Journal

Thanks for responding - I've been hoping to have someone to respond. I've been on prednisone for about a year for fibrosis. My fibrosis was caused by a
cancer drug (I also had prostate cancer and just completed radiation treatments) and prednisone seems to have stopped the progression. My doctor did a biopsy of my lungs a year ago and we have hope that the disease will not get any worse. However, the prednisone has increased my blood sugar by about 100 points. Up until the pred. I could control the sugar with
metformin pills. Now I have to take injections of insulin to prevent damage.

Sorry to go on about my situations but it seems that when you get older you
need more courage and strength to battle the body's breaking down.

Best wishes for your situation. I'm glad to hear you're still exercising! I think
exercise is probably the best thing we can do both for our mental health as well as our physical health.

I just reread your last journal and feel like we have a lot in common. I don't all my thoughts with my wife either but she would like me to. I think some of my thoughts would cause her more concern than if necessary. I too have have been exposed to birds and their droppings. When I was a small lad my grandfather raised chickens and I helped him take care of them. That included cleaning out the hen house occasionally. Consequently I tested positive for histoplasmosis (a disease that can leave scars on the retinas of your eyes and other things) - so maybe that is what caused scarring in our lungs after all those years. I'll be sure to ask my dr. I'm glad to hear you're out and about - going to concerts and things. Tomorrow night my wife and I are going to dinner and a play with friends. When I don't do anything strenuous I don't need oxygen so our friends don't know I have it. We always stop at a Dairy Queen after the play and get a hot fudge sundae. We have been going to summer theatre plays for about ten years and really enjoy them. The last one was Cotton Patch Gospel. It about how Jesus grew up and then did his thing. However, it was written for current times and had very good hill billy music. With the modern day language it really made you think. Today I played tennis (with oxygen) and then had a high school student help spread mulch. He is going in the army in August and is a really nice kid. Let me know what's happening with you and yours.

Best wishes for a good summer with lots of friends and family activities.

Sawdusty ("Sawdust" was my father's nickname)

Hello again. I've been on vacation since last Friday. My wife, my eldest son and his two sons (10 and 12), and my step-daughter and her to sons -
also 10 and 12) have been having a great time! We are in central Virgina near Harrisonburg at a resort called Massanutten. It is in the mountains and is quite beautiful. Right now they are all out on the river on tubes. I didn't go because I can't get in the sun due to the cancer drugs I'm taking.
It was a good thing I didn't go because I had to use the "facilities" on a very short notice. The radiation treatment has left me with not very much control over those functions. I haven't needed oxygen here yet because I haven't participated in activities requiring a lot of energy. I have two tanks of Ox. that would give me 6 hrs. of support. Have you asked your dr. for portable Ox. tanks. It sure makes my walks easier and a lot more comfort-
able. Right now I'm watching the Wembledon tennis tournament and enjoying some quiet time. Yesterday my wife celebrated her 70th birthday.
She said it was her most memorable birthday. Her grandsons fixed her breakfast and served it in bed (without spilling anything!). Her daughter had paper streamers everywhere along with balloons and birthday banners. Her grandsons also prepared our dinner and sang Happy Birthday. After dinner "grammy" elected to play a dice game and then dominos called "chicken foot." We laughed long and hard all evening.
It truly was a great family night. My wife has stated that she didn't want a party. However, since we are on vacation I decided to have a surprise party for her on July 18. So far she doesn't suspect anything! There will be about 50 of her famil and friends there. I'll keep you informed of the progress. I am so thankful for everyone's support and feel fortunate to have a large family and circle of friends. I know you must feel the same way. I bet you're looking forward to your 44th anniversary celebration. Let me know what's being planned. Best wishes for a good summer and your 66th celebration also.
r

Hi - Long time no hear and no write. How's the deck coming along? Hope it's finished by now. A lot has happened since I last wrote. After our week at Massanutten we came home and had our N. Carolina crew accompany us. We thought we would only have the grandsons but dad decided to work from our house - so they were here for a week. Last week I went to see a surgeon about my non-functioning gall bladder. He agreed with the previous diagnosis and recommendations to remove it. When he asked when I would like it out I said "How about tomorrow?" He said OK if we can schedule it. His scheduler said the earliest would be Tuesday at 7:30am. (That was July 14 of this week) So I had my gall bladder removed! See the journal entry at my site and read about the operation. The operation was like nothing I ever experienced. Here it is two days later and I have no pain and have my energy back but I can't play tennis nor drive the car. I even had the surgeon take a picture of the gall bladder before he removed it. He also autographed it when he visited me after the operation. Enough about me - what's happening with you? Your friend

Carl p.s. My email address is carlyboy@wans.net if you like'd to send a message that way. It would be more private.

Hope you had a great dinner. I also know about kids and computers - my grandkids do the same thing when they are here. I'm felling kinda' lucky with no gall bladder complications and only needing oxygen on exertion. My shortness of breath still is a problem and I have to remember to go at a slower pace or stop and wait. That even happens when I'm wearing the tank although I seem to recover quicker. I think the supplement I'm taking is having a positive effect. I don't hear myself wheezing as much. I'm having a surprise birthday party for my wife tomorrow. She thinks we are celebrating the birthday of my son who just turned 50. There will be about 40 good friends and family there. It will be at my other son's house who will be 49 in November. I have four sons and feel lucky that they are in good health. My son in North Carolina has finally told his wife that she has to go into a health facility for 30 days to overcome her addiction to alcohol. Such a terrible thing!! They have two sons who are asking "What's wrong with Mom?" The facility uses the 12 step program and has a 67% success rate. I wish we could find doctors who could cure 67% of patients like us. I hate this disease too!! Just when you try to do something you run out of energy and have to sit down. I find that it is best for me to take deep breaths before I start doing anything and I last a little longer before I have to stop. However, I'm determined to not let it change my life too much. As soon as I can get over this g.b. thing I plan to begin an exercise program while wearing oxygen. I hope to really push myself to see if it helps my breathing and stamina. What are you doing for exercise? Sometimes when I monitor my pulse it gets up to around 140 but goes down quickly.
The dr. said that it was OK. Hey, it's 11:30 and time to go to bed. Talk to you tomorrow. Take care and keep up your spirits.

Hi again,
Have been doing a lot of moving around. Went to granddaughter's surprise birthday party for her husband (his 30th). Drove about 100 miles one way and saw all their friends and our relatives. It started to rain and we all went inside. Their were about 10 kids there about 3 months to 4 yrs old - can you imagine the confusion and noise. My wife and I left shortly after that. It's no wonder that we all have kids at a young age!! I also now know why that group all drink a lot.

Hi again,
Have been doing a lot of moving around. Went to granddaughter's surprise birthday party for her husband (his 30th). Drove about 100 miles one way and saw all their friends and our relatives. It started to rain and we all went inside. Their were about 10 kids there about 3 months to 4 yrs old - can you imagine the confusion and noise. My wife and I left shortly after that. It's no wonder that we all have kids at a young age!! I also now know why that group all drink a lot.

Didn't mean to end the above so soon. Have been walking each morning at a brisk pace for about a half-mile without oxygen. It takes about 11 minutes and my ox. level goes down around 80% and pulse is over 135. After two minutes the o level is back up over 90% and pulse is around 100. I'm trying to get the old body to get used to less oxygen. It may take a while but I'm determined to try to get back to normal or at least reduce the time I have to spend on oxygen. I played tennis today for an hour and a half and was on oxygen. The temp was 90degrees (F) and humidity to match. When I got home I had to take a long nap. It seems to me that the food supplement Neprinol is helping. It seems give me more energy and my breathing is somewhat better. I go in for another C.T. of the lungs next month so I'll find out then. If there is no improvement, I'm going to Johns Hopkins Hospital for another opinion and perhaps better treatment. I hope you are doing better. Talk to you later....

Hi again, I hope you had a great weekend at your reunion. I'd like to hear
about it. My weekend was busy. I painted some doors on Friday and was
completely wiped out, even with oxygen. I couldn't do anything except to watch tv and go to bed. Saturday I continued to be too tired to do anything.
Saturday we went to our daughter's house to dog sit while she went to
a high school reunion. I couldn't sleep in our bedroom - the dogs were
breathing too hard and our dog, a 65 lb. Bernese Mt. Dog, shook the bed with her heavy breathing. So I went downstairs and slept on the couch. That was at 12:30am and never went to sleep until after the dogs were sent outside at around 2:48am. At 4:30 our daughter's dog put his head on my should and breathed in my face - he needed to go outside. He was also thirsty and drank a bunch of water. Again, at 6:30am he needed to go again -also my dog. I didn't get much sleep but didn't feel too bad. Sunday evening we had our neighbors and my recently divorved son come to our house for a picnic. Each brought food. The new neighbor across the street also recently divorced and the same age of our son was invited so my son could become acquainted with her. Who knows? Today I painted some doors and part of the ceiling that had a watermark on it. I painted a total of 2 hours, I got whoozy in the head and came home for a 3 hr. break and then went back to finish what I started. Normally, I could have finished about 6 or 7 doors and frames but today I could only do 2. I hate this disease!!!! Our friends are great about my affliction and constantly tell me to take my time. I haven't learned to do that yet. I guess it is going to be a long learning process. Tomorrow I play tennis, with oxygen and am looking forward to that. It still hurts being unable to breathe and having to stop to get my breath. Hope this is not to boring - I'd rather tell you about these things than write in my journal. I'm glad to hear you are communicating with other people on our support group. It seems like everyone with our disease has a different understanding of it and need our support. Looking forward to your reply. Keep up the good fight!

Thought I'd try to revise our journal responses - I enjoy them so much. Since I have be "out" for a while I reread your journal. Earlier you mentioned that your son was going to visit from China. Did that ever happen and how was the visit? I hope you had a good visit. As I read your responses to other people's questions I am impressed with your concern for them and your sincerity in your responses. I suspect you have been a kind and caring person throughout your life and I am glad to be your friend.
I believe that people who lead good lives are ok within themselves and are able to support other people like you have. Keep it up because the people in our group need compassionate and caring "friends" to keep going.
On behalf of the others I thank you for your kind and caring comments.
Keep up the good support

Hi, I'm a 72 yr old man in Frederick, Md. who has been diagnosed with pul.
fibrosis and also am struggling with this crazy disease. I'd like to communicate with you regarding symptoms, treatments, mental health, etc.
How about it?

I was diagnosed just a year ago. I know what you're going through. I'd like
to be your friend. Perhaps we can be support for each other. What do you
think? Let me know.

hi oxfordns how you doing,i know its not a fun disease,but you have to stay possitive,i know its hard and every day things can be difficult,but you sound like you have a loving family and thats good.