[Carl Stecker]

I have been diagnosed with IPF since late 2010 and had remarkably little progression during the first eight years.However with two major exacerbations in the the past year the IPF symptoms have worsened sufficiently to qualify for a future lung transplant. Sweaty palms and feet occur frequently most days and I occasionally have the sheet drenching variety at night such that I place a heavy bath towel over the pillow and sheet in the middle of the night after the episode. The sweating phenomenon has only started in the past 2 months and neither my regular pulmonologist nor the transplant pulmonologist thought it related to IPF. My wife thinks it is likely a stress response ( I am acrophobic and always got sweaty palms when at heights). The increased stress of worrying about oxygen equipment,saturation level, THE call for an imminent air ambulance to the transplant center, adjusting to not being able to do as much and just tripping on the oxygen line all contribute to my stress level and this possible response.

 

[Carl Stecker]

@keithn, hey,sure,I’ll even let you have your own cup of coffee!

I have pretty fortunate with Kaiserpermanente @ Sunnyside in Clackamas. You have to advocate for what you want but my pulmonologist has referred me out for testing when I feel it is necessary,though certain things like pulmonary function labs and CT scans mostly run on KP’s annualized schedule. Still,sad but true,there is not much else western medicine can do but Rx and transplant when lungs deteriorate enough. There are always new trials of promising therapies so that if you are early on progression  and it is not aggressive there may be hope.Hey I had 8 years of great functionality up to now and am only starting to consider getting listed for transplant because my condition worsened and I am not getting any younger.

There have been some alternative practices that have arisen recently such as K laser therapy and the herbs through the Wei (sp?) institute. I may investigate those avenues,in part depending on whether transplantation is an option.

Give me a holler if you are in the valley.

CarlGullivers travels’s and please yeah

 

 

[Carl Stecker]

I am 68, live south of Salem. Diagnosed in 2010, started with acupuncture and naturalpathic supplements,kept playing tennis,hiking and traveling thru last year. Had a fundiplication operation 5 years ago to relieve GERD but now back on reduced opremazole Rx.On OFEV for 3 years after problems with Esbiriet.Had exacerbation late last year and now on oxygen at night and any time I mildly exert,using portable oxygen concentrator. Currently getting testing for possible listing for a transplant thru my Kaiser Permamente coverage,scheduled for pulmonary rehab later this summer as recent CT scan revealed lots more scarring.Lucky to be at 90% O2 at rest without supplemental.I used to SCUBA dive,was out at jetty by you 25 years ago! I was just in Bend yesterday and had to use O2 while sedentary as it is at 3500 feet. Got an electric bike to promote movement,greatest purchase ever.Good luck with managing the IPF, soak up those negative ions at the beach and keep exercising as much as you can!

 

[Carl Stecker]

Yes