At NJH and need to vent

Do you get scared when you get a little breathless. Everyone tells me it’s cause I’m not used to the altitude in denver coming from Georgia. They put me on oxygen,…..the only time at home I feel that way is when my costochondritis ( ribs) act up..but here I feel it much more. All the technicians and nurses say it’s that I’m not acclimated to mike high elevation. Dr Eddy said it’s from the Mac etc…so now I’m scared……who dini believe?

Hi it’s me AGAIN. This is all new to me. Six months along. I’ve been praying and asking God to help me not to be afraid. When I get a little short of breath it freaks me out. Can you give me some mental tips to combat it. When my costochondritis is active (which it is): I get that breathless feeling cause it’s all inflamed in ribs and then it subsides when that calms down. Also the altitude here causes it….so I’m using the oxygen they gave me. I wish I could just ignore it and go about my day. I think I have a fear that I won’t be able to breathe. I wish they had psychological counseling at NJH, cause it’s a big part of all of this..to have this happen to your lungs.
When you get breathless at times how do you deal with it? I have way too much fear………and no one to talk to about it. My life is so different now…….I know I have to have acceptance..it’s the breathing thing that is scaring me……any suggestions? I feel like the people on our blog seem to have adjusted to this aspect..they don’t talk about the fear thing /and the breathing much. Why am I so terrified. Thks Bon

I live in Florida and I tried to get in Mayo and they had no availability so, I chose to go to NJH.

How I wish I could give you a hug! Yes, fear is pervasive and I'm pretty sure very few folks on this site have a complete handle on it. My saving grace for years was a friend clear across the country who also had the disease. We exchanged whines, fears, joys, and prayers constantly. Then she died. It sent me into a tailspin that I didn't think I could recover from. Three years of almost total isolation and the loss of my touchstone was too much. I had to seek professional help. I see a Christian therapist once a week. While she has no personal knowledge of this disease, she is willing to listen, offer resources, and pray with me.
My suggestion for when the breathing scares you is one, the oximeter, and two, distraction. My panacea for most everything is to play with the dog. She loves me unconditionally, is always happy to have my attention, and shines the love of God through her eyes. I hope this helps you, Bon. I know you're walking down a very bumpy road. But all of us are here for you...just keep writing!

I just looked up this blood result I guess I will talk to the Dr Monday. The last three items scare me..can u look it up and tell me what U think?

Bon,
First off, I do hope the Denver visit has improved for you. I have just returned from my 4th trip to Denver in less than 2 yrs. The altitude always bothers me, since I live at sea level in CT. A week visit is not enough for me to get used to it. I feel they downplay this out there. Just being there causes me anxiety! I also grapple with shortness of breath, and as you probably know the anxiety over breathlessness can makes you more breathless, a vicious cycle. I have learned breathing exercises at PT, most of which involve breathing through your nose and consciously slowing down your breathing. This requires effort but I think helps. I have not had other prof help although sometimes I think I might need it.
My experience at NJH reflects what others have said. I had surgery last summer out there at their recommendation, Tbe care was excellent and I believe it was the right thing to do. Coping with the aftermath at a distance has been more difficult.
The truth, as others have said, is that they don't really know the answers often with this disease. But they do know more than most other docs. I decided on this trip I have to find a team closer to home. It's good that you have someone local to see who is knowledgeable. Good luck with everything.
Chris

Bon
I well remember my terror at the need for treatment- it is so easy to get very anxious when you hear about the potential side effects. My three years of treatment were not easy but I adapted and life was pretty good in spite of the inconvenience and blips along the way. I do hope that you will allow the doctors and science to guide your treatment decisions and recognize that our emotions can make things worse than the reality
Most people do get some variation on fatigue and GI symptoms, but other side effects are infrequent and medications can be changed or adjusted
About 50% relapse after treatment but not everyone needs to take medication again.
Leaving MAC untreated can also be dangerous if you are at a point where you have symptoms or lung damage is progressing
Please keep an open mind and learn all you can about what will be best in your particular situation.
Good luck with finding clarity and the best path forward

Bon
I well remember my terror at the need for treatment- it is so easy to get very anxious when you hear about the potential side effects. My three years of treatment were not easy but I adapted and life was pretty good in spite of the inconvenience and blips along the way. I do hope that you will allow the doctors and science to guide your treatment decisions and recognize that our emotions can make things worse than the reality
Most people do get some variation on fatigue and GI symptoms, but other side effects are infrequent and medications can be changed or adjusted
About 50% relapse after treatment but not everyone needs to take medication again.
Leaving MAC untreated can also be dangerous if you are at a point where you have symptoms or lung damage is progressing
Please keep an open mind and learn all you can about what will be best in your particular situation.
Good luck with finding clarity and the best path forward

How I wish I could give you a hug! Yes, fear is pervasive and I'm pretty sure very few folks on this site have a complete handle on it. My saving grace for years was a friend clear across the country who also had the disease. We exchanged whines, fears, joys, and prayers constantly. Then she died. It sent me into a tailspin that I didn't think I could recover from. Three years of almost total isolation and the loss of my touchstone was too much. I had to seek professional help. I see a Christian therapist once a week. While she has no personal knowledge of this disease, she is willing to listen, offer resources, and pray with me.
My suggestion for when the breathing scares you is one, the oximeter, and two, distraction. My panacea for most everything is to play with the dog. She loves me unconditionally, is always happy to have my attention, and shines the love of God through her eyes. I hope this helps you, Bon. I know you're walking down a very bumpy road. But all of us are here for you...just keep writing!