My health history

[Jake91]

I was diagnosed with Catastrophic Anti-Phospholipid Syndrome (CAPS) or Hugh's Syndrome in early 2009 which resulted in a partial loss of kidney function (it was stage 5 renal failure with less than 15% functionality but I have since recovered to about 60% ish total renal function). I was 17 years of age at the time and am now 30 years as of July 2021. I am on two prescriptions: Lisinopril to help reduce protein excretion through kidneys and lower blood pressure, and Warfarin for the blood thinning effects to counteract APS. I have been vegetarian since the summer of 2013 and I am leaning whole food plant based. My health is and has been stable for the past 11 years (since 2010) and I saw a general improvement (along with a more stable warfarin therapy) since I went vegetarian. I self medicate with several supplements including Calcium, Vitamin D, Vitamin C, Co-Q 10, Alpha Lipoic Acid, Flaxseed Oil, and a multivitamin and have been on this regimen for the past 11 years.

[HollyHeski Administrator]

Hello, welcome to our forum and thank you for sharing your health history.

[kiminabmw]

Greetings and Welcome! You will find a wealth of information here, and its great that you are sharing your information with us, thank you. My nephew survived CAPS in 2019. Also nice to hear of another survivor!! Be Well.

[GinaD]

Hi! Thanks for joining and sharing. When dealing with a life long illness, such as ours, it is super helpful to share and glean information from others to help cope with APS's manifestations as we all grow and age.

[Klutzy]

That’s a lot you had to endure at only 17. It must’ve been really difficult. Glad you’ve improved and your health is stable.

[Hidden]

Hi. Thank you for sharing. I love hearing about others who have turned to natural healing. You have been through a lot at a young age. Glad your kidneys are better. You are on a good road, the less meds, shots and processed foods, the better. I am on warfarin also and supplements from my naturalpathic doctor. I was just diagnosed with limb girdle muscular dystrophy just a month ago, along with APS and refused prednisone. I am 56, I have 7 kids (4 adopted), I go nonstop and exercise daily. I feel blessed and I won’t let my diagnosis define me 😊. This is an awesome site for support😊

[KellyInTexas Administrator in reply to Hidden]

🥰❤️😘

[MaryF Administrator]

Hiya, you sound like you are doing well, please rgularly test your b12, folate, ferritin a lot of us have problems with this, and if vegetarian or vegan, it can add to this. My supplement masked my b12 deficiency until I came off it for a while, now doing very well on injections. MaryF

[KellyInTexas Administrator]

Hi Jake!

Wow what a lot you’ve been through.

I’m glad you have found us, and I’m glad we have found you!

We all learn from one another here, and I’ve found you never quite know how or when of from whom- but it’s always a great gift.

I see you are from the states. I’m in Texas- about an hour and a half north west of San Antonio. ( most of my team is in San Antonio, and some are in London.)

Where are you? Which state? Sounds like you are getting very good care.

Like you, I went into “early” CAPS very young. I was born in 1969, so APS was not yet “discovered”.

When I was about 18 months old I developed what was then known as idiopathic thrombocytopenia purpura. It’s now known as “Immune” TTP. It hit with a vengeance.

I was in the pediatric ICU ward the Amon Carter blood center in Ft. Worth not expected to live.

I was clotting and bleeding simultaneously. My pedi hematologist dosed me with massive amounts of steroids, and kept me in oxygen tents for pneumonia, as my lungs had small clots.

I remember spending much of my time until age 4 in and out of the hospital in oxygen tents- and having various complications that would land me in the hospital for weeks long stents .

My hematologists now tell me it was very likely CAPS, and the steroids turned it around.

I’m doing very well now with regards to ITPP we just watch the platelets.

Dr Jason Knight with the university of Michigan ( Rheumatologist) is probably the leading “academic” in APS right now, should your team need to reach anyone with questions, or send you to a specialty clinic here.

[Jake91 in reply to KellyInTexas]

Hi Kelly!

I am glad to have found this place (reference from my mother) and I am looking forward to hearing others experiences along with sharing more of my own.

I am born and raised in southwest Montana and currently live about 1 hour southeast of Butte. My case started as what felt like a strong stomach ache about 3 in the morning. It got a little better after taking a hot bath but returned by the late morning while I was at school. My parents and I went to a local clinic and by the next day I was life flighted to Seattle Children's Hospital. It took the doctors about a week to determine what I had (they were literally googling and got an answer from a doctor in Spain). I was diagnosed with CAPS and End Stage Renal Failure. I was at Children's for a total of 6 weeks where I was sent home on Lovenox for the CAPS and on peritoneal dialysis for the kidney disease. I was on steroids for a couple weeks in Seattle but I'm not sure if they really made much of a difference. I was only on the dialysis for a total of 10 months and I switch from Lovenox to warfarin after 2 years.

The doctors I have here are good but I don't really have a team that specializes in APS though my current doctor specializes in internal medicine. My mom and I have done research online and that is how we found all we know. It is also where I got the idea for all of the supplements I currently take.

Your case is definitely the youngest I have hear of. So glad you had great doctors when it all happened. Thanks for sharing your story!

[Apples2000]

I’ve never heard of CAPS. I am glad you are ok. I haven’t even been a year into my APS diagnosis. I have been thinking about all vegetarian diet too. I don’t eat much meat anyway. Glad you found this site. 😁

[Jake91 in reply to Apples2000]

What's funny about my diet being vegetarian is it had nothing to do with my health conditions. It actually came about for a 30 day challenge for the new year in 2013 and it stuck. 😁 It was after I went vegetarian I noticed the benefits from it.

[Apples2000]

Wow!! Was the right fit for sure then! I am working on a lifestyle change that means more vegetables and little to no meat- Less sugar too. I am really hopeful that I notice benefits too. When you feel better, it keeps you motivated. I haven’t felt very good in a while though. 😔

[Jake91 in reply to Apples2000]

What helped with this was my parents and sister all did this and we all noticed a general increase in well-being. My INR's have become very stable. So much so that my doctors and INR nurses are baffled by it because I haven't had to have any adjustments made to my dose (22mg/week) in years!

[Apples2000]

Holy 😳😳🤯!! That’s amazing! I gotta change my eating ASAP!

[disloyalorder]

Hi Jake 👋

It’s good to hear your story and nice to ‘meet’ you here. I’m glad your regimen is working for you as it can be a very rocky road managing all the different symptoms APS is associated with.

My first experience with APS was at 17 (PE) and it really was a shock at the time. At 24 I also had CAPS and that was a whole other story - pretty life-changing. It’s always so reassuring to find other people who’ve survived these sorts of experiences and are powering on. I hope that you continue to improve and you’ve got all your life’s dramatic health experiences out of the way at an early age!