Izaquilter

thank you for your reply & I agree with you. The "main man" had to talk to my dr. & he had to be the one making the decision that it wasn't an emergency. Just taking things very slowly & one at a time right now!

blueheavenfla

Dear Izaquilter,
I send you love and prayers. About 7 years ago, I was diagnosed with pulmonary hypertension. I am an RN and didn't believe the diagnosis because I felt that the symptoms that I had were mild and not really those of that diagnosis no matter what the doctors had to say. They insisted that I have very invasive testing (a cardiac catheterization) which I declined. They they did a TEE (a trans-esophageal echo cardiogram) which showed that I didn't have PHTN. They had already tried to get me into an experimental medication program similar to what you described...an infusaport with medication 24/7. I went to another doctor and told him I didn't think I needed the cardiac cath and he agreed and felt that it was just that my B/P was not well enough controlled (and it wasn't really very high). He was the one who ordered the TEE. Ordinary medication controlled my BP and my so called PHTN. Again, just recently, I was told I had heart problems, had a chemical stress test and was told I needed stents in my heart. I told the docs that the pain was my gallbladder and they disagreed, repeatedly. I declined the stents and at last they ordered gallbladder tests (just to shut me up) and guess what...it was so loaded with stones that they said that they didn't know how I stood the pain.

All this is not to dissuade you from receiving good medical care but make sure that they do all the tests that they need to do to be sure of your diagnosis and then go whatever treatment with a positive outlook. None of us know when our time will be up and we will leave this world. I was a Hospice RN for a number of years and while we all will die, not all of us die when a doctor presents a grim picture of our future. We will leave this world when God calls us...not when a doctor says "goodbye" to us. We all must make the most of each day no matter what our physical condition may be.

You sound like an optimist and one who will enjoy each day to the fullest you are able. Here's hoping you have many quilts yet to make! Love and hugs and if you want to PM me, please do. My sister has been through 2 episodes of breast cancer and greets each day with a smile and is determined to spread love and joy wherever she goes. May you do that too, no matter what the diagnosis.
Donna

Alondra

I don't know if it's related, but I have ideopathic pulmonary fibrosis, which also puts strain on the heart, because the lungs aren't exchanging CO2 as they should, so the heart works extra hard. Have you tried googling it and searching some of the respectable medical sites, like some of the better-known hospitals and clinics (Meninger, etc)? I'm sure there's a lot out there, but it just takes time to look for it. Good luck and God bless!

katcox

I'm having a CT scan on Monday to see if I have spinal stenosis.I didn't know a cast came with it. I was diagnosed a year ago in Dec with Fibro and Ra. then 2 months later I couldn't walk and I'm taking 4 pills so that I can walk. any one else dealing with this?

Annz

Sorry to hear this. I hope you can get some answers from someone who has it as apposed to the medical professionals.

katcox

Thanks ,I would like to know also. But I can still enjoy my quilting, my fingers still work although slow some days.

iltoaz

Prayers for you! Hope all turns out ok in the long time.

Izaquilter

Update....They have me on Letairis meds now for almost a month & I can already notice some changes. Breathing much easier & doing more & more every day. If this continues I will be happy. I'm only on half the recommended dose so only better can come I am hoping. Thanks to all who have replied & commented on this & my prayers go out to those going thru tuff times with new diagnosis'. Hugs to you all

blueheavenfla

Great to hear how you are progressing; keep that positive attitude and I'll keep up with the prayers. God knows you need his help and will provide it. Keep smiling!
Donna