My "helper" is down...!

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robutacion

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I haven't updated this thread for some time as Merissa seemed to have a period where the treatment was doing something certainly not perfect but at least Merissa could get along her day fairly well but more recently (about 2 months ago) her RA specialist suggest that Merissa should try a new drug that seemed to be helping some folks, this medication is called Rinvoq or Upadacitinib tablet once daily.

About 4 weeks into the treatment Merissa started to feel unwell from headaches to loss of appetite, joint pains and shortage of breath, from there on an for the next 3 weeks she got worse particularly in her ability to do more than 2 steps and start gasping for air. Last week I request her/our GP
to give us a referral for her to be tested for corvid19 as some of her symptoms were identical to that virus, she was tested and the results come as negative which was good.

Merissa had an appointment to see her RH specialist on the 22/06 (last Monday) and this corvid test was done 6 days prior and while Merissa continue to have troubles in breathing, we decided that we would wait to see her specialist before I would take her to the hospital emergency. Well, at the appointment day she started coughing, nothing serious or continuous but we noticed that she was spitting up some small blood amounts, it happened that while in her consultation she brought some up just in front of the specialist, however, I had just mentioned that to the doctor and had a pic taken from one of the tissues she had used the day before, that was not what concerned him the most, was the shortage of breath that made him ring the hospital emergency (ER) and arrange for Merissa to be seen as soon as I would arrive with her.

The specialist appointment was at 2:00pm and by 3:15pm she was been admitted to the emergency.
In no time she had oxygen mask while I was explaining all I knew to the ER doctors. You can imagine the number of tests that were performed after she arrived, it was scary stuff but I stayed with her all the way through.

In general terms and to prevent me getting into a lot more detail and make this post a book size, Merissa was in the ER for 48 hours she then was moved to an isolated room for another 48 hours she then was moved into a ward with other 3 patients that meant that she was feeling better and was no need for isolation.

Today is Saturday 27/06 the 6th day in hospital and they are still not sure if the new drug has caused the problem or the long term Merissa has been given all these new drugs that most were a fail, they believe that Merissa had develop a lung infection that was the cause of her breathing problems, firstly they thought she had a clot in her lungs then a possible bleeding from somewhere in her lungs but that endup all being cleared up.

My conversation with one of her doctors at the hospital yesterday afternoon, I was told that Merissa was indeed suffering from a number of conditions that made her very ill when she was admitted, some of those condition could cause serious results so, they are tackling all those issues and until Merissa can breath on her own and show normal values, she will continue hospitalised, the "prediction" is that she should be able to come home next week, sometime.

She misses all her pets (2 cats one small dog) and off-course being home in her bed but for now, she is in the best place she could be due to the circumstances.

Let's all hope she comes home soon and in good health.

Cheers
George
 
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alanemorrison

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George, I emphathise with you as my wife is still dealing with the repercussions of having a brain tumour removed a couple of years ago and is still suffering from repeated headaches and inability to get proper sleep. It is not easy then for the spouse seeing your 'helper' in a lot of pain and feeling helpless so kudos to you for staying so strong through it all yourself.
I pray for a breakthrough for the both of you.
From a previous customer from N Ireland,
Alan
 

leehljp

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Praying for her and you. Med complications and interactions are difficult to analyze, and for each individual it is different. I hope the doctors are able to figure that out for Merissa.
 

howsitwork

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George

just coming in on this and I am sorry to hear of Merissa being ill.

What ever you do, and in our ramblings over the last year I think it’s true - stay positive in front of her and keep looking at the bright side. A positive outlook helps her and you cope ! Best wishes for a rapid recovery.

She is in the right place, with the best support from the medics and you. Make sure you keep yourself fit and tidy so she can see what a bargain she got when she got you😉 and when she is in the right mood remind her what a good catch you were .

Stay strong and best wishes to you both.

Ian
 

sbwertz

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George, I'm so sorry. I hope they figure out what went wrong. How is her RA during all this? I assume they took her off all her RA meds. I know what that would do to me! Give her my love and tell her I'm praying for her. Right now a hospital is the LAST place anyone wants to be! All the RA meds make you so susceptible to infections!
 

robutacion

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Hi.

Merissa was discharged today before lunchtime, she is now home with the furballs and me and that is great.

It seems that Merissa developed a nasty lung infection that could have killed her, the cause was a prolonged intake of lots of Rheumatoid Arthritis drugs with the nail in the coffin being the Rinvoq new med they gave her. Another symptom was the constant swollen her most her body but more the legs, in less than a week they managed to make Merissa lose 12kg of fluids so her legs and body are looking normal but still, the overweight issue is not helping any of her treatments something that she will be addressing with doctors ASAP.

They wouldn't let her come home without 2 things, number one was a machine she has to be connected to while sleeping as she has some sleep apnea, the other thing was an oxygen kit that should be delivered in the next day or so, they recommend that Merissa keep the oxygen nose hoses at low levels something that can be increased if she feels a bit shorter of breath as her lungs aren't yet totally clear apart from that, everything seems to be OK for now...!

Merissa and I, we appreciate you for caring...!

PS: You were so right Sharon, the RA meds totally exposed Merissa to this infection and not have had any RA medication since she was hospitalised is hurting here the issue is now, what can she take as RA medications..? WE will see her RA specialist this Thursday.

Cheers
George
 

robutacion

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Hi peoples,

Just a quick update on Merissa, yesterday night I got the sleep machine set up but I didn't like what I saw, something wasn't right so she didn't use the machine, today I contacted the hospital department that provided the machine and got some info on how to set it up correctly and off-course I was right when I decided not to let Merissa use the machine, however, when I mentioned that we haven't received the oxygen stuff they were surprised because Merissa was only allowed to go home because they had organised all the gear she needed at home as she needs to be on oxygen 24/7.

A few minutes after I finish the call to the hospital I got a knock on the door and there he was the person with all the oxygen stuff for Merissa. He kept going backs and forwards getting more and more gear by the time he finished he had dropped an oxygen trolley, 4 bottles of oxygen, regulator and all the hoses, etc. after that he brought in a big box with a machine that makes oxygen that Merissa will plugged in at house 24/7 when she needs to go out, she needs to disconnect from that machine and get the portable oxygen trolley that she has to carry wherever she goes. :eek: :mad:

Now at night she has to plug the tube from the oxygen maker machine and plug it on the sleep machine so she will be connected to 2 machines at night. The does and don'ts that are involved with using all this stuff is mind blowing we aren't sure of costs yet but I'm sure someone will let us know...!

I suppose, none of us realised how unwell Merissa still is and how much is involved for her to be abled/allowed to come home, there seems to be a long way to go for Merissa and a big step-up for me to make sure Merissa follows the requirements and get better and not go backwards.

That is a lot to go through for a 47 years old women, no doubt...!

Cheers
George
 

sbwertz

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George, My husband also has apnea, but he has central apnea as a result of West Nile virus back in 2004. He sleeps with a CPAP machine and an oxygen concentrator hooked into it. He doesn't have to use it during the day. Central sleep apnea means he isn't "blocking" at night...but he just stops breathing! His breathing will get slower and shallower until it just stops for up to a minute or so, then he gasps and starts breathing again. He will do that eight or ten times a night. The oxygen concentrator keeps his O2 levels high enough that they don't drop to dangerous levels when he stops breathing, and the CPAP help keep him breathing.
 

robutacion

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Hi Sharon,

Is never a good thing when someone has to rely on those machines regardless of how old you are, I have seen a lot of older people requiring these machine types but I thing Merissa is still too young for all this but I can also say that, none of this was her choice or doing, generics play a big part and other things that I have no control at.

I couldn't remember the name of the big machine but is an oxygen concentrator that is the machine she has to be connected to 24/7 unless she wants to go somewhere then she has to take the oxygen bottle kit. Yes, she has to connect the concentrator to the CPAP that uses distilled water on the attachment so her night mask has to 2 machines working for her.

She was in a similar set-up while in hospital and she told me she didn't mind the mask and that she felt fresher/more rested in the morning, the one day/night she had none of these apparatus until yesterday afternoon, she did struggle a bit but after she was put on oxygen yesterday and then the CPAP at night, she slept all night not even getting out to go to the toilet, the first good night sleep she had for a long time, even though she had the same system while in bed, is no such thing as sleeping properly while in hospital, the noise and constant visits from the nurses all night long does it.

We are going to see her RH specialist this morning so Merissa needs to take the oxygen trolley and see what the new strategy will be, will see...!

Cheers
George
 
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George, I don't know how old Merissa is, but my son who just turned 48 last month has been on a CPAP machine for the past 6 or 7 years...
Personally, not sure I could sleep on one... I tend to not sleep on my back, more of a curl up on my side kinda guy... he seems to do well on it though.
 

robutacion

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George, I don't know how old Merissa is, but my son who just turned 48 last month has been on a CPAP machine for the past 6 or 7 years...
Personally, not sure I could sleep on one... I tend to not sleep on my back, more of a curl up on my side kinda guy... he seems to do well on it though.
Merissa is 47 years old, sorry to hear about your son's condition but I believe having to use a mask only at night is not as bad as having to be connected to a machine 24/7.

Yes, like yourself my sleeping position in bed is turned to my left so, I don't know how I would adapt to such masks but I would find a way, would I like it..? well, I hope that I never had to find out...!

Cheers
George
 

sbwertz

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I'm so accustomed to the sound of the CPAP and the O2 concentrator, that I have trouble sleeping if they are not running. They have become "white noise" I guess.

George, does she wear a pulse oximeter? It is the little clip that goes on your finger to track your oxygen levels. They also make one that fits over your finger or thumb that is more comfortable to sleep in. Jack wears one.
 
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robutacion

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I'm so accustomed to the sound of the CPAP and the O2 concentrator, that I have trouble sleeping if they are not running. They have become "white noise" I guess.

George, does she wear a pulse oximeter? It is the little clip that goes on your finger to track your oxygen levels. They also make one that fits over your finger or thumb that is more comfortable to sleep in. Jack wears one.
Hi Sharon,

The O2 concentrator is not in the bedroom only the CPAP is unless the machine gets noisier as it gets used, I can hardly hear it unless the mask loses it's seal it then sounds like a tire air leak. The O2 concentrator is fairly silent too so all good there.

Merissa saw her RA specialist this morning and we used the opportunity of being out to get a few things done including doing a double groceries shopping and look for a pulse oximeter which we found one for about $100. I certainly mentioned to the RA specialist the inability to know what Merissa's oxygen levels were at different times of the day and during various activities, Merissa still does around the house even though I'm taking most of the chores under my responsibility, we were not supplied with such meter at the hospital or by the company that provided the oxygen equipment yesterday and I felt that we needed one to monitor the oxygen levels, the RA specialist had one of those meters and checked Merissa's levels at the appointment, they read 90 and that is still low even though Merissa had her oxygen bottle with her and the regulator is adjusted as prescribed at 0.5ml which I think is insufficient something that I will try to discuss with our GP soon. Through the afternoon I checked her oxygen levels and they varied from 90 to 94 we endup being out for 6.5 hours and that used about 1/2 of the oxygen tank.

Cheers
George
 
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Merissa is 47 years old, sorry to hear about your son's condition but I believe having to use a mask only at night is not as bad as having to be connected to a machine 24/7.
Yes, like yourself my sleeping position in bed is turned to my left so, I don't know how I would adapt to such masks but I would find a way, would I like it..? well, I hope that I never had to find out...!
Cheers
George
Looks like Merissa and Jason (my son) are about the same age... he is still very active, matter of fact, until last week or week before he was working as a deputy sheriff in the next county over from where he lives... he's gotten so used to the cpap that he can't sleep without one now. He's relatively newly married - it's been 10 years - but still newly weds... cpap's don't make for a very romantic evening though, I would think... :D

When we first married, Dianne would scare me at night... she would stop breathing in her sleep... would wake me the minute she stopped... but she hasn't done that in years... she has enough other problems that's one she doesn't need. With her back issues, we have walkers, mobile scooters, a cane and whatever else she needs to stay mobile... around the house she mostly uses the cane. She can't lay flat on a bed and has to sleep in a lounge chair that is motorrized so she can tilt it back and raise the foot rest... gets to be a problem if we lose power... she can't get out of the chair then... She'll try to cook once in a while, but it's so hard on her and she's so out of breath by the time she gets a meal done I've pretty much taken over all the kitchen duties, the laundry and such.... she's 76 and still sharp... I'm only 78 and still in good health.
 

robutacion

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OK so, when we got home this afternoon, we found a card on the screen door and on the floor was a stunning bunch of flowers with a card.

The card read, "From all your mates on IAP. Get well soon."

I may have a gut feeling as to who is responsible for organising this delivery from the florist to Merissa but that is irrelevant, Merissa loves the flowers and the sentiment behind it so, on Merissa's behalf, I would like to thank the though from her IAP friends/mates, thank you...!

Cheers
George
 

sbwertz

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Looks like Merissa and Jason (my son) are about the same age... he is still very active, matter of fact, until last week or week before he was working as a deputy sheriff in the next county over from where he lives... he's gotten so used to the cpap that he can't sleep without one now. He's relatively newly married - it's been 10 years - but still newly weds... cpap's don't make for a very romantic evening though, I would think... :D

When we first married, Dianne would scare me at night... she would stop breathing in her sleep... would wake me the minute she stopped... but she hasn't done that in years... she has enough other problems that's one she doesn't need. With her back issues, we have walkers, mobile scooters, a cane and whatever else she needs to stay mobile... around the house she mostly uses the cane. She can't lay flat on a bed and has to sleep in a lounge chair that is motorrized so she can tilt it back and raise the foot rest... gets to be a problem if we lose power... she can't get out of the chair then... She'll try to cook once in a while, but it's so hard on her and she's so out of breath by the time she gets a meal done I've pretty much taken over all the kitchen duties, the laundry and such.... she's 76 and still sharp... I'm only 78 and still in good health.
My husband's electric Lazy Boy has a battery backup so it will still work in a power failure. He, too uses a cane around the house and a walker or scooter when we go out. We bought one of the little Scout scooters that breaks down into four pieces and fits in the trunk of a car. He has severe spinal stenosis.
 
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My husband's electric Lazy Boy has a battery backup so it will still work in a power failure. He, too uses a cane around the house and a walker or scooter when we go out. We bought one of the little Scout scooters that breaks down into four pieces and fits in the trunk of a car. He has severe spinal stenosis.
Ours are not Lazy Boys, but sure are comfortable... everytime I sit in mine and ease back a bit it makes my eyes close... must be something wrong with the chair :D:D... we don't have the battery back up, but would be nice.... we've only had one incident where she got stuck when the power dropped... a tree fell on the power lines and we were down about 3 hours... she was able to scoot out onto the foot rest while I held the back and able to stand up... was a little worrisome that she might become over balanced and fall and me too far away to catch her...
 

sbwertz

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Ours are not Lazy Boys, but sure are comfortable... everytime I sit in mine and ease back a bit it makes my eyes close... must be something wrong with the chair :D:D... we don't have the battery back up, but would be nice.... we've only had one incident where she got stuck when the power dropped... a tree fell on the power lines and we were down about 3 hours... she was able to scoot out onto the foot rest while I held the back and able to stand up... was a little worrisome that she might become over balanced and fall and me too far away to catch her...
That problem affects Lazy Boys, too. I don't even have to lean back....just put my feet up, and I'm gone. Mine isn't electric, though...just lever actuated. However, the other day a big water bottle got under the footboard, and I couldn't close the chair and had to figure out how to scramble out of it. I managed, but it wasn't fun.
 

sbwertz

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George, what did her doctor say about the RA meds? Also, you may want to have her retested for the virus in a couple of weeks. Hospitals are dangerous places these days.
 

robutacion

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George, what did her doctor say about the RA meds? Also, you may want to have her retested for the virus in a couple of weeks. Hospitals are dangerous places these days.
Hi Sharon,

Well, her RA specialist has stopped all RA medications for at least 3 weeks hoping by then the respiratory issue has stabilised, the lung infection takes over any of the RA stuff for now, the only thing that is giving Merissa some help with her joints is the steroid tablets she is taking but that will be a short term thing.

Merissa was tested one week prior to her hospitalisation and while there, they repeated the test another 5 times and all came negative that off-course doesn't mean she is free of the virus forever, by the contrary, as you said just being or going to an hospital at the moment, it may be the worse place anyone can go to avoid getting the virus so yes, she will be tested again and so will I, I spend more than enough time in that place in a week so, my chances of getting is also high, will see...!

Cheers
George
 

howsitwork

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George the steroids will suppress the RA short term and help her feel better.

Might give her more of an appetite too so brush up on your culinary skills 😉.

I know you’ll keep it clean but the water in the machine helps keep her lungs moist at night ( which helps mucus clear). Care with the oxygen, too high a %age can cause more issues so stick to the advised limits. Your body actually monitors CO2 levels not oxygen in the blood.

Best wishes to you both.

Ian
 

sbwertz

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Yes, hospitals are dangerous places. About two years ago, I went to the emergency room with severe gastritis. They kept me overnight and sent me home. Two days later I was back in the hospital with hospital-acquired pneumonia.
 
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