Now, about the ILD meeting yesterday: It was fantastic. I was exhausted when I got home and didn’t write up the meeting notes. I will blog them as soon as possible. Hang in there with me.
While I was at the hospital complex yesterday, I was a bit early for the meeting. After having an iced tea in the cafeteria, I was walking down a flight of stairs in the stairwell to the main floor when I bumped into the co-head of the Interstitial Lung Disease Clinic, Dr. L. K. She was shocked to see me. At last year’s holiday luncheon for all the ILD doctors, staff and patients, I told her that I wanted to lose weight. So, she said, “Well, you told me you were going to do it!”
She asked very specific questions and said that she will share the information about the diet with other patients they treat in the ILD Clinic. So, I have the Liver Clinic, The Lung Transplant Clinic and now the ILD Clinic all referring patients to Mr. B and Dr. M-J at the Weight Management Clinic. I should get a percentage!
I am excited and nervous to see Dr. K tomorrow. She is going to be surprised to see the additional weight loss and the remarkable change regarding my supplemental oxygen in rehab. But, I am beginning to sneeze a lot and went into my healing mode last night: Antihistamine, Vick's Vapor Rub on my feet and socks. Add to that my face cream and the oxygen cannula, I am both lovely and smelly! Ha!
9 comments:
hi. i love your site. my husband was diagnosed this spring. Im surprised he is still alive. But he has greatly improved. We are still ruling things out. His open lung biopsy resulted NSIP. Now there is indication that its Gerd related. He has lost 25 lbs this summer and I know its helped. After finding your site in the Spring you shared info about ild clinic. Well we have one in Cincinnati and we live 50 miles from there. They have saved his life. Thank you. He is now supposed to begin prednisone and cellcept and he is afraid. From your post you mentioned vicks and your cannula. Do you know you cant put petrol products near your O2? Id love if I could ask you questions on occasion. joanne
Joanne, thanks so much. I use the Vicks on the bottom of my feet then cover them in socks. I swear it works. Read about it in Good Housekeeping. Usually stops a cold in its tracks f I do it for two nights the moment I feel one coming on.
I do know about NSiP from our ILD meetings. Make sure your husband is working out and growing some muscles. His quality of life will be so much better. Pulmonary Rehab is the answer. Congrats on his weight loss. That is a big deal.
Please tell your husband that prednisone is a life saver but a difficult drug. It along with Cellcept will even out his episodes and he will be more stable. It is worth it. Really.
A reminder: Prednisone makes your blood sugars go up. Watch his carbs, fruit, yogurt and sweets and exercise and hopefully, he can keep it at bay. I have.
If you wish, send me your e-maill address so we can talk via e-mail.
My best to you. I think a diagnosis as your husband's is often hardest on the spouse. It is a bit helpless feeling. Hang it there. Enjoy your time together. Laugh a lot.
Hope to hear from you.
Hi again. Thanks so much. You and your blog have given me so much direction in his care needs. I feel God directed me to you in our darkest days this summer as because of you I found the University of Cincinnati ILD center. Only 5 in the country. I have numerous questions and didnt want to litter up your beautiful blog. email me at jdietz@woh.rr.com.
the anonymous response is Joanne. didnt want to be too confusing. my email is above and I look forward to hearing from you. ive got numerous questions for you. you and my husbands situation is so similar.
Hi Joanne, I tried the e-mail jdietz@woh.rr.com. and it would not go through.
ohh I'm sorry. no dot after com.
woh.rr.com
my I pad puts a dot on everything. ugh.
please try me again. thanks.
Joanne, Still can't get it through. My server won't verify the address of:
jdietz@woh.rr.com
Do I have it right?
that is weird. i don't know what to do. i'm getting mail and have even sent myself a test message tonight. I'm sorry to be a bother.
Got it! Check your e-mail.
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