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
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Hi, you have been in the wars, I wish you a really speedy recovery, I am sure at some point somebody will answer you who has had similar events, thank goodness they found out all the different things going on. Get well soon. MaryF
I had an aortic valve replacement about 5 years ago....with some blood issues, like low platelets, etc.
But nothing in the urine. Sounds like you had autoimmune corresponding issues, and I hope you had a Specialist watching over the whole heart surgery process. In my case, it was my Rheumatologist who eventually pulled me out of the side effects caused by my APS/lupus.
And we know that post surgery time can be a prime opportunity for clots to travel around the body.
I have also valve-issues but they must not operate on me being triple-positive and 75 years old. I am ok today but have two leaking heartvalves and Pulmonary Hypertension.
I do hope you have a Specialist around you who can watch your INR and anticoagulation as that is vital for us ! Was well written indeed. Let us hear how it goes for you.
Thank you lure. I have lots of teams looking after me not just 1
I have a physicians team, an immunology team, a Urology team, my heart surgeon and cardiologist, plus my neurologist. I am very lucky. I drift from Private consultations and hospitals and to public consultants and hospitals. It is amazing the knowledge you pick up along the line. The Physicians team and immunology run along side the haematology team.
Yes I will keep you all posted. I am now fit and (healthy) walking driving working. I am just steady - not running marathons or anything. I have even put my golf clubs down till this gets sorted.
Thanks Lure good luck with your health too.
Caio for now. Good health to you all
Ps. I live in Qld Australia on the Sunshine Coast. We did have a short drought and some fires in Nov but nothing like Victoria and NSW We are the tropics so it soon rains and rains heavy. Big storm passed through last night Now the sun is out prob going to be in the 30’s today.
I am just worriet that they have put your therapeutic range down to 2.0 - 3.0 and your last low reading of an INR of 2.1.
You have have lots of different Specialists around you but you must have one Specialist (often the Hematologist) who understands how important it is for us to thin our blood properly.
My heart specialist and cardiologist want me on 2-3. The stroke specialist in rehab put the range up to 2.5 -3.5 i wasn’t happy. He also told me to stop aspirin I did object to this I told him to speak direct to the surgeon My surgeon disagreed and so did the neurologist he conceded and I now take my aspirin daily. I accepted the range 2.5 - 3.5. Which in my heart I knew to be wrong. I am much happier now back to 2-3 and the inr seems to be settling. I am much happier taking around 6 mg. Instead of the huge increases to 11 mg. And the bouncing around of different doses.
The biopsy hopefully proves what the problem is. It is still debatable if warfarin is causing the issue. Time will tell. I suppose.
I have been watching and listening to another APS specialist in the USA will send his link
Thank goodness you are recovering from a worrying series of events. It is good that you are having excellent care and your pee is now clear.
I am still learning about the trials and tribulations of APS and warfarin. I have been taking it for a year now and my levels range from 1.6 to 3.6, I have never had the same two consecutive INR results.
I have been experiencing pain and blood from my right kidney for the past few months and undergone various tests and scans to check for the re occurance of my kidney cancer I had nearly ten years ago. I am fine but have a large cyst which nobody seems too bothered about despite the occasional blood events. One odd thing is that every time it happens it is always in the evening, several hours after taking warfarin. Coincidence?
I can commiserate with kidney pain, it is unbearable and you don't know how to ease it. It was well you were taken into hospital and the problem discovered quickly.
I wish you every success with your next operation, and much better health thereafter.
Have you now found a Specialist for your APS? You talked about that 1 year ago.
You live in Great Britain and it should not be impossible to find a Specialist and to selftest to get your INR more steady. Do you also have positive Lupus Anticoagulant in your blood?
Watch your bloodpressure. You earlier said it was high. It should not be high with APS!
My INR is monitored by one hospital which my surgery has a contract with. My initial diagnosis of DVT and PE was with another hospital.
My Lupus specialist who is also an APS specialist is happy to let the other hospital and GP monitor me. (I think it is playing hospital politics over who can do it cheapest.)
Whenever I see him he is concerned about my lupus but not the APS.
I saw a haematologist at the other hospital once before starting Warfarin but have had no other follow up. If my INR is out of range I have a phone call to adjust the dose.
My blood pressure had been steadily increasing despite the introduction of Furosimide. I am now also taking Losarten and my blood pressure is back in a normal range. My GP is monitoring this.
I reread a little and we have talked two years and one years before.
APsnotFab suggested you should ask you GP for a referral to Dr Chris Edwards (see her answer to you I think it is 2 years ago) who should be knowledable of APS. Did you do that?
I asked if you are positive to Lupus Anticoagulant as that can have to do with your Warfarin-treatment? LA is one of the 3 antibodies we test for having a diagnose of APS. I am myself triple positive with high titres and we need a higher INR usually. There are different sorts of APS who need different anticoagulation drugs and different therapeutic ranges of INR to be without problem.
I also had very high bloodpressure and as you talk of breathing issues and PE in lungs perhaps, I think you should ask that they do an Echocardiography with dopper.
I have had that examination every year. They have found 2 leaking hartvalves and Pulmonary Hypertension. I keep my INR at around 4.0 and at the moment I am stable and feel ok. My very high bloodpressure is treated with drugs but when my Warfarin worked with that high, stable INR-value my high bloodpressure finally gave up.
I live in Sweden and have a machine to messure my bloodpressure when I need and another machine to selftest my blood in the finger.
You should also have a Fragmin-shot to take when your INR is too low. It is important to have a Specialist of autoimmun illnesses as it can be difficult to get a correct diagnose and who understands how very important it is that our too thick blood is properly thinned.
Thank you lure I will chase all this up. As you say yes my blood pressure has consistently been high. When they found the multiple clots in the kidney and inserted the stent, to my amazement my blood pressure became normal. I commented many times in the next 5 days to the nurses I need to come in here twice weekly as this hospital seems to have a calming effect on my blood pressure It has been normal since then on.
After heart surgery I did struggle to get my breathing correct I now have endurance with walking swimming and exercise. I do agree both these issues need to be consistently good. I had not thought of this affecting the INR
One can not just exist on prayers alone. I will do my best to follow your excellent advice.
Thank you again for standing by my side along this arduous journey.
Chris Edwards is my rheumy who, although he is an APS specialist does not monitor this condition for me. When I asked whether the other hospital's range of 2-3 INR was correct as I had read it should be 3-4, he said that range was for particular types of APS, not necessarily mine. He did not suggest further testing for specific types. He trained under Prof Hughes so I trust his judgement.
I wish he would take me on but my GP surgery has a contract with the other hospital and it is my GP surgery where I have my INR blood tests.
When I had several results over 3 but still less than 4, I was instructed to lower my dose immediately.
A self test machine is very expensive to buy and not all doctors will prescribe the test strips which further adds to the cost. You may have heard the NHS has problems with funding so I am unlikely to be given a kit.
My blood pressure is now under control, I bought a blood pressure machine and take Furosimide and Losarten and fortunately have had no further breathing problems, thank goodness.
Currently I am having fortnightly blood tests and my Warfarin dose goes up or down accordingly. Sometimes it is 7mg a day except one which is 8mg, other times it is alternate days of 7 and 8 mg, or 7mg for five days and two on 8mg or all vice versa. It seems every result brings a different plan no wonder my results are all over the place!
Fortunately I do not seem to notice very much difference to my general health except when I go well under 2, so I consider myself quite lucky.
Thank you for your interest and recommendations, although unhappily suggestions of further heart tests and prescriptions for Clexane would be met with the suspicion of being overly dramatic. If you remember when I had breathing problems the duty doctor half heartedly told me to go to the surgery the next day! On that visit she quickly changed her mind when I presented with a DVT and PE.
I always have a feeling though that I am visiting the doctor for a minor ailment and wasting his time, except in most cases I need urgent treatment and get a telling off for not going sooner. I can't win!
At least my lupus, thyroid, Sjogrens and autoimmune hepatitis are all under control so that's something I suppose!
I wish you could see Chris Edwards. Could you try again?!
I understand that your present Rheumatologist is most interested in Lupus as you say but perhaps he is not willing to let you have a Echo with doppler.
Are you positive to several antibodies or just one. Are you positive to Lupus Anticoagulant. Probably not as Chris Edwards said that an INR between 2.0-3.0 would be correct for you. There are different sorts of APS and you have several other autoimmun illnesses also.
As you say you do not react negative until under an INR of 2.0 That is good then. I am glad for you that the treatments for the other autoimmun illnesses work so well!
Anyway I should ask for an Echocardiography with doppler!!! if I were you. Easy done. I understand difficult to get but with your before high bloodpressure and DVT and PEs and APS your Rheumatologist would reconsider it.
Thank you for your kind recommendations. Prof Chris Edwards is my lupus specialist but he is not interested in my APS as it is monitored by another health trust. He did not suggest an echo Doppler but he has been my consultant for many years and knows me well, so I am sure he has my best interests at heart.
On my last routine visit in November he was pleased with my lower blood pressure and blood tests and I am to continue with my medication as usual. He was very thorough in looking at my arthritic joints and listening to any concerns. I was with him for at least 30 minutes
I was diagnosed with lupus and other autoimmune conditions at St Thomas almost twenty years ago so I have forgotten many of the different blood results!
The treatment of all these conditions is largely the same so I am not too concerned.
It seems Sweden has a much better health service if you are able to access these investigations, not like our poor old NHS!
Thank you for your post. Very interesting about the taking of warfarin and the timing of the bleed. It is definitely worth monitoring and to see if a pattern evolves.
Yes warfarin seems very difficult to stabilise sometimes very contradictive.
I wish for your health to continually improve too.
I watch Dr Graham Hughes medical videos. They are excellent.
Good morning. Just seen your message, thank you for enquiring.
I have moved from a house on acreage haven't worked since 2nd Sept apart from the odd telephone call. I live near the beach I cycle and walk. I found a village with 4 doctors and a blood testing clinic. Can you believe the lady called Jenny who takes my blood she also has APS and SLE, Jenny found she had these problems when they thought she had MS. Yes Jenny has the brain lesions too. I was amazed to find this lady in this very small holiday village 2 hours north of Brisbane. Jenny is still looking for a doctor that understands her issues. I have just been given an appointment, end of Oct for Harvey Bay Hospital, I requested an appointment with a Physician as suggested from my cardiologist.
Health wise. the move was a big thing. and obviously I over did it at times. I am well settled in. I look much healthier and I suppose feel a lot better. A few minor issues still. My blood pressure is consistently high again so back on the Blood Pressure tablets. Breathing not to bad. few times I began with Asthma type symptoms. but they seem to be settling.
My vision is a concern and my docs are hoping the blood pressure tablets help the Ocular Migraine, I get kaleidoscope vision. Thankfully only intermittently. Another reason I came to a small village with all the amenities I need, just incase I ever have to give up driving.
I can now walk to the super market, hardware shop hairdressers butcher bakers ( no candle stick makers). I can cycle to the doctors and chemist or take a 15 min walk
I am 25 minutes away from Hospitals public and private, I still have my GP 2 hours away until I find a good replacement. I will go and see the Physician and get a referral from him,
My major concerns is nobody can give any concrete answers or solutions and I dont want the other heart valve and left kidney to give way. I told them they are not having anymore major organs......... The colonoscopy 29th August showed the suspected internal bleed had stopped. They removed a cyst - al my bloods check bloods and sent me on my way. Next day I moved. The move has been superb....... Hopefully I can get a new normal.
How are you these days ??? You were having bit of a bad run last time we chatted. Let me know how you are doing now. I tell my new friend Jenny about all the Health Unlocked people. We all learn as we go along
I missed Graham Hughes Video talk last night will try and catch the copy.
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