I haven't made a post about what is going on with me personally for a while.
In December I was admitted to the hospital for a kidney infection and kidney stones. While I was in there the team of internal medicine doctors who were taking care of me came in and told me that my left kidney has completely failed and that if it continued to hurt me or cause infection they might need to remove it in the future. They did, however, tell me that the right kidney is picking up the slack. So that was and is a pretty scary prospect.
I recently had another UTI and was pretty concerned that it would mean the kidney had to come out.
But wait, there's more.
They also told me that during the CT scan of my kidneys they had seen that I had a nodule in one lung and enlarged lymph nodes in both of them. They were concerned that it was lymphoma or sarcoidosis. Neither of those were good prospects.
I had to have a biopsy of the nodule. They numb you up, sedate you and then use a fluoroscope to guide a needle through your back into your lung to do the biopsy. Fortunately, that was ok.
So I have been having all sorts of tests and seeing specialists for the last few months. When they ran a PET scan they found possible problems with my thyroid and cervix as well. That added on more tests and specialists.
It is a lot of stress to deal with.
I also found out that I have a tortuous aorta. That could be related to my lupus because blood vessels are made of connective tissue and lupus weakens connective tissue. This could cause blood pooling and that means it likely is related to my POTS.
https://www.heart-palpitation.com/tortuous-aorta-causes-palpitations.html
https://www.reference.com/science/tortuous-aorta-69e5597d9f8c4516
https://discoverysedge.mayo.edu/2016/08/09/just-in-time-technology-saves-patients/
https://www.hopkinsmedicine.org/healthlibrary/conditions/cardiovascular_diseases/abdominal_aortic_aneurysm_85,P08247
Connective tissue diseases that are also associated with aortic aneurysm and POTS are Marfan's Syndrome and EDS.
https://www.ehlers-danlos.com/aorticdissectionday18/
https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Byers_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf
In December I was admitted to the hospital for a kidney infection and kidney stones. While I was in there the team of internal medicine doctors who were taking care of me came in and told me that my left kidney has completely failed and that if it continued to hurt me or cause infection they might need to remove it in the future. They did, however, tell me that the right kidney is picking up the slack. So that was and is a pretty scary prospect.
I recently had another UTI and was pretty concerned that it would mean the kidney had to come out.
But wait, there's more.
They also told me that during the CT scan of my kidneys they had seen that I had a nodule in one lung and enlarged lymph nodes in both of them. They were concerned that it was lymphoma or sarcoidosis. Neither of those were good prospects.
I had to have a biopsy of the nodule. They numb you up, sedate you and then use a fluoroscope to guide a needle through your back into your lung to do the biopsy. Fortunately, that was ok.
So I have been having all sorts of tests and seeing specialists for the last few months. When they ran a PET scan they found possible problems with my thyroid and cervix as well. That added on more tests and specialists.
It is a lot of stress to deal with.
I also found out that I have a tortuous aorta. That could be related to my lupus because blood vessels are made of connective tissue and lupus weakens connective tissue. This could cause blood pooling and that means it likely is related to my POTS.
https://www.heart-palpitation.com/tortuous-aorta-causes-palpitations.html
https://www.reference.com/science/tortuous-aorta-69e5597d9f8c4516
https://discoverysedge.mayo.edu/2016/08/09/just-in-time-technology-saves-patients/
https://www.hopkinsmedicine.org/healthlibrary/conditions/cardiovascular_diseases/abdominal_aortic_aneurysm_85,P08247
Connective tissue diseases that are also associated with aortic aneurysm and POTS are Marfan's Syndrome and EDS.
https://www.ehlers-danlos.com/aorticdissectionday18/
https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Byers_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf
Sorry to hear of your woes :( I am about to commence the Ortho Hyper challenge, I have connective tissue issues, inflammatory conditions and a lovely double curve with right angle kink tortuous right carotid artery, and a left carotid, that has wriggled in all the wrong places. There are others, but they have not checked the rest of me yet. My eyes are full of them too. Sometimes you do wonder if the medical profession ever did basic physiology ;) Keep fighting :)
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