I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: UkrainianTracksuit on January 13, 2021, 03:19:43 AM
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My husband went for blood work last week. It was a general requisition for a CBC and basic stuff. He had pre-surgical blood work prior and I guess that looked fine because no one said anything.
Well, now, his GP called to say (according to my husband) that "all his blood cells are out of whack." I asked for specifics but he didn't have any. :stressed; They've referred him to a hematologist. They are going to book him for a bone marrow aspiration and biopsy. That didn't blow my mind too much because I know they just want to see if it is healthy and it is sometimes done for basic issues like anemia.
The question that got me was that they asked him if he had a family history of leukemia. He said no, but then realized a cousin had it (bone marrow transplant and recovered now.) Not exactly a family history, but you know.
So wtf is going on here? Not like anyone knows but the unknown and his male lack of specifics has me worried.
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Wow. I don't like the sound of this, UT. Hope they can provide you with more details. Seems like a bone marrow biopsy is an invasive test and that they'd have good reason to want to perform one. Maybe as a "process of elimination"? A Hematologist will get to the bottom of it. My husband was once sent to a Hematologist and his whacky labs at the time turned out to be nothing. Or at least not anything on the scale that they were thinking. Maybe that's what they are doing in your husband's case, just wanting to be thorough. Is the cousin that had Leukemia a first cousin? Just curious. Altho I don't know them I apparently have 2 first cousins who were also diagnosed with auto-immune disorders and I thought that interesting since there was no talk of any other familial history of such disorders. Of course, generations ago people discussed their various illnesses much differently than they do today. Back in the day people either had no access to a doctor or couldn't afford one and in a lot cases, didn't think they needed to see one. They just went about their business as if nothing was wrong and kept going until they couldn't and by then it would be too late to do anything about it. Times (and people) have indeed changed. So I am glad that your husband is actually having things looked into and by a specialist. I'll be thinking of you. Please let us know what you find out (if you want to share it). We're here for you.
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Hello Ukrainian Tracksuit,
I am hoping, that some mistake or misreading occurred with your husband's blood work last week, especially since his pre-surgical blood work not long ago seemed perfectly fine ?
Hopefully the doctors just want to make sure ... and I keep my fingers crossed and hopefully "things" go alright for both of you.
Take great care and best wishes from Kristina. :grouphug;
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Thank you for your thoughts and kind words, Pea Tea and kristina.
It would be really nice that his statement that "all his cells are out of whack" could have been expanded upon. Dealing with doctors, I know they must have mentioned the basics (red or white) or even leukocytes when- God forbid - leukemia was mentioned. Yet, when I asked "which ones?", he gives the caveman answer of "all of them."
While I truly hope it is a fluke like kristina mentions, I also know a bone marrow biopsy wouldn't be called for the heck of it. I am siding with Pea Tea right now that it is a process of elimination. One thing I forgot to mention in the original post was that a Vitamin D test has specifically been ordered (besides other blood work) and anytime I look up hematology and Vitamin D, oncology topics come up.
And yep, Pea Tea, it was a first cousin, but at the time everyone just chalked it up to the fact he lived/worked in the one of the most polluted cities in the world. They had to move out of there first so that he could get the bone marrow transplant, recover, and then somewhere "better." That sounds so easy to a lot of people, but it was a rough time for working class Russians. You do mention a really interesting point about family histories. I remember when my relatives lived in multi-generational housing that they spoke about health conditions in this person and that. That died out when the elders passed, but through extended family, I've had a handful of (older) family members also on dialysis and a second cousin with a kidney transplant. Never met him, but hey. My mother has gone as for to say if they had genetic testing back then, she wouldn't have got pregnant. :P
Anyway, I've hold him not to tell his mother until he knows for sure. That means after he gets booked for the biopsy. This will make me the evil one at the end of the day, but it is better than making her worry over his vague information right now.
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What? WHAT?????
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I agree with you, UT. Better to wait to tell his mother. He doesn't need (and you don't either) any added stress from a worried mother (and any other family members she tells) who will probably ask a million questions that he can't answer right now. I know this won't sound right but hopefully he is just anemic and it's nothing else. Maybe because he is Russian and a first cousin had Leukemia they want to rule it out. And over time a low Vit D level can affect bones so I imagine when it does that it can affect marrow. For instance, with my having Sarcoidosis they also have to watch my Vit D levels, plus of course the Prednisone I've been on for over a year can start affecting my bones and marrow. And speaking of Prednisone, does hubby take any kind of steroids for muscle building? Sorry, didn't know how else to ask that, you don't have to answer if too personal. But we all know what steroids can do. These days I am as white as a sheet...I haven't been able to even walk outdoors and I know my Vit D level had been low months back. I was on prescription strength but need to follow up and haven't been able to yet. I fear what the low level (and prednisone) might be doing to me. Is hubby pale or gotten more pale? I imagine a lot of people have just from being on these Covid lockdowns and quarantines. Probably by next year the whole world will need some extra Vitamin D. The beaches and parks are going to be crowded...
Please keep posting and tell us how you are doing. Sending positive thoughts and prayers your way.
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Agreed about his mother. She would blow the whole situation out of proportion. She'd demand answers and there are none at the moment. You know, it's -43 C where they are right now and I think she uses drama to keep them warm.
I'm in line with your thinking that I am hoping it is something like anemia or something else not so bad, but I guess still bad enough. It's odd that I'm hoping he has an infection even though I know that can lead to sepsis (which is deadly). We should get a call any day now for his appointment time, but we also have new stay at home/state of emergency orders due to corona, so I have no idea. It's not funny, but it is, in that he is scared the procedure is going to hurt.
Nope, he doesn't take any steroids for muscle building or any supplements. And thank goodness, if he ever was one of those "bro types", I'd have divorced him! He doesn't take any medications as he has been healthy as a horse. That's often how some of the great horses have gone down though. He does drink regularly, but not to "problem drinker" limits. Since legalization, he smokes pot from time to time too. And it's totally fine to ask these questions!
And yep, he has been cooped up a lot so he is paler than usual. Usually, during the winter, he has his winter sports that get him outside, but even that is not possible because his shoulder is healing. And to be honest, it is taking forever to heal, even the incision wound. The other weird symptom he reports is that his mouth tastes like salt all the time. On its own, not a big deal, but that also hints at oral bleeding, and we all know what they say about bleeding gums and leukemia. Not going to jump to conclusions though.
Thank you for the kind thoughts and prayers. Heaven knows we need them.
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Well, tomorrow is the big day. Booked for his biopsy and aspiration at the hospital tomorrow. Sucks that he has to go alone because of corona. Hopefully, though, that means answers will come soon.
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Best of luck wishes to you both from Kristina and take good care and hopefully the biopsy goes well! :grouphug;
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How did things go, You Tea?
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Hehehe, You Tea! Love it as long as it's not You Tea Eye!
Thanks for asking.
It was rougher than I thought it would be although I completely understand the procedure. How dumb of me.
He obviously misinterpreted the instructions or didn't understand them. He drove there when he should have had a ride. But that's a headache for another time...
He had IV sedation so he's out like a light for now. Tylenol for pain. No bathing for 24 hours. We have to be on the lookout for heavy bleeding (we were warned it is a distinct possibility with his CBC results), drainage, worsening pain and a fever. He has to take is really easy for a couple days, but then a general take it easy for a week.
So, a week away from physiotheraphy for his shoulder. When it rains, it pours. Ha!
And oh, more blood was pulled. Hopefully the results come sooner rather than later and this is all just one big giant non-cancerous or "nothing serious" medical mystery. My nerves can't take it. :P
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I'm glad he made it back home in one piece and is now in recovery mode. I hope there are no nasty side effects from the procedure.
But, doesn't this seem so, well, random? I mean, this has just come out of the blue, you know? I'm still rather shocked by all of this, so I can well imagine what YOU must be feeling! I am REALLY curious to find out what's going on, if anything.
I hope his physiotherapy is helpful.
Thanks for the update, and keep 'em coming.
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Yes, it IS indeed so very random and out of the blue. That's why I hope it's all just a big fluke in blood work results.
At any other period of time, I would think, "Well, he doesn't go to the doctor at all" so while it would be a shock, it wouldn't be so...shocking? It's more of a shock because he had indeed had pre-surgical blood work to check clotting and platelets. That had to have been "normal", right? No one said anything.
It's just when he went to his GP for a wound check-up/general check up for the first time in 500 years. I think he's only seen this GP twice (maybe three times?) since his time in the country. He didn't feel doctor appointments are necessary if you feel fine.
To be honest, I don't know what to think at all. Half in the camp that it's all a big mistake and the other half in "I hope it's nothing serious and since he doesn't have a lot in his medical file, they just want to narrow things down."
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It's been a month with no followup. What happened?
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First of all, thanks for checking in. As well, thanks to the special person that checked up by sending a PM.
I do apologize for leaving this all up in the air. Not that the internet needs to know :P but we did have some marital troubles where my husband left the house for a couple weeks. Long story short, he disregarded my wishes and told my boss off for overworking me. I told him that was NOT the work culture or the gender culture here where a man speaks for a woman, but that was like talking to a rock. So, we were at each other's throats to the point he stormed off one day. It's all good now though. But, I didn't have the energy or drive to talk about him...
Yeahhhh....
Good news first: No leukemia. Absolutely nothing oncological related at all. My husband did have a freak out moment though because his meeting at the hematologist was a day when the waiting room was full of cancer patients.
However, he did receive a diagnosis. It's not a serious one, but still, it is something. He has severe chronic inflammation that has been given the diagnosis of polymyalgia rheumatica (PR). Because of this, he will have to be followed by the hematologist and a rheumatologist. It is a bit of an odd diagnosis because it doesn't happen often to people under 50 and he doesn't have any symptoms besides muscle pain. We always thought it was simply wear and tear of the body.
The funny thing is that this does manifest in blood work by wonky white cell counts and it can be confused with cancer. No one particularly knows why it happens, but genetics and environmental factors are the biggies. Environmental factors have been singled out here as he did check off some boxes. Mainly, he had a bad case of osteomyelitis in his past life due to a wound, and sometimes virus/bacteria can kick off that immune response.
The secondary aspect of this is that a lot of people with PR are also diagnosed with temporal arteritis. This is more serious out of the two. He has to have follow up tests but they are not a priority because he isn't even close to the age that it shows up (around 70). But more on that later.... ::) ::) ::) ::)
He is also significantly Vitamin D deficient. That's probably my fault. :P
Anyway, the treatment for PR is low dose steroids (prednisone). He refuses to take them because of the side effects and hasn't taken a single dose. To get things under control, the doctor prescribed a high dose, and then he would be on a maintenance of 20 mg/day. But, my husband is one big no-no-no when he read all the things that the steroids could interfere with. This has led my husband to belief that perhaps the doctor doesn't know what he's doing and his body is this way because it has been through the mill. Granted, I give him that point, but the inflammation levels are consistently high.
The other thing is that the risk for temporal arteritis is extremely low right now, but it has been requested that he have an eye exam and then referral to an ophthalmologist get a baseline right now. Why? Something like a quarter of people with this disease go blind. My husband won't go. He says that when he went for his sniper recertification? updating? (no idea about these things, and he doesn't even use those skills here) his eyesight was perfect, so what would change in a matter of a few years?
He does take his Vitamin D supplements so there's that. Yay.
I'm glad the big scare is out of the way, but now it's just dealing with a nagging and chronic thing.
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Years ago I was sent in for a echo cardiogram since I was overweight and starting a diet, during the test more and more people came into the room and they kept looking at the screen. It turns out that during the test first they find the gall bladder then they find the heart. Well my gall bladder was difficult to find since it was full of stones. My doctor insisted I visit a surgeon ASAP. Now I was nervous about all sort of thing bu I went to the surgeon who look at the test and said to me “does it bother you” I said no. He then said “come back when it does”. Thirty years later still have not been back. The one thing I have taken from this is as you age any test will find something strange. Now a days l expect every test to bring a dire result. But with the exception of two heart attacks and kidney failure all the dire test results have not effected my life.
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You're never obligated to share anything with us, You Tea. :cuddle;
I'm glad things are better between the two of you, but I am sorry that your husband has to deal with anything chronic. That's just a very strange diagnosis, and to be honest, I'm not really sure what it means. I will have to read your post several times before it sinks in. Thank you for the explanation.
It is in situations like this where spouses just don't really know what to do. Do you worry on your spouse's behave when s/he doesn't seem to want to be vigilant about their health, or do you just let it go to save yourself?
Chronic inflammation scares me. That can be the genesis for all sorts of degrading effects on the body, but I can understand not wanting to gobble down prednisone for a condition you can't yet "see". Then again, we transplant patients gobble down all sorts of stuff to ward off rejections we cannot "see", so I have a biased opinion on the topic.
Thank you for the update. Again, you are not obligated to provide one.
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Hi MM,
To be honest, it doesn’t really mean much or change his life at all. If he chooses to do nothing, he just has to live with muscle pain and stiffness. It’s just a case of the immune system “attacking” healthy tissue, without any real deformity (like rheumatoid arthritis) or effects on the organs. The treatment (prednisone) just knocks the whole thing into remission, so no muscle pain or tenderness. A better quality of life.
This has been going on for awhile, but we overlooked it because well, he has been sporty all his life, and he’s getting old. :P He’s not 50 yet, but he’s closer to it than a young man. :P
For the last months though, he complained a lot that his buttocks was tender, sore, and I just laughed at him.
I didn’t know that was a main muscle group for inflammation. So, with his upper body, hips and blood work, I guess he really was sore. :P
To be honest, I’m not worried about him. He can make his own decisions and it’s not life or death. If he wants to have chronic pain and stiffness because he doesn’t want to take a common medication, that’s his decision. Your view is correct on this — we don’t know what these mysterious drugs do, but they do something, and the fact we are well enough leads to our judgement. As well, doctors mostly know what they’re doing! :rofl;
All I can do is cook him salmon and lots of oily fish.
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I know it isn't funny, but I had to laugh. Your guy is almost a caricature of the tough but stubborn Slavic male. He's been active all his life in hockey and the military, and that's his identity. As for now, he's in denial. But if his condition worsens and he finds he can't play hockey without popping a few pills, I bet he ends up taking the pills.
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P.S. Tell him he gets you fired, you'll make him eat a hockey puck.
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P.S. Tell him he gets you fired, you'll make him eat a hockey puck.
I'm actually surprised that I didn't get fired.
In the grand scheme of things, I understand why my husband interfered, but it wasn't the right thing to do. Last year, I ended up being hospitalized from lack of sleep and overwork. The same thing was creeping up and my husband told me that I had to tell my boss to spread out some of the responsibilities. I wasn't quick enough :P. I had to deal with a contact in Jordan (which is a pain to contact by telephone btw), at their best hours, and the guy on the other end of the line was a total... well, rude person. That was the last straw for my husband.
My boss has significantly cut my work load :P and I will probably be on the way out by summer. My husband doesn't understand that being fired looks bad on a CV.
Your assessment is right on. He's in denial and this conflicts with his identity. Not that he is at mid-life crisis level yet, but he doesn't want to lose chunks of his hair, get a moon face, or get fat in general. He's most concerned about breast development as well as loss of sexual stuff. I told him that that's not necessarily what will happen, but he's in his mental man cave now. He won't listen. ::)
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Hello UkrainianTracksuit,
Many thanks for your update and I am very sorry about the diagnosis. Hopefully the soreness and muscle pain get under control with the right medication? But ... since this inflammation might be a result of a flare-up, I wonder, whether your husband is under some stress at the moment? I have been reading that stress is often a factor to bring-on flare-ups of the disease and, in order to avoid flare-ups, special personal ways need to be found to find out ways of stress-avoidance as much as is possible and to try hard to find ways to avoid stress as much as is possible.
I wish you both all the best and send my kind regards from Kristina. :grouphug;
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UT, I got curious and did some research into your husband's diagnosis. It certainly hasn't made me into an expert, but a thought did occur to me regarding the use of steroids as a treatment.
The kidney disease I have, FSGS, is essentially a chronic, inflammatory disease. For whatever reason, my kidneys become inflamed and then scar over (the "sclerosis" of the name), and the scarred tissue cannot filter blood. So, my kidneys eventually become just great big scars.
I was treated with cyclosporine, and it wasn't until I joined this group that I learned that most people are treated with corticosteroids, not with an immunusuppressant. I eventually asked my neph why he took this course of treatment instead of the steroid path, and he said he wanted to spare me the side effects of the higher doses of steroids that would be required. So, he chose to dampen my immune system instead of choosing to reduce the inflamation.
It makes me wonder if maybe a smaller dose of steroids combined with an immunosuppressant might work for your husband. (Just thinking out loud, here.)
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But ... since this inflammation might be a result of a flare-up, I wonder, whether your husband is under some stress at the moment? I have been reading that stress is often a factor to bring-on flare-ups of the disease and, in order to avoid flare-ups, special personal ways need to be found to find out ways of stress-avoidance as much as is possible and to try hard
Hi kristina!
You make an excellent point. My husband has a medium amount of stress normally as he travels for his job as well as all little things compounded. But definitely, during the pandemic, he is more stressed than usual. A lot of places that he would go to burn steam have been closed. As well, with his shoulder still in the "light work" phase, he hasn't been able to do some of his regular activities. Add in debating whether to sell the house and move! One thing rolls into the other, so while it may seem like small stressors, they build up. And you're right, it is a change of personal habits that addresses this!
It makes me wonder if maybe a smaller dose of steroids combined with an immunosuppressant might work for your husband. (Just thinking out loud, here.)
Hey MM,
You are right about this! In similar conditions, like RA and psoriatic arthritis, they do use immunosuppresants! Cyclosporine and azathioprine are used. Another biggie is methotrexate. Prednisone is prescribed because it is the cheapest and easily accessible option that addresses the condition, but it's not exactly a fun drug.
My husband reminded me that he took prednisone for a short round (like it was under a week) for a whole other matter (and acute, rather than chronic) and it was not pretty! But, that was like 50 mg. He should have a chat with his doctor and just see what his options are... I mean, there have to be alternatives, such as those with an allergy to prednisone?
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As well, with his shoulder still in the "light work" phase, he hasn't been able to do some of his regular activities.
Hello UkrainianTracksuit,
Does your husband receive medical assistance for his shoulder?(scarf)
Of course, I am not medical and don't know any details, but I remember when my husband dislocated "something" in his shoulder whilst enthusiastically approaching a difficult golf-shot, he used as healing-assistance anything that might help to create constant warmth around his shoulder, including an angora-jacket-shawl (scarf) and this eventually assisted the healing process, which unfortunately took a very long time anyway ... but please ask your doctor first ... and I send you both my best good-luck-wishes from Kristina... :grouphug;
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Hi kristina,
Yes, my husband is being followed by a sports medicine doctor and attends physiotherapy for his shoulder. He has another couple months until it is fully healed and he can go off on his merry way. He has some sort of pneumatic compression contraption that he puts on it. I probably should pay attention more. :lol;
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Hello again UkrainianTracksuit and many thanks for the added information. I wish you both the very best of luck and hopefully your husbands shoulder heals well and I send you my kind thoughts from Kristina. Take care. :grouphug;
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UT, I'm glad you mentioned salmon because I was thinking last night that I'd read about anti-inflammatory diets/foods. I guess that's something he can actively do for himself that doesn't involve prednisone.
It will be interesting to see at what point the pain and discomfort will finally convince him to take medication for his condition. Everyone has their personal idea of what makes daily life just too uncomfortable.
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Small but a twisty-turny update.
I quit my job 3 wks ago. People think I am nuts to quit such a good job, but it was the right thing to do. My (former) boss, while skilled in the field, is a pompous old jerk. I'm not someone to take a mental health break or quit for mental health reasons, but the guy worked me to the bone. I dealt with it to the point I got exhausted and sick last year. There were quite a few little things that I just filed in the back of the brain too. But, the final nail in the coffin came when I stated my intent to transition to another field of work (same field, just a focus on sanctions, rather than general forensic economics stuff) that he made a snide remark about my husband.
That means, working from home has transitioned to just being at home. :P I recently was offered a short-term contract (8 months) so I'm not twiddling my thumbs though. But also, this means more time devoted to the man of the house. :P His presence/check-in at work sites is not necessary and he is doing his professional office duties from home. Since I'm not working, and less stressed, it's actually been good!
He has pain still, but in his same old spots. He says it is manageable, but I told him to think about the long-term effects of inflammation and how it will scar his muscle tissue. Does he want to be active as he gets older? What activities does he want to do in say, the next decade or so? He has to look after what he has now, get into remission, and then get back to normal. Stop being such a blockhead (but said lovingly). :P
The big "No" over prednisone stems from all the research that states it decreases testosterone levels long term. So, my husband images himself with boobs, moon face, tired, loss of sexual desire, and finally ED. The worst case scenario in all aspects. I told him even in the worst case scenario that all those things or one of them happened, he'd still be a MAN. It wouldn't take away from his past accomplishments and his character --- which is 110% not disgusting gym meathead. And to be frank, I told him that's what he sounded like, and that's a bazillion more times more gross than him growing a belly.
He's cautiously moving towards taking prednisone. He wants his testosterone levels checked (amongst other parameters that matter) and then have a discussion with his rheumatologist. A lot of that was checked in the recent past. Even in the post-40 years old years, his numbers were still very good for his age; like younger guy stuff.
I know that men have complex internal lives but I am totally out of my league with offering constructive criticism or insight for him here. This is man stuff. I'm just the one that eats his pay checks. However, I really hope that his little internal dialogues push him to take the damn pills, get into remission, and not be mobility impaired years down the road.
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Yes, that was indeed a twisty-turny update! :rofl;
I'm glad you're finding your time at home to be a positive experience. The lower the stress level, the better! Good for you for being self aware enough to recognize your work situation had become untenable, and good for you for having the guts to do something about it.
I'm glad your husband has been able to have the time to mull over using prednisone instead of being in a situation where he had to make a life altering decision in an instant. Sometimes you have to just get used to an idea and to let it tumble about in your brain. It's entirely reasonable for him to sit down and decide how he wants to have his treatment managed and then to discuss these things with his medical team. More patients should be pro-active and want to be a true "partner" in the management of a chronic condition. I always tell my tx clinic that I am the captain of my own ship. So, good for him. He seems to be making some progress in more ways than one.
It is sometimes hard to recognize that sometimes there is nothing we can offer in the realms of wisdom and experience. Sometimes a person's internal dialogue might not include us.
Thank you for the update! I is very interesting.
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Congratulations on the job choice. I’m confident you will make it work out to your favor. I don’t research prednisone side effects but personally at 5 mg I don’t notice the side effects you mentioned.
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but I told him to think about the long-term effects of inflammation and how it will scar his muscle tissue. Does he want to be active as he gets older? What activities does he want to do in say, the next decade or so? He has to look after what he has now, get into remission, and then get back to normal. Stop being such a blockhead (but said lovingly). :P
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UT, I am glad you brought up scarring with your husband. Once scarring occurs, that is that. It is permanent and debilitating. There is no going back. My right lung, airways and spleen are scarred because of inflammation caused by Sarcoidosis. I am breathing now as if I have just one lung. Prednisone not only helps me to breath easier by bringing down the inflammation but can slow and/or prevent further scarring and with the hope of going into remission. What's done is done but I am glad that I may stand a chance at remission. Your husband is young, active and otherwise healthy. He has much to look forward. Taking the Prednisone may only be temporary but scarring is forever.
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Small but a twisty-turny update.
I quit my job 3 wks ago. People think I am nuts to quit such a good job, but it was the right thing to do. My (former) boss, while skilled in the field, is a pompous old jerk. I'm not someone to take a mental health break or quit for mental health reasons, but the guy worked me to the bone. I dealt with it to the point I got exhausted and sick last year. There were quite a few little things that I just filed in the back of the brain too. But, the final nail in the coffin came when I stated my intent to transition to another field of work (same field, just a focus on sanctions, rather than general forensic economics stuff) that he made a snide remark about my husband.
That's brave and smart of you to do. That's just right. No matter how good of a job you have if the people around you cause you stress, it ain't worth it. I'm praying for you. Better days are coming.
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Thanks everyone for your kind words! Hopefully, something good does come out of it all in regard to work. I wasn't happy for awhile, but now I feel sorta free. To be fair, I know it is a privilege to say such a thing especially when so many people are out of work and struggling a lot. There are a lot of people out there doing jobs that cause them anguish just to survive...and here I am, proclaiming freedom.
MooseMom, in the beginning of remote work, I couldn't stand being at home with him! His sort of work took longer to transition to work from home (didn't know how his position would manage or if he could be moved to something else) so for some time, he was home watching tv, looking for lunch, asking dumb questions...and I had to work! :o
I learned from him that WADA lists prednisone as a "prohibited substance" so there's that other layer to break down with him. Dude, your competitive sporting days are over, unless it turns all Mike Tyson v Roy Jones Jr here.
Congratulations on the job choice. I’m confident you will make it work out to your favor. I don’t research prednisone side effects but personally at 5 mg I don’t notice the side effects you mentioned.
Hey iolaire, you may be the perfect person for this question. I know that you stated you took higher doses of prednisone (years ago) to manage your lupus flares. When you were on the higher doses, did you notice any side effects? Understandably, that is asking you to reach far back in your memory! My husband is looking at 20-30 mg.
Once scarring occurs, that is that. It is permanent and debilitating. There is no going back...Taking the Prednisone may only be temporary but scarring is forever.
Ah Pea Tea, my heart truly aches for you and this awful sarcoidosis. It's beyond stupidity to be arguing about taking prednisone for scarring in muscles when there are people out there in your shoes - taking it to stop scarring in vital organs. Truly, I hope you are feeling as good as you can be.
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Well, it seems like he will have a short run with prednisone whether he likes it or not. :P
Many years before he met me, his nose was broken. Personally, I like his nose. The bridge is a little crooked, but that makes it all so rugged. :P But between that, and inflammation, certain things are just impacting his quality of life, such as inability to taste food or smell. He puts adjika on his food for taste. The whole "loss of smell" related to corona is what made him take attention to it.
After a CT scan, an ENT surgeon called. The surgeon wants another CT scan ::) because it is all so crooked up in there, but as well, there is a bunch of inflammation. SO..the surgeon is going to put him on some prednisone, give a steroid nose spray to use as well, and then book him for surgery. The icing on the cake is that the surgeon is going to fix his nose! It's not a "real" nose job, but almost there!
I keep teasing him about getting a nose job now. :P But, the serious aspect is that he is going to have to take prednisone for a short term, and maybe he'll think it isn't that bad.
Final funny thought: it was a telephone consultation, but my husband got dressed up for it. :rofl; I was laying in bed having one of my semi-retired naps and I asked, "where are you going?" and he replied all huffy, "The doctor is going to call!" so I had a nice little laugh.
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Oh, UT! Even tho this isn't funny it is. Good luck to you both with the steroids. :rofl;
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I'm with Pea Tea on this one. LOL!
I'm really curious to hear how your husband copes with the prednisone. It might be a blessing in disguise; like you, I'm hoping he won't think it's so bad, and he'll be more amenable to taking it to address his underlying condition.
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Hello UT,
Thanks your the update and I love the way you describe the relationship you enjoy with your husband ! It is such a lovely read first thing in the morning and I thank you for it and want to send my good luck wishes with his "nose-job" ... Удачи !
Best wishes to you both from Kristina. :grouphug;
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Long time no update because nothing has really happened. :P As well, I am in some sort of funk.
Anyway, no prednisone yet for the man of the house, but it will be coming. It took FOREVER to get the second CT scan booked so that's what held everything up.
My husband just got back from the doctor and there are a few more hoops before the prednisone starts. He has to have an EKG (no big deal) and yet another COVID test. Once we have the surgery date, then the prednisone protocol will commence.
I feel as though he should just start the pred with his other doctor. Lately, he's complaining his hip is aching more than usual. If he's going to rely on the nose doc, that means we have to wait for day surgery, and with the backlog due to corona, it could be awhile.
He's in a bit of a mid-life crisis, I guess. Not that he's going out buying a sports car or new clothes, but he's like, "I'm getting old, aren't I?" Which consequently leads into the conversation of bad life expectancy for Russian men. (Which, as an expat, I think adds some years of life, but anyway). So, he's just laying in front of the TV watching Euro 2020 and barely working.
He's happy when the surgery does happen that he's getting 3 weeks off work for recovery. That's the most I learned about the appointment today.
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I'm watching Euro 2020, too, but at the same time, I'm doing all of my domestic chores. Can't hear a thing while I'm hoovering, though.
Thanks for the update, such as it is/can be. It sounds like things for your husband has come to an impasse. A covid pandemic can do that.
I hope you'll be able to survive his three week recovery! Let us know how THAT goes!
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Well, I am an idiot! Nothing new there...
The office of the nose doc called and a surgery date is booked. It's 2 weeks from today. We've been advised that if the pre-admit clinic at the hospital doesn't call by early next week, to call the office.
The prednisone has been called in and is waiting at the pharmacy. So, the experiment starts tomorrow. God help me.
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:rofl; UT: Good luck! Don't forget to stock up on snacks for him otherwise he might eat all of your food. And maybe put breakables like the fine china away.
-PT
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I feel as though he should just start the pred with his other doctor. Lately, he's complaining his hip is aching more than usual. If he's going to rely on the nose doc, that means we have to wait for day surgery, and with the backlog due to corona, it could be awhile.
My hip ached more than normal a couple of months after I stopped prednisone.
Turned out be prednisone induced avascular necrosis of the right hip necessitating a total hip replacement.
After being told "not a problem" at two visits, I told my doc something was wrong and he needed to order some kind of test. he heard hoofbeats and thought horse when it was zebra.
An X-ray indicated "suspected AVN" and an MRI confirmed it. You might want to get that hip checked. And don't buy "it takes years for pred to induce AVN". Mine only took a month of pred. Doc told me I set a speed record for his practice.
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He hasn't been on a prednisone protocol yet. It's literally just started so there's nothing prednisone induced.
The hip pain is from polymyalgia rheumatica....which is treated with prednisone, which he hasn't pursued yet. This round of prednisone is for nasal inflammation ahead of surgery.
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Well, we're right in the thick of 50 mg of prednisone and it is pretty unbearable. :o
The good news is that it has helped his aches and pains a bit so that's been one good part of this whole nasal endeavor. The bad news is that well...he is pretty unbearable for the time being! The only time of some relative peace was yesterday evening when he went out for his pre-surgical COVID test. Hmm, I wonder what his co-workers think about his new agitation and energy. They are probably thankful he's still telecommuting.
Everyone that has been on high doses on pred knows the deal. Sleeplessness, irritability, insatiable appetite and hyperactivity. He manages to sleep in 2 hour intervals and then he's awake for another 2 hours. That means he puts on a bunch of lights and starts some odd jobs so that means noise. Therefore I'm not sleeping well either!
I thought he could eat like a hurricane on a normal day, but this is another level. My kitchen counter looks like the entrance of a convenience store with piles of chocolate bars, cookies, energy bars (like he needs those now), cheap pastries and nuts. I baked him three dozen muffins when this whole thing started. Gone. Then I baked a sweet cream loaf. Gone. I had to tell him to cut down on his eating because he's going to get fat and no women will give him a second look, let alone a first, if he turns into the creepy fat Slav guy that can just wear baggy trackpants to cover a big behind and belly. I have to bring in "other women" into the equation because heaven knows he doesn't care what I think!
This afternoon I am planning an excursion for him to go out for around 2 hours so I can have a very important (Zoom) meeting. It would be impossible with him hyper-energized and looking for stuff to do which often results in a crash-boom-bang scenario.
Oh, he's started vacuuming too. That's a pleasant side effect.
He'll start tapering down from the pred right after surgery. Then, it will be interesting to see how he feels once the pain starts coming back in the muscles/joints and he'll just get back on the pred, because he's seen it's not a big deal at all. Well....maybe at a lower dose. :P He's be tolerable, I think, on like 10-20 mg.
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I remember watching a montage of videos where women were trying to participate in Zoom meetings as their husbands who were now "working from home" wandered about in the background, munching on various foodstuffs while in various stages of undress, completely unaware that the camera was on. One guy was wearing only underpants and a Manchester United jersey. It was hysterical and reminds me of you and your pred fuel hubby. LOL!
The highest dose of pred I've ever been on was 30mg, and that was for only a matter of weeks. I guess I haven't realized how bad 50mg can be. My condolences!
I like the "creepy fat Slav guy" line! Very persuasive!
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Everyone that has been on high doses on pred knows the deal. Sleeplessness, irritability, insatiable appetite and hyperactivity. He manages to sleep in 2 hour intervals and then
Not everyone. I was on a very high dose of prednisone (pre-xplant) for a short period of time and everyone commented about my fat face (cushingoid), plus I did pick up a case of avascular necrosis but I felt and slept just fine. Reminded me of a Chinese restaurant "The Three Chins".
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Nose procedure done and it is so much worse than either of us expected.
What were we thinking? We were so unprepared.
I toddled him off by himself in a taxi at 5 am and he finally came home after 2 pm. Typical for day surgery.
But I didn't expect to see a nasal bandage already with blood soaked through! And the nurse had already changed it twice in recovery! Since he's been home, I'd had to change it four times and once I didn't too well of a job thus causing a heavy stream of blood to just drip on out.
On top of that, his face is bruised like he himself was in Lennox Lewis v Vitali Klitschko. Obviously, the pain is bad, and I heard him mumbling to himself. I asked what's wrong, it sounds like moaning...he's singing to himself to keep the pain down. No painkillers at this point because...
...there was a mix-up at the pharmacy! They were supposed to deliver (hospital put it on its orders when they faxed the pharmacy) so I sat here waiting for hours, with his moan-singing in the background, until he yelled at me to ring them. They were expecting someone to pick them up! It's all well and good now because he's sleeping with hydromorphone dreams.
The doctor's office called and I took a bunch of notes...but no one told me ahead of time that he can't eat solid foods for 3 days. His nose and sinuses are so packed that if he eats solid food, he could risk stoppage of breathing. So, off to the shop to buy all sorts of liquid meal replacement things.
Hopefully the pain subsides sooner rather than later so he can get back to taking care of himself soon enough. Prednisone tapering begins tomorrow, but I'm not going to get on his case about it and his other condition until this nose is healed.
Some good news though: ahead of the procedure, the team discussed his EKG and echocardiogram. His heart looks excellent..like perfect! That knocks off his worry of Slav-early-death-from-heart-disease worry. I always knew he had a heart like a water buffalo.
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Thanks for the update. It sounds like he will get good care at home.
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You Tea, I'm sure it was awful at the time, but the way you tell these stories just makes me giggle. Sorry not sorry. LOL!
That said, I hope you'll get into a rhythm over the next few days. Maybe there's a Nursing 101 online class for you! Good luck!
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Hello UkrainianTracksuit,
I do hope "things" get better soon for the two of you and hopefully the pharmacy has delivered the medications and I also hope that your doctor helps as well. I do agree with MooseMom, the way you describe your updates is very witty indeed and makes me so glad that despite everything you have kept your "happy-go-lucky" thinking intact and I wish you both all the best of luck with hopefully a very quick healing.
Best good-luck-wishes from Kristina. :grouphug;
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Well, this chapter has come to an end too, so far.
It's been 3 weeks since the nose procedure and my husband saw the doctor today for clearance to get back to normal. Doctor signed off on him going back to work. More on that in a bit..
So, prednisone. While it was awful while he was on it, my husband finally came to the conclusion that he felt better on it. "I had no aches and pains! I felt great!" He's going to discuss with his team that he's finally really to attempt to put this disease in remission. Hopefully that means prednisone for like a year or in the other case methotrexate. Lord help us all because that means he'll be ready for spandex speed skating season this winter.
But, the thing is, his employer advised him that he will return to the office and work sites. No more remote. I knew this was coming, but it's kind of sad and depressing for me. Sure, he drove me up a wall a lot of the time, but it's been over a year having him at home.
Last week, his boss called and wanted to know where my husband was with his recovery, or in other words, "get back to work." And why? They want to send him off to a work site ASAP.
My first thought was darn, he's going to be around people with unknown vaccination status. Mining companies are all gung-ho about being central to vaccine rollouts in remote places though. Then, it turned into, well, there goes the rest of my summer! No point making plans now... He'd be gone for a handful of weeks. And then who knows what's next once things loosen up more for travel? World is truly getting back to normal.
I'm in some sort of existential crisis and he's all, "yippeee, helicopter rides to sites again!" The male brain.
I know he needs to work because we're a one income household now. Besides that, I am a money pit. :P There's my husband: new shoulder, new inflammatory condition, new nose (well, not entirely), and he's ready to go back into the land of the living. Meanwhile, I'm sitting here trying to figure who in my circle has been vaccinated..
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Well, this chapter has ended what has been an interesting story. Thank you for keeping us updated on the trials and tribulations in your household. It has been a bit of a wild ride.
I don't like the idea of you spending weeks on your own. That's too much time for your thoughts to start turning down dark paths. :cuddle;
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Thanks Juicy Moosey :rofl;
I hate being at home alone and your right - it's not great for the mental health! In the past, I was very accustomed to my husband traveling for work even handful of weeks at these remote locations. However, I was working out of the home and was occupied. It's like that song Lyin' Eyes: "Late at night a big old house gets lonely." He left on Sunday and I haven't slept since then.
It's complex to be social now as a handful of my contacts haven't been vaccinated because "they're healthy." The sort that went to those big houseparties during lockdown, so best to avoid. So, I'll be going on some solo nature treks roller skiing in some paths to clear my mind.
And thank goodness for the Olympics. :lol;
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I found it a bit difficult to cope when my husband was working from home for just about all of last year. I'm used to having my days to myself and found it hard to adjust to things like what we'd have for lunch, etc. He makes a big deal out of meals while I tend to just grab a sandwich or make a quick salad with little fuss and bother. So I sort of have the opposite problem from you.
Solo nature treks roller skiing sounds like heaven to me. Do that!
I agree about the Olympics! First we had the Champions League, then Euro 2020, now the Olympics, and US Open tennis is coming up soon, so I'm quite happy going to the pool, doing my laps, coming home for some faff-free lunch, and then turning on some sports while I do my domestic chores. It's too hot for gardening, but I've got loads of novels to read. I value my time to myself.
Yours truly,
Juicy Moosey
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So, Juicy Moosey, has your husband been back at the office for most of this year then? That's actually quite interesting as that's just starting to be a question addressed here. We seem slow at everything. :P I'd like to see how it all pans out before I start the attempt to enter the workforce again...or not.
I know that turning lunch into more a serious occasion met that's where I gained by "Covid 15"! My husband also wanted a "real life" and I would just grab fruit or salad (like you!). It's a good thing because now my regiment will get back to normal, though I still can't sleep.
Yes, most certainly, the sports schedule this summer has been great and really distracting! It's only a short hop, skip, and a jump to the Winter Olympics after this summer! Joopieee! I booked my first of two airline tickets for my transplant appointments this autumn. Checked out some menus in the city. Will focus on that good stuff.