Jo C. thinking of you today

M1

Agree jo, even if you had to sit in the ER you would have oxygen on. That may be the way to go. So much distress, i know you are sick at heart, as all of us are who are pulling for you.

Iris L.

I'm so sorry David had a stroke! Fortunately, he is now in the step-down unit and will continue to advance. I hope Sayra's idea of calling paramedics for respiratory distress moves you further along in the medical pipeline. Do you have oxygen at home?

Iris

BethL

So sorry, Jo. I'm continuing to keep you and David in my prayers - Bill too. I'm sure this is very difficult for him as well.

Joydean

Jo praying for you and your son and your husband! Praying for your whole family! Keep fighting Jo keep fighting!

Jo C.

UPDATE AGAIN: Had quite a startling discovery with David today. More Neuro tests; repeat MRI but bigger with enhancer. Sadly; Anka Vasulitis has attacked his brain. He will be kept in the hospital and the specialists are doing extremely high dose multiple meds and he will need close monitoring.

Wish I could show you his photo; very good looking fellow and so hard working and caring. He will be home for quite awhile. He installs and maintains large radiology equipment at multiple med centers in two states and is very good at it and enjoys the challenges. He so hopes to be able to get back to it and his goal is to improve to be able to do so. May it be. Thankfully, he is a highly regarded employee.

He is divorced, lives alone. Bought a nice, newly built house some years ago and has plowed money into it and got the mortgage paid off; thank goodness. He never sits still; always going and doing. His house and yard are kept as tidy and nice as can be. He enjoys it. Of course really concerned mother here and helpless to be able to do anything to "make it better."

As for me, well; I am staying down quiet and being a bum so to speak. When I am still at rest, I do not have shortness of breath, so that is good. Pulse ox at rest as I am most of time is 90 - 92; needs to be higher; but it is doable. If I am up and about then is when I get very SOB. As for the hospital and ER:

If I began to get worse symptoms or had SOB at rest, I would get myself to help. BUT last evening, the ER had 30 plus patients on guerneys waiting for beds with 103 patients sitting in chairs waiting to be seen. Nighmare. Holidays seem to do this. I imagine I will be one or two days before getting a room. The RN who screens the beds for patients at night gave me her private number so I can call her any time; but I will not abuse that.

What I would do without your support right now,, I do not know. It is really helping. Isn't that the interesting thing: We do not see one another; do not know each other's gender unless revealed, nor our ages unless revealed, nor our ethnic or racial background; religion; education level, size or other characteristics, etc., etc.., etc.; but here we are all in support for one another which is priceless; like a band of electronic guardian angels.

That is what I will picture you all as; Guardian Angels.

Isn't that wonderful . .

J.

Quilting brings calm

Oh my goodness Jo.. so many changes so quickly. I hope you get admitted soon, and that David improves soon.

Iris L.

I must protest, being quiet and giving solace to your weak body is not being a bum! No, we have to think of self-care in only positive ways! Positivity helps us heal. Your body needs the rest!

If you are able, will you look at the Macy's Thanksgiving Day Parade in the morning? Afterwards will be the Kennel Club Dog Show, two of my favorite shows. Rest well tonight.

Iris

eaglemom

I agree with Iris - one of my friends favorite quotes is "I love self care." That's what you must be doing now. The Dog Show is fun to watch. I wonder if Madison will watch with me and learn how to walk on a lead the proper way?

Stay down and keep us informed.

ImMaggieMae

Jo, continued prayers for you, your husband and now your son. This all sounds like a bad dream, doesn’t it? The fact that your condition happened so quickly is really perplexing. I keep thinking it has to be something else that could be fixed quickly. Isn’t pulmonary fibrosis something that usually happens slowly over time? I hope you can get a hospital bed in the next day or two. Trying to run from one place to another is stressful in itself. I will be thinking about you and praying that the medical system gets this figured out quickly.

M1

Hope your strategy works Jo.....please don't push it too far. Watching tv in the morning sounds like a good distraction. Great idea Iris!

harshedbuzz

@Jo C.

I am so sorry to read your updates.

I do hope your son responds to the new treatment approach and can get back to his life. He sounds like a great guy who maybe he takes after you. Vasculitis is tough generally, both mom and my MIL have had bouts with it. MIL had the form formerly called Wegener's (mostly respiratory issues) and mom had giant cell (with some vision loss). Mom's rheumo says vasculitis is like a terrorist. I agree.

I hope you can take it easy until a bed is available for you. It is crazy that direct admits are such a rarity. It makes no sense to subject someone with a flare of a chronic illness who is mostly isolated at home to the nest of contagions that the typical ED is.

Prayers for you and your family.

HB

Lorita

Jo, electronic guardian angels! I like that and have experienced it all during the 15 years I've been on the forum. We're like a family without really knowing each other. Iris is right- rest is most important right now and we all know you are not a lazy bum! Many nightly prayers for both you and David. Rest well.

Cherjer

https://alzconnected.org/discussion/comment/189262#Comment_189262

I am so sorry to hear of your health issues and now the worry about your son. Could you pm me about where you live and perhaps I could be of some help. I am in Orange County, CA

loveskitties

Dear Jo C.,

I hope that your silence means you have gotten into the hospital for all those tests, and that the doctors have been able to come to some determination as to a course of treatment to improve your condition.

Prayers also for your son David that he recovers well from his recent stroke and can also gain improved overall condition with treatment.

Know that you are never far from the thoughts and prayers of this your "virtual family".

Mint

🙏🙏🙏💛

loveskitties

moving up

JeriLynn66

🙏❤️🙏

M1

Sending thoughts and prayers. The silence is ominous and I am worried for you. David and Bill too....

White Crane

Praying for you and your son. Hope you were able to get the testing done that you needed.

Mint

JoC you and family in my thoughts and prayers. Know this is not easy. 🙏🏻💛🙏🏻💐

Marta

Thinking of you and your family.

ronald71111

Jo C, just to let you know that I keep you and your son in my daily prayers!

Ron

Iris L.

Jo C, I hope the doctors are examining all etiologies, including reflux. You and your family are also in my daily prayer.

Iris

Kibbee

Jo C - Thinking about you and hoping things are going well in your search for answers and treatment. You are an important member of this group - you are always been ready to assist us with information and support. I hope now that you, and your son, are getting the help and assistance you both need.

jfkoc

thinking of you....

BethL

Jo, I am concerned about you, Bill and David and you are in my thoughts and prayers. Truly hope you are getting treatment that will help you to feel better/breathe easier.

ImMaggieMae

Jo, thinking about you and hoping the doctors are finding some solutions to your breathing problems.

Buggsroo

Hi Jo,

I am sorry about your diagnosis, I hope you can get more answers as to how it has happened. I used to take prednisone when my asthma got out of control. It is a great drug but it can wreak havoc with wanting to eat.

I want you to know I appreciated your kindness to me and I am sorry for what you are going through. Hopefully there is a good puffer to help you with the shortness of breath. I hope things will look better soon.

Your Canadian friend

telinde

Hi Jo. I am so deeply sorry to hear your news. You have been my cheerleader and shoulder throughout my recent back surgery. I hope I can serve a small support to you. I am praying for you, your son, and Bill. I have put all of you on our church prayer chain too. I hope you get answers soon, and am hoping they find a way to control it. Stay as strong as you can. Joan

Jo C.

Hello dearest guardian angels: what a whirlwind! Thank you for your care and prayers.

As I was finishing my last Post to you, it was about 9:00 p.m. and the phone rang - there was a bed for Direct Admit! Needed to be there in two hours - off we went and made it. I discharged home the 29th; a weeks' stay with me in bed . I was astonished to find that I had a one bed hospital room - great privacy. From there was one huge whirlwind - the blood gathering club of vampires were the most insistent - each day; tubes and tubes and tubes.

O2 continuously ordered at a low level; that astonished me and on 40 mgs oral Prednisone daily; I started with 60 IV. I did NOT get an academy award for Pulmonary Function Tests and failed even doing the six minute walk. That scared me silly. Poor Respiratory Therapist trying to run the tests and getting me pushed to BLOW BLOW BLOW BLOW BLOW . . . . ad infinitum; I failed her. Just only got my eyes uncrossed from the efforts. Embarrassing.

Doctors and doctors; lovely group - seems my lungs are indeed compromised and it is out of nowhere; never smoked, no chemicals, no known exposures to cause this . . . only single thing different for my history was my COVID vaccinations. Some labs which had to be sent out to other labs are not yet back.

The MDs decided against lung biopsy; they did not feel that a biopsy would be helpful. Diagnosis at this point still stands a Ideopathic Pulmonary Fibrosis - an ugly progressive condition. However; my primary Pulmonologist is leaving no stone unturned; he is looking at and ruling out a host of other possibilities.

However; me who never ever has had such a problem has been sent home with an oxygen concentrater as well as a tiny portable for use in the car. I still feel stunned; how could this have happened; but it did and must be dealt with. Nothing like a nasal cannula to complete a wardrobe. If I am sitting still at rest which is most of the time, I do very well and they have me using 2 liters of O2. However; if up and moving around, most unpleasant and ramp up the O2 to about four, but am soon gasping like a caught fish anyway. There is also a lot of grief involved in this, that caught me unaware.

The hospital staff; RNs, Patient Assistants, Physicians, etc. from two floors kept coming to visit; I felt not only cared for but cared about big time. I miss them sorely. Even one MD who is in pulmonary, each day came to visit just socially; it has touched me deeply and brings a few moist eyes - I miss all of them. I had known none of them before the admission. Now like old friends.

Where this will go from here, that is a question. Am going to start Pulmonary Rehab a bit later which will be low and slow as I am so compromised. Sure wish I had a Respiratory Therapist in the family to ask questions of. The large O2 Concentrater is unpleasant. No lights on it; no remote control of course; it huffs and puffs and moans . . . hard to use as even adjusting liter flow has no light - need a flashlight, bent way over and magnifying glasses. Miles and miles of tubing which I keep getting caught in the wheels of the walker I now need to use. Drats and more drats - a little stroll to the bathroom no longer a simple event and post such a trip has me sitting on a chair catching my huff and puff breath which takes five to ten minutes.

And dear David. He has a moderate ataxia left side as well as weak left arm/hand. He is doing therapy and is desperate for recovery as he needs is limbs for work installing and maintaining large radiology equipment. I feel so bad on his behalf and he is alone. How I wish I could be with him and help.

If anyone lives in north Orange County/South LA County and knows of a competent person who does help in the home, I sure would like to hear of her. We live between Cerritos and Knotts. I would like to have someone two to three days a week for light assistance during the day.

So here I am; the immediate goal is to be able to get to the bathroom by myself without wrapping myself in miles and miles of cord and then to repeat backwards reverse again and having to gasp and puff and wheeze and make my belly go up and down in response to the beat while fighting cord and feeling very sorry for myself.

Once again, so grateful for all of you guardian angels sending your care down the electronic tether and moonbeams. We shall see where this goes. Also would like to ask M1 how things are going and how your med issues are doing - still anticoagulating?

Many hugs and much love to all,

J.