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Cardiologist Forbids Use Of Wheelchair


flop
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Hi everyone,

just as I was getting used to the idea of using a chair at work and sorting funding (and wondering if a purple chair would go with most of my wardrobe) everything has fallen appart. My GP (PCP), occupational health and the disability advisor were all in favour of me temporarily using a chair for some of my tasks at work to prevent syncope and allow me to continue to work.

I had a phone conversation with my cardiologist today and he forbade me to use a chair. He says that it is the worst thing that I could do for my POTS. He thinks that if I use a chair my body will get used to sitting and I won't be able to stand up anymore. He says I must stand as much as possible even if that means having blackouts.

I explained about my problems with career progression - I have a chance to get on a final training scheme this summer for 2 years then I would be fully trained and able to work flexibly. This will be the last year that this training scheme will be available so if I don't go for it now my career is effectively over. His reply to that was that if I were to use a chair that my life would be over!

I thought that he wouldn't be keen on the idea but didn't imagine he would react this strongly against it. The only thing that would make him change his mind is if I can find evidence that using a chair doesn't make POTS worse.

What do other peoples physician's think of wheelchairs? Has anyone ever discussed one with the likes of Dr Grubb - I would love to know his opinion on the subject?

Help!

Flop

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I can't speak from personal experience beyond supermarkets and airports, but there are some on here who use theirs on an as-needed basis, and sometimes they really don't! anyway, best of luck, and lots of love!!

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I can't speak from personal experience beyond supermarkets and airports, but there are some on here who use theirs on an as-needed basis, and sometimes they really don't! anyway, best of luck, and lots of love!!

I would be upset by how adamant he was. I have a wheelchair and scooter that I use intermittently- more for joints than for pots. My primary was concerned when I requested an rx, but I explained that it lets me do a lot more and be involved. Otherwise, I'm always stuck at home. and sometimes we bring the chair just in case, and I end up pushing it while I walk. It's not like it's addictive! Having it gives you options-- it doesn't mean you'll lose the will to walk.

I know that there are many factors in picking and keeping a doctor, but I dislike rigidity intensely.

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It's hardly "proof" but I used a wheelchair for a few months and don't use one at all anymore.

I have 2 main problems with your cardiologist's claims. 1) Using a wheelchair is pretty frustrating - it would be a rare, rare person that didn't do everything possible to get back out of the wheelchair. 2) If you do end up needing a wheelchair for the rest of your life - so be it! I mean, I much rather have a job I enjoy and need a wheelchair for everything than let the rest of my life fall apart. I might see if you can find a new doctor...he doesn't sound very compassionate.

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Guest tearose

what an insult!

It is like using eyeglasses will forever ruin your eyes???

It sounds like this doctor does not understand how bad off you are.

If you need it you must continue to fight for yourself, your independence.

tearose

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I'm sorry but I would really question his advice with your GP and all the others .

I was in a wheelchair for a year when I was 17-18 and I didn't have a problem giving it up when my spine / legs /balance got better .

I struggled with walking then not only with Pots but with spinal problems as well and I got the old 'no you shouldn't do it' but my GP backed me saying it was so stupid not to give me a chair because ;

1. It was unlikely I would fall again.........so many before the chair.

2. I would be able to at least be independent ..............unable to go anywhere before the chair.

3. It would help my legs.............to weak to carry me before the chair ( had physio on them everyday whilst in the chair)

4. It would help me long term dealing with my problems and being able to accept them ........what I think she was getting at was that if it was a permanent thing I'd be OK with it , and if it was a temporary thing at least I was only using it at my worst.

I gave my chair up again about year later ( 6 months of in/out of it after a year ) my legs are stronger than before and my spine is much, much better.

I never had a problem with the chair , it was something I needed to use for my independents , my sanity and it gave me the ability to feel useful again , strange I know , but it did .

AMI

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Guest dionna

everyone agreed that i needed a chair!!! at my worst... i could hardly sit up let alone stand up. i fainted every single time! i had to be held up on a tolilet and in the shower. the only way i got around before my chair was someone carrying me! slowly i got better and i use my chair when i need it. i can go days with out using it. i think it helps me because it prevents falls. i am notorious at fainting. i think it might be creeping up to 375 times in the past 2 and a half years for my number of faints.

tilt training:

teaching your body to stand again... i don't neccassarily believe this to work... i tried it out and then thought of it logically. at the time i started fainting i was in the best shape of my life... i just finish with marine boot camp and marine combat training. my body didn't have an issue with being upright. my legs were tone and my body strong. before i went into the marine i was a waitress working 80 hours a week. no problem. obviously being a marine and being a waitress i was on my feet all the time. i had plenty of tilt training and then BAM all of a sudden i started fainting? whatever. i agree with a statement from a previous post: training your body to stand is like training your body to breath under water. thank you so much to the one who wrote that.

muscle tone:

my honey is a competition body builder, black belt in martial arts, he has 28 inch thighs that are nothing but muscle... his calves are bigger than my thighs... HE FAINTS. he lifts over A TON with them, lack of muscle tone there? I DON'T THINK SO!

i think those are two of the points your doctor might have been trying to say... if you used the chair you would lose the tilt training and muscle tone.... well i think they are bogus. they might help a little but i don't think they help too much. if you want to teach your body something... teach it to have a normal heart rate and a normal blood pressure (and if you figure out how to do that, by all means share).

darling flop,

if you need a chair, by all means use one. i promise, you will get hurt worse if you faint and injure yourself. plus, your job... i don't want to see you lose it. if you just use the chair at work or when you go out... it won't hurt you. i only use mine when i go out. i don't use it every single second. i still have my bad spells like now... but i also have my really good spells and i will go days without having to use my chair when i go out. i use it only when i need it. i wish you the best of luck in your decision.

dionna ;)

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Dear Flop,

I'm sorry you're having such difficulty with your cardiologist. That is so frustrating. If you need a wheelchair and it would improve your quality of life, then you should get one. He is choosing to not be compassionate or understanding.

I do not believe that using a wheelchair has made my POTS worse. If anything it has helped my POTS because it allows me to sit and not use up energy too quickly due to standing and walking. My POTS gets worse when I push myself too far/do too much.

I don't know of any documented evidence that wheelchairs don't make POTS patients worse. To me it just seems more like common sense. If you can't walk and stand, then you use a wheelchair. The other option of falling or fainting is not a healthy one! Perhaps an article that shows how disabling POTS can be would be enough to convince your cardiologist?

If your cardiologist isn't willing to help with the wheelchair, could your GP help you get one?

Best of luck,

Rachel

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Thank you for the advice and support so far,

I got really angry and upset with my cardiologist. It it a good thing I was talking to him on the phone - I know he would tell from my voice that I was upset, but at least he couldn't see the tears of frustration and dismay pouring down my cheeks. I spent the next hour (hiding at work) crying inconsolably as my world fell apart arround me.

[ I realised later last night whilst still at work how bad crying is for POTS (- dehydration?). Whilst washing my hands in the bathroom BANG down I went again. This time I fell backwards into an empty cubicle and hit my head on the toilet so hard that I split the ceramic bowl right the way through - how I didn't break my head instead of the toilet I'll never know! ]

I just don't see how I am supposed to cope much longer at work without a chair - I either need to change my ability to work or stop working. I even explained to him that occupational health have said that without a chair I can't continue working (that was a slight exaggeration) and that if I don't manage to work through the next 18 months that my career is over. His reply to that was that if I use a wheelchair my life will be over - I will become permanently disabled and eventually bed-bound through deconditioning.

Initially I thought that I needed to find myself a new cardiologist (not easy when my current doc is the only one around here who actually acknowledges that POTS exists!).

I managed to have a phone conversation with my GP (PCP) later yesterday evening. He seemed supprised at my cardiologists reaction but pointed out that my cardiologist has always fought really hard on my behalf before, particularly to keep me working and to help convince other doctors that I have a genuine medical condition and that I don't have a major psychiatric problem. My GP thought that as my cardiologist has always acted in my best interests before that he must believe that the wheelchair really will harm me to react so strongly about it. After all he has backed me for getting a disabled parking permit and argued that I should be covered under the disability discrimination act.

My GP's advice was to go hunting for the evidence of wheelchairs being either beneficial, detrimental or indifferent to long-term prognosis in POTS. And also to write to my cardiologist to explain exactly how much I am needing to sit down at the moment, on what occasions I was planning on using a wheelchair (probably only at work and not all day!) and how I think it will leave me with more energy to put into structured exercise in the evenings.

This is where I really need help from everyone on here. I doubt that there is any proper medical evidence regarding wheelchairs and POTS but if everyone can tell me their wheelchair experiences (how you were before the chair, how much you used it initially, how much you use it now and how bad your POTS is now (and any good/bad POTS spells)) I can present the information to him. Also if anyone has appointments coming up with friendly docs would you mind asking their opinions on wheelchairs for POTS?

I realise that this is really cheeky of me but I don't know where else to turn for help. I anyone has any info that they don't want to post on the board please feel free to PM me.

Thank you all so much,

((((((HUGS))))))

Flop xxx

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Sorry, but your cardio doesn't know what he's talking about...as if breaking bones and concussions are better than getting temporary, or even not temp help to prevent these things. I wonder how he would feel about cracking HIS head on a toilet?

Unless he's pcp, go with the others! I use my chairs only when i really need them....I have had them for over a year and am not chair bound yet.....that's a ridiculous assumption.....sorry, but those kind of black and white statements just fry me off....

If your other docs and therapists are good with it, go with it. My cardio has never even mentioned my chair...good luck sweetie and hope your head is okay! Probably more due to the stress I'd guess than the tears themselves......morgan

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flop.. oh my i have to really really disagree with your cardio... that is the most obserd thing i have ever heard!! ...

OK he is wrong.. now do you need your cardiologist on board inorder to get a wheelchair?

can you PCP handle this for you.. and the other professionals that are supporting you in this..?

I have a powerwheelchair that i use as needed.. i use it when i go to medical appointments..groceryshopping- mall-` stores-ect. i also use it around the house alot on days when im unsteady and am in fainting mode.. and when my pain levels are high and i cant walk b/c of pain..But i dont use my chair day after day.. i can go several days where i do not need to depend on it at all.. or several days where i absolutley need it 24/7..

Now reason i aksed if you PCP can handle the wheelcahir business is b/c my pcp is the one who got the ball rolling for me.. and the then my local cardiologist..pcp.. and dr. grubb's office wrote letters supporting and explaining my medical conditions and my need for a powerchair verses a manual one.. the insurnace company sent me to get an evaluation done by a Physical therapist... and i was having an extremely bad day... and my bp was proof positive....of needing one.. and the PT eval was in my favor..

I really hope that you can find a way around the cardiologist.. sorry your dealing with this.. and i hope that your head is doing ok.. sounds like a pretty nasty fall you had...

hope you can find a loop hole

hugs to you flop

linda

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Guest dionna

OMG!!! i didn't want to be rude before but your cardiologist is a wacko!!! he is wrong and i would fire him... lol (i can't believe i actually said wacko)... seriously i would fire him though... you deserve so much better!!! i hope that your head is doing better! i promise he is so very wrong about you being completely disabled and dependent and then beddridden! he is absolutely wrong. i don't what he has been reading, smoking, etc but he is wrong!!!

i support you 100%!!!

dionna ;)

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Thanks for the support,

I can get funding for a chair with my PCP's backing which I had (a wheelchair was his idea in the first place). Unfortunately now that my cardio has vetoed a chair my PCP is agreeing with my cardiologist. My PCP says that my cardio has always been right before so maybe he's right about deconditioning and that I need to find the evidence to convince my cardio that a chair won't be harmful.

I would find it very hard to find another cardiologist and almost impossible to find another PCP. They have always been so good and understanding before that I don't want to destroy all those years of trust (my PCP has looked after me since I was a baby except for while I was away at university).

Flop (with a sore head - no lump though!)

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Whereabouts are you flop? PM me if you dont want to broadcast it on the forum. It's just if you're near me, you could go see my endo who diagnosed me on the spot and might be able to help with the wheelchair thing. Can't guarantee it but worth a go.

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  • 2 weeks later...

Hi, Flop:

What is the latest status on your using a wheelchair? I've been wanting to respond to this post since it started, but a POTS flare made it too difficult to get the words from my head to the page...argh. I hope that you are feeling better after your two "flops." I really feel for you. I've only actually fainted once, and it was miserable. Typically, my body gives me lots of warning signs to sit before it will take care of things on its own.

Have you tried working out a compromise with your Cardiologist? Boy, do I understand needing to play the balancing act with doctors. Sometimes they just think unreasonable things, even if they are good doctors. I guess it's the whole "doctors are human" thing. It sounds like you have a good doctor who is willing to work with you, but he's concerned about your long-term health too and may be a bit misdirected in this area.

Anyway, some thoughts on a compromise might be (1) telling him that you would leave the chair at work (therefore, cannot use it outside the office), (2) being willing to try physical therapy to compensate for standing less through the day, or (3) trying a trial basis where he could monitor your conditioning closely while you use the chair. If he went for the latter, he might be the first to publish a paper on the use of wheelchairs and its effect on conditioning in POTS!

Sometimes doctors are willing to negotiate a bit, and if they know you are willing to work with them, they might give more in response to your needs.

By all means though, don't let something like needing a wheelchair get in the way of your life goals. Those are just too important! :lol:

I hope that you are feeling much better.

Take care!

Deucykub

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  • 4 weeks later...

Hi Deucykub (and everyone else too),

sorry I didn't post a reply when you asked. I got all caught up in my job interview (still waiting the outcome of that) and then my eventful hospital stay (I'll post seperately about that).

I haven't spoken to my cardiologist since our disagreement over the wheelchair - I have an appointment in a couple of weeks so I'll see how that goes.

As I couldn't get in touch with my cardiologist I e-mailed my EP. (We ofter communicate by e-mail to save me travelling to the hospital where he works).

His initial response was to say that he didn't favour a wheelchair as it may ultimately cause reduced orthostatic tolerance.

We had a long conversation backwards and forwards over the e-mail and I explained my work situation and that I couldn't go on working and being as symptomatic as I am. He knows that it would be a case of surviving 18 months of a training scheme before moving to a permanent job where I could be office based and work part-time.

His final reply was "I think you are right from your life's point of view to consider use of chair to get you through the relevant training jobs"

If doctorguest is about I would very much welcome his/her comment on wheelchairs.

I am hoping that I can use a chair for 3-4 hours a day at work and hopefully invest the extra energy in more exercise in the evenings.

Sorry this seems to be such an on-going saga, it's an important decision for me.

Flop

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Hi Flop,

I haven't read all the posts in this thread, and I may not have all the details from your discussion with your doctor regarding the wheelchair, except for your current post. This is a very personal decision, I think, because in the end, only you know what you can or cannot do. I understand your EP's concern about losing orthostatic tolerance further, but I also see your point about using the chair for a few hours a day to get you through your work day. I think that having the chair available to you at work, whether you choose/decide to use it or not, will probably provide psychological safety net on those days when you feel particulary bad. I believe that if you use it as needed and intermittently, then no deconditioning should result from this, especially since you're planning to continue exercising and be active in your non-working hours. Also, I am not sure what kind of job you're doing, but if it involves being on your feet a lot, then definitely you need to give yourself a rest for a few hours a day with the chair. I hope this was helpful, although I understand that you may be looking for a concrete answer "yes" or "no". I'd say that if you can manage without it, then don't use it. But, if you're someone who has frequent syncope and your job requires you to be standing or walking, then using it intermittently will likely be helpful to advance your career and keep your job, which I think are very important aspects to consider.

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Hi,

I've had my wheelchair for 4 years and my powerchair for 2 years. I am not chair bound. Before I had my powerchair I was homebound. Now I can go out on myself in the Summer.

I became disabled overnight because of a medication not because of deconditioning.

My wheelchair permits me to go out and avoid syncopes in public. It also protects me from injuries.

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hi flop,

even while in a wheelchair when needed, you can do exercises while at home. could you ask a pt to help you make a programme which would fit your needs and talk this through with your pcp and cardio??? you should stay at work as long as you can and when needing a wheelchair, you should use one. it is SOOOOO important to be able to go out and work, in combination with specific exercises you could do great (in my humble opinion :huh: ).

good luck flop and take care,

corina :)

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