aishia-moaishia
Forum Replies Created
-
I was originally diagnosed in 2015 but it was early and I wasn’t symptomatic. In December I had my yearly HRCT and there was some progression as well as PFT’s in May of 17 and November of 17 when my function dropped from 68% to 33%. I had a 6 min walk test in Febuary that resulted in me needing up to 6L of oxygen with exercise only. Otherwise at rest and normal activity my O2 stays above 90. I was so angry when I learned I needed supplemental oxygen with exercise. I know that sounds silly. I did get a little short of breath but nothing abnormal with exercise and I really just attributed it to being overweight and out of shape. I was not expecting the need for oxygen. I have adjusted now and I notice I can exercise much better with the supplemental oxygen.
-
I take both Pirfenidone and 20 mg Prednisone daily. I started at 40mg per day for 14 days then titrated down by 5 mg per week until I got to 20mg per day. My dr says this is long term for me. I feel really lucky that I don’t have the increased hunger or mood swings (I don’t think). I am tolerating the med well overall.
-
Just finished with 2 days of test and it turns out I have GERD and silent reflux. I will be having surgery to correct it. I am not sure when. What I do know is my wonderful dr suspected I had silent reflux/GERD because he finds it very common with ILD. It is definitely something worth looking into. Apparently you gan have it without being symptomatic.
-
Charlene! First a BIG OLE HUG for you!
I haven’t really had an anniversary date yet. Although in was spring 2015 when I was told I had ILD, it wasn’t until December 2017 that I was really informed how serious my disease is and that there is a relatively short life expectancy.
My advice is this, post the stuff on your facebook cliche or no, if it means something to you than it will to your friends too. Nearly every day I post something about positivity and living life to the fullest. Its how I feel so I share it. I also share the days when I am feeling whimpy and scared.
I can’t imagine how it feels coming up on the anniversary date but one thing I did learn about my own disease is that there were beginning signs showing on a CT scan I had fall of 2011. So I have had this for 6 1/2 years and I am still here.
I say focus on living while giving yourself grace when the fear and grief come at you. Feel those feelings too but dont stay there too long. As for today I say treat yourself to celebrate living 2 years with this disease. Take a bubblebath, get some icr cream.. whatever it is that will put a smile on your face. YOU ARE AMAZING AND YOU ARE ALIVE !
-
Charlene,
They aren’t sure what caused the decline but they do suspect it may have to do with my sinuses. I explained in a previous post somewhere about how last summer I started smelling a random “yeast bread” smell and had to have sinus surgery in December. When they did my surgery I has Fungal balls in my sinuses, the fungal balls were Aspergillus ( a common mold). Your nose is the pathway to your lungs so I know my Dr. is seriously looking at this as a possible contributor. Thank you for mentioning about your friends mom who has NSIP and that she is doing so much better. My dr told me the same thing at my last appointment. He said we aren’t going to talk about lung transplant because I do not qualify because of my weight. I need to loose a minimum of 30 pounds which is why I am so focused on diet and exercise.
Hearing how well your friend is gives me so much hope!
-
Although I was diagnosed in 2015 with Interstitial Lung Disease it is just recently that I have been diagnosed with a type. So up until December I was basically just living my life getting HR CT scans yearly and PFT every 6 months and was stable. May 2017 to November 2017 I had a 30% decline in my lung function.. Up until this point I didn’t even really think about it or know that it was life threatening (I prefer life threatening to terminal or fatal). This all being said, my local Pulmonary dr has diagnosed me with IPF. I went up to Seattle last month and saw a ILD specialist at the University of Washington Medical Center’s Interstitial Lung Disease Clinic. He does not believe I have IPF but rather and auto immune related NSIP (non specific interstitial pneumonia). Regardless NSIP, PF, IPF are all types of ILD. They all behave in roughly the same way. The difference is how to treat it and sometimes how fast it progresses..
I haven’t really come up with a short and sweet way to explain to people. Mostly I just say I have ILD. It is a life threatening, progressive, lung disease with no cure and little treatment. If they have more questions I explain the best I can (like I did above). Most people try to compare it to COPD. Although COPD affects the alveoli similarly to ILD, COPD is an obstructive disease meaning it affects how much air you can push out or expel where as ILD is a restrictive disease and affects how much air you can bring in.
I am still trying to learn to explain things in a way that is quick and easy to understand and doesn’t make other people uncomfortable. Like I said this is pretty fresh and new to me still so I am learning too.
-
C- It is actual pine shavings so the smell is just that of a pine tree. I don’t find it to be too strong. It does absorb the cat urine and is clumping but I find it doesn’t mask odor as well as the commercial clay scented litters do. However I scoop out the box once or twice per day so it doesn’t seem to be an issue.
-
Charlene,
My switch to the pine litter had nothing to do with my ILD. I actually switched because my old man dog Buddy cannot stay out of the cat box and I was worried about how the clay clumping litter would affect his respiratory system and his stomach. I was concerned it might cause a blockage or something. So I switched to the natural pine litter because it doesn’t have dust and I figure it wont hurt his digestion if he continues to snack on kitty roca. Dogs can be so gross! Either way it seems to work well, my cats adjusted no problem and Buddy isn’t snacking as often. I think the Pine might even deter him a bit.
For your cat I would suggest slowly introducing the new litter by adding a little at a time to the old litter until it becomes a complete transition. That should help with her finicky potty preferences.
-
I have wondered the same thing but I use an all natural Pine litter so there is no dust. maybe something to consider.
-
Charlene,
I ordered my salt inhaler off of Amazon. There are several different types. I just chose a moderately priced one and chose ceramic over plastic. I will begin using it today. I have heard great things about the salt lamps as well but have never used one. It is officially spring here in Oregon too but it is still cold and rainy. However there are promises of sunshine and 60 degree weather later this week. I am just ready for summer.
-
I live about an hour away from the Pacific Ocean/Oregon coast. Guess I have an excuse to take more trips to the beach! I just wish it were warmer. Charlene, I ordered a Salt inhaler and should have it this next week. I am very interested in any homeopathic treatments that I can do in conjunction with the western medicine. A holistic, proactive approach works best for me. I don’t know if we have any “salt rooms” here but I am looking into it for sure.
-
I use one inhaler Ventolin, It is occasional and just helps with the reactive airway stuff. Currently my allergies are wreaking havoc on me. I have upper respiratory crud and wheezing and coughing. I feel well, no fever, not super run down just sound horrible. I have never heard of this salt inhaler and I am really interested in it. I will be doing some research now.
-
Janis and Charlene,
C- thank you so much for posting the link to that article! I am really strong in my conviction to not be reduced to my disease. This is just another page in my story and does not make up my whole book. I will do everything to help others know that they are more than their lungs/diagnosis.
J- I love dogs! I have 2, a 14 year old Golden Retriever/Blue Heeler mix and an 8 year old Boxer. We also have 2 cats. I am married (almost 21 years) to the best man and my favorite person ever! He is my rock and my heart! We have 2 beautiful children ages 21, and 20. We also have an unofficially adopted son as well, he is 21. I work FT for a hospital here in the business office and am fortunate that I get to work from home. I am also a FT college student working on my Bachelors of Science degree in Public Health/Healthcare Management and Policy. I have hopes to finish my BS and continue onto a accelerated BS to RN program and flow into a Masters of Midwifery program to become a Certified Nurse Midwife. I love yoga, walking in sunshine, taking trips with my family, art, interior design, some gardening, reading, anything creative really. I love to sing but am not so great at it but I still do for the joy of it. My daughter has a lovely voice and we often joke that I sing with a lot of passion but little talent, ha ha ha. It sounds like you have a very lovely family of 2 legged and 4 legged loves. I don’t know much about Pekinese dogs but they are quite cute!
-
Hi Janis,
So nice to meet you. I had my appointment up at UWMC last Friday and it was pretty amazing. Dr. says I do not have IPF, but rather NSIP auto immune related. I am still tasking Esbriet with no side effects (thank goodness) and am now taking Mycophenelate and Prednisone. Thank you for joining this forum and please keep us informed on your appointment and how you are doing. <3
Smiles~
Aishia
-
I don’t know that I experienced any particular side effect. However, when we live with something it just becomes normal for us. I love the out doors and sunshine as well. I take Vitamin D3 5000 IU once per day. I don’t know if it effects how I feel per se but I do continue to take it because I am consistently deficient. I also take a multi vitamin, Vitamin B Complex, Magnesium, Tumeric, NAC, DIM. I am going to add in Calcium as well. I also take a probiotic.
-
I have always been low Vitamin D but I live in an area that is grey and gloomy about 9 months out of the year. Vitamin D deficiency in very common here. I take Vitamin D supplements daily. I am big on vitamins and supplements and take several daily.
-
Hey there Charlene,
I wouldn’t give too much thought about sinuses unless you really start having trouble. I also have a very sensitive sense of smell, so sensitive that it can be annoying. That being said it is good to be aware but no need to be hyper aware. I discovered my sinus issue completely off a fluke. My ENT told me it takes about 3 months to heal. Although I feel much better I do still have some post nasal drip and I believe that is what causes my coughing fits when I first wake and get out of bed in the morning. Although these coughing fits are getting shorter and not as harsh I still cough for a few to 5 minutes every morning when I first get out of bed. My cough is productive though so I am hopeful as I continue to heal this will taper off. My 3 months post surgery is mid March so a few more weeks to go. I do take an over the counter allergy medicine during the spring and summer because I am allergic to several grasses and the area I live in has many fields that grow and produce grass seed. Go figure!
I had not heard that IPF with underlying autoimmune is easier or better?? I would love to read that article so if you do find it please send it my way. My ANA has come back positive twice but then the follow up test for Lupus is negative. So far no auto immunes for me.
My appointment on Friday is actually in Seattle, WA at the Interstitial Lung Disease Clinic at the University of Washington Medical Center. I will be seeing one of the Pulmonologist there. I have a Pulm here that I see but I wanted a second opinion and my Pulm here agreed that the more heads in the game the better. So he has referred my up to Seattle because this clinic only deals with ILD. So I am anxious but also excited.
Thank you for the juicer recommendation. I am definitely considering getting one. Especially with my wonky appetite.
We must touch base after out appointments. Have a lovely week and we will chat soon!
Aishia
-
Hey Charlene and Lesley,
I am so happy I was able to shed some light on the sinus issues. We have no idea what may have caused mine although given I live in an area where seasonal allergies are common I imagine it was cause by that. Charlene, sorry it has taken me a bit to respond. It has been a crazy busy week. My appointment is next Friday March 2. We will have to touch base next weekend. You are in Ontario I am in Oregon, opposite sides 🙂 We have been having snow this week but is not common for us. Typically we have tons of rain during the fall, winter, spring and mild and warm summers. It is quite lovely here in Oregon but colder than I prefer. Do you have any recommendations on juicer brands? I am beginning to research them.
I am doing really well and hope the same for you! Chat soon and have a beautiful weekend!
Aishia
-
Hey Charlene!
My weekend was quite lovely albeit a little chilly. We are getting some snow in our area where we don’t typically get snow. Everyone kind of freaks out. It doesn’t bother me too much, I am fortunate that I telecommute (work from home) so it doesn’t affect my work and if I have to miss a college class no biggie. How was your weekend? Do you do anything exciting? I mostly stayed at home. I did some house work, some homework, watched a movie with the hubs and just relaxed. I am not sure if it is the Esbriet but I am just starting week 3 and I am tired. Not tired like I want to sleep but just low energy. I also have zero appetite…. I force myself to eat 3 times per day because I must with my meds and I give myself a lot of grace and patience. I did yoga yesterday and that seemed to help with my energy level. Maybe that’s the key for me.I really need/want to walk more but it’s chilly outside. Although walking outside year round is an option Im not a huge fan of the cold. It does rain quite a bit here. I may have to invest in a treadmill at least I could walk inside. I am mostly trying to avoid dairy and chicken eggs (I had immune allergy testing and am mildly allergic to chicken egg whites) Dairy is known to be inflammatory to our respiratory system. I am not 100% but these are things I am trying and am hopeful that they may help my breathing. I will also talk to my dr about it.
A juicer you say, now that I am experiencing the appetite loss I really may look into juicing. This is actually a fantastic idea! Thank you for that tad bit!! Another thing we have in common Raynaud’s!! I am really so happy to have found you here, we seem to have so many similarities except you are a wee bit younger than I 😉 I hate my coughing! I literally hack for 5 – 10 minutes every morning when I first wake up, It sounds awful. Sometimes when I get winded I start to cough and people are always asking if I am okay. I know they mean well but it is so embarrassing. One day a came into class and I was breathing heavily cause I had just come up the stairs and coughing a bit. She said, “You don’t sound good”. I assured her I was fine but she kept on about it a little (I suspect she thought I was ill, being flu season and all). I had to assure her I wasn’t contagious and explained I have a respiratory disease that causes me to cough and get short of breath but it is not contagious. Of course she felt bad after that but I didn’t know what else to say to get her to drop it. Have you ever had something like this happen and how do you handle it?So interesting about your heart flutters. I am interested to hear what that’s all about. My sinus surgery was kind of a fluke thing. I started noticing a bread dough/yeast smell periodically, after several months I went to the ENT, they did a CT scan and my right frontal sinus was completely closed off with inflamed and overgrown tissue. They went in there cleaned it out and opened it up. I also had fungal balls in there of Aspergillus (mold) and puss pockets in my other sinuses. The interesting thing is I had no history of chronic sinus infections or anything. ENT dr said it take about 3 months to completely heal. So Mid-March I am 3 months out. I am hopeful this drainage and my cough will mellow out.
Yes our appointments are just a few days apart. We must definitely connect to see how each other are doing. Have a happy day Charlene!!
-
Charlene,
You are so correct when you say it is powerful and meaningful to connect with others with similarities in our stories. I used to run as well, well jog, I was never very fast but I started running for fitness in 2012 and stopped in 2014 just because and was diagnosed a year later. very strange.. I am really forcing myself to stay active as much as possible. I thoroughly enjoy yoga. Now I just need to get myself into a daily walking fitness routine.
I do not want an external lung biopsy either because I too, have heard people say it made things worse. I am being stubborn and do not want to go on supplemental oxygen. I am doing anything and everything I can think of. Have you tried any types of diet changes? If yes, have they helped?
I was taking NAC -N-acetyl Cysteine<span style=”font-family: ‘Myriad Pro’, Helvetica, sans-serif;”> but stopped when I read the results of one study that said NAC and Esbriet shouldn’t be taken together. I am going to discuss with my Dr up in Seattle when I have my new patient consult with him. </span>
I have been tested multiple times for all auto immune disease and continue to have negative test results. I also do not have any other symptoms of any auto immune diseases except Reynauds Syndrome (basically my fingers and toes turn purple and white when I get cold). I think it is very unlikely that my IPF is auto immune related. I have had 2 positive ANA blood tests but the follow up Lupus test is negative, and again I have no other symptoms so…..
Do you cough a lot? Every morning I wake up I cough for a good 5 minutes. My cough is not dry but is “productive” (trying not to be gross). I did have sinus surgery in December and wonder if that is still healing (dr said about 3 months) and possibly I still have some nasal drainage from sleeping that is causing the cough? I really hate couching!
I am so excited for you and your upcoming trip! Please take and share lot’s of pictures! I believe we would be great travel companions.. I love the sea and the sun!
Your appointment is just a couple days before mine. I hope everything goes well for you!
-
So I had this bog long post and it didn’t post and disappeared, so here I go again. 🙂
When I had pneumonia in early 2015 and my doctor said my x-ray looked funny she didn’t give and description or explanation of what or how it looked funny. She just referred me onto Dr. M my local Pulmonary doctor. I am sure the reason she wasn’t more specific was because she did not want to scare me. Isn’t it interesting Charlene that you and I both were diagnosed after a bout of pneumonia and in the spring of 2015. I had my first pneumonia in 1999 when I was 21. It was Staph Pneumonia and i went into respiratory failure and was in the ICU for 7 days. After that I was always susceptible to pneumonia but never had any lasting effects from it. I am curious if perhaps that staph pneumonia was somehow a pre -courser or possibly contributed to my current IPF. I have the medical records from that admission and am taking them to Seattle with me.
In August 2015 I had a bronchoscopy with a biopsy. It wasn’t and actual lung biopsy where they take a sample of lungs through and external approach. This was via the bronchoscopy and they took bronchial and lung samples via the bronchoscopy. I do not want to have a true lung biopsy, especially if it won’t provide any answers or if the answers won’t change the outcome. After the bronchoscopy I was a little dopey until the next day and had a little bit of a sore throat but otherwise I was great.
Yes, my function numbers and sats have my dr. M completely stumped. Im just happy my sats are good and I do not need O2. I hate the stairs and often force myself to take them at the college. It’s 24 steps (yes I have counted) I am always sucking wind and coughing when I get to the top but I can continue to walk and it doesn’t take me too long to get my wind back.
In regards to my completely losing it, mostly I cried. I told my husband and kids. A few friends and my aunt. My husband has shared with other friends. Mostly we are just scared and Im not ready to go. I have so much life to live so while I spent some time “losing it” I am on the upswing and I know attitude is important. I focus on what I do have control of.
I refuse to be reduced to a disease. I am so much more that IPF. IPf just happened to me and I know there is some greater reason why but Im not done living. I haven’t done a whole lot of traveling but we have gone to Las Vegas twice, I have gone on 3 cruises with my aunt. @ were to the Bahamas and key west FL from Florida and one to Mexico from New Orleans. These cruises are celebrity cruises with the band NKOTB. My absolute dream vacation would be a trip to Scotland and Ireland with my husband. I would also love to go to Italy (Amalfi Coast) and to the South Pacific and to stay in one of those huts over the water.
Where have you traveled? What is your story? Do you have IPF? PF? Do you have an autoimmune RA?? How long have you been on O2? Do you take anti fibrotic meds? Please dont feel obligated to answer anything you aren’t comfortable with…
Aishia
-
Charlene,
The way I have been prescribed Esbriet is as follows:
Days 1-7 take 1 pill 3x a day with meals
Days 8-15 take 2 pills 3x day with meals
days 16 forward take 3 pills 3x day with meals
If you miss or are off for 14 days you have to start over.
I do not know anything about Ofev….
-
Janis,
Hello again. Sorry I have been MIA all weekend the weather was too beautiful here in Oregon. I am so sorry you have a cold but I hope you are on the mend now. No Dr. Raghu @ UWMC did not want to do a lung biopsy now because he felt it wasn’t worth the risk. He said based off my history and signs and symptoms he was confident I do not have IPF but rather NSIP. May I ask about you? Are you married, children, age, career, hobbies, loves, hates?? Please do not answer anything you aren’t comfortable with I promise not to be offended. Honestly I just want to know people not just their disease. I mean we are so much more that our lungs, right?
Chat soon
Smiles~
Aishia