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Message |
Monte
Member
Username: Monte
Post Number: 22
Registered: 06-2010
| | Posted on Tuesday, June 29, 2010 - 08:43 pm: | 
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Hey All,
Hope everyone is doing well. I just bought one of those fingertip Oximeters to monitor my SP02. At rest I'm fine, but if I stand and walk literally 2 feet, stop and take a measurements, it drops below 88, lower if I walk.. without O2. I needed to up my O2 to keep my SAT level up around 95 (4 liters).
My main question is this. I know with IPF, I will be going down hill.. How fast? Who knows.
I'm trying to figure out where I stand with this. First LFT was severe restriction FEV1 below 30%, Second one a month later (yesterday) had no change despite 60MG Prednisone, .06 MG Colchicine, 800 MG Sulfur, 1,800 MG NAC+ (N-Acetyl-L-Cysteine)
If anyone (who had, or has IPF specifically) can offer up their story about how fast you declined before transplant, how long you had the disease before the decline, and if it was a sudden or a noticed graduale decline, I would greatly appreciate it.
Monte
Diagnosed with IPF May 2010
O2 24-7
Considering Lung Transplant per Doctor's advise.
Central Florida |
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John Scagliarini
Member
Username: John_scags
Post Number: 10
Registered: 03-2010
| | Posted on Tuesday, June 29, 2010 - 09:11 pm: |
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Hi Monte,
Although I have no current diagnosis for my lung condition, my symptoms are very much like some one with IPF. The problem for me at least is that the rate at which my lungs are deteriorating is unknown. It was only last september when i went from needing no oxygen to constantly needing O2. Originally I needed 4L O2 at rest to keep my SAT above 93%. It has been about 9 months sense then and now at rest I need 6L O2 to stay above 93%. so it is progressing slowly now where as it came almost out of no where to begin with. I also have had no response to prednisone as well. I go to pulmonary therapy and try to do as much as I can and that has helped me somewhat.
I hope this helps in some way or another, just keep an eye on your O2 SAT with the oximeter and note any changes you notice, so that you can tell your doctor when you see him/her again. |
ajs
Member
Username: Ajs
Post Number: 331
Registered: 03-2008
| | Posted on Wednesday, June 30, 2010 - 09:05 am: |
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Monte,
My PF came on very slowly over the course of ten years. When you don't respond to Prednisone, it pretty much confirms the diagnosis, that's why I refused to have an open lung biopsy. I didn't need a risky surgery while I was so compromised, just to put a name on what I had. I wasn't going to get better.
I also needed 6L at rest by the time I was transplanted, but 33L to walk! Once you are listed, be sure to let the docs know of any increased need for O2, it raises your LAS (lung allocation score). I would certainly start the eval if you can, you can always change your mind, but in the meantime, if you get pneumonia or something, things can go south in a hurry.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
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Monte
Member
Username: Monte
Post Number: 23
Registered: 06-2010
| | Posted on Wednesday, June 30, 2010 - 05:01 pm: |
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Thanks,
John,
One question.. Why no diagnosis? Any idea at all what it is. A HRCT scan can give you a pretty good idea if the see Honeycombing and "interstitial Changes".. kinda like spider webs if you look at the frontal view. Here's a link with some ipf scans:
http://www.pilotforipf.org/il_pilot_2006_1.php
Also IPF shows very small lungs and COPD shows much lager than normal lungs on an x-ray... sometimes even protruding past the rib cage. If you have any chest films.. look at that. Of course.. a lung biopsy will tell for sure. I had a less invasive "Keyhole" biopsy where they make 3 small incisions and go in with a camera (Also, a Sound crew, Video editor, Boom Mike......only kidding).... . Open lung Biopsy is much more invasive and could take 6 months to recover. I was recovered in about 1 month...
Just a little info from what I went thru.
Hope you find out what it is..
Monte
Diagnosed with IPF May 2010
O2 24-7
Considering Lung Transplant per Doctor's advise.
Central Florida |
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Jack
Member
Username: Jack
Post Number: 77
Registered: 01-2009
| | Posted on Wednesday, June 30, 2010 - 06:14 pm: |
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Monte, My first go round with IPF went slowly, then it seemed to progress rather rapidly culminating with my first single lung TX. This time, these five years later it seems to god up and down. It's a hard nut to crack, it follows a wide pattern. God Bless. Jack Hurley
| LEFT LUNG TRANSPLANT FOR IPF JUNE 21 2005 |
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Monte
Member
Username: Monte
Post Number: 27
Registered: 06-2010
| | Posted on Monday, July 05, 2010 - 11:01 pm: |
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Thanks for the reply.. And blessing. Jack...It's all new to me and trying to find out more.......
Monte
Diagnosed with IPF May 2010
O2 24-7
Considering Lung Transplant per Doctor's advise.
Central Florida |
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Monte
Member
Username: Monte
Post Number: 28
Registered: 06-2010
| | Posted on Monday, July 05, 2010 - 11:59 pm: |
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Thanks for the reply.. And blessing. Jack...It's all new to me and trying to find out more.......
Monte
Diagnosed with IPF May 2010
O2 24-7
Considering Lung Transplant per Doctor's advise.
Central Florida |
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txcaregiver1
Member
Username: Txcaregiver1
Post Number: 12
Registered: 10-2009
| | Posted on Tuesday, July 06, 2010 - 12:09 pm: |
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Hi Monte
I'm just the caregiver and not the lung recipient, but I can address our specific IPF issue. This is March 2009 and he didn't know what was wrong, only that he wasn't feeling well and thought maybe flu. When he presented at the local ER his SAT was 61. That day the IPF diagnosis came. Ten days in ICU before being airlifted to clinic.
He was listed 9 days after arriving, and by that time he had declined to where he could not even take a sip of water without the SAT dropping---while on 100% oxygen. Nine days after being listed he was TX. Many other issues and complications, both before and after TX, and I know that this is not a "typical" (if there is such a thing) IPF scenario, but for what it's worth here's but one story.
Hope you are getting some answers, this site is the best for that. |
dennis
Member
Username: Netforce
Post Number: 79
Registered: 10-2009
| | Posted on Saturday, July 10, 2010 - 01:32 pm: |
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Hi Monte,
I don't have IPF either but I know a few people that have had it. I am currently awaiting bilateral tx myself but for COPD. One of the guy's here had IPF and was functioning on about 5LPM with low 90's SpO2 numbers . He had been diagnosed about 3 yrs ago. the week before he received his gift ,he was in bad shape,still functioning but it was a struggle. The thursday before he got his gift he coughed almost continuously,had bumped up his O2 to about 8LPM I think it was. then finally on Saturday night he got his call and it was a perfect match...he recovered very well except for some sturnum problems...the wire wasn't tight enough and began to work it's self loose...every story is different and everyone will have "bumps" along the way....
You've found one of the best sites around for support and feed back...
good luck and my God bless
Awaiting Bilaterial Lung Tx COPD/Emphzyma UWMC/William S.Middleton Veterns Hospital Madison WI.
Listed 10/2009 |
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