New Diagnosis of IPFPosted by dee-merrill on May 11, 2023 at 8:00 am
This came on after inflammation due to a 7 hour surgery after 2 weeks in ICU and 5 weeks in a LTAC it took. Month to schedule with a pulmonologist who ordered a CT at the end of May. Their office called me last Friday night and told me they were referring me to the U of U as i had IPF. They finally faxed the referral and I gave intake the places where they could find my records and I was told probably can’t get an appointment till August. I’m glad to see the stories of longevity but am so frustrated with the medical world and I’m an RN. Anyone else have trouble getting to get your program started? I saw a guy named Mike who kept getting written off as anxious that sucks! I am 64 and turn 65 in July and I review hospice records at home and can maintain 02 for a hour at 88 to 93 but if I move or talk goes as low as 78 with a 130 Hr. The records have always made me cry but now brain fog and difficulty with vision make it worse any ideas would be appreciated greatly
MemberMay 11, 2023 at 2:39 pm
02 for a hour at 88 to 93 but if I move or talk goes as low as 78 with a 130 Hr.
that is one of your biggest errors. Your stat should never ever go lower than 92. You obviously need 02 all the time. With those numbers you’re putting yourself in a compromised situation. Fainting, brain cels being destroyed and possible organ failure. Not good and I would contact your pulmonologist immediately and get things straightened out.
MemberMay 12, 2023 at 1:14 am
Dee, so sorry to hear about your DX and complications with treatment. I was diagnosed in April , but only after a four month wait for an appointment with pulmonologist. I had participated in a study at Vanderbilt University since 2009, after loosing 3 siblings to IPF. Ct scan showed minimal scarring in October 2022. I am still waiting on help with medication ( only two meds FDA approved) financially that only slows the progression, no reversal of scarring with these medications are noted. I’m not on oxygen right now , in the Drs office my o2 was 93. My Dr seems very attentive in my treatment and as only recommended I start with one of the two medications approved by the FDA. However, started seeing my pulmonologist in February, series of test , a biopsy , and confirmation of DX in the middle of April. Liver function test three weeks ago , came back normal, so I can take one of the two drugs approved for treatment. I ‘m with the others , you definitely need to be assertive and find away to get on oxygen ASAP through the pulmonologist that made your DX. I’ve called mine once a week since liver function test , trying to get started on medication, no luck getting a call back , very frustrating. They’re waiting on the organization to get with me about financial funding . I’m very close to reaching back out to a Dr at Vanderbilt University, who followed me in the study. I’ve been drinking green tea , read about a study that showed significant changes in CT scans after a very short period of use. I might look into the chubolic acid mentioned as well. Good Luck with finding care quickly, keep at them , I’ll be reaching out to my pulmonologist again on Monday. Waiting for care is hard, I don’t want to become a thorn in their side , but I don’t want to be forgotten either.
MemberMay 11, 2023 at 3:07 pm
Dee,Let me start with this. I have found that there are NO doctors who really give a shit about us. Most of them are all now members of a huge corporation or something close that. I have had IPF for a decade now and it was discovered by a Pulmonologist that was probably 60 plus and was not a member of a corporation. He was a kinda doctor that was from your old home town and cared for the patient and not the big bucks. I was fortunate. I am on oxygen just about full time and like you, when i move my numbers drop a lot. You rally need to stay on oxygen as much as you need to. It is NOT habit forming or addictive. Like Mark just said, you really should be above 90 as much as you can. My suggestion is that you try to find a doc that is not affiliated with the big pharma, but does have some time working with IPF patients. BIG TASK! Good luck and hope that i have helped a bit. Charles Gerson Cambria California
MemberMay 11, 2023 at 4:00 pm
i am sorry for your diagnosis. My mom survived 10 years from dx and passed away at the age of 84. I am 65 and I was dx three years ago. The University of Alabama did a study on mice. They gave them chubolic acid and it reversed the scarring. I have taken the powder form called Haritaki. I get it on Amazon. My CT’s have noted moderate scarring three times. The last scan done this past March showed minimal scarring. I’m a nurse NOT a Dr. I encourage you to research this and talk with your Dr about taking it. I truly believe this is working to reverse the scarring I had. Plus I feel so much better my lung function test was a breeze last month with no SOB or coughing as with previous test. I wish you well.
MemberMay 11, 2023 at 5:18 pm
Kim, What brand of Haritaki did you purchase from Amazon and how much do you take per day?
I’ve read that different brands of supplements wildly differ in their stated ingredients as they are not tested by any government agency.
MemberMay 11, 2023 at 7:44 pm
It’s called Cona Nature on Amazon
I take two capsules The label says take three. I started with two a day and seems to be working well for me.
MemberMay 15, 2023 at 9:00 am
Hi Kim. I couldn’t find the U of Alabama paper you mentioned. Could you please give me a link?
MemberMay 11, 2023 at 8:58 pm
Unfortunately Dee, as the others have stated, it’s really hard to find a doctor that’s going to first, validate the diagnosis, second, treat you with dignity and respect and third, really care about you! I got to pulmonologist number three and he turned out to be the guy I want on my team. I was lucky. You can’t give up, especially with your stats. Don’t give up and don’t let them wear you down! Get out your phone and a list of pulmonologist and go down the list. Get second opinions until you find your doctor but do it quick. I think we all agree, your stats are troublesome and you need attention and oxygen now. You have to be a warrior🫁. God bless…🙏
MemberMay 12, 2023 at 5:57 pm
I am not sure where you are located and you mentioned U of U. I am going to guess that Univ of Utah which is a part of the Pulmonary Fibrosis Foundation Care Center Network. You have a local pulmonologist who has referred you to Univ of Utah. Can I suggest you contact that local pulmonologist’s office again for two reasons:
– Your local pulmonologist can prescribe oxygen. If you share the numbers you are experiencing for oxygen saturation they should be more than willing to test you for oxygen needs.
– That pulmonologist can contact the care center at U of U to advocate for an earlier appointment.
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