Beyond FRUSTRATED!

Hi everyone!

So I HAD an appointment this morning at 9am to do a Cardiopulmonary Exercise Test to see what else may be causing my shortness of breath and fatigue. Well yesterday afternoon I received a text saying my appointment was cancelled. Needless to say I had a meltdown. I called the VA and with enough pushing I got the tech who does the test on the phone. She told me they are cutting appointments due to the Coronavirus and after reading my file she didn't think I was urgent. I politely let her have it and she re-scheduled me for this Monday at 9am. Well 24 hours later (TODAY) she calls back and says the VA received a message from the President that any Pulmonary or Cardio exercise testing has to be cancelled unless urgent so she had to cancel my test. I about lost it! I told her that if she hadn't taken it upon herself to cancel the first appointment I had scheduled for TODAY at 9am, I would have been in an out before the Presidents email arrived around 12:30pm. So now my ONLY option is to just sit and deal with this SOB until I need to be seen in the ER. I am flabbergasted sometimes with our Health Care system here in the US. Then to add to this lovely day now Los Angeles is on LOCK DOWN for the Coronavirus. So I'll just be working from home struggling to breathe day in and day out until someone at the VA calls me back to reschedule. They told me they don't know when that will be. This just seems so unfair. I'm not complaining about a rash or a bad knee. It's my heart for crying out loud!!! Good times! GOOD TIMES!! Well that was my rant. Everyone PLEASE BE SAFE! Wash your hands, stay 6 feet apart and take extra precautions with all that you do. Like my father always said... This too shall pass! Amen! 


12 Comments

Is there any mechanism you can use to get a board-certified Doctor to tell the tech you are an Urgent case?

by crustyg - 2020-03-20 06:27:02

Trying to be positive and helpful (the masculine approach), try and find some way to get your EP doc or PCP to formally tell the tech that you *are* an urgent case.

Being feminine: I can see how frustrating this is for you.  Something similar happened to me once, and I have some small idea how enraged and humiliated you must feel.  My blood would be boiling too!

Hope the rant helped!

Best wishes.

Ask for heart rate to be increased

by Gemita - 2020-03-20 07:51:35

Hello Alejandro,

Breathlessness is not something that any of us should ignore and it needs to be assessed completely and quickly, and treated adequately.  This clearly has not been done.  In the very least your doctors should do everything possible to treat your symptoms while you wait for urgent investigations.   Have they offered any treatment at all ?  For example, phone consultation with a doctor to discuss all your treatment options??  Phone consultation with a Respiratory physiotherapist for advice and breathing exercise assistance ?   My husband was referred to the latter with excellent results.  Going to ER at this time when we are all being told to stay away is not the answer either but clearly you need help now and to be put on hold for who knows how long is just not acceptable.  Fight back and keep pushing.  Otherwise you will have no other choice but to attend ER.

Do you get breathless during the night when you use your CPAP?  If not are you able to use your CPAP during the day while you work from home, if you find this helps?

As others have said in earlier posts Alejandro, maybe an instant solution would be to ask your pacemaker clinic to urgently raise your heart rate settings to 70-75 bpm to see if this helps.   What harm can it do as a potential treatment tool and the result could be immediate.  What have you got to lose by asking for this while you wait for other tests ??

I hope you feel better quickly.

Cancellation of patient testing due to Corona virus emergency

by Selwyn - 2020-03-20 08:29:06

I am also a victim of cancelled respiratory function testing. Here in the UK, I received a text to tell me my full respiratory fuction testing ( including a CO transfer factor) for next week, was postponed. 

This is a two edge sword. Whilst not knowing what is happening to my lungs ( anxiety inducing, and possible on going lung damage), I do not have to run the gauntlet of going to the hospital ( a high risk area) and sitting with a lot of people possibly with coughs ( a high risk activity).

As my illness is chronic and ongoing, I do feel safer avoiding hospitals. I am certainly not "urgent". How much you isolate yourself ( as all those with bad health should be doing, if not the whole population, as from now) is a judgement call. In the UK we have taken a graded approach to this. As from today, I hear California is 'locked down" and the number of deaths in the US from the virus has now exceeded the mortalitiy within the UK from the virus. 

It may be that the cancellation of testing within a clinical environment is for your protection. Medical emergencies are still being dealt with normally over here.

SOB

by AgentX86 - 2020-03-20 12:14:01

I'd sure be looking at this from the other side of the coin.  I sure wouldn't want any respiratory illness if I had anything that would cause SOB, much less WuHan.  As scared as you may be, sorry, I think they're right in this case. This decision may have saved your life.

Thank you all for your comments!

by arentas80 - 2020-03-20 12:16:44

This site is so supportive. Thank you all! The SOB I experience is like a hunger for air rather than a gasping like when you run really fast. It's daily and it's exhausting. I try breathing exercises, I have an albuterol inhaler and nothing works. Some days I'm OK and some days I just sit on the sofa. Four days ago I was able to take my dog for a walk. We walked 2 miles and I felt great. 2 days ago I could barely get around the block. I felt anxious and light headed and was SOB. It's like my chest gets tight. Almost like it's clogged. My body feels super stressed and my heart feels like it's pumping super weird. I don't know how to really explain it. I've emailed the VA reps and at this point I don't know what to do. The last place I want to be is at the ER because of the Coronavirus but what else do I do? Suffer in silence? I'm so upset that they cancelled my Appt without even telling me. Who does that? Especially for something heart related. Anyhow I'm sure this will work itself out I just hope I don't have HF with Preserved Ejection Fraction (60%). I show all the signs with the exception of no LV systolic or diastolic dysfunction. My brain natriuretic peptide was normal as well. But people with HFPEF show normal on this test as well. I don't know what to do. I'm so frustrated. All I do is pray, pray and PRAY! I hope god will see me through this. I'm only 39 with what I hope will be a long life ahead of me. Amen!

AgentX86

by arentas80 - 2020-03-20 12:26:45

You're right! I agree with you. Believe me I don't want to be exposed to something worse. I have been telling them about my SOB for months now and because it's taken them so long I now have to wait even longer because of this outbreak. It's super frustrating! I just don't see why it would take anyone so long when it's heart or lung related? Again I'm not complaining about a bad knee. Or a giant pimple I need the doc to get rid of. It's my heart! Anyhow I'll just take it easy at home and see what happens once all this passes. Thanks for your input. Appreciate it! 

frustrating, but keeping you safe

by Tracey_E - 2020-03-20 14:05:56

I hear you and understand your frustration, but the question to ask yourself is can you afford to get coronavirus?? Going for the test means exposure. That's why they are canceling procedures left and right, to limit exposure to everyone, but particularly to anyone higher risk. If it's not urgent and critical, they don't want you exposed. If I were you, I would absolutely not risk the ER right now. That's where everyone who is symptomatic goes trying to get a test and the virus lasts days on surfaces. No. Way. 

A suggestion (made to me by my cardiologist)

by atiras - 2020-03-21 06:18:35

This may help you, or it may not, but when I saw my cardiologist about shortness of breath (due to diastolic heart failure) a few months ago, he suggested drinking beetroot juice. I was sceptical but tried it, and was pleasantly surprised by the outcome. There's a lot of evidence out there that beetroot juice helps with SOB due to a number of causes -- google for it.

 

Hey Atiras!

by arentas80 - 2020-03-21 10:51:05

Thanks for your post. Of course it would be a veggie I hate LOL! But at this point I'll try anything. Do you buy it in the store or make it yourself? What do you suggest? 

Beetroot juice

by atiras - 2020-03-23 06:21:21

I buy it in the store -- but it's also available on line; lots of athletes, cyclists, weight trainers etc. buy it, I'm told.

 

To be accurate I'm now buying it online, as I'm stuck at home for the next 12 weeks...

Hi

by Bionic Beat - 2020-03-23 19:07:49

Try to let the frustration go, the whole world is in the same boat at this moment in time.

Much safer to have the appointment cancelled as far as I am concerned.  

My cardiologist and cancer guy cancelled appointments nearly 6 wks ago because the hospitals have to gear up for the WuFlu.

Please do whatever you can to alleviate your symptoms and remember that getting all worked up probably makes it worse and sends your BP skyrocketing.  

Make a nice cuppa tea or coffee and try to relax.  The warm drinks can affect the very upper airways, opens them up a bit.

Thanks everyone!

by arentas80 - 2020-03-23 20:12:06

You guys are great! Thanks for all the comments!! This site is a real gem! All the best and may god protect us ALL during this uncertain times!

Alejandro

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