Celebrating Another Year of Adventures With Sarcoidosis
My birthday was three days ago, which was three days after the first day of summer.
Growing up, the last day of school often fell on my birthday. My final report card determined if my day would be happy or crappy.
As I got older, my birthday became a time for me to party. I would start the party the week before, on or around Father’s Day, and wouldn’t finish until Sunday after my birthday. Well, I don’t do much partying anymore. All celebrations take place within the safety of my house or yard, where I can celebrate without restrictions.
Little did I know years ago that those restrictions would involve pulmonary sarcoidosis.
These days, in the lead-up to my birthday, I often worry about how sarcoidosis might affect me physically or mentally. But it doesn’t affect how thankful I am to see another year. I have to keep in mind that sarcoidosis is an obstacle, and not my entire story.
A few days ago, I had to meet with one of my cardiologists for an echocardiogram and follow-up visit. One complication of pulmonary sarcoidosis can be pulmonary hypertension, so I was stressed and terrified about what the test might indicate. I decided to pull myself together and handle my business.
I arrived at the hospital and settled in for the test. So far, so good. After the test, I was talking with a nurse about how I was feeling when the doctor entered the room. The look of seriousness on his face nearly made my heart stop.
He admitted that he had already reviewed the results, and that they looked great compared with my results from six months ago. He went so far as to show me side-by-side videos of both tests. The improvement was crystal clear. Needless to say, my heart stopped racing.
That was my first birthday gift.
Once we finished, I was off to my next test, a CT scan of my lungs. This was just as scary as the echocardiogram. The test always concerns me because it indicates whether sarcoidosis has continued to compromise my lungs. Although I love my pulmonologist, I was not looking forward to this meeting. I kept thinking about what he told me years ago when I was considering a lung transplant: “You don’t want to get too sick.”
But the test went well — another birthday gift.
Last Friday, I turned 58. I’d be remiss not to acknowledge how blessed I felt to see this birthday. A few years ago, I spent my birthday in the hospital. This year, I’m following through on things I want to do, and not letting others talk me out of doing them. I can’t forget what makes me happy. Those things keep me going.
While reading about the significance of the number 58, I discovered the angel number 58 is a sign of immense wealth. I guess it’s a good year to play the lottery!
I don’t know how sarcoidosis will continue to affect me. Life is like a game of Chutes and Ladders, and every day is a new adventure. My family and friends don’t understand what that means to me, but that’s OK; each new adventure is mine. I may not be among the great adventurers, but I’m up to the challenge and I welcome each journey. Adventures make life enjoyable, so why not have a little fun?
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
David Sheiffer
Boy, do I understand where you are at. I rarely post, but I have multi-organ sarcoidosis first diagnosed as bony sarcoids in 2017 when, after going for a second opinion on a possible hearing surgery, a scan revealed lesions on the base of my school. Took a bit to get diagnosed even after a skull biopsy surgery since so rare, but if I hadn't gone for that second opinion I would not be here today likely to write this. They are in not just my skull, but liver and heart causing a rare former of hear failure from cardiac sarcoid scar tissue in the left ventricular chamber that physically reduces blood volume in the chamber. All I say is I go through a number of tet and bllod work on a regular basis - he sarcoid team begging with Dr. Morgenthau, whose practice is limited to sarcoidosis at Mt. Sinai in NY, is great but with each test you take a deep breath and keep going on. I've had 22 surgeries in my life - not all sarcoid related- but you just keep on keeping on! The alternative is not acceptable. Hang in there everyone. If I can, you can. Odd thing is I don't have much in my lungs. Just make sure you get tested on a regular basis, particularly for your heart. As my doctor told me when I was diagnosed "we usually don't know someone has cardia sarcoidosis until we do an autopsy. Be proactive. It can save your life.
Charlton Harris
Thank you for reading and your message, David! I try to tell everyone to make sure they have a good medical team that they can work with, and that LISTENS TO YOU AND YOUR BODY! Sometimes it's hard to describe what you;re going through, and most times the test will tell. However, you have to be a pest so you can keep fighting. I believe my sarcoid may have spread some, but no one can confirm or deny since my bloodwork is good and I feel fine.
Keep fighting my friend and keep moving if you can. Sarcoidosis doesn't like a body that's physically active.
Stay Blessed my friend!
-C-
Shirley Logan
Thank you Charlton and David!!!! Reading stories like yours makes me feel less alone and encourages me to keep living and moving forward. I also have multiple organ sarcoidosis with the journey starting with a bone marrow biopsy in February 2020 that was checking on my other disease MGUS (aka smoldering multiple myeloma). However, because of the COVID pandemic referral and review by a respiratory physician was difficult. I finally had Sarcoidosis confirmed by bronchoscopy and biopsy in April 2020 plus sleep study showing sleep apnoea (July 2020) requiring ongoing CPAP therapy, BUT as my 'lung function' test was 'sufficient' there was 'no reason' for any further investigation. Eventually in November 2020 I convinced my Respiratory Physician to do a PET scan which revealed active sarcoidosis in my lungs, lymph nodes, spleen (fully involved) and bone marrow; which was in addition to a skin lumpectomy biopsy showing sarcoidosis (September 2020) in my skin and anterior uevititis (from September 2019) in both eyes (response to inflammatory process in my body & the eye specialist pushing for further investigation because the eye problem was totally 'wrong' for my age and eye health). I was actually feeling unwell, fatigued and had discomfort in the area of my spleen from 2017 but doctors were more or less 'uninterested' (probably just ageing at 62). So after a long journey of persistence and personal research leading to the PET, I finally started treatment in November 2020. As my confidence was fading in my respiratory physician and the prescribed medications were outside those recommended for Sarcoidosis on the European Respiratory Consultants website I found a new Sarcoidosis Specialist just before Christmas 2020. So here I am 18 months along and receiving appropriate treatment and oversight with my Sarcoidosis and MGUS Specialists working in consultation with each other. Honestly, without the stories and scientific articles on Sarcoidosis News I might have given up and not persisted with requests for appropriate testing that ultimately has led to a better quality of life for me with appropriate treatment. A motto for me is 'we only die once but we can choose to live every day'! So again THANK YOU for sharing and being a support to me all the way here "Down Under" in Queensland, Australia.
Charlton Harris
Thank you for sharing your story, Shirley! One thing I've learned throughout my journey is that you have to have a medical team that values your input more than their knotwledge. Remember, you're living with this issue-they're not, so your input counts for something. Try to get every test you can from x-rays, ct-scans and bronchoscopy to right heart cath, echo and blood work. When you're being evaluated for a lung transplant, you to do a serious set of blood tests so they can test for EVERYTHING imaginable-I suggest you talk to your doctor to see if you can take that test. You may not need it, but to me, it's the gold standard of blood work.
Many Blessings to you going forward, and please keep us updated. We have to stay informed!
-C-
Adam
Hi Charlton, Happy Birthday from all of us in Australia.! We are the same age, mine was a month ago. I was so pleased to hear that you had a couple of good Drs visits, you certainly deserve them given how positive and encouraging you are most of the time. Thanks also for the hint about playing the lottery, I guess we all have to start sometime! Keep up the great spirit in all your weekly updates and take care out there in your part of the world.
Charlton Harris
Hi Adam, and thanks for the birthday wishes! I haven't started playing the lottery yet, but I will in the coming days! Thank you for reading and please continue to help me improve my skills. I'm glad I can inspire others because we have to band together, share our truths and information and continue to LIVE!
Keep moving my friend, it helps a great deal. . . and kiss Archie for me! LOL!
-C-