Sharon MacMillan
Forum Replies Created
-
How I agree with the Lord listening and come to us. He has been in our future, in our present and in our past. He will not disappoint. Thanks for your great encouragement. God give you many opportunities to testify of His faithfulness and active care.
-
I am so glad you posted your post transplant journey. There are many of us waiting on the list, some with set backs, others anxious for many reasons as we face such an important procedure. I do hope that your new life will bring many new blessings with those who love you and value your presence. It is so important to hear from people like yourselves because many of us are kind of in the dark on so many topics regarding what’s ahead-even with great education. So we are glad you are here taking the time and effort to write and share.
-
Dear Charlene
It may be that a support group would be a viable option if the news is difficult. We need to be able to have understanding people to share our hard news with. This is such an up and down journey, but underneath are hard realities. I was thrilled that I received OPEV but the truth is that I needed it to slow down the disease. Weird time to be happy! But when I am feeling short of breath, I have sober thoughts about what the future might be like. So if we talk to people who are ahead of us on this journey and keep connected to people new on the path, we have a more balanced network for when we feel like talking.Just yesterday I had an angiogram. I was hoping to have a blockage so that might explain my shortness of breath and lower 02. But no. My heart is normal. Dr. said it was all pulmonary. Instead of being thrilled that my heart is good, I found myself a little sad that I couldn’t get a stent! Perspective.
This morning, I was able to connect with a new friend who is on a list for a kidney transplant. We were surprised how many things we had in common in our experiences. We both got off the phones refreshed by the other. When we are in the mood, how helpful we can be to others. If we need to ponder or regroup our thoughts, we can be free to do just that. Take care to everyone!
-
So I feel pretty much the same as I did when first diagnosed: Tight chest, fatigue, morning cough, shortness of breath with exertion. Then I was hospitalized with shortness of breath, but it was due to anxiety. The medical staff didn’t know the cause of anxiety. It can be from the disease itself, or two other reasons. I was surprised to find that I had hyperventilated. Since that hospital trip, I started Lexapro because it also helps the breathing as well as the anxiety and OFEV. I seem much more controlled in my breathing. I am happy to share this incase anxiety is an issue for you. Knowing we are fighting IPF is reason enough for anxiety. We have been given many medical pieces of the puzzle to make our lives and lungs work the best we can. Some of the pieces are hard to hear and require adjustment to prepare for the future. But if lexapro helps control anxiety and better breathing, we can add that to our list of helps. So glad for this site where we can hear from others and share our own experiences. Wishing everyone an encouraging day.
-
My mom had interstitial lung disease. She suffered from the effects of long-term steroid usage.
I was diagnosed with mild IPF last June through cat scan at age 71. I wish I could offer comfort to the 61 year old.
I didn’t feel concern until I went out on my usual fast-paced walk with elevated blood pressure and couldn’t get my breathe after having COVID. I went out again in cold weather and again couldn’t get my breathe without discomfort. Dr ordered X-ray which revealed stable lungs with underlying IPF. New world for me. I don’t want to be making up problems that aren’t there. I so feel empathy which each of you in your life’s journey with IPF. -
Thanks for sharing your experience. I am just now being prepared to be placed on a transplant list. Would love to hear that experience if you want to share.
-
Good advice. Eating after 7 is not worth it.
-
So thankful for this discussion where people can share their experiences.
-
I agree with you. Thanks to the researchers who made this option possible.