can: gentle exercise, lots of rest, stay hydrated, eat well, etc. and see if that helps. I know you’ve probably heard all this before too…

Hang in there, your appointment in January will be here soon and in the meantime, know that we’re all here for you too.

Charlene.

[Deleted User]

Thank you! My appointment got moved to this Thursday. Nervous but need to know if I need medical help. Until then staying in prayer that I’m going to be ok. I will pray for you and all my brothers and sisters who are suffering around the world. I have always prayed for everyone. Happy NY

[Charlene Marshall]

Happy New Year to you too, Rich – I hope this year is filled with less uncertainty and more answers for you. I’m keeping my fingers crossed that your appointment goes well this coming Thursday. Hang in there!

Charlene.