Marisa Beard

So far I have been told by my transplant doctor that I won’t be considered for a transplant unless I lose 30+ pounds (these are the same 30 pounds I have gained since taking prednisone and CellCept). Next week I plan to go on a very restrictive diet to try and get some of the weight off (I haven’t been eating badly up until now so I guess I need…[Read more]

My husband tested positive yesterday so we are trying to isolate ourselves from each other as best we can. I am getting the monoclonal infusion today as a precautionary measure. So, I can’t answer your question, but if I get COVID I’ll send an update.

I can’t get a booster yet because I got the J&J vacine. Although there is no problem with me qualifying I will still have to wait.

Thanks for the info — I also have polymyositis and antisynthetase that have contributed to my lung condition (I have significant scarring). Thanks for the encouragement on exercising every day — that needs to be a new goal for me. I agree that the slow taper is the best thing to do for prednisone. That last time the doc (PCP) tried to get me to…[Read more]

Christie,

Thanks so much for the information!

Marisa

I appreciate your reply and sharing your experience. It has been so helpful to hear what others are going through, especially if there are similarities to my situation. I am ready to have my next pulmonologist appointment so I can at least have PFT done again. This is where there has been such a significant decline for me so it would be great to…[Read more]

My experience with CellCept has been little to no side effects. I am on 3000 mg a day. I know everyone is different. It has brought my inflammation down and now I am beginning a slow prednisone taper.

My experience with pulmonary rehab has been great. I have been going approximately 3 times a week for 6 weeks. I have 6 more weeks on the program but can continue to go once I am officially done (they just won’t’ monitor me one on one). My treadmill experience is I am at 1.5 mph for 14 minutes on 3L of oxygen. 1.5 is mighty slow but at least I am…[Read more]

I had an appointment with my rheumatologist yesterday. I guess the 3000 mg of CellCept is doing its thing since my blood work shows the inflammation is down. She had a conversation with the transplant doctor (one of my pulmonologists) and he firmly believes that I need a lung transplant but I have to lose 35 lbs to even be considered. I did start…[Read more]

Hi Fay —

I am blessed to work at a university that has allowed me to work at home as much I need to. I try to go in 3 mornings a week but I can only do so because of my oxygen. I am 62, so mentally, I was not ready to retire and so glad I have not had to — yet. I also teach online doctoral courses, so of course, I can do that from home!

I am…[Read more]

Your diagnosis does sound very similar to mine. I agree it is the “new normal” and at times hard to adjust to it. I do go to pulmonary rehab right now, which has been helpful to make me feel a little better.  But when I walk a speedy 1.5 mph and use 3L of oxygen, it can also get depressing! I go into the office for at least 15 hours a week (I…[Read more]

I would be interested in knowing about the laser treatment also!

Just to clarify what my diagnoses (listed in the subject area) are Connective Tissue Disease- Interstitial Lung Disease(CTD-ILD) basically brought on by these 3 autoimmune disorders Sjogren’s Syndrome, polymyositis, and Antisynthetase syndrome. I am currently under the care of a rheumatologist, pulmonologist, lung transplant pulmonologist, o…[Read more]

I am currently on 20mg of prednisone. When I try to wean lower I have absolutely no energy. I am also on 2000 mg of mycophenolate (soon to be increased to 3000). I have had weight gain (which certainly doesn’t help me get evaluated for a transplant) and I have issues with sleeping. Hopefully, in the next few weeks, we will try to reduce my…[Read more]