Post stroke tests

Jennifer
Jenniferon Monday, October 17 2022
12 Comments

It's been 10 months since my stroke (discharged 6/12/21) and in the last month I've started receiving letters from the hospital for tests. Holter moniter & Echocardiogram so far. I had to decline the Holter moniter because it would have meant two hours of driving two days in a row. I can't do that physically or financially.

My GP ordered an Echocardiogram and that was done in January.

Is it normal to have the follow up tests so long after discharge?

I wasn't given any sort of plan so didn't know these were even in the pipeline.

12 Responses

It depends on what they are looking for. 

The first thing you should ask your GP or stroke unit in the hospital is why they want to do the tests. Is there some sort of issue they want to monitor. 

For myself in has been nearly 2 years since my stroke and because of the type of stroke that I had I have had a intravenous angiogram  with contrast,renal ultrasound, cerebral angiogram and an intravenous '3D' angiogram  with contrast. 

If you want to know the concept of courage imagine doing the those why you're actually frightened of needles (known as - trypanophobia). 

Most important thing to look after your own health, never be afraid to ask a question.  

Medical stuff can be quite confronting at times.  

With my stroke ended up having aphasia and apraxia, with a loss of some memory.

Let you know, I am now using Dragon speech to text in order to translate everything I'm saying into words, and I can tell you is not much fun or enjoyable.

 

  

I'm sorry. I didn't intend to trivialize yours or anyone else's post stroke struggles. I know many are far worse off than me.

Hey Jennifer, I don't think that Darly meant that you were trivialising anyone else's experience. I read it that he was sharing his experience and offering some great advice.

Maybe give the team on StrokeLine a call on 1800 787 653. Living far away from treatment is a massive difficulty, especially if you have to drive yourself. It can be too much.

 

Dxx

Hi Jennifer,

 

Thank you for posting. It’s nice to hear from you again, though it sounds like you are facing some real hurdles getting to your tests.

 

Yes, as Darryl mentioned, finding out the reason for your tests is a good place to start. The Holter monitor can be used to identify Atrial Fibrillation and support secondary stroke prevention. Perhaps the doctors are trying to find out the reason behind your stroke. It would also be good to clarify the reason behind the repeat Echocardiogram as you have already had one in January. Discuss the results with your doctor if you haven’t already.

 

Often these tests occur soon after discharge, but there may be waitlists.

Depending on where you live, some GPs have affiliated cardiac clinics which may be located a little closer to you.

 

Feel free to call StrokeLine to discuss some options, on StrokeLine 1800 787 653 or email strokeline@strokefoundation.org.au. We are available Monday to Friday 9am to 5pm AEDST.

 

Kind regards,

Kath, StrokeLine.

Again I'm sorry.

I'm dealing with multiple medical conditions at the moment and am tired and emotional. I can't get answers from the hospital as I only get to speak to reception when I call. They are not authorized to give any details. The one time I did manage to speak to the stroke unit I was told to go to my GP as after discharge I'm no longer their responsibility.

Problem is, there was no info transferred to my GP other than the basic stroke diagnosis. Neither my GP or I were told if any referrals for tests were done. So my GP ordered the Echocardiogram which was done in January. The hospital wouldn't be aware that happened. 

I live alone and have to drive myself so only go anywhere when it's absolutely necessary. I'm just tired of beating my head against brick walls when it comes to health care.

I'm just simply exhausted and wondering why I even bother to try and get answers because the answer is always ask someone else. 

Sorry for the long post.

Hello Jennifer, no need to apologise, it sounds as if you are having a really difficult time and we are very sorry to hear what's been happening for you.  It is really good to be reaching out and sharing with the community about what you are going through. 

 

It can be very challenging communicating with the hospital. It sounds like you have a relationship with your Gp which is good to hear. We would always recommend going and talking with your Gp about any concerns or issues you experience following a stroke. They can then be the medical person who can coordinate any additional tests or follow up.

 

We certainly understand how confusing it can be to have the follow up tests sent to you so long after your discharge.  As Kath mentioned above, the tests are most likely to determine the exact cause of you stroke and to try and reduce the likelihood of having another one.

 

It sounds like you have been in contact with the hospital on more than one occasion, but have you tried calling Medical Records at the hospital (with your name, date of birth and admission and discharge date) and ask if they can send your discharge summary to you and your Gp?  You should have received a discharge summary when you left hospital, and this should also have any recommendations for further tests included.  Sometimes it can be really difficult to be able to get the information you need from the hospital, so it is great you have reached out on EnableMe.

 

 

We would also be more than happy to talk with you over the phone on Ph. 1800 787 653, or via email on strokeline@strokefoundation.org.au.

 

 

Warm regards 

Siobhan (StrokeLine)

Replying to a few issues here.

Driving for medical stuff. Can you check if the Red  Cross still offers their driving service in your area? This is something I looked at when I was discharged from hospital but they suspended the service due to Covid.

Dragon speech to text software: my wife uses this due to chronic arm problems and manages to do just about anything on the PC with it (except for drawing borders with a mouse). It does take time to get really useful (It learns from what you are saying all the time). Just remember to back up your user profile in case of tech troubles. We lost hers due to a PC upgrade that went a bit pear shaped and I was not popular for a while.

Access to hospital records: your GP should be able to get copies of these (mine could). Also ask if you can be managed for a chronic condition (there is a Medicare scheme for this)

 

Juggling multiple medical issues is a hard process. I was in hospital recovering from emergency open heart surgery (aortic dissection) when I had my stroke. This has caused vision problems, so I can no longer drive or work in the area I was previously. I was able to make a claim on my superannuation insurance (check this out if you have a super fund) and have recently been accepted into the NDIS, so I will no longer have to rely so heavily on family and friends to get me places. If you want to go down this path, contact a nearby Disability Advocacy Service as they know the NDIS from long experience. It's a free service. They can even put you in touch with local support services.

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