What is VATS? I read the name but what is actually done in surgery? This is first I heard of it.

I am the same as you. Sitting my O2 is mid to high 90s. With activity it drops to 86-90. This has not changed in a year. I use O2 at night with CPAP. This past Tuesday had an semi-annaul CT scan and breathing test. Breathing was five percent better. CT scan was the same. Thus, not much change in 14 months. I only use O2 when I… Read more

Charlene, I am using the liquid. I brought the 500 1oz bottle. I am experimenting trying to find out how many drops I should use and how often. I am currently on 4 drops three times a day. I will certainly keep you posted as things develop.

You can buy it from Hempworx for $69 to $99 or Amazon for from $16-30. Each manufacturer will say their’s is best, pure, hihest quality, etc. All have wonderful testimonials. How do you know? I started using it two weeks ago (Hempworx $69), but so far can’t tellnif it is working. I go for CT scan in two weeks. That should tell me… Read more

Hey,

You are a pretty good teacher!   I got it done this time, both background and picture.

Thanks.

My primary care physician put me on D3 2000 iu and this week after seeing my last blood test. Pulomonist have not mentioned it. I have an appointment on March 5th with them for a breathing test and VT scan. Rarely bothered with CO2 problem. I am 17 months into diagnosis. The post on dying was helpful. How do you post a picture. Can’t… Read more

Hi Charlene,
I’m having a lot of trouble eating. I often feel weak, and know I need to eat,but just can’t get the foods down. Many have no taste or are bland.
I am drinking vitamin shakes and also a protien drinks. The protein drink comes in a powder and I get from the GNC. It is mixed with water and tastes pretty good. … Read more

Charene my doctor’s are great, but they work for the VA. I have asked but they give vague answers. Not sure they don,t know or staying with the party (VA) line. One encouraged me to submit a claim, but do not have enough info yet. I know it will be hard to establish a connection.

Charlene,
Well said! I too have times like this. Plus, poeple are aways asking how I are which is hard to answer. If I say “okay”, well I am lieing. I can enjoy just being alone with my thoughts. Helps me recoperate.

Thanks Bill. IPF is just one of several health problems I have that I believe was related to agent orange because of no family or work related history. Hope they aren’t you claim.

Bill,
I too was in Vietnam (66-67) and exposed to agent orange and have IPF. Stayed in VA hospital 16 days, when they diagnosed it six months ago. They do tests but no treatment so far. I would deeply appreciate any information on the connection with this and IPF. IPF is a rare disease and cannot understand how I got it. I will gladly… Read more

My caregiver is my wife Carolyn. She is wonderful. Married 57 years. It has been hard on her having to wait on me, but as aways is` meeting the challenge. It bothers me that I am a burden to her and this has changed her life as well as mine. She is my chauffeur, manages my oxygen tanks and appointments. If I mention it to her, she tells… Read more

Charlene,
Sorry be so slow to respond. Before IPF I always like to sleep in cool room. Now it is required. I cannot sleep in a warm room. My dear wife likes warmer. I turn the AC up car also. I have noticed it getting worse. Having to make lots of adjustments in my life which is no fun….

I too cannot tolerate heat. I cannot sleep in warm room. I have to keep the room around 68 degrees which is too cool for my wife. She sleeps in another room. I also have two fans running at night. I have three wireless switches by the bed to control the fans and the light. Works great. With the AC and fans I do well.

I am always learning. I learned a all portable conconcentrators do not work with my CPAP. You need one the works on “conserve” and “continuous.” The ones advertised on TV are only conserve and will not work with CPAP. Other than that they are great. The will work on house current (AC) and a auto cigarette outlet on car (DC) plus on… Read more

Hi Charline,
I purchased both from Amazon. I chose
The ones with the best reviews. You might like others but am taking Zazzee grade seed extract (400mg ) and ground flax seed made by Viva (organic). The flax seed oil is made by Optimum (1000 mg).

This is follow up on what I posted esriler today. Dr. called and said my CT scan showed no change since December. That is seven months of no additional scaring!!
By the way. both grape seed extract and flaw seed oil are reported as good for IPF. I an a little encouraged.
I asked my pulomonologist about metformin. She said she… Read more

Charlene,
Thank you for you work on this forum. As to my use of grape seed and flax seed extract, I think I feel some better. I feel I have a little more energy and mind is clearer. I have not been taking this long but so far all is positive. I will post again in a few weeks and let you all know if it is really helping. Both are… Read more

Steve,

Would you post the herbs you mentioned? Certain would like to know. I am taking grape seed and fax seed extract. Hard to know but I think I am better.
Have you heard of anyone getting over the shortness of breath with activity?
Hope you are doing well.

The one thing that baffles me my oxygen levels.    Sleeping witoutw 02 it is 97-98.  Setting watching TV or writing (I am an author) it is 93-96.   Yet, I stand up walk to kitchen or try to go to the yard….boom … it goes to. 85-89 and I begin to haslte.   I normaly  feel good with activity, but when I try to do something it stops me.   Hey,… Read more

I live in Utah (not Mormon).  Travel 85 miles to SLC VA .   IPF since Feb.  No group support.   On oxygen part of time and with any activity.  I  was taking prednizone but off now for 45 days.  Withdrawal  was roough. Not taking any other meds.   Hope you get along okay.

 

 

 

Carloe,

Yes.  They did a lot of tests and the prescribed an antibiotic.  In a little over two and a half weeks it cleared up.   Glad I went.  It was mildly painfull.  I think I caught it early.   I wish you well and pray you will get over this soon.

Go to the ER or pulmonist right away.  Nothing will be accompllish by waiting.  You do not want you lungs to get worse.   I hate going to doctors, but they can help.   I have had to go to the ER twice in past two months.   Glad i did.  I had prayer for you this morning.

I have a cough only occasionally and drink hot coffee.  It works for me.

My appetite has not changed, nor have I lost weight.  Diagnosed with IPF in February.  It took three and half months to get thet dianoses.   I am not on ifp medication, and coming off predizone completely in two more weeks (5mg).  I was on 40mg initially staring in October.

I am on oygen part of the time, mostly when I am active and at… Read more