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    Getting better! TV, music, Samoyeds, meditation. Prior to illness hiking, backpacking, skiing, biking, canoeing.

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  1. @MikeO, So sorry that you experienced that! I understand your concern about the docs. Sometimes I feel the same. Enough tests, poking and prodding already. And for what? For them to tell us we’re sick??? I already know that!
  2. @Water Lover, First I did a lot of research on hydration, then discussed it with my PCP. I set up a system to monitor and track my water and sodium intake. Then I gradually increased water and sodium, tracking this and matching it to signs and symptoms. During the process I was afraid that the effects would be subtle. But in reality the change was dramatic. I had been bedridden for 16 months due to symptoms of low fluid volume, BP and HR extremes. But when I reached 2 gallons of water, 10 grams salt, I WAS ABLE TO SIT, STAND AND WALK, without extreme BP changes, for the first time in 2 years! I had been in “pre-load” cardiac failure, there wasn’t enough fluid volume to fill my heart chambers before each beat. This gave me angina, it felt like trying to squeeze an empty bag! After one year at 2 gallons water/10 grams sodium (It was a full time job to do this), I was able to slowly wean, and now it takes 1 gallon of water and 3 grams of sodium to keep me stable! After 5 years of dangerously unstable BP, with lows of 60/30 and highs of 210/110, I’m now remarkably stable with values of 110/70 and the highest numbers I see are 130/85! I’m a new man! Good luck in finding your own “numbers”!
  3. @bumpkin, I didn’t see your current hydration and salt intake? What are your sodium and water intake goals? Do you measure/track your intake? It took me a year at 10 grams of sodium and 8 Liters of water to rehydrate! Since then I’ve been stable at 4 grams Sodium and 4-5 Liters water a day. Everyone's numbers are going to be different of course.
  4. I have a sensation of tingling or itching in both carotids.
  5. I despise the appointment-delay-test-delay-imaging-delay-referral-delay treadmill! Each go round takes months. I think they do it to keep us occupied.
  6. @Sarah Tee, I can certainly identify with the “dream” projects. For a decade I watched the jobs pile up and the deferred maintenance add up, from my perch on the couch. I’m finally able to slowly tackle them!
  7. @Sarah Tee, Wonderful in spring? In Maine? Have you been here? LOL! I read your note to my wife and she roared with laughter! Maine is a great place and my heart’s true home. It’s great in so many ways and times. The people are kind and helpful. The nature is glorious. Summer is grand! Cool but grand. Fall is delightful, crisp and clear. And Winter is a snowy wonderland. But Spring? Bugs and mud! Too warm to wear a hat but too cold not to. Too wet to go outside. The joke here is that we have 8 months of Winter and 4 months of poor sledding. Thanks for the cheer on a lazy Sunday morning! On a serious and wonderful note, my wife and I were married in October of 2019. I became seriously ill and disabled by December of 2019 and bedridden with limited function since then. Imagine my wife’s surprise when I started seriously cooking. In her own words “like restaurant food”?!? (Why is it that nobody believes that I can cook until they taste it?) She says that it’s like a dream. Suddenly healthy delicious food everywhere! 😁 It’s the little things in life that matter, like shopping for groceries, cooking and cleaning up afterwards! I laid on the couch and dreamed of this for years! 🌈
  8. @Sarah Tee, My recovery is exceeding expectations! All restrictions have been lifted, I’m walking 2 miles a day and can do light activity around the house! For the first time in more than a decade I can move around without pain! My hepatitis and pancreatitis are under control. And I’ve learned to keep my Dysautonomia/POTS under control with 4 hours a day of exercise, diet, hydration, sodium, meditation and visualization. It’s a lot of work but worth it! I still have health challenges but the overall improvement is amazing. I can live, dream and hope again! Wishing everyone the same!
  9. So sorry Sarah! I understand as I lost years to delays in testing, scanning and waiting on appointments! It seems like I’m constantly waiting, for the next appointment, the next doc, the next big thing, before anything can be done. And then it’s a 3 month wait for the test, followed by a 3 month wait for the doctor, then 3 months waiting on treatments, BUT by then my condition had changed!!! I’m fed up and I refuse to play the waiting game anymore. Fifteen years of my life lost already, I’m not accepting anymore unreasonable delays. Health care Access and quality are threatening all of us!
  10. @Sarah Tee @Pistol @MikeO Thanks guys, After 3 weeks away from home for my total hip and 5 out of the last 7 weeks, my wonderful wife and I have returned to our peaceful home in Maine! 😁 I continue to progress rapidly and am following all instructions. My hip feels great! After 10 years of feeling like I was walking on ground glass and limping on my cane I can walk normally just 3 weeks after surgery. Medicine may not be able to cure our Dysautonomia but they sure are performing Orthopedic miracles! Be well everyone.
  11. @MikeO, Thanks Mike! It’s already better, pain and function, than before surgery! I was able to weight bear, walk with walker and steps on post op day 1. The medical and nursing staff started calling me “the Rock Star”! Home on day 2 and my biggest concern is resting and going slow. Not my strong suits, but with my wife and mother on the job I have no fear! Life’s already one step better and I can see wonderful days coming!
  12. @Sarah Tee @MikeO, I can commiserate! I’m recovering from my total hip in one of the highest ranked surgical hospitals. And it shows, they are great, taking good care of me and they are all familiar with dysautonomia and POTS. And yet still they cannot conceive of my ABSOLUTE need for salt and water as MEDICINE! I’ve had to fight to get enough water. When I told staff that I must drink 8 liters a day of water and 10 grams of sodium. Everyone nods. BUT after watching my BP creep up from 120/80 to 150, 160 then 170, I asked for the IV flow rate. It’s set at 2 L per day!!! They act like I’m crazy requesting it be set to 8 L. I finally won the “battle of the water” by just constantly asking for Liters to drink. THEN they deliver all 10 grams of sodium at once at 10 PM. Good grief! Not when I needed it! I will say that they learn quickly. Once I explain they adapt! Just explained the salt need to my Peroperative management doc. NO PROBLEM she said and told the nurse “give him 1 gram hourly and HE can decide what he needs”! Gotta love her! Keep fighting the good fight!
  13. Drove down from Maine to NYC today. Staying at mom’s tonight, then my wife and sister are coming along to stay at the patients only hotel attached to the Hospital for Special Surgery. Need to be close for 5:30 AM surgical prep. Left Total Hip scheduled for 8:00 AM on Monday, 3/18/2024! Thanks to POTS Anticipating 3-4 day stay in the hospital “until hemodynamically stable”! That should be fun! 😂 Showing off my BP and HR variability for the med students! 😂 Every now and then it’s fun to be a Zebra! If I wasn’t going to one of the best hospitals in the World, with the Director’s of Surgery and Perioperative Management and Medical Education, I’d be more nervous. I know how wonky my vitals get just standing up or even taking a phone call! But I’m reassured and proud to report that 12 expert docs have examined and imaged my heart and lungs over the last several months. Four years ago cardiologists told me I was in heart failure, with ventricular hypertrophy, paralysis of the medial ventricular wall with an ejection fraction of 20%, and diagnosed with COPD, transient oxygen levels in the low 80’s and put on 4 liters of oxygen. BUT NOW I’m oxygen free and some of the best cardiologists have, unprompted, remarked to me on the “strength of my heart and incredible lungs”!!! 🫁 ❤️ The power of focused all out wellness AND transfer of my care to experts! NEVER. GIVE. UP. And now moving ahead boldly towards a healthier tomorrow! New hip, new teeth, new hearing, better vision (now 20/30, was 20/80!), improvement on the liver and pancreatic front, no longer malnourished from malabsorption, improved cognition, in month 5 of the CHOP exercise program, down 40 pounds! I’m a new and healthier man than I’ve been in 15 years! And just in time for my 60’th! Dreaming of walking my dog! Taking my wife to dinner!! Gardening!!! Light hikes, bikes, canoeing? Surely camping! A month ago I’d have laughed. But now…😁 Good healthy night everyone! 🐾❤️🕉️🌈
  14. I believe that my Dysautonomia/POTS was caused by trauma. Specifically the loss of 2 beloved dogs and my cat, unexpectedly in one month. They were my World and I was so distraught that I became ill. I am more careful to process grief and other emotions now.
  15. @MikeO, I may have forgotten to mention that I’m edentulous! 😂 The long term prednisone caused all of my teeth to break apart, become abscessed and require urgent removal over the last four years. Then I had surgical removal of large Tori on each quadrant. That didn’t go well as I became infected multiple times, breaking through first and second line antibiotics, leading to more surgeries and rugged bumpy conditions. This has prevented dentures. So my dietary choices have been limited! Fortunately the situation is stabilizing and dentures may be possible next year. My wife does an incredible job of researching and creating meals for me. Thanks for the tips! I’ll pass them on to my chef! Did you get referred to a dietitian after your GI diagnoses? I’m planning on requesting this after I recover from my hip! Good health, fortune and sleep!
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