Jump to content
RemedySpot.com

Re: Re: Advice needed

Rate this topic


Guest guest

Recommended Posts

Guest guest

mary beth

interesting about the change in the weather, as i think back that seems to be when i get SOB and a little cough. i spent 6 days visiting my nephew in scramento, a little hot and humid, (coming from lompoc) got SOB and a cough, but, when we went out in his boat on the sac. river and i breathed the fresh cool air the cough went away and i felt much better, now i'm back home and am still feeling much better.

ken o.

To: Breathe-Support Sent: Wednesday, June 3, 2009 5:48:20 PMSubject: Re: Re: Advice needed

Craig,

Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered.

Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it.

One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head.

Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice needed

Bruce:

I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the

mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand.

Craig

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM

CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist..http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and

theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given

a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were

youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of

leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...