My Covid experience…so far

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dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

My Covid experience…so far

Post by dirverd »

As fellow TX patients I thought you’d be interested to hear how I’m getting on after testing positive on Monday. I’ve had all my jabs (all 4) and I’m on 1.5 Tac BD, MMF 250 BD and 5 pred.

I had my kidney from my brother about 10 years ago.

Both my wife and daughter tested positive on Saturday, so I started wearing a mask round the house. And kept opening doors and windows. Despite this, I tested positive on Monday. (I also did the ‘urgent’ PCR we were sent so we could get antivirals sent to us.)

I called the hospital and the nurse said that if I upload the results of the lateral flow - this will alert the Covid Medicine Delivery Unit, quicker than waiting for the PCR. They would then call me and see which antiviral would be best suited for me…

It’s started with a sore throat. Then I got quite achey. And had a headache. Most of these symptoms seem to be controllable with paracetamol. I called my renal unit (Guys) who said I should only stop my MMF, if my symptoms got worse but as they seemed quite mild, I should keep taking them.

After I got about 900 texts - I was notified that I’m due the new antiviral treatment. They said they’d get back to me in 24 hours - but 48hours later, I still haven’t heard anything. I’ve chased the GP, and called 111 but they all go through the same process and contact the CMDU.

Hoping to hear tomorrow, although the Dr on 111 did say as my symptoms were mild, they might say, I don’t them.

I’ll let you know how I get on, but thought I’d share my experience so far.

Take care everyone.
Skm
Posts: 65
Joined: Sat Sep 01, 2018 10:13 am

Re: My Covid experience…so far

Post by Skm »

Dirverd,

I hope you hear about treatment and your symptoms remain mild.
Do let us know how you get on.
If you don’t get back to us we will fear you are more unwell!

Sue
Transplant May 2015
dirverd
Posts: 212
Joined: Tue Aug 02, 2011 3:42 pm

Re: My Covid experience…so far

Post by dirverd »

Update.

I’m actually feeling much better. But after another day of chasing how to get the antivirals, I just took myself to St Thomas A&E and then they sent me to the CMDU (Covid medicine delivery unit) at St Thomas’

At the CMDU the Dr. Said it was still worth me having the antiviral treatment despite feeling better, because I’m immunosuppressed. Incidentally, they said the pill version would react with my Tacrolymus, so I’ll have an infusion instead.

I’m here now waiting for it.

So, if anyone else is unlucky enough to catch Covid, I’d wait 24 hours after you’ve uploaded you positive Lat flow / PCR to see if you’re contacted, then just take action yourself. Phone 111, tell them your situation and find out a hospital that can help.

My symptoms have been pretty mild though. I’m pretty sure I’d been alright without the AV - but better safe than sorry.

Hopefully, you find this info useful…

Thanks
Thumps
Posts: 1301
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: My Covid experience…so far

Post by Thumps »

Hope you're feeling better now!

Similar experience I guess... husband tested positive last Wednesday. We isolated in different bedrooms etc, but I woke up with a very very sore throat and then tested positive Sunday morning. Registered a very faint LFT and sent off the emergency PCR, which came back positive at 7am on Monday morning (surprisingly quick!)

I called Guys, who told me to stop taking the MMF for two weeks. Then I called 111 to trigger off the treatment pathway. Was on hold for about 15 minutes before speaking to someone. They they had a doctor call me back to confirm symptoms and said that someone from CMDU would call me in 24 hours. Just over 24 hours later a doctor from CMDU at St Thomas's called, confirmed that I'd be suitable for the antibody infusion and to come in this morning.

On arrival, I had to do another LFT which was negative! Then I had to wait around for HOURS for a confirmatory PCR, which came back positive. They said that even though it wasn't a strong positive and my symptoms weren't too bad, I should still have the treatment. So that ended up being about 4pm today.

I am home with the same sore throat and massive fatigue, but hoping I'll improve over the next couple of days. As you say, better safe than sorry!

Hope everyone else stays well!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
morzov
Posts: 25
Joined: Thu Jul 23, 2009 7:52 pm

Re: My Covid experience…so far

Post by morzov »

Following on from this thread and the earlier one about how back to normal people are.

Difficulties with the CMDU aside (and actually now that treatment is triggered by an LFT why can't we just contact them direct and they look at the LFT result on line) I wondered if aanyone who had had Covid had subsequently had bloods done and if so whether there had been any adverse affect on kidney function?

Reason I ask is that I have had 4 vaccine shots but my eGFR is only 20 and thus although I am fairly confident that I would survive I do wonder what effect it would have on renal function?

On going back to normal I am still avoiding going inside pubs, restaurants etc whilst levels are still high. Have just had to drop out of my nephews wedding - 160 guests!

Stay safe everyone
Thumps
Posts: 1301
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: My Covid experience…so far

Post by Thumps »

The doctors I spoke to were confident that there's no impact on kidney function identified thus far. My blood pressure was pretty high before they discharged me but it has settled back down a couple of days later. My check up isn't for another few weeks, do keep us posted!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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