A week of revelations, scary and a triumph
I had a very bad wake-up call and a good revelation, all in one week!
I guess we'll start with the bad so we can finish off on a high note. My husband and I were talking about my rollercoaster of health issues over the last year and a half, and we talked about how truly scary it was back in September 2008. That was when I was only taking in about 500 calories a day, had a central line for 12 days to get TPN at home to try and get some calories, and just how desperately ill I was and how worried we were, and how we felt powerless because we were in this wait and suffer mode...all of the above I was well aware of, and of course aware of how concerned my family, and especially my kids were about what was going to happen to me, but until Sunday, I didn't realize how close I may have come to actually dying, or at the very least, how close I may have come to having some serious, permanent organ damage from the malnutrition. My husband told me that there were times when I would fall asleep on the couch next to him because I was just so weak, and he would look over at me sometimes, see me asleep with my mouth open, and wonder if I was dead, if this was it!! OMG! My husband does not have a flair for the dramatic, far from it, so I had to take that for the real deal! It just really scared me into a reality when he shared that with me, and I won't go back there again. I will NOT let anyone, any doctor, let me take a back seat and sit and wait anymore. This is MY body, MY life, I am someone's wife, someone's mother, and I am needed!!
So, now the good revelation...in the spirit of trying to continue on with life, I started paramedic class this week. It is at the same school/same classroom that I tool my EMT-B class in. One side of the room is set up as a mock ER, and the other side of the room has 3 mock ambulances, complete with the big, giant step to get up into the back of the ambulance, and the limited space of course. I looked at it and remembered that the last time I was in the classroom I weighed 150 pounds more than I do now, and I remember seriously wondering how was I going to get up into the back of that ambulance, I mean seriously, I wondered and it was tough!! Yesterday, I looked at it and marveled at how hard it was then, and I just don't even think about it now, except for in moments of old habits die hard kind of thing.
It's been a journey, I pray that the bad parts are coming to an end so I can get back to my life without wondering what is coming around the medical corner to knock me down again!
I guess we'll start with the bad so we can finish off on a high note. My husband and I were talking about my rollercoaster of health issues over the last year and a half, and we talked about how truly scary it was back in September 2008. That was when I was only taking in about 500 calories a day, had a central line for 12 days to get TPN at home to try and get some calories, and just how desperately ill I was and how worried we were, and how we felt powerless because we were in this wait and suffer mode...all of the above I was well aware of, and of course aware of how concerned my family, and especially my kids were about what was going to happen to me, but until Sunday, I didn't realize how close I may have come to actually dying, or at the very least, how close I may have come to having some serious, permanent organ damage from the malnutrition. My husband told me that there were times when I would fall asleep on the couch next to him because I was just so weak, and he would look over at me sometimes, see me asleep with my mouth open, and wonder if I was dead, if this was it!! OMG! My husband does not have a flair for the dramatic, far from it, so I had to take that for the real deal! It just really scared me into a reality when he shared that with me, and I won't go back there again. I will NOT let anyone, any doctor, let me take a back seat and sit and wait anymore. This is MY body, MY life, I am someone's wife, someone's mother, and I am needed!!
So, now the good revelation...in the spirit of trying to continue on with life, I started paramedic class this week. It is at the same school/same classroom that I tool my EMT-B class in. One side of the room is set up as a mock ER, and the other side of the room has 3 mock ambulances, complete with the big, giant step to get up into the back of the ambulance, and the limited space of course. I looked at it and remembered that the last time I was in the classroom I weighed 150 pounds more than I do now, and I remember seriously wondering how was I going to get up into the back of that ambulance, I mean seriously, I wondered and it was tough!! Yesterday, I looked at it and marveled at how hard it was then, and I just don't even think about it now, except for in moments of old habits die hard kind of thing.
It's been a journey, I pray that the bad parts are coming to an end so I can get back to my life without wondering what is coming around the medical corner to knock me down again!
Jules RNY 10/30/2007
Hey Jules,
I can so relate to your revelation regarding how ill you were. Almost the same thing happened to me with my husband, only we were in the garage back in May having a smoke...he started crying and said...I am so scared I am going to come home from work and find you dead. It was at that moment, that I decided to take my health care into my own hands and demand action!
As far as an update on myself. I have had the TPN since Memorial day weekend, and as of today weigh 102 pounds. I had to have the PICC line removed last week due to developing an infection in my blood. I was so very sick...running 103 degree temp, aching, sweating, and chilling. It was miserable. On Thursday they pulled my PICC and started me on IV daptomycin. I had 4 doses of that on an out patient basis and feel so much better!
Now I have to make a decision which surgeon to trust and which route to take as far as my health is concerned. I have one surgeon wanting to do surgery immediately and change my procedure to a gastric sleeve. I have another surgeon who would like to wait and see how I do without any intervention. If I can maintain my weight we would do nothing. If I cannot, then we would have to replace the PICC, start TPN, get me to 100 pounds again, and then do a surgery for complete reversal. I honestly do not know which way to go at this point, but really would like to be given a chance to make this work on my own. I feel really good right now and would hate to upset the apple cart on purpose. I mean, I know if I cannot maintain my weight surgery is inevitable, but if I can get through this with no surgery, I feel that would be the best!
So, right now I am in a wait and see mode, and I will make a decision after I see the surgeon who wants to do surgery immediately on September 11.
I hope you are doing well Jules...keep me posted!
Laura
230/102/115
preop/current/goal
I can so relate to your revelation regarding how ill you were. Almost the same thing happened to me with my husband, only we were in the garage back in May having a smoke...he started crying and said...I am so scared I am going to come home from work and find you dead. It was at that moment, that I decided to take my health care into my own hands and demand action!
As far as an update on myself. I have had the TPN since Memorial day weekend, and as of today weigh 102 pounds. I had to have the PICC line removed last week due to developing an infection in my blood. I was so very sick...running 103 degree temp, aching, sweating, and chilling. It was miserable. On Thursday they pulled my PICC and started me on IV daptomycin. I had 4 doses of that on an out patient basis and feel so much better!
Now I have to make a decision which surgeon to trust and which route to take as far as my health is concerned. I have one surgeon wanting to do surgery immediately and change my procedure to a gastric sleeve. I have another surgeon who would like to wait and see how I do without any intervention. If I can maintain my weight we would do nothing. If I cannot, then we would have to replace the PICC, start TPN, get me to 100 pounds again, and then do a surgery for complete reversal. I honestly do not know which way to go at this point, but really would like to be given a chance to make this work on my own. I feel really good right now and would hate to upset the apple cart on purpose. I mean, I know if I cannot maintain my weight surgery is inevitable, but if I can get through this with no surgery, I feel that would be the best!
So, right now I am in a wait and see mode, and I will make a decision after I see the surgeon who wants to do surgery immediately on September 11.
I hope you are doing well Jules...keep me posted!
Laura
230/102/115
preop/current/goal
HI LAURA MY NAME IS PATRICI PATTON AND I TOO HAVE HAD NUMEROUS COMPLICATIONS AND AFTER TODAY'S SCOPE I NEED TO MAKE THE DECISION ON A REVERSAL I HAVE TO CALL THE SURGEON AT 4 PM HE FEELS I AM 20-30 LBS TOO THIN, I CAN ONLY EAT A FEW BITES HAVE BEEN ON TPN AND REMAIN ON A FEEDING TUBE WITH FEEDINGS AND FREE WATER AT NIGHT. I FEEL SO LONELY BECAUSE OTHERS HAVE NOT EXPERIENCED THIS BEFORE. I PERSONALLY CAN NOT BEAR TO GAIN WEIGHT. I HAVE INVESTED 2 1/2 YEARS OF TRYING TO PERSERVE THIS BYPASS. I HAVE NO POUCH BECAUSE IT WAS SVERED IN FEB OF 09 BECAUSE IT WAS EMBEDDED ON THE POSTERIOR SIDE OF MY LIVER AND MY ANASTOMOSIS CLOSED OFF. I HAD TWISTED INTESTINES AND NOW WHAT LITTLE FOOD I DO GET DOWN GOES IN TO MY ESOPHAGUS DOWN THROUGH THE ANASTOMOSIS AND DOWN INTO MY LIMB I MALABSORB EVEYTHING AND IF IT WERE NOT FOR THE FEEDING HOLDING MY WEIGHT I WOULD BE DEAD BY NOW. I AM CRUSHED, DEVASTED AND HEART BROKEN AT THE PROSPECT I FAILER I COULD NOT DIET AND KEEP THE WEIGHT OFF. I CAN NOT EVEN HAVE A GASTRIC BYPASS AND DO IT RIGHT. I HAVE INVESTED 1000'S OF DOLLARS LITERALLY IN A WARDROBE I HAVE DREAMT OF ALL MY ADULT LIFE. MY KIDNEYS AND LIVER ARE IN TROUBLE BY THE MOST RECENT BLOODWORK OF 2 WEEKS AGO. I HAVE BEEN HOSPITALIZED 14 TIMES, SURGERIES 8X A FEEDING TUBE AND 15 EGD'S NOT TO MENTION THE TESTS I HAVE HAD DONE. ALL HAD LEGIMATE PROBLEMS THAT WERE CORRECTED BUT MY FUNCTION WILL NOT COME BACK.BY A REVERSAL I CAN NOT IMAGINE THAT THINGS ARE GOING TO CHNAGE. I WILL CONSIDER A REVERSAL WITH A LAP BAND. SO THAT IS MY DECISION AND THAT IS WHAT WE DID DISCUSS IN THE PAST. LOVE TO HEAR FROM YOU....PATRICIA PATTON UNIONTONW PA
Hi,
I hope this finds you in a better state of health...
Please read my story. I weight 98 pounds and scheduled for a revision due to complications including an ulcer, stricture, hernias, fistula, as well as having my gastrojejunal anastomosis being located at the unused protion of my stomach. I know all comlications are different, but I have also lost weight like you did.. I am a walking skeleton. I will have my feeding tube inserted this Wednedsay whiuich is also the day of my surgery. How long does it take to gain weight on the feeding tube?
I just need some support. My life is at risk. I will find so much hope if you are doing better.
I hope this finds you in a better state of health...
Please read my story. I weight 98 pounds and scheduled for a revision due to complications including an ulcer, stricture, hernias, fistula, as well as having my gastrojejunal anastomosis being located at the unused protion of my stomach. I know all comlications are different, but I have also lost weight like you did.. I am a walking skeleton. I will have my feeding tube inserted this Wednedsay whiuich is also the day of my surgery. How long does it take to gain weight on the feeding tube?
I just need some support. My life is at risk. I will find so much hope if you are doing better.
Most Active
Recent Topics
