Hi, Heart Sisters
I have a new question for my heart support friends. I was diagnosed with interstitial lung disease. The Pulmonolist does not know the cause yet. Even though I have had blood test who come out to be normal and CT scans that show abnormal, pulmonary function test that show abnormal. I have been in and out of the hospitals also had a broncospy that only showed that he wanted further information with a biopsy with Video-Assisted Thoracoscopic Surgery (VATS). The cardiologist does not seem to think it will give an answer but the surgeon does.
Well, I am almost six month into this Fatigue, dry cough, (dyspnea), Chest pressure or pain ( which I cannot distinguish if it is my heart or lungs) Bluish color to your lips especially after exertion or shower, as they have diagnosed me with PVC”s these are also mostly daily and all of the day.
Right now I am on night time oxygen but as they cannot get the number 88 for oxygen level at the doctors office and only 89 I Medicaid and Medicare does not want to pay for day time oxygen but night time oxygen is paid for. So I am stuck most of the day on a Oxygen concentrator
Before I got on oxygen at night I would have some fainting spells at times, but mostly could control them by sitting down, with the exception of one time at the Pulmonolist office after a walking test to get my oxygen numbers. Now I have them without warning always after exertion and never while using oxygen.
As I have gotten different versions from nurses and my cardiologist about my event monitors interpretations, I am at once getting anxious. The Pulmonologist wants me to have another event monitor; I said I had already several and just a few month ago. And my cardiologist said they were just PVC’s
The Pulmonlogist Nurse said Yes, I had the event monitor but I had only recorded 13 events in one month. As I see it I pushed the button many times sent it out most every day…. I cannot figure out the discrepancy at all does any one understand the event monitor?
Now the Pulmonlogist wants me to record the fainting spells or what they call syncopy. I do not know if I can trust this cardiologist practice again as they want me to do the event monitor with the same cardiologist office.
I need to get well, I cannot stand very much of this anymore!!!!
Should I ask for another office to interpret the event monitor or am I not thinking very well. Because I am exhausted of all this doctor stuff and getting sicker by the week, my partner is tired of picking me up and being he is getting anxiety from all this also.
Thank you all for your response, Vrolijk(Erna)
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Event monitor question? & Interstitial lung disease
- By vrolijk
- Posted February 16, 2009 at 2:27 pm · 4 replies
- In Experiences with healthcare professionals
- Shared with the public
- Edited February 17, 2009 at 1:57 am
4 replies
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- Newest first
- By Ecksunbeam
- Posted February 17, 2009 at 10:04 am
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http://www.nhlbi.nih.gov/health/dci/Diseases/holt/holt_when.html
- By Nanabear
- Posted February 17, 2009 at 12:54 pm
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You do realize a concentrator is an oxygen machine don't you? I am on 2 liters 24hours a day at home I use the concentrator, away I use travel tanks.They have different sizes of these.I don't understand what you mean about oxygen at night and the concentrator during the day.I use the concentrator even with my cpap at night My oxygen will drop below 70 at night without it.During the day it will drop to the mid 80s with out it. It has to be below 89 for ins to cover
- By vrolijk
- Posted February 17, 2009 at 1:52 pm
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Hi, Ecksunbeam
Yes, I have used a holter monitor before. This time they want me to faint and record the fainting spell. I do not have fainting spells on Oxygen, but only when I work outside or go some and during any kind of exertion. Even taking a bath and dressing can cause a spell. And I ghost like face and bluish lips.
The holter monitor is only for 24 hrs and they want several events with a diary what participated the events, so the holter monitor will not work and need an event monitor for several weeks.
My concern is that I do need to faint. So I will need to exercise or something like that. With my last event monitor they said I pushed it 13 times, I still do not understand the discrepancy as I some time had to call in twice with heart arrhythmia problems. And I had the monitor on for a whole month. Thank you for your help, Vrolijk
- By vrolijk
- Posted February 17, 2009 at 2:08 pm
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Hi, PamBeall
Yes, I know the oxygen concentrator is an oxygen machine. The problem lies in the fact that they know I faint because of oxygen depravation or hypoxia in the day also at night it goes to 83 and so Medicaid covers this in the concentrator in the evening and at sleep..
For some reason, I cannot get the low oxygen levels in the doctor’s office; I know they go below 85 in the day at home and each time I exercise out side but not in the doctor’s office. The problem also is that when I exercise the numbers go higher, but when I stop after 15 to 20 minutes they drop very low….. maybe even lower since I faint.
So, since I faint what they believe from hypoxia they want this event monitor. The pulmonologist has problems with the cardiologist with allowing to get the Video-Assisted Thoracoscopic Surgery (VATS) to go forward, which would finally give me a diagnosis within interstitial lung disease. Which can have many causes and different treatments?
But last time I had this done it was for arrhythmia problems and they say I only sent 13 events, I know I sent some twice daily in 30 days…. It makes no sense to me.
Thank you for your post, Vrolijk
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