AJVDK Posted July 27, 2013 Report Share Posted July 27, 2013 Hello All,Wow is been a very long time since I have posted here, or even been on the site. I wanted to let you all know I am finally feeling like there is alight of hope. As some as you know my POT/ Lyme's had gotten very bad four years ago. Things got so bad for me that I was placed in a nursing home. After two years in a nursing home things where still getting worse. I was on IV's 24 hours a day, I was having infection after infection, sezious..... they transferred me to hospice where they gave me 3-6 months. While there things improved some the moved me to another nursing home where I was on full bed rest, again IV's, Feeding tube. I begin to lose hope that I would ever get better. Then finally in May of this year I went into septic shock, where I was on a vent for 8 days. Finally all my doctors where in on place. They treated the infection. After I was out of the ICU the move me to the cardio floor where. I was there for 3 weeks during that time the doctors worked close together. They came up with a new treatment plan. I was set back to the nursing home where my doctor here is working hard with my POTS doctors. with new meds I am finally doing better. I made 4 and a half mins standing before I started to pass out. I not been up that long in over six years. I am to get around in my wheelchair, and I am relearning how to walk with a walker (while my body will give me the time). I know that 4 and half mins does sound like much but its open up so much for me. If things continue to improve I hope to be able to leave the nursing this late fall or winter if I can reach the rest of the goals set. The doctors are going to required me to be un the wheelchair as it's not safe for me to be up by myself, as we don't know when I will pass out, but I can have a high quality if life in the chair. Plus we never know what the future holds. It's nice to finally see some hope, and I wanted to share this with all of you that have support me along the way. Thank you for all the prayers, cards, and those of you that came to see me it means more the I can explain. There is hope we just need to hang on until things get better! Amy Quote Link to comment Share on other sites More sharing options...
corina Posted July 27, 2013 Report Share Posted July 27, 2013 Thanks so much Amy for the update. You really have gone through SO much, I think none of us can imagine. Over the years you have amazed me because no matter how weak and sick you have been, you are an amazingly strong person. I admire your strength and can only wish for your health to improve so that you will have the best quality of life that is possible in your situation. I hope you will be able to leave the nursinghome this fall/winter and be with your loved ones. You are an inspiration to all of us! Sending love,Corina Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 27, 2013 Report Share Posted July 27, 2013 Hi Amy,So glad you had a team of doctors in the right place at the right time. It's amazing what can happen when a team of doctors can work together. Wish all of us on the form could have that kind of effort from doctors. So happy to hear that you are making improvement. Keep posting and updating. If you don't mind sharing, what new medications have your doctors put you on. I am curious because I have a son with POTS that is unable to stand up and walk due to severe tremors. Hope you are having a good day. Quote Link to comment Share on other sites More sharing options...
badhbt Posted July 27, 2013 Report Share Posted July 27, 2013 AJDVK,Wow what a story, you sound like a very strong person. I can't even imagine. I did have one question. Did your Doctors agree with your Lyme diagnosis? Did Lyme cause the infections? Quote Link to comment Share on other sites More sharing options...
AJVDK Posted July 28, 2013 Author Report Share Posted July 28, 2013 Yes my doctors agree with the Lyme DX but it was made to Mayo. With Mayo DX me its made it much easier. The infections have been from PICC lines, PORTs, and my pacemaker. I got MRSI, and can't seem to keep a line for treatment as I keep getting septic. I not with on line, and have only had to have IV fluids a few times since May which is great. I still have a feeding tube though. I hope that helps. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 28, 2013 Report Share Posted July 28, 2013 Yay!! For you I am so sorry you have been having such a rough time!! My fingers are firmly crossed that you can continue with such great progress. Quote Link to comment Share on other sites More sharing options...
davecom Posted July 28, 2013 Report Share Posted July 28, 2013 Thank you for sharing your story. It is inspirational. I wish you a safe journey of continued progress. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 28, 2013 Report Share Posted July 28, 2013 Congrats! That's super news that you're able to be up for 4+ minutes! That's great success and so hopeful for the future!! Sure hope it continues.Thanks for sharing your excellent news to inspire us all. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 28, 2013 Report Share Posted July 28, 2013 Amy--so glad you are doing so much better. Thanks for updating DINET. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 28, 2013 Report Share Posted July 28, 2013 Amy,wow, sounds like you've been through a lot in the past couple of years, and I can only admire your positive attitude.Please keep us posted on your progress.Best,Alex Quote Link to comment Share on other sites More sharing options...
Loulou Posted July 29, 2013 Report Share Posted July 29, 2013 Amy,Hi. It is wonderful to hear such great news. I wish you continued success with the new meds. I hope those standing minutes continue to increase. Quote Link to comment Share on other sites More sharing options...
bjbens Posted July 29, 2013 Report Share Posted July 29, 2013 What a remarkable story. Very encouraging - thanks for sharing! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 29, 2013 Report Share Posted July 29, 2013 Wow! Congratulations on your improvement! Very happy for you!! Quote Link to comment Share on other sites More sharing options...
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