|
 |
 |
|
|
Linda HI,
So glad to see a positive attitude of someone with Pulmonary Fibrosis. I had a CT in April 2004 after an infection from a bad cold and it showed a small mass from infection. (I have mild asthma and Mixed Connective Tissue Disease - in remission from diet change.) Then I had a follow-up in Nov.2004 and the mass had decreased after antibiotics BUT it showed that I have lung inflammation and nodules and was told it was pulmonary fibrosis that was not present in the previous CT. I thought about what I did from April to November that was different ans could have caused the fibrosis, and it was the purchase of a country house that definitely has mold (we could smell it and then we found white fluff growing out of one basement wall.) Plus we used the forced-air heating system not knowing that ducts hold mold. I did a lot of cleaning in the house although I did wear a mask and only stayed there a week one time and 2 weeks another time. When I mentioned this to the doctor he said the lung problem is most likely due to exposure and that many hotel cleaning people get scarring of lung tissue in the same way. I am now on Prednisone - 6mg for 3 weeks and then have to take another CT to see if any of the inflammation clears and what damage is still there or if the condition is worsening or the same. My mom died of Pulmonary Fibrosis and Alzheimers but the doctor said mine is not the idiopathic kind and my blood work is fine so it did not come about from being in an inflammed state.
Anyway, I have been on a very good diet - no processed foods, vegetable juice, salads, legumes, nuts, lots of veggies, etc. So I was so defeated when I got the Cat Scan report. To me it was a slow death sentence and I am so anxious over the next Cat Scan. I will not be able to relax until the end of December when I will have it done. BUT your web site helped me feel somewhat positive. You are living a full life, traveling, have pets, etc. I am afraid to travel now for fear I may catch a cold or breathe in some other foreign matter to make my lungs worse. I want to sell the country house because of the mold and fear of further exposure and lung damage. (You might have gotten pulmonary fibrosis from the mold in your house prior to the rennovations.) So thank you for the web site. I needed a boost. I am a writer by profession, married with no children unless you call my squirrel visitors my kids!!) We love nture, esp. upstate N.Y. where the dreaded mold house is. my favorite place is Lake George, NY. Thanks for your upbeat and positive attitude and wishing you all the best on your journey toward staying healthy. :) I found out that Grape Seed extract, sold in capsules are very good for healing scarring so have added that to my supplements. All the best.
-Linda-
Tuesday, November 23, 2004 |
 |
Natasha
My mother is suffering from Polymyositis . In her manifestation of the illness she has pulmonary fibrosis and has now developed drug enduced diabetes because of steroid use. I wish you the best in your fight with this illness, because it is very devastating.
Saturday, November 20, 2004 |
|
Maria
I started IvIg treatment last Sept ( after being diagnosed last March ) and it has given me energy, my last CPK is 537 after my initial infusion. I have been on 40mg pred. for at least 6 months now and my Rheumy is going to start tapering my prednosone. I lost your email address Lenor and I wanted to tell you this good news. I am still on 100 mg Imuran and Methotrex 17.5mg. I am doing so much better, still with residual weakness but I will take it as long as I get to walk and function as close to how I was. As a nurse, I have seen so much diseases that I count my blessings everyday and thank God. I do view life much more different now and take everyday like it's my last day, just like T.McGraw's song - "Live Like You Were Dying". Thank you for your beautiful website, may you continue to be in remission and help us who are afflicted with this condition to keep the hope.
Friday, October 29, 2004 |
|
Patty
My husband has this vile disease called Pulmonary Fibrosis. It's a stealer of breath and life. He is on Intreferon (SP?)to slow the disease down. He was stable for a while but is now slipping some. Was never sick in his life till this struck him down. Insurance companies are so difficult to deal with, especially when they raise the premiums to more than what you earn on SSDisability.You are to be commended for your good attitude..my husband is also in good spirits. Thanks for sharing
Monday, September 13, 2004 |
|
Angie
I am just trying to find out more about this desease. My dad has it and I don't know anything about it. I can't figure out how to get to your home page to get your story. Thank you!!
Sunday, September 12, 2004 |
|
Jennifer Bulardr
Dear Lenor,
This is by far the best website I have seen regarding a patients perspective of pulmonary fibrosis. I think all your ideas for your home, your foods, your alternative therapies are to be commended. I will let others know of your site.
If you would be interested in speaking to others who also have pf you can come to our online support group at
http://health.groups.yahoo.com/group/PFF/
Sincerely,
Jennifer Bulandr
Director Community Relations
Pulmonary Fibrosis Foundation
Chicago, IL
Saturday, September 04, 2004 |
|
Veronica Waldo
I was having one of those days! And remembering our past I wanted to visit you... You have created a healthy environment you and your family, you can only get stronger day by day... I think of you often. Veronica
Thursday, August 26, 2004 |
|
Erica Cox
I am a 39 year old woman from South Dakota. My story is somewhat similar to yours only that I have pulmonary hypertension along with pulmonary fibrosis. It took almost 10 years for me to be diagnosed with polymyositis. In some ways it is a relief to know. I have good days and bad days, but I do not let my diagnosis be who I am. I am an intelligent, caring, mother , daughter and wife who happens to have polymyositis. WE ALL HAVE OUR STUFF! I much enjoyed your website as I live in a rural area and not too many people have what I have, I guess we are special! Thank you for sharing your story with me.
Friday, August 20, 2004 |
|
HELEN HOSFELD
Dear Lenor,
Thank You so much for all the information on this disease. My son George also has this. And has been told he also has the Pulmanary Fibrosis.
I too have lung problems and have been told I have the Pulmanary Fibrosis also.
Such a touching story. I've printed all this information and will give thjis to my doctors.
Thank you,
Helen Hosfeld
kenhelen@tntie.com
Saturday, July 10, 2004 |
|
george heintz
lenor, thank you very much for your homepage. for the longest time I thought I was alone. I read everything you went through and I thought I was reading my own biography.Even down to how they prognosed you, test after test. eliminating everything. I just found out that I also have lung fibrosis. they say it"s progressing very rapidly. Today they just put me on cytoxan.The drs. say that they cannot help me because it is so far but they are trying to stop the progression. thank you very much for this page to let me know that I am not alone. thank you
Tuesday, June 29, 2004 |
|
Maria
Awesome website! I was diagnosed last March with PM after being treated for shoulder tendonitis for 2 months. I got weaker and decided to make another appt with my MD. After I told him about getting short of breath, weakness, fell a couple times, limping, I was admitted with a CPK of 12,600, given 1000mg of IV solumedrol for 3 days and been on the prednisone now for 3 months dose has been tapered to 40 , my last CPK is down to 436. I was so lucky that a Rheumatologist took care of me right away at the hospital because I got agressive treatments. This is all new to me , been active like you, biking with my kids, camping, going to the gym, helth nut who alwasy prepares wholesome food, no drinking or smoking. I also work as a RN. You can imagine how I strated diagnosing myself when I was having all these symptoms that I was afraid to find out what I have. I have Raynaud's as well which was diagnosed last October. I asked my MD to do ANA because I knew then that there are other stuff that goes with Raynauds. I was relieved then to know that the ANA test came back negative so I said " good I only have to deal with this color changes and even asked my MD which medication I would like to take like a calcium channel blocker to help with symptoms. I did not take them anyway just kept my body core warm. After 4 days at the hospital, wnet home on prednisone 60mg for 2 months, bloodwork every month, precancer screening, my Rheuma. wants all his ducks in a row, eye exams because of the plaquenil he started me on, also I'm on methotrexate. I went on medical leave for 3 months and just recenetly went back to work , less hours than before. I look at it this way, God has given me a chance to take a 2nd look at my life. Now I view it as asking myself what my purpose is in life. Before this happened to me, me and my family renewed our commitment to God by putting Him first and being involved in church more. It seems like He prepared us first because this was going to happen. My family ws very loving, supportive and most of all, shared the same belief in trusting God and surrendering everything to Him. I love being a nurse, making a difference and caring for poeple, this time I understand more what my patients go through. I was overwhelmed by the care and kindness of friends and coworkers and realized how blesses I am. I am positve that I will go into remission someday for now I am thankful to be standing and walking.My work has shown me greater challenges other people face with their diseases, like what I always say, 'it could have been worst".
Wednesday, June 23, 2004 |
|
Mark
Hi Lenor,
I will try to be brief but I was diagnosed PM and Pulmonary Fibrosis in March of last year, while in the hospital...almost on a ventilator...with CPK levels of 4000-5000. This insidious disease is non-discriminate. Prior to the onset of this condition, I had NEVER been sick.
I am married with two daughters in college, an IT manager within a huge corporation, a couple of college degrees (numerous professional certifications), ex-college football star, power-lifter (of the 500lb+++ bench-press variety).
I have tried Imuran (dropped platelet count down below 50,000)...had to stop immediately. Tried a combination of Cellcept/Prednisone (45-55 mg) /IVIg which is keeping my stable but no improvement. Tried Rituxan...no good. Just had my 1st infusion of Infliximab(Remicade) last Friday...been feeling somewhat normal for the 1st time in months.
QUESTION: Were you able to get your insurance to cover the Remicade? My insurance states that IF a drug is not FDA approved for a specific illness, they will NOT approve.
ALSO...there is an on-going clinical trail in progress for the treatment of PM/DM utilizing Remicade @
http://www.clinicaltrials.gov/ct/gui/show/NCT00033891?order=17.
You might want to check it out.
Thanks & GOOD LUCK...Mark
Tuesday, May 18, 2004 |
|
Bill and Bonnie Norwood
Lenor you know how much we love both you and Chris and enjoy all the times we have had together and look forward to many more times. This website is beautiful and it fills me with emotion everytime I read it-you are such a strong person and such a close friend. You were practically the first person I meet when I moved to Connecticut over 8 years ago. We love you and can't wait until July 4th 2004.
Sunday, April 25, 2004 |
|
Anita & Ken Bergquist
Dear Lenor,
Ariane sent me your homepage and I must say that you are quite an admirable young lady.
Ken & I wish you all of lifes blessing and sincerely hope and pray that you are one of those that it disappears after 5 years!
I am a big fan of Chris Ladd and think that he sure has picked a great gal!
Best to both of you.
With Love,
Anita & ken
Thursday, April 08, 2004 |
|
Tom Sadler
I thought I had a pretty good idea of most of what you've been going through for the past few years, Lenor. Ha! Not even close! The everyday grace, strength, beauty and humor that you exhibit in the face of all that this nasty disease is throwing your way is both awe inspiring and inspirational. I am truly honored and humbled to be counted among your friends. Affectionately, Tom.
Tuesday, April 06, 2004 |
|
Ingrid & Randy
Lenor,
Randy and I spent the evening reading and learning about what you have been going through. Our hearts go out to you. Your struggle makes us all realize how little we really have to complain about. We look forward to seeing you soon! Love Ingrid and Randy
Monday, March 22, 2004 |
|
Fran
Lenor,
What a great webpage.- your story is engaging and you've got great information, plus is visually so peaceful. More pictures! I think I've known you for what, could it be 10 years now?, and I've seen what you've gone through, but you've been very humble about it in your website. You are very inspirational to us all Miss Lenor!
Fran
Wednesday, March 17, 2004 |
|
Chris
I've watched you pour your heart into this Website and I think you should be very proud of what you've created. I now know why you're so successful in the publishing industry. You have a real, powerful, and inspiring story to tell, and you tell it well. You're message of living each day to it's fullest is good advice to anyone, and is especially true for those who confront serious health issues. I consider myself an extremely lucky man to be sharing my days with you.
Thursday, March 04, 2004 |
|
veronica waldo
you look absolutely fantastic, it has been a long time....The Donald loooks great and your husband to be also!!!!!!we have got to keep in touch....excellent website and a great tribute to yourself... Much love Veronica
Saturday, February 28, 2004 |
|
Jenifer Greene
Patty called and told me about your website. It's truly inspirational. You look fantastic as always, and I'm glad you are feeling so much better. It was great to see Michael, Christie, Jane and Cindy too!! Give them all my hello's. Please call when you get to CA
Tuesday, February 17, 2004 |
|
Ed Greene
Lenor, you are an inspiration and a truly beautiful person. You have the
admiration of everyone that has ever met you, especially me. My love and
best wishes are with you. Keep up
the fight.
XX
Wednesday, February 04, 2004 |
|
Grady Culbreth
What a wonderful web-site! This should inspire everyone to have a heathly outlook on life and to deal with the positives! What a great idea! Your a great friend!
Thursday, January 29, 2004 |
|
Winfried Mueller
Hi Lenor,
best wishes from an old friend in Germany and good luck for your future !
Hope to see you again soon at one of the optical shows somewhere in the world.
Hugs,
Winfried
Thursday, January 29, 2004 |
|
Roger Comora
The site looks incredible! I'm so happy for you guys and extremely proud to have such a wonderful freind who embraces life to it's fullest.
Wednesday, January 28, 2004 |
|
ellen
I finally had the time to sit down and visit your website. Great job, Lenor. I can vouch for your positive attitude and tenacity. I'm so glad you're doing well.
Wednesday, January 28, 2004 |
|
Margie Haggerty
great job Lenor
Monday, January 19, 2004 |
|
Michael Loretta
Your website is inspirational. It seems like people who have to deal with medical issues, which are not easily diagnosed, have to complete the journey to help themselves and others. As hard as the journey was, you now have a vehicle to communicate the results of your research and experiences. I hope your website helps others cope, heal, and succeed in dealing with their health issues.
Friday, January 16, 2004 |
|
Christie
Your site is so beautiful and peaceful. Lots of great information. I especially like all the books you have listed. Can't believe you've read them all. Wow.
Hoping your health continues to improve.
Christie
Friday, January 09, 2004 |
|
Kris seitz
WOW!!! Ive enjoyed reading all about
you. thanks for taking the time to write
it all. i was diagnosed with SSc in 96
and have had all the same problems as you.im 36 now and i wanted you to know
that after being treated with cytoxan
therapy (even though it really sucked)
i honestly have to say i believe it has stopped the progression of my lung fibrosis. every pft test ive had has stayed the same or even improved somewhat. so good luck to you and remember theres always hope when you look at things optimistically!!!!
kris
Friday, January 09, 2004 |
|
Don
The web sight looks great. Looking forward checking out improvements on the house. I will see you soon.
Friday, January 02, 2004 |
|
Dominic
This site rocks! Keep posting those dog shots... I love them.
dom |
|
| |
|
|
|
|
