Jo C. thinking of you today

My heart overflows with your kindness; thank you so very much. It sincerely makes a difference.

Son, David is now home from the hospital and is doing fairly well. On Prednisone and to begin IV Retuximab as outpt.. A ways to go, but pretty independent and able to take up life again except for needing about two months away from work.

However; my own news is truly a bit stunning for me; it seemed to come about so fast. It appears that in all probability, I have Pulmonary Fibrosis with absolutely no history or life style leading to such a condition. Never smoked, no exposure to chemicals, no family history, have had no need for any prescription meds at all for years except for a UTI, as all has been normal/well; so at this point, am considered Ideopathic (unknown cause). Per pulmonary, not connected to vasculitis.

Possible autoimmune or inflammatory cause. My labs are WAY up for inflammation. First time ever. Beaucoup labs taken over three days. Even though I was in large med center, some labs so complex they needed to be sent out to specialized centers and am still waiting for those to return.

I had been just fine living life as always. A few months ago I realized I was feeling a little bit kind of weak when doing a lot, sometimes a bit short of breath (only a bit) when doing a lot. Not overwhelming; just thought to myself, "I really need to lose some weight and I am decompensated and need to increase exercise." I just kept as usual and ignored it. Big mistake.

Well; later; over about three days, I was very SOB with activity; just simple walking short distances in the house and also began coughing. No fever, not other symptoms. Got to the point I realized this was a significant issue; went to Urgent Care as it was a weekend, MD there was concerned with chest X-ray. Saw my own MD the following day.

He listened to my history, reviewed UC report and explained the need for much testing, and wanted me in the hospital.

So, I was admitted on the 30th, and discharged on Nov. 2. Had echo, CT Scan of chest which was positive for fibrosis. Ultrasound of extremities, more X-ray and blood, blood, blood draws on all days. Saw Consults: Cardiology, Pulmonary x 3 different ones and a couple of others. Cardio told me my heart was healthy and functioning "perfectly," no problem whatsoever. Pulmonary told me I DO appear to have Pulmonary Fibrosis - cannot understand that; always have been healthy. Started me on IV Prednisone twice a day in hospital.

Home now; on oral Prednisone and yesterday began tapering it down from 60 mg, it will take awhile. Yet; still a bit SOB when even going from bedroom to bathroom; however, within two minutes, am back to regular breathing. and sometimes coughing like someone is paying me to do it. Big time concerned, however, Pulse Ox range is from 95 to 97, once in a while 94. As one ahem; "matures," my understanding is that 95 is the average . Have fu appt with Pulmonary in two wks as well as other specialists with Derm added. I had onset of Rosacea which was first time and florid, and also developed a skin discoloration on a limb over about six inches; this has them guessing it is all part of the same issue and probable autoimmune/inflammatory process. Prednisone making me very tired, very wimpy and even a bit sleepy feeling. Am actually pretty much staying quiet and like dear MI, I spend time quiet and reading. Thank you Kindle. Just so hope the Pred will quell the process and take away all SOB; we shall see. As it tapers down 10 mg every three days, hope I am much sharper as less med in the body.

Hospital staff was wonderful; felt very cared about and of course I cared right back. Had a nice quiet roommate first couple of days and then got someone who was, well; an inconsiderate loud demanding person with no care for others and rude and demanding of nursing. I just kept curtain drawn and got some earplugs.

Big pleasure this week was getting a shower when I got home. So good to be squeaky clean. DH came up to hospital each day and stayed most of day which was appreciated.

Where this goes from here, don't know. They can sometimes slow down the fibrosis with meds, but it is not a good condition to have as it is progressive. I am an RN but have not one whit of experience with this condition - I WANT M1 AND MARTA!!!!! Grin.

Truly; I am thankful for all of you; it has brought tears to my eyes to have such care, it has really lifted me up at a time I really need it.

With much love and soft hugs being sent to each and every one,

J.