Just to tell you about my experiences in the 1st month of the year 2020. This is more or less to let people with SLE and APS know what can happen.
I won't bore you with my past history its all on this site already. Now at the age of 61 years old I am getting over open heart surgery with a new mitral valve ( tissue valve) and 2 new arteries, Fit active and generally well I just have these 2 medical auto immune issues that keep rearing their ugly head.
12 weeks after major heart surgery I am healing mentally physically and emotionally very well. Physio I was passing with flying colors and well on the way to an excellent recovery. A few pains and sensations but dealing with them very well.
7th January woke up early at 3.45am to use the bathroom, here in Aus I turn the light on to make sure there are no snakes down the loo. Crazy but true LOL
To my horror it looked like I had poured a bottle of deep Burgundy wine down the loo
At this point no pain. I thought I will see if I can wait till daylight then address the problem. About an hour later I went to the loo again this time just red colour not the Burgundy. Before breakfast my urine was clear. I had breakfast and didn't worry but knew I would be going to the doctors to check this out. My appointment at the hospital for my heart physio was 8 am. No pysio today I was told so waited for my doctors appointment 2 pm. Home at 9 am the pain hit me. I experienced excruciating pain down my right flank. the pain resinated from the front to the back. Then I started vomiting through the pain.
At this point I got an emergency appointment at another doctors and was taken by ambulance straight to hospital with a suspected kidney stone. First hospital they were sure it had to be a kidney stone. 2 CT scans proved this was not the case. There was a lesion with a blood clot at the bottom of the Ureta where the Ureta meets the bladder. There was also pain coming from the right kidney when examined by the doctors. I was transferred to the new public hospital where 3 teams were overseeing my well fare. A physicians Team, my Immunology team and now a Urology team. As I am on warfarin and aspirin alarm bells ring. they called my heart surgeon and he said I was over the worst of the problems with open heart surgery and if they needed to take me off warfarin or whatever he was ok with it. At this point even the Endone stopped working.
They operated and inserted a 8 - 10" tube to free up the blockage. They had some major issues as there was not just the one blood clot but multiples old and new clots all the way up the tube to the kidney. The Urology team were a bit baffled by this.
They let me out 5 days later as the blood was not clearing from the urine. I was still experiencing Burgundy colored pee 12 days after the tube being inserted. Though no pain just uncomfortable feelings. Yesterday I was ecstatic clear pee. Yeah. and continual have clear pee.
I have to go back for another operation in a couple of weeks to have the tube removed possibly another inserted. I also need to have more and more tests.
Yes water drinking is playing a major role and trying to keep my INR at a reasonable level has been quite difficult. Going into hospital my INR was 3.4 with 10mg taken daily. My range was 2.5 to 3.5. New target range is 2 -3 and now on a dose of 6.5 mg with a reading of 2.1
I have searched this site but up to now haven't found anyone with the same issues yet, No doubt you are out there somewhere.
I will update this article when I go back in hospital hopefully with some new answers emerging.
I am back to my pysio tomorrow and will take each day as it comes.
Wishing you all well
Cheers. Linda Morrell