Jo C. thinking of you today

harshedbuzz

I'm thinking of your today @Jo C.

I hope your hospitalization yields some answers and a plan forward for a better quality of life for you. I also hope David continues to improve.

Loop us in when you feel up to it.

HB

Beachfan

Ditto, Jo C. You always have a helping hand to offer to folks on this forum. You and your son deserve a favor in return. Thinking of you and praying for you.

Ed1937

I've also been thinking about you, Jo. I hope things work out well for you. You've been missed.

jfkoc

me too....

Mint

🙏🏻💐💛

White Crane

Sending prayers

ronald71111

Prayers and love ❤️ sent for you Jo. C.

Ron

Iris L.

I'm praying for you and David. Get well soon!

Iris

JeriLynn66

🙏❤️🙏

ImMaggieMae

Sending prayers and positive thoughts your way.

Lorita

Jo, prayers that things have gone well today.

BethL

We care about you and your family and we wish the very best for you and David. You're both on my prayer list.

M1

Let us know when you can Jo. Hoping for reassuring news.

telinde

Prayers and special thoughts for you, David, and Bill. Joan

Buggsroo

Jo I would like to leave my wishes for a quick recovery.

Jeff86

Sending you best wishes Jo.

Jo C.

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.

M1

Jo i am so sorry to hear this. Idiopathic pulmonary fibrosis is indeed one of these things that can come out of nowhere. Fingers crossed that the steroids help.

Iris L.

Jo C, I am so glad you are out of the hospital and back home! We all missed you! You always take good care of yourself but now, be extra comforting to yourself.

My ex-husband had pulmonary fibrosis. I always attributed it to his long-term heavy smoking. I don't believe he ever had any treatment for it. He was also a diabetic, I don't know if that contributed to the fibrosis.

I'm still praying for you and David.

Iris

harshedbuzz

I am so happy to hear that David is well enough to be home and has a treatment plan in place.

I am sorry to hear of your bolt-from-the-blue diagnosis. I hope the meds work well for you without too much in the way of side effects. 60mg of prednisone is a quite a dose; I'm surprised you're sleepy.

HB

Quilting brings calm

Jo- Step-Dad has had COPD for about 20 years along with some lung scarring. He’s still here at 83.

More to the point, Mom( 85) has idiopathic pulmonary fibrosis- they don’t think it’s due to her prior smoking. Diagnosed a couple years ago. They have run numerous blood tests. The one that hasn’t been done can’t be done at the clinic lab- can’t even be drawn there and sent out. So we’d have to take her to the speciality lab. We aren’t doing that because they don’t plan on doing any treatment even if that test came back positive. They think she’s got too mild of symptoms for treatment. She’s not on oxygen yet. They told me a few weeks ago that if her saturation goes below 88, we’d discuss oxygen. So you are in the mid 90s, that’s good. Sounds like you have inflammation and a flare-up. I bet you’ll feel a lot better once they get that knocked down

Marta

Jo - did you have Covid 19?

telinde

Welcome home Jo. I hope you are feeling better being home. I’m glad you’re handling the prednisone, especially at 60 mg. I wish I could give you encouraging advice like you always have for all of us, but I don’t know anything about your condition. I bet when you get to a lower dose of prednisone you will start feeling more like yourself. It made me feel shaky and glittery at that dose. Hang in there. Prayers coming for you and your family. I hope David is continuing to do better and Bill is getting around great by now. I’m still using a walker. My back just isn’t strong enough to hold me up. PT has been giving me multiple core exercises, so hopefully I’ll get stronger with those. Still no brace!!! That won’t happen here, I’m pretty sure.

Take care and rest as much as you can.

Marta

So you and David are steroid buddies? What stories you’ll tell. Hope you will both feel more glittered (sounds glamorous). 🥰

Jo C.

Hello again. Answer to the question: No; I have not had Covid. I have had the full complement of the Moderna vaccine up to this date which makes me wonder about possible mab effect. Have to wait on this years booster due to the prednisone effect.

I do wonder if there is anything in the literature re the COVID mab vaccine and lung involvement, but do not know. Something to remember to ask pulmonary on my appt in two weeks. I have looked back over years for myself . . . .

Never smoked, ever, not a single day; no chemical exposure; no meds - in fact, not a single prescription in my life as I have always been well - physical each year with consistent excellent labs.

Did have Epstein-Barr back in 2011, but that has been it.

Ideopathic . . . it feels like "idiot" pathic. Prednisone - hungry; not sleeping much so awake at night thinking of food and feeling a bit foggy.

Pulse ox staying at 96, 97 when at rest; if I have been ambulating much it drops to 86, 87 but within two minutes back up into the high 90's again. Really perplexing. And worrisome.

Not being familiar with this, I have no frame of reference to guide me in my thinking.

J.

M1

A wonderful old school neurologist buddy of mine had the best definition of idiopathic: ideo=I Don't Know

pathic=A Darn Thing About It.

You're going to beat yourself up Jo, but no one knows what causes this. Possibly a genetic link? It's so awful to have things happen not in our control. A lot to grapple with and I'm sorry.

Marta

There was a case report in the journal Chest in Feb of 22 about a guy who had an acute exacerbation of IPF one week after Moderna vaccine. There are also genetic studies linking those who have severe Covid with those who have IPF without Covid. Just too soon for much clarity, but I know you will ask your team.

jfkoc

also a study re Pfizer is online.

ImMaggieMae

Sending prayers and positive thoughts your way for a good recovery. Hope you are getting some rest.

BethL

Jo, I am so sorry. I'll keep you in my prayers (David too). Hope Bill is doing well in his recovery from his spinal surgery.

Iris L.

Jo C, upu are always ready to help us. I hope now you are hanging back and taking card of yourself! Let the prednisone do its job. Our area can get pretty dusty, so I know you'll stay masked up and avoid high air pollution days.

Iris