Christie Patient
Forum Replies Created
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Thanks @johnweitner ! I have been so worried about being an asymptomatic carrier, so I do feel better about getting it early for that reason, too. I have also been sooo careful all year, but even the most careful people can still be exposed. Glad to see you were able to get your vaccines done as well. Charlene and I were just talking about how hard it’s been to get the ball rolling in Canada.
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@vishal I am so sorry for your loss. Thank you for sharing your experience here, as it will certainly be a help and comfort to others. I really admire you taking the time to do that so soon after your loss. You have a tremendous heart. I understand if we won’t see you around here much from here, but thank you for being a part of this community. Wishing you comfort.
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Hey @marianne, oximeters can be pretty finicky, especially if you aren’t sitting still, or are cold. I used to be an MA at a pain clinic and we had a patient that regularly got flagged for pulmonary/cardiac concerns because they were severely underweight and could never get warm. Their O2 readings were perfect once we could warm up their hands but they would read in the high 60s sometimes just because of the poor circulation to the fingers. Just thought I would mention it since it is winter.. I don’t know where you live, but if you’re checking O2 while out in the cold or right after coming in from a walk, that might be a factor in wild readings.
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Sort of unrelated, but I just got off the phone with my mom who just came from her two-year post-transplant appointments. She has had increased nasal congestion and some coughing (not like the PF cough though thankfully) over the past few months. CT scans showed some inflammation in her lungs and she has a high Eosinophil count right now which suggests allergies. I will have to pass on some of these suggestions to her to see if they help!
She is also investing in some air purifiers from Blueair (on sale right now!) per the recommendation of her doc. Might be worth looking into for those of you also suffering from allergies and congestion.
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Hi Iris, I have never used a cannula myself but have found Aquaphor to be a great protectant against dry crusty nose when I visit my arid hometown coming from the humid tropics where I now live. I’m not sure what doctors’ thoughts would be on using a thick ointment like that paired with a cannula but it might be worth asking. In my opinion, it works much better than Vasoline or Mentholatum because it is thicker.. doesn’t just liquefy and run out. Also, I’m not sure what type of nasal rinses he is doing, but a Neti pot is a great solution for post-nasal drip, allergies, sinus infections, etc. It might be helpful and it only takes 5 minutes or so. Heat up distilled water in the microwave, put it in the pot with some medical-grade salt and tada!
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Hi Jill, generally your first contact should be a referral from your pulmonologist (or cardiologist or PCM). If you haven’t heard from someone within several weeks, it is worth calling your referring physician’s office to check on the status of the referral. You can ask if the transplant center has a referral coordinator or patient advocate that might help expedite the process on the receiving end.
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@mhkhan93 & @charlene-marshall Yes that’s true. Peer support is really important, and I agree that finding good sources with accurate information can be really helpful to understand what’s going on. The trick, as Charlene mentioned, is knowing how to parse out what’s accurate, up-to-date, and relevant to you, which can be a challenge. But I also must say that wading through the depths of the internet without a diagnosis could be really treacherous and anxiety-inducing. It certainly would be (read: has been) for me in the past, both with my own health and the health of those I love. But we are all different of course, and other folks may be better equipped to handle that than I am 🙂
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@casey Karen, I totally get that. I can see how it could make you feel like something is wrong with you or that you are doing something wrong. Both of those feelings are hard to handle when you already are struggling! But I do agree that doing sort of real-life things that exercise your body and lungs is good. And practicing things like a harmonica, singing, or other wind instruments could be both helpful and fulfilling in other ways.
As far as life expectancy, it’s just such a tricky thing to pin down. When the ILD team started looking at my mom’s medical records, they could see evidence of early ILD on chest Xrays from 2009. She had a brief episode of Afib back then, but she wasn’t really symptomatic with ILD until maybe 2013/14? She wasn’t diagnosed with IPF until July of 2019, and by December of that year she was on her way out the door (but still here, thank you lung transplant!!). It’s hard for me to say whether a prognosis like that is helpful or harmful with this disease since every case seems to be so different, and diagnosis can be difficult to achieve early on.
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@connib Very cool! I do find it to be really centering, though kind of a little silly feeling at first. I’m all about approaching things with a blend of Eastern medicine and Western. Everything is connected (physically, energetically, etc) and I think sometimes doctors forget that when they get so deep into their specialty.
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@connib Conni, thanks for sharing about Che Hung. I wonder, do you know if it is similar to Qi Gong? I have done that before and found it very helpful for anxiety and as a sort of systemic reset, energetically speaking. Breathing is a big component of Qi Gong. I will have to give Che Hung a try!
I am a caregiver so I don’t have personal experience with how breathing exercises feel on PF lungs, but I am interested in hearing how often people do their breathing exercises and how much benefit they feel from them.
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@casey Karen, I could definitely see that causing anxiety. My mom struggled with that too, and when I was trying to do breathing exercises with her she would get frustrated (self-conscious, perhaps, but definitely scared about her waning ability). I think the exercises that distract your mind a bit while also working your lungs are really great. Today is the first time I’ve heard about the harmonica thing, but I think that is genius! Singing too!
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@4sailfish Don, I LOVE THAT! That’s such a good idea, and a unique way to exercise the lungs! It would be a good distraction too, I imagine to take up a new hobby that you are learning while also helping your breathing. Thank you for sharing!
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Thanks for your detailed and excellent response @jonpoland !!
Donna, you are more than welcome here and as you can see there are a lot of compassionate and knowledgeable folks here. I agree that it sounds like you shouldn’t worry too much (based on your doctor’s 6 month check-up and lack of definitive terminology). As someone who suffers with an anxiety disorder, I know that it’s silly to tell someone not to worry, so I apologize, but based on what you’ve told us, I don’t think you have reason to panic.
I’ll echo what your doctor and what Jon said, and urge you NOT to look on the internet. It is an act of self-sabotage that will cause you heaps of unnecessary suffering. If anything, you have found a great community here and I know people would be happy to offer you advice based on their actual experiences, not just information (or misinformation) that is on the internet elsewhere and may not apply to you.
And I know that doctors can sometimes seem like they are too busy for you, but it is your right to ask them for more information/clarification and help. It’s your health and your life, so maybe just give them a call and say “hey, I am really confused and anxious about how my appointment went, would you mind explaining things to me as if you were explaining them to a child? I want to understand what is happening to me so that I feel less worried.”
Christie
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Hi @nancy-lynch-borlo, She Was just barely 69 when she had her transplant. The “age” qualification for transplant listing is kind of a misnomer. It actually has very little to do with your chronological age, and more to do with your physiological age, ie the overall health of your body. Lots of factors can prematurely age you (smoking, drinking, sedentary lifestyle, etc), and on the contrary, lots of factors keep your body young! An active lifestyle and healthy diet, not smoking, etc. Part of why there are so many tests to get on the list is to determine if someone is healthy enough to handle surgery, accept the transplanted lungs, and thrive afterward. It’s definitely worth pursuing and asking your doctor about, even if you are older. ?
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Hey @Carlo that’s not bad at all! 2.8 mph is a really healthy pace. 🙂 And I think if you tracked your steps throughout the whole day (fitbit, or pedometer) you would be surprised at how many you take outside of dedicated exercise time. That said, I also think it’s great that you’re committed to 40 minutes 3 times per week. Keep up the good work!
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Hi Kathleen, my mom definitely had some of that with her IPF. She lives in a cold arid place and definitely had that with cold air more than warm. IPF makes the lungs brittle and fragile so I think it makes sense if you don’t have warm air making them more pliable, and humidity to keep them lubricated, to experience some pain. Definitely worth mentioning this symptom to your doctors though just be to sure it isn’t something else.