MaineDoug

@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.

@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!

@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!

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! 🐾❤️🕉️🌈

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.

@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!

Yes! I’ve had high blood glucose for 8 years, it was attributed to Prednisone and the related weight gain. That said my A1C has been reasonable, varying from 6.2 to 6.4 over the past few years. I’m currently on Metformin, 1,000 mg in AM, and 500 mg in PM. I’m hoping that the weight loss and exercise will help lower it.

@MikeO, Are you familiar with mission cure? They are a group of researchers, docs, donors, and patients committed to curing common, serious conditions without treatments or cures currently. They plan to identify and target such conditions one at a time, with a goal of rapid identification and development of cure/treatment in 10 years. They are 6 years into their Chronic Panc effort and their CEO promised at their annual conference that they are on track to have effective treatments within 4 years. Great folks! Link at: https://mission-cure.org/chronic-pancreatitis/

@MikeO, Way ahead of you Mike! Since my initial Pancreatitis diagnosis 4 months ago, I’ve lost 36 pounds, from a Prednisone/bed ridden weight of 235 pounds down to 199! I’m no longer officially obese! I plan to lose another 36 pounds. I’ve switched my already healthy diet to remove any remaining inflammatory foods and continue the CHOP exercise program. And I am committed to meditation and breathing techniques to lower inflammation. I spend 3-4 hours per day on these. I believe that if I hadn’t been doing these things my MR CRP wouldn’t have worked out so well! When I met with my GI doc in January he STARTED the discussion with “What’s more important to you Doug, Quality of life or quantity?” Me: “say what? Well….quality, but I need to support my wife at least until 65”, GI: “That may be a reach, we’ll see”. THAT IS NOT HOW TO START A DISCUSSION WITH A PATIENT REGARDING A NEW DIAGNOSIS! I didn’t even tell my wife this, figured I’d wait until the MR CRP then deal with the reality. But that was a heavy load to carry around for 2 months waiting on the test!!! And the “reason for test”, wasn’t exactly reassuring either: “Please focus on identifying malignant processes and tumors”!!! I figured that my goose was cooked. Now I feel like I have a second chance at life! And I plan to make every moment count! I feel like Scrooge on Christmas morning. I CAN’T WAIT TO GET WALKING AGAIN! THE HIGHLIGHT OF MY DAY WAS ALWAYS THE 4 MILE EVENING WALK WITH MY BELOVED SAMOYEDS. They miss it and I miss it! Hoping for one month to restart. Sorry to hear about your Barrette’s. I hope the meds do the trick. I’ve been on Pantoprozole for several years and I like it, no side effects.

Great news from my MR CRP! Mild diffuse fatty changes in Pancreas and Liver! Small benign cysts. No blockage, sludge, stones or malignancy! About as good as I could have hoped for!🎉 Plan is to monitor yearly for a decade then d/c monitoring if no changes! I was prepared for the worst but hoping for the best! Celebrating in Maine! 😁 Best wishes to everyone!

@MikeO, Thanks Mike! I’m really looking forward to walking without pain or limping for 5 years! 🎉 I’m having my MR CRP at 3:30 today! I’ve been getting IV saline since 8:00 to allow NPO. Hoping for good results! 🕉️☯️🙏🌈

Dysautonomia certainly can affect the erectile mechanism.It has caused my ED. But it’s no match for Viagra/Sudenafil, thank goodness! I’ve lost enough function already! Cold makes me feel ill, shivering. But Heat is worse for me, sweating, flushing, pre syncope, confusion, increasing HR and BP. Fortunately I live in Maine, but I’m still in air conditioning anytime it’s over 70 F.

@DanteMccoy, Thanks for the support and kind offer of assistance! I hadn’t heard of the 1D-LSD. But there is a lot of activity in my area around Ketamine and Psyloscibin. I wonder if they are similar?

@Sea otter, Thanks! I was feeling very overwhelmed! I just got back from my preop visit to HSS in NYC. Twelve hour drive, but I get to stay with my mother! ❤️ Over the week I had 12 MD appointments! 4 zoom, the rest physical. All with heavy Manhattan traffic, thank goodness for GPS! It pushed me to my physical, orthopedic, PEM, and emotional max! I needed to drink an extra gallon of water and stress dose steroids each day just to survive. The trip home was the last straw! I’m wiped out. But I have to head back in 12 days for surgery. Then I get a shiny new hip for my 60’th birthday! 🎉

@WreckingHotelRooms, There are internet calculators to help in quantifying salt vs sodium, https://foodwatch.com.au/blog/measures-and-conversions/item/how-to-convert-sodium-to-salt-and-salt-to-sodium.html is one example. For the salt I’m using (different salts may have varying sodium values) 5 grams of sodium is in one teaspoon of salt. I constantly monitor my salt cravings and match them with my sodium levels after blood tests. Make sure you get medical advice as individual needs vary widely. Hydration is harder to quantify in my humble opinion. More trial and error to find the optimal quantity for you. But you know it when you find it! Before hydrating and salting I was bedridden for 16 months. Within 3 days of finding my “numbers” I was sitting and walking! Another thing helping me with POTS in general is the CHOP POTS exercise program. I’m on month 4 and it’s really making a difference. Just search “CHOP POTS” and you’ll find it. But please be careful and follow medical advice. Everyone is different, with varied histories, meds, side effects, and comorbidities. What helps one of us can hurt another! Best wishes from Maine!