Hello Dan, thanks for the update. In my opinion (as an engineer), you should get the pacemaker as soon as possible. Why wait until you are weaker. You heart will now benefit from a higher pulse rate (you know the saying: if you don’t use it, you loose it). Now is the appropriate time to undergo that pacemaker procedure. Take care, Ronnie Shand Mechanical Design Engineer

@amyloidosismyjourneytosucc4995

4 жыл бұрын

I agree Ronnie. We're moving forward.

Hi Dan, Was so good to see you! Thanks for sharing. Sorry to hear about some of the issues you are going through. Your sharing continues to help me - much appreciated. I had a pacemaker put in and I could not believe how much better I felt. contact me if you want to talk. I get the abdomen thing- That is my ongoing saga. Dr had me try a med to reduce bacterial overgrowth and a FODMAP diet- seems to be helping. Take care especially in these times. Again, you made my day- thanks for posting!!

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Wow, I was excited to hear the pacemaker helped you! Yeah, the abdomen thing is a challenge. What were you taking for your bacterial overgrowth... was it Xifaxan?

@toma2292

4 жыл бұрын

@@amyloidosismyjourneytosucc4995 Yes, Xifaxan. sounds like you have tried it. I'm on my second course Finished. a few days ago. I felt like a new person the day after the pacemaker. I was at heart block 3 and going long with no heart beats. I said I would never take life for granted after that day- but I do. I had an older Dr who came in to check me the day after the surgery as my Dr was off. He said I am so glad we have this technology, we used to watch people like you die. Glad to hear from you. My family Dr. did say I am a higher risk with the Corona - trying to stay home. I hope you are taking care as well.

Okay it’s apparent I’m binge watching now. lol 😂. You are the only person I’ve found with information. I’m living in the same situation. I’ve been feeling like trash and I just couldn’t put the pieces together.

It's great to see you Dan. Thanks for sharing your journey with us. Ditto for the GI issues. Just found out one of my lungs was drowned, to add to kidney problems and the new center is taking care of that. I'm praying my lung comes back. You know, I was a lousy basketball player, although, I loved it and in this journey, I'm playing zone. Good luck Dan.

@amyloidosismyjourneytosucc4995

4 жыл бұрын

thank you

Thanks for posting Dan, it's great to hear your matter of fact rundown about your health. I have similar problems with the Gi caused by attr amyloidosis it can be a nightmare sometimes. My Thoughts and prayers are with you keep healthy in these dark days

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Thank you Mike

Hi Dan, thanks for the update! I'm curious about the stomach problems you are having. I have Amyloidosis and had my sct in 2014. Kidneys primarily. What you described as inflammation, irritation, etc. Of your stomach sounds exactly like what I've been going through for years. Please share if you get any answers. I've had a battery of tests and have just given up ever finding the reason why, so I'm just living with it now. Thanks for talking about this disease for all of us struggling with our own battles against it!

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Hi Julie... sorry for the delayed response. Yeah, it's so frustrating. I am in the process of literally eating ONE food source at a time attempting to figure out what causes the swelling and discomfort. I have seen some improvement with CBD, but I've tried many types, yet this one may be helping. I'll keep you posted.

My prayer and very best wishes from my heart for your health.

Did you have ever high albumuin levels in your urine? I guess thats a protien,..

@amyloidosismyjourneytosucc4995

16 күн бұрын

I did… come on to our zoom on Wednesday! us06web.zoom.us/meeting/register/tZAuf-GuqzgsEta_IXHOSmCoFu9Lj-oRXE1C#/registration

How much the nt prob now.. My sister also in fighting with amyloid her nt prob is 1700 it was 5000

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Wow. 978 right now. Mine started at 1800.

@qaqaization

4 жыл бұрын

@@amyloidosismyjourneytosucc4995 its nothing compared with 5000 but kappa light chain was 160 now 140 and we are now in mayo clinic for 1 month and she was treated in germany haidelberg hospital . Why you dont do stem cell transplant?