ET and Renal Atrophy?

[Munderdown7264]

Hi all! I have recently been diagnosed with ET (one week ago). I went Friday for my blood tests and an ultrasound of my spleen. She did an ultrasound of the entire abdomen and the notes show bilateral renal cortical atrophy. My doctor hasn’t seen the results yet, since it’s the weekend, so I haven’t spoken with him yet. I was wondering if anyone here has experience with ET causes issues with their kidneys? Or if this is an incidental finding caused by something else entirely…

Thank you all so much for your insight! This site has been so helpful and reassuring to me

[Wyebird]

Good morning, a huge welcome. I can remember that the lead up to diagnosis was worse than the diagnosis it’s self. You are extremely early days your head will go round and round. Every twinge, ache, pain, headache and thought will come back to ‘is it my MPN’?My kidneys are ok but medication can take it’s toll. Make a list of questions and fears and take to your next appointment. You have a long journey ahead but remember this site guarantees you are not alone. Good luck.

[jointpain]

Sorry for your diagnosis, my wife had a very large spleen which ruptured three years ago, during her stay in the French hospital she had numerous scans etc. They found that one of her kidneys was atrophied, probably due to blood clots in the preceding year, during that preceding year she had gone to her GP a number of times having noticed her blood BP had increased noticeably. The GP didn't do a thing, and suggested she came back in a year. After her Splenectomy she was diagnosed with myelofibrosis. The other kidney is still working at a good rate, as far as we know.

[Mazcd Partner MPNVoice]

hello Munderdown, and welcome to our forum. It is very daunting when you are first diagnosed with a MPN, so I am glad that you have found this community and that it has been helping you. I would advise that you read the information we have on our website mpnvoice.org.uk and take your time to process everything. I do hope that the issue with your kidneys is sorted out soon. Best wishes, Maz

[Hidden]

Your bilateral kidney atrophy may be related to your ET or may be a separate issue. When you speak to your MPN doctor you might need a nephrologist consultation

[hunter5582]

Hello and welcome to the forum. It is hard to figure out what is or is not related to the ET. There certainly can be links to something like renal atrophy if you have had clots, but it could also be unrelated. One of the key thing to understand about ET and the other MPNs is they are at the core inflammatory disorders with a host of secondary symptoms related to the overproduction of inflammatory cytokines. Thrombosis, hemorrhage, and microvascular symptoms are only part of what is involved. The good news is that you will have plenty of time to learn more and sort all of this out.

One of the most important thigs at this point is to set up an appropriate care team. One key player on your team is a MPN Specialist (not just a regular hematologist). MPNs are rare disorders and most doctors lack the expertise to provide optimal care. It sounds like you will also need a nephrologist on your care team. Do not expect most doctors to understand ET and how it may manifest. It is very important to ensure that all of you providers collaborate, particularly with the MPN Specialist. You are the key player in making this happen. You are the captain of your care team and it is up to you to ensure that all of the members of your team stay up-to-date and have the relevant information they need to provide your care.

Here is a list of MPN Specialists just in case you have not seen this. mpnforum.com/list-hem./

All the best to you.