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Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Sep 23, 2023 | Replies (113)

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@riverotter

Hello, soooo, sorry to hear about your very unfortunate plight with Sarcoid. But Im so glad I decided to visit this page today. I also am having a horrible time with this Sarcoid, I was dx. back in 08, and I been living a nightmare ever since!! It all started in my Lungs, then it quickly spread to my other vital organs. When I dx. w/ Cardiac Sarcoid, I was floored. To make a long sad story short, I am have Cardiomyopathy, Systolic Heart Failure, my Heart is only working at 24%, and I was recently told I would need a Heart Transplant. I had to have a CRT-D implant, b/c my heart is either beating Way to slow or WAY too fast. I also have a LBBB, which is also a issue.
I now take 7 medications one of which is Prednisone, which as caused me to blow up like a balloon. I feel like a pin cushion b/c I'm always going to have blood work and I my veins collapse during withdrawal, which means I have like 4 pin holes. ( ouch). I'm now very depressed, b/c, I can't walk around much, I'm extremely tired, & I can't drive, work, or do much of anything!! So needless to say I feel like I'm just a big waste of human flesh. I used to be a very active woman, I live in the mountains, b/c I love hiking, camping, & the country living. How do you feel now after your transplant?? Were you on a Transplant list? Were you able to resume most of your day to day chores? I would appreciate any info you could give me. Im a new grandma, to a beautiful granddaughter, and I would love to be around to watch her grow up.

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Replies to "Hello, soooo, sorry to hear about your very unfortunate plight with Sarcoid. But Im so glad..."

Hello, @riverotter. It seems we are traveling a similar road. I am a grandma as well and love being with my grandchildren. They live farther away so I can't see them all the time. Prednisone made me gain sooooo much weight and of course if affects your appetite and, believe me, I indulged... too much. So I lost my weight when I went off the drug. Now I'm still on 5 mg and you can see the chubbiness in my face, but nothing like the earlier dosage. I also had trouble giving blood. I tried to use some weights prior to a blood draw and drink plenty of water, but a baby needle was always used for me. There was a wonderful phlebotomist who I would ask for and she knew exactly what to do. I was not shy in talking with those who drew my blood. Some folks get uppity if you tell them what to use. I would just be polite and tell them I had done this soooo many times. I figured it out. I never felt really depressed. I continued to work as a principal at my school in Chicago for four years and then had to retire. Moving to Arizona was great for me; I was volunteering at a local school and soon I was led to Mayo in Phoenix after I needed to be cardio-verted due to an atrial flutter (thyroid craziness). I was originally seen as a heart failure patient and with additional tests - the oxygen exchange test - it became clear that my heart was only providing only 30% of the needed oxygen to my muscle groups. The doctor immediately wrote me up as a potential transplant patient. The next month I needed IV meds in addition to the heart meds I was taking. I was placed on the list and three weeks later I was called for a transplant. That was my trial run, because the Mayo doctors decided that the heart was too sluggish for me. I had been prepped for surgery, woke up in ICU and had no new heart. While the heart had passed all the medical tests, it was deemed "too sluggish" by the surgeon. The doctors at Mayo know their patients very well and knew this heart would not be a perfect fit for me. A month later I received my new heart - a real Ferrari engine. This heart is amazing. I have always hated housecleaning, so you ask about day to day chores......I am now taking classes at the university, traveling to see family, etc. It's an ongoing relationship with my body. My pulmonary function tests had been as low as 62% and are now up to 88% so I know my heart is doing the right thing. My heart seems to be very young, but my husband reminds me that the rest of me is old! If I get tired, I rest. Sometimes I run myself ragged. I loved hiking too and with my bad hip, that might be too much for me. Sorry this is so long and I hope I have encouraged you in sone way. Take care of your body now as much as you can. I know it's difficult. Feel positive and feel joy. It makes a difference. And I'd be happy to answer any other questions or expound on these!!! 🙂

@riverotter, I am just now seeing and reading your post. Thank you for reaching out in this discussion with your questions.
I see that @estrada53 has already responded with some expert knowledge from her own experience. I received my liver and kidney transplant at Mayo Rochester in 2009. I also love the outdoors and hiking. And I have a beautiful granddaughter to love and who blesses my life with her hugs.
How are you doing? Are you being considered for a transplant?

Don't give up. You'll have ups and downs. Take advantage of your ups, read all you can and try to promote healthy things little by little. I tend to want to give up when it flairs up. But you can't. Start slow and try to move ahead a little everyday. Take care.