M1 and Jo

Ed1937

M1, I think about you quite often, and I'm wondering about the latest concerning your recent physical problems.

Jo is another, and I don't think she has posted in some time because I've read several posts, but I don't see anything from her. Does anyone know what's going on with her?

Good thoughts and prayers for both.

M1

Thank you Ed and always good to hear from you. I too am very worried about Jo and am afraid it does not bode well that she's not posting.

I have spent literally all of December getting various cardiopulmonary assessments and spent the entire week at our tertiary medical center last week getting a second opinion. The news from that was encouraging and they are not recommending surgery, which is a huge relief. I did have some heart muscle and valve damage from the pulmonary emboli which will have to be monitored, and (no surprise) I am very deconditioned from having been so debilitated for four months. But they've given me the green light to try to pick up my activity as tolerated, and to go ahead and see about my back, which remains a limiting factor. Unfortunately I have a feeling that is likely to require surgery also, but we'll see. I'm not thrilled about life-long anticoagulation with Coumadin, but I'm not the first or the last...my uncle did it for fifty years.

You are kind to ask. I feel a bit more hopeful than a few weeks ago, which is good.

Have you named the puppy yet?

And will end with my own thoughts and prayers for Jo, her family, and all on this forum for 2024.....

harshedbuzz

Hi Mayor @Ed1937 .👋 It's always nice to hear from you. Thanks for asking as I have been thinking about @M1 and @Jo C. as well. I think often of them and of Jo's dear son.

M1, I am glad the second opinion brought some clarity to the situation. Being in treatment decision-limbo is difficult for anyone, but given your background and all on your plate it sounds hellish.

Here's to a more peaceful 2024.

HB

Jeff86

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.

loveskitties

M1 glad to hear things are more positive than first thought regarding your health.

I too am concerned that we have not heard from Jo C recently. She and her dear son are also in my thoughts and prayers.

May the new year bring better days for all who are beset with other ills while caring for their LO.

Mint

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.

Ed1937

https://alzconnected.org/discussion/comment/193089#Comment_193089

M1, I'm glad you got some encouraging news. Not requiring surgery has to be a big relief. I know you've got a ways to go, but it seems you have a lot of hope now. I hope Jo has a little hope now too. I'd love to hear from her.

The pup's name is Suzie, and she's a handful. It's funny how quickly you forget what it takes to raise a puppy. But it's worth it. I have her to the point where she will sit when told, and she's picking up on the "down" command. The easiest thing she learned was that she can run faster than I can.

mrahope

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

M1

Thanks to all for the good wishes -and Sayra i didn't know of your ordeal, glad you're okay. I go for pulmonary follow up this week and i plan to ask about rehab then i have a great treadmill which i love, but the back is going to be the limiting factor there.

Ed, Suzy is perfect. My daughter is a Susan...one of my favorite names.😍

JDancer

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

GiGi1963

M1 and Ed I was happy to read your posts today. Hearing from each of you is like a warm, cozy blanket while we all go through mostly lonely days. I hope your health improves and Susie keeps you in line, Ed. Happy New Year.

MN Chickadee

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?

M1

She is fairly stable at the moment. She still will not let anyone else help her shower or change clothes, so this has become our Sunday afternoon activity after a "picnic" lunch. Once a week seems to be fine, especially in the winter. I know at some point I will need to try harder to involve the care aides, but i just don't have the energy at present. Her language abilities have deteriorated markedly, but she deals with it with humor, and if anything has become sweeter to me personally, telling me over and over how much she loves me and wants to be with me. Children's art projects she still enjoys, and visiting with the cat.

Jo C.

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.

Ed1937

Jo, it's so good to hear from you, but I'm so sorry for everything that's happened. I understand that you're really having a hard time just writing a bit, but I guess the news is somewhat better than I expected. I'm thankful for that. I know it's asking a lot, but I hope things can turn around for you soon. You have really been missed. Know that you are in my prayers, and those of many others too.

Jo C.

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.

Iris L.

It's so good to hear from you both. There is a time being ill when you are able to function okay, then comes the time when you have more trouble. You have to focus on your treatment, step by step. I continue to pray for you both and for David and hope for strength and healing.

Iris

M1

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....

Mint

Good morning JoC

Can only imagine the prednisone effect. Had to be on a low dose for six days in July and even that had some side effects.

🙏🙏

JeriLynn66

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.

ThisLife

I'm glad you are doing better. I hate prednisone and its reactions. ((((Hugs))))

Jo C.

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.

Hoot619

I got back on here to find out how you 3 were doing.You all have been in my prayers and thoughts. Hopefully all will get feeling better. I'm still so very thankful I found this forum when I really needed it. Hoot or Ken

Ed1937

Hi Hoot. You've been on my mind too. I almost started a thread to see if anyone heard from you. How are you doing?

Buggsroo

Hi Jo and M1,

Health woes can be so debilitating but you both sound positive and I hope the problems will lessen soon. I took prednisone when I would get the flu or a cold because I have asthma. I hated the side effects of it. Hang in there Jo.

Hoot619

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

Jo C.

Thank you everyone; your caring means a lot - really and truly.

HOOT!!! I was just thinking about you the other day up there in the UP; and here you are! You must have heard me thinking. Glad you are doing okay and also what a dear and kind thing to do taking in a friend in need. Let us know how you are doing; we do think of you.

J>

mrahope

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.

M1

Thanks Hoot--you are indeed kind to take your buddy in. Glad to hear from you. I understand the cooking issue..face it myself now. Made a pot of soup to get me through the cold spell but after four days I'm tired of it!