Hi Friends- I just found out that I have a 4.5 cm mass in my kidney. I saw a specialist that has told me that I will need a partial Nephrectomy. This is major surgery, and I am really worried about it. The surgeon does not seem to be concerned about my APS, but I know the risks associated with surgery and blood clots. I am one of the lucky ones with APS in that I have 2 of the 3 markers. I did develop m first DVT in my lower leg, concurrent with my first COVID diagnosis back in 2020. I was in the hospital when they discovered the DVT. They treated in with Eliquis for 3 months and there was no movement or growth. Coincidentally, I recently learned that people with APS should NEVER take Eliquis. There is a new warning by the FDA. Just sharing this info in case your doctor does not know Eliquis is contraindicated for us.
Also, as a side note, I developed Optic Neuritis after being very sick in my mid-20's. I have suffered significant migraines for 15 years following the birth of my daughter. I also had massive uterine clots which resulted in a need for ablation surgery back then. A specialist I saw about 3 years ago told me that the Optic Neuritis, and migraines are related to APS. Has anyone else suffered with these issues?
Has anyone on this site, with APS, had kidney surgery? I could use some words of wisdom from people that understand APS.
Thank you and take care.
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myarabella
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So sorry to hear this news. It is always worrying for us.
1. It’s important for the following doctors to be working hand in hand on this:
1. Anesthesiologist
2. Surgeon ( ask about cell saver )
3. Nephrologist
4. Hematologist ( ask about switching to enoxaparin/ lovenox ( same thing) before surgery or even now preferably if they want you on a thinner at all times?
Note: very important that you are tested for an “anti factor Xa “ level starting Before and after surgery. That’s the test that’s done in the hospital ( make sure the hospital you are having surgery in has the machine that can run this in hose - not a send out results are back in about 1.5-2 hours)
Another note: the “X” is Ten - as in Roman numeral ten.
The test can be a bit confusing when ordered and coded into system. There is a “factor X assay” - not the same. The result is a send out - takes three days and result is reported in a percentage.
For APS patients the dosing should be split dose- that means every 12 hours and the dose should be 1 mg / kg. That means 1 mg per 1 kg of body weight.
It is important all doctors understand APS patients are / can be/ in a prothrombotic state.
Hi Kelly- Thank you so much for your response. I only take 80mg of aspirin for the blood clotting. I took Lovenox, then Heparin when I was pregnant in 2007 and I took Eliquis for 3 months in 2020 for a lower leg DVT with COVID. The clot was small and resolved. I have not encountered any other clots, but I am very worried because of this surgery as it is major and will take 4-5 hours without complications. Does any of the information you gave me change based on what I have shared? Thank you again. 😊
I’d , in fact, learn a little bit about heparin ( fractionated ( LMWH) and unfractionated ( bolus). - at least a refresher read if it’s been a while since pregnancy and gain an understanding of the IV bolus- the unfractionated version.
I only say this because it will make it easier for you to understand your next hematology application. Or, it will allow you to ask/ initiate the types of questions that should be asked.
And surgery can ( does not mean it will) provoke our already “prone to clotting” blood into actual clotting. Surgery is a known clotting trigger for APS patients. I’m sure your hematologist knows this.
It makes things easier that you are not already on warfarin. ( no need to come off and bridge to LMWH. ).
You will likely need to come off ASA ( aspirin ) a week or so before surgery. Your body will need to replenish with new platelets.
Your hematologist might want you on a tiny amount of heparin post surgery, ( Bolus) in hospital, and maybe even a tiny amount injected into subconscious fat every 12 hours ( you administer yourself into tummy fat - ) once home- but it might be affect the kidneys so you will really have to ask about that. That’s a big question. Since you are not needing warfarin, I can’t imagine you would need very much LMWH- but I’m not a hematologist…
The question is- aspirin might be just fine for you.
This is why it’s so important to have a team approach- and your hematologist much work with nephrologist- must work with surgeon….
On a side note- I’ve been on it all- including Eliquis. ( apixiban.) even when we knew it was not recommended. It was just trialled at a higher dose for me- but didn’t work.
I have very bad migraines also. I will say - im on low molecular weight heparin now- and the migraines are actually better than when I was on warfarin. ( which is mostly what I’ve been on.)
I also have optic nerve atrophy. ( the thinning - death- of the optic nerves. From ischemia.)
I realize yours was neuritis. It does sound like you have neurological issues popping up here and there. So common for APS. Sorry to hear now you are having the kidney involved.
I have a mass in my kidney. It is a solid Heterogeneous mass 4.5x4.4x4.5 on the anterior cortex of my kidney. Due tonthe size, cancer is suspected but not confirmed yet. I am actually having an MRI today with contrast. More to come on this. Thank you so much for all the information. It is very helpful.
I’m hoping you get hopeful news in one way or another today.
Our aim is to help and support ( by giving you guidance on how to ask helpful questions to your doctors and help you think through together best to do that though our collective experiences .)
One personal example comes to mind now.
I’d like to help you not deal with migraines as frequently or as severely as you have been on top of everything else.
I’m not sure if you see a neurologist for these migraines or not, but is there anyway you could be referred to one? I suspect you should have one anyway.)
There has been a revolution in migraine treatment! It’s CGRP targeted treatment- it’s a once monthly self administered sub cutaneous injection . I use Aimovig 140 mg. You will also need to be prescribed an oral tablet of either nurtec or ubrevly to treat “ break through” migraines. They are called migraine abortive medications.
I tried nurtec, and it did not work, so was switched to ubrevly and it was great.
I went from about 13 -15 migraines a month ( -about 1/4 of those included vomiting) to about 2, and not as severe because I can get the ubrevly on board very quickly.
Very helpful! I just got Aimovig, but nothing for break-thru. My doctor may want to see if the Aimovig is sufficient. Thanks again Kelly.. i really appreciate your insight.
Nurtec didn’t work for my migraines (life -long, but moved from Occipital ( managed for 10+ hrs with Botox) to irretractable Vestibular and Occular migraines by APS + Cerebral Venous Arterial Thrombosis) -ReyVow 50mg. Has been the only break through that works for me since ICU stay for brain thrombosis ….
Great advice, it is so important that the team talk to each other and understand fully the protocol that KellyInTexas has outlined so clearly. I hope your operation/procedure goes really well, and try not to worry. MaryF
This sounds a scary surgery-and I wish you all the best for a quick recovery. They can treat you with Heparin IV which id easier to control dosage than Warfarin but can't help you as I've never had this kidney problem. Stay safe and keep well!
I had migraines prior to my diagnosis and treatment with warfarin, which I have taken for 24 years now. My blood tests used to be positive for APS, but ever since accidentally discovering a gluten sensitivity and going gluten free, my APS markers have been negative. I have had a hip and knee replacements and bridged with no problem. After your surgery, and with help from your doctor, you might explore tying an elimination diet in case you have a food sensitivity. Prof. Hughes himself noted a strong correlation between APS and gluten sensitivity.
OK, so I do have APS (and on warfarin after stroke), and at one point I had suspected kidney involvement - but thankfully turned out not to be (or test results returned to more or less normal at least). I have not had kidney surgery, however I do count among my friends (really my wife's close friends) one senior urologist (and kidney surgeon...) and one person recently diagnosed with kidney cancer (now had full nephrectomy). Kidney surgery has been a major topic of discussion recently...
If it was me in your situation, I would be wanting my APS specialists and kidney surgeon working together, get them in same room with you if possible
I'd be looking for a very frank discussion on partial vs. full nephrectomy, risks and benefits, taking APS into account. Full nephrectomy sounds worse but is actually a much simpler (and quicker!) op, as I understand it - for a partial they have to cut the tumour out of the kidney (and be sure they have clear margins), whereas for a full they just tie off the plumbing (mostly blood vessels) and pull the whole thing out with the tumour (no issue with getting clear margins). We have a lot of spare kidney capacity, trying to save part of one sometimes ain't worth it (as long as there is nothing wrong with the other one) - yes then you only have one, but you only have one heart, one liver, one pancreas etc.
Kidneys are very vascular, they bleed, often seriously, tying off blood vessels, even large ones, is actually a much lower risk than cutting into kidney. If you want full (scary) background on potential additional APS kidney risks, watch Prof Cruz here youtube.com/embed/7_jJP5jze7c talking about consequences for APS patients from just a kidney needle biopsy. I was being lined up for such a biopsy until seeing that video (or, specifically, until my wife, who does biopsys herself, saw it and "needle biopsy yeah not a problem" became "you are not having it, I won't consent" ).
Try not to worry about what the mass actually is at this point, because you almost certainly will not know until after they take it out and do the full histology - apparently that's just the way kidney cancer is done, and it might even not be cancer (my friend was told maybe 10% chance, but in the end it was cancer).
Very insightful. My issue is that I am also a diabetic, so there are competing risks that we will have to consider. I have not yet gotten the surgeon and the APS doctor together. I am working on that and will hopefully be able to weigh all options very soon. Thank you so much!
I watched the video. I am imagining of a biopsy is dangerous for someone with APS, a partial nephrectomy has to be exponentially worse. I will definitiely discuss this with my surgeon and other doctors. Thank you again for this very important information.
i’ve been told in the last few weeks that I need to habe my left kidney removed due to having a cyst on it that is larger than the kidney itself! They’ve also told me I have 3 small cysts on my right kidney but they’re just going to keep an eye on that one. The Dr has also said that the cysts may be cancerous.
I’m seeing my surgeon in a few days to discuss the operation, I’ve had APS for over 20 years and apart from generally feeling unwell quite often and memory problems I think I’ve had it pretty lightly. Currently on Warfarin,steroids, and blood pressure meds
Your situation is very much of interest to me. I will be meeting with my surgeon this week and we have lots to discuss including the pros and cons of partial nephrectomy versus full with competing issues of diabetes and APS. I am only 2 times positive for APS, taking only aspirin. I suffered multiple miscarriages and took Lovenox, then Heparin when pregnant. I also took Eliquis when I had Covid becase a small lower leg DVT was found, but I only took it for 3 months. I have had APS for 16 years that I am aware of, but my doctor suspects I have had most of my life. I too am otherwise quite healthy despite everything. Let's stay in touch.
I had a kidney transplant back in 2000 which was high risk due to my APS. I was fortunate to be based at Guy's hospital in london. All my consultants worked so well together to draw up an agreed plan of action.I had 2 days of plasmapheris to absorb as many APS antibodies as possible (a new treatment at that time) I stopped my heparin just before the surgery and recommenced as soon as possible after the op.
I have APS and found out last Saturday from a hospital letter I received that I have chronic kidney disease and I’ve previously had a stroke. Both we’re unexpected and I’m in bits. I’m going to take matters further because nobody told me even though it states these findInge were discovered in 2021 when I had a CT scan, I’m terrified,
I understand. My tumor was found in 2021. My doctor, who was supposed to be guiding my care, left the medical group where I was being seen and nobody followed up with me to tell me that tumors larger than 4cm require further intervention. Now I am facing a possible cancer diagnosis and a nephrectomy. Please keep me posted on your case. Take care.
Thank you and please keep us updated. The things that go through my mind is like a living nightmare. It’s even more difficult when you know nothing about kidneys.
Thanks Kelly. It seems that the letter was worded terribly. I was told yesterday that my GP back in 2016 referred me to the hospital to have my kidneys checked, I don’t remember this at all. There is nothing else wrong with me thankfully but whoever dictated the letter needs to stop and think about what they’re saying. I was terrified but for once all is good.
You have so much help and good advice here. I can’t add anything to the discussion of kidney issues. I am triple positive, had DVT and PEs, suffer from horrible migraines. I was on warfarin for over 10 years, with very unstable INRs despite obsessively counting my vitamin K mgs. I was trialed on Eliquis (apixiban) as a last ditch attempt to control the migraines. It helped the migraines tremendously, and I no longer have the severe nosebleeds, and can eat in a more relaxed manner. I am also on Aimovig, a CGRP injection. This also helps. I think my body was trying to reject the warfarin all those years. The move to Eliquis is very successful for me, it’s about 6 years now. Fingers crossed, as I get older, I’m 70 now and in the midst of trying to recover from covid. I wish you the best and I hope you’ve had some answers from your doctors and you have some peace of mind.
It has been a rough go, 4 weeks and counting, but I’m finally feeling like things are improving. I got very sick with each of the 4 vaccines, so I really thought that I’d I did catch covid, that my case would be very mild. Not so. Sleepless nights, terrible coughing, cognitive issues and extreme fatigue were the worst parts. It seems like most people assume all covid cases nowadays are “like a cold”. Not so!
Immunity Booster is certainly looking at the bright side, which is the best way to look at anything :-). Hope you’re getting better Kelly, and the leg is getting back to normal.
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