M1 and Jo

I’ve also been wondering how you were faring, M1, with your medical issues. Sounds like a substantially better situation than you feared at first, even if it’s not exactly optimal. Wishing you health and peace in the new year.

I also am concerned about JoC.

M1 don’t know if you feel PT would be appropriate for you or not. Don’t know if you are aware or not because I only talked about this on Lorita's thread. Was septic in May of this year from a kidney stone and could have been one of the statistics. I was unresponsive for about 41/2 days and in hospital 10 days. I made a miraculous recovery. Had an ejection fraction of 30% on initial echo and was low normal at discharge. Cardiac told me i would always have to be on medications, but was only on them for 2 weeks post discharg

You have been dealing with a lot for quite a period of time. I was really only down for that 4 1/2 to 5 days. At the hospital, I was having no trouble walking quite a little distance, each hour, and I could even walk in the stairwell without any trouble a couple of days after i woke up. But then of course, I always came back and either just sat in a chair or went to bed. They brought all my food, pills, cleaned etc.

I’m glad my physician there had the foresight to order home health care for me. I didn’t think I would need it, I thought I was ready just to go home and be normal. When I got home, I quickly found how deconditioned I was. I had no shortness of breath which you’ve had to deal with, I had no chest pain. I don’t know if you’ve had to deal with that or not. What I quickly found out was though my muscles and brain had taken a hit and they had not recovered yet. Had no trouble with my memory. It was great, but I definitely caught on that i was dealing with some brain fog. In the hospital I was totally unaware of that. Took me about three weeks to feel that it was safe for me to drive.

First, the nurse showed up from home health care, and she was amazed that I answered the door. She did her assessment and said that I would not qualify for her but I would qualify she felt for physical therapy. I had planned to go flower shopping the next day and put out flowers. She discussed this with me and she told me I can’t do this that if I do things like this that it will set me back. I didn’t really believe her. I still planned on doing my flower shopping the next day.

Then the physical therapist came, and he reiterated everything that the nurse that said to me. He told me for each day that I was not aware, it would take me one week to gain what I lost that day. That meant it was going to take me 4 to 5 weeks to recover. I know they work with it all the time, he knew what he was talking about. So I decided I would have to behave myself. I had to learn that when I felt tired, I stopped and laid down and rested For an hour or two, and then I got back up and started again. Started noticing other things like when I would write my handwriting was not my handwriting. Paying a bill by phone made my head spin. At about week three I remember I had a pity party for myself I was somewhat discouraged, told myself I wasn’t trying that I had given up. When the physical therapist came again, I told her what I had done I said, but I’m getting over it. She looked at me and said that’s OK but you’re the best patient I have, you are doing great. It seem like things started going better and by week five it was just like all of a sudden I was totally normal could do anything I had ever done. It’s kind of interesting.

So I guess what I am wondering is if physical therapy would be of any value to you to helping to get reconditioned. They work with it all the time they know how to slowly work you back to normal they’re just a great asset. They are the experts. They only came once a week and basically they just gave me the plan for the next week and I did everything on my own. But they were the guiding hand that I needed and had the knowledge that I needed to keep me encouraged and moving forward. They helped me to know what to expect, how to listen to what my body was telling me, and for the most part it kept me encouraged. Just a thought, hope you get back to feeling better soon.

Glad you are in the recovery process M1..I hope the New Year brings no surgery and greater peace.

M1- I appreciate you find time to post kind and informative replies while dealing with your serious health issues.

Also thinking of Jo. So much on her plate right now. M1 how is your partner doing? Has she come to accept personal care help from the staff or have you been able to return to your visits?

Dear friends, thank you for thinkng of me; it; truly means a lot. I have not been online for quite some time. I am delighted to hear M1, that you will not need surgery; great news.

As for me, I am worn down by the daily Prednisone. Gosh awful side effects; I have developed an entire list of them, and so tired and also a bit weak feeling which of course is also some of its effects. . It started IV at 60 mg in the hospital; and then went oral to 40 mg, then 30 mg per day. I am now at 20 mg per day orally and doctor does not want to lower it any further or stop it - (I have been diagnosed with an abrupt onset of Pulmonary Fibrosis) - absolutely no symptoms until all at once . . . .

Evidently the Prednisone is to keep my lungs from further effect as much as possible, but it is NOT a happy med to take and it leaves me just flat as a fritter as the old saying goes. I am breathing great at rest; but when up and moving about, I tend to have a bit of a "gasp" response - am breathing okay; but the sound effects accompany me most of the time. I have 2 liters of O2 via nasal cannula - and find that if I remove it, I am still fine - I do monitor my Pulse Ox and Heart Rate several times a day and am doing very, very well on that front.

It is just such a stunner to have this happen out of the blue when I had been doing fine with no lung issues whatsoever. Of course one of the side effects of Prednisone is big time insomnia - not a wink of sleep no matter what I do or interventions . . . . so that lack of sleep is also affecting my energy, etc. I will take a short nap or two during the day even if I do not mean to. I am certainly not appreciating the Prednisone side effects at higher dose for an extended period of time. Oh gosh, the list of the effects. I will endeavor to make the best of it I can, but I feel as though I have aged decades in just a month due to lack of energy

Life happens and we do the best we can = and also remain grateful for so many blessings.

J.

Forgot to update on son. He is starting PT this week. He has weakness of left side from Vasculitis based stroke. He is a healthy male who follows really excellelnt health, exercise and diet, so that was a shock to have happen.

He is alone in his house; he works hard at keeping it up and he also cooks. He is in the midst of a kitchen reno - a pipe burst in the kitchen wall and flooded all the cabinets, floor, etc. Thank goodness for good insurance. All the while he has a weakened left side which makes doing things more difficult. Kitchen is all torn out - what a dreadful thing to happen in the midst of all else.

Just so hope he does well with P.T.; he needs to be able to recover to get back to work. He installs and maintains large radiology equipment in med centers. Really concerning.

Thank you for asking and especially thank you for your prayers,

J.

Jo I too am so glad to hear from you---I can only imagine the prednisone, I have never liked taking it in the past even for short periods and of course you had no choice here. Sounds like it has done its job though, so for that I am grateful. We are thinking of you and your son all the time. Hang in there and update us when you can....

Jo C. I keep you, David and your husband in my prayers daily and will continue to do so. You are dearly loved and missed here.

For me, bei;ng on high dose Prednisone for nearly three months, I have significant weakness and fatigue; a bit of a change in visual clariity; significant insomnia (hard to deal with all night), lightheadedness and occasional dizziness; some breathlessness not connected to O2 as Pulse Ox is excellent at the same time; feeling very unsettled at times; thick headed feeling at times, very easy bruising, and occasional emotional impact which I watch for and am careful not to give it space in my head. There is more, but those are the most persistent issues. Sometimes whatever will be will pop up wiithout warning which is not appreciated and I must stay aware of the "whys."

Over the years, I have twice had low dose pred for a short period of time - about five days - had insomnia, but none of the other issues as it was short term use. How I wish that were so now.

Sure would like to not have to take that drug and also concerned about effect on adrenal glands. Fuss and bother; things happen and we do what we must . . .

J.

M1 and Jo C. , I'm doing pretty good I took in my 84 yr old buddy last week since He can't live alone anymore. Keeps me on my toes a little. He had been falling a lot, about 3 months ago broke his neck all ok now. Then circulation in legs but they fixed that . Has a pacemaker now and has improved a lot. It is easier to cook for two than just me. Hope you three are getting a lot better. Hoot

Sorry to hear about your health woes, Jo. Prednisone is a BEAST. I hope the taper goes well and you are eventually freed from this. Keeping you in my thoughts.