Because my rehab class is on Tuesdays and Thursdays and I have my first Liver Clinic appointment on Thursday, I didn’t go to the ILD meeting. If there was going to be a speaker, I would have attended. I didn’t want to miss two rehab classes in a week. A possible slippery slope.
The February meeting will feature Dr. Eunice Kim – whom we have met before – who will talk about Pulmonary Function Tests (PFTs) as to how they pertain to ILDs. We are to bring our PFTs so we can talk about what our specific numbers mean. That should be an interesting meeting!
Weight Update: I was weighed at the rehab class yesterday and have lost 6 pounds in eight days. Mostly water, I'm sure. It is as the nutritionist predicted. It is still shocking to me. It has been so impossible to lose and suddenly BAMM! Six pounds. Gone. Done. Lovely. Now I want to push to see how much I can lose before my next appointment with him at the end of the month.
2 comments:
Hi-
I just happened upon your blog. I too have ILD. I am 33 and have had it for over 4 yrs. I was not told it's a death sentence. I've seen experts in Seattle and Johns Hopkins in Baltimore. My lungs are bad but it's not a death sentence. I don't doubt the dr. you mentioned is very intelligent. But every dr. can't know everything. Maybe you should get second opinions. At least in the matter of a death sentence. Do you take N-A-C? And another thing I have myositis. Has this ever been considered in your case? It's hard to diagnose and quite rare. They found my ILD and then discovered that. My liver enzymes were high. I saw a heptalogist for that. It turns out that there is really nothing wrong with my liver-it's part of the myositis. Thankfully I managed to avoid a liver biopsy. But since you have been on Prednisone for so long I think figuring out your problems would be next to impossible. You would need an expert in myositis. They did a muscle biopsy on me but it showed nothing. Because of my ILD I had been on Prednisone. My current meds are Prednisone (20 mg), Prograf (2 mg), N-A-C 600 mg, Vitamin D 2000 iu and Gabapentin (400 mg). I also take 4 mg of generic Chlor-Trimeton at night. My pulmonologist thinks that helps keep the lungs clear.
Kate
Kate, Thanks for finding me. Such good information. I love the suggestion of Chlor-Trimeton at night. I am dealing with re-occuring colds. Maybe this will help. Also, thanks for the information about myositis. My liver function tests were really good but they are keeping an eye on them.
Have you heard about Cellcept along with the prednisone is being used to stabilize ILDs? Has worked for me but added several more drugs to the list. Been on it for three years.
Which ILD do you have and where were you diagnosed?
Thanks again, Kate!
Post a Comment