Jenkatmom L.
5 months out
Apr 28, 2007
Well here I am 5 months out and is has been a rough ride. The complications have been horrendous. I came home after 10 days in the hospital in Mexico and 2 days at the hotel. I was in the hospital longer than expected because I had a leak and they took me back to surgery 2 days after the first surgery. My leak was at the top of the stomach by the esophagus, a very unusual place and the first for Dr. U in this location. When I left Mexico I had a pleural effusion which Dr. U said would go away slowly. What this meant was that I had some fluid around my left lung and it was difficult for me to breathe normally. I was pretty sore from the surgeries and walking slowly. The trip home was uneventful.
Two days after returning home I was to remove the sutures. When I did, my wound opened up in 3 places with gaping holes. I immediately went to my primary care doctor who was not to happy with me for having the surgery in Mexico. He put steri strips on the open areas, listened to my lungs which he said did not "sound to bad" and sent me home. This was on a Friday.
I returned to work on Monday feeling pretty sore and having more breathing problems. Luckily I have a desk job. By Tuesday night I could hardly breathe. Wednesday morning I called my PCP and made an appt for 10 am. He saw me at about 10:30. My O2 sats were 82 when they are supposed to be around 98-100. He listened to my lungs and said "You need to go to the hospital right now."
Off to the emergency room I went. They took chest x-rays. The emergency doctor called for a specialist who came and drilled a hole in my back into my left lung and drained off 1 quart of fluid. Another x-ray and then I was told I needed to stay in the hospital and have a tube put in that lung which they proceeded to put in and hook the tube up to an "aquarium."
Of f to cat scan, now they found that the leak had opened up again and I had a subphrenic abscess under my lung. Next thing I know there is a feeding tube down my nose and another tube out my back draining the abscess. More IV medications.
Absolutely no water or food at all. This was the worst. My mouth was so dry.
Tons of doctors paraded daily through my room "You look pretty good" they would all say and leave. Get up and walk as much as you can.
After 10 days in the hospital, they sent me home with the feeding tube, the subphrenic abscess tube and a PICC line for my antibiotics. I was hooked up to the IV 20 hours a day and to the feeding tube 14 hours a day. I could not breathe deeply because the back tube was against my lung and it felt like I was being stabbed every time I tried to breathe deeply. I had to sleep in the recliner. I could barely walk to the bathroom and back to the chair without being winded.
I told only a very few people what was going on. My work thought I had a bad case of pneumonia with complications that caused a hole in my esophagus.
Now as the sole provider for my household, I was beginning to get very worried. I signed up for disability. The bills from the hospital and doctors started arriving. The hospital bill was 120K. The insurance reduced the price as usual and paid them around 70K and my responsibilty is 20% of that after meeting a $4500 deductible which I had to pay in December and again in January. Then the doctor bills started arriving. By this time I am starting to be really worried because we do not have alot of money and live pretty much paycheck to paycheck. My Visa cards are now maxed out, juggling to move them to the lowest interest I can and the rest of the doctors are on payment plans.
Well, by the end of February and not much has changed as far as progress in getting better. The doctor here will not refer me to UC and tells me to "be patient, these things take time and have to heal on their own. It could take 6 months or longer." I am still hooked up to all the tubes. The IV medications/liquid food are costing me out of pocket $53 per day. I still can't work or exercise. Finally I had enough and started calling UC to refer myself there. I got my PCP to also send a referral request. After 2 weeks of calling 3 or more times a day, I finally got an appointment. I got all my records of tests from the local hospital and took them with me. The gastroenterologist wanted to know why I was not referred 2 monts ago and I told him that they did not even refer me this time, I had to insist. He then asked to see the endoscopy and I told them they would not do one even after I asked repeatedly. He was very surprised. I was scheduled for an endoscopy 10 days later with him. The plan was to staple it closed and put a fibrin patch on it.
He also tells me that he sees no reason why I can't drink plain water since my stomach juices are going out the subphrenic tube, water will not hurt it. I thought I had died and gone to heaven. After over 3 months of no water, I could drink and boy did I ever. It was pretty funny as about 1/4 of the water I drank would come out in the back tube, but I did not care, I just emptied it more frequently!
It was a long 10 days wait until the test and when they went in for a look, they found an encapsulated area of infection where the hole is and ended up putting a shunt in to drain it. He said that I would have never healed up as long as that pocket of infection was there and that all the IV antibiotics I was on were not touching it because it was encapsulated. At this point, I was really, really pissed at the local doctors, but more so at myself for not insisting I go to UC in January when there was no progress.
Lesson learned here is that even though I personally liked the local surgeon who was treating me, if you feel something is not going right, always get a second opinion.
Still on the nasal feeding tube and the sub phrenic tube out my back, I decided to try to go back to work. So on March 23, with my nose tube decorated with jewels, off to work I go. It was slow going at first working 4 hours a day or so and doing mostly paperwork. The staff was very supportive and I took it easy.
On April 10, I go to the local hospital for an upper GI, swallow test and the doctor tells me the "hole appears closed." Now, I do not trust these guys so I decide to wait until my nest test at UC before starting to introduce food.
Easter night, when putting my crushed and liquid vitamins down my nose tube, it becomes clogged. Two days later I go to the local hospital to have it replaced.
On April 23, I go back to UC for another endoscopy to check the hole and THANK THE GOOD LORD ABOVE THE HOLE IS CLOSED AND THEY REMOVE THE NOSE TUBE. I am cleared to eat soft foods.
The next day, I return for a check on the back tube. Unfortunately the abscess is still there. They replace the tube in a slightly different location and it is draining more stuff. I am to return in 2 weeks to have this checked again.
So, what was the first food I ate - jello, chicken broth, yogurt, cottage cheese, scrambled eggs with cheese, fresh crab, avocado, prawns, halibut, cottage cheese pancakes, and chinese food. I figure, if I chew it enough, it becomes soft and qualifies.
I was also able for the first time in 5 months to take the patch off the back tube a have a full body shower. I drained the 55 gallon water tank!
I started back to Curves even with the back tube still in. Taking it slowly as I cannot do many of the machines but it sure feels good to be back exercising. When I drove up and walked in the door, all the clients cheered me and gave me a great welcome. I felt so loved by all those ladies. They told me that it "just wasn't the same without me there." I asked it that meant I was the shit disturber and they all said "yep!"
I will write more as the saga continues.
Two weeks later back to UC to have another tube check. This time they did the tube check with out the anesthetic and changed the tube. This hurt bad for about 2 minutes. They debated on taking it out but said to be safe it should stay in for a couple more weeks. Bummer. Then to top that off, we gat a parking ticket. Not our day.
Another two weeks goes by and back to UC. They do the test and the doc asks me if I want the tube to be removed this time. I say - My vote is "absolutely." They do the test again without the anesthetic and he says "looks good" and out comes the tube. Yes it hurt coming out but it was over in an instant. I asked about stitches and he said it will close on its own in a few days. The hole looked like I had been shot. I thanked everyone for their great care down there and told them even though I liked all of them, I hoped to never see them again!
More later.
Two days after returning home I was to remove the sutures. When I did, my wound opened up in 3 places with gaping holes. I immediately went to my primary care doctor who was not to happy with me for having the surgery in Mexico. He put steri strips on the open areas, listened to my lungs which he said did not "sound to bad" and sent me home. This was on a Friday.
I returned to work on Monday feeling pretty sore and having more breathing problems. Luckily I have a desk job. By Tuesday night I could hardly breathe. Wednesday morning I called my PCP and made an appt for 10 am. He saw me at about 10:30. My O2 sats were 82 when they are supposed to be around 98-100. He listened to my lungs and said "You need to go to the hospital right now."
Off to the emergency room I went. They took chest x-rays. The emergency doctor called for a specialist who came and drilled a hole in my back into my left lung and drained off 1 quart of fluid. Another x-ray and then I was told I needed to stay in the hospital and have a tube put in that lung which they proceeded to put in and hook the tube up to an "aquarium."
Of f to cat scan, now they found that the leak had opened up again and I had a subphrenic abscess under my lung. Next thing I know there is a feeding tube down my nose and another tube out my back draining the abscess. More IV medications.
Absolutely no water or food at all. This was the worst. My mouth was so dry.
Tons of doctors paraded daily through my room "You look pretty good" they would all say and leave. Get up and walk as much as you can.
After 10 days in the hospital, they sent me home with the feeding tube, the subphrenic abscess tube and a PICC line for my antibiotics. I was hooked up to the IV 20 hours a day and to the feeding tube 14 hours a day. I could not breathe deeply because the back tube was against my lung and it felt like I was being stabbed every time I tried to breathe deeply. I had to sleep in the recliner. I could barely walk to the bathroom and back to the chair without being winded.
I told only a very few people what was going on. My work thought I had a bad case of pneumonia with complications that caused a hole in my esophagus.
Now as the sole provider for my household, I was beginning to get very worried. I signed up for disability. The bills from the hospital and doctors started arriving. The hospital bill was 120K. The insurance reduced the price as usual and paid them around 70K and my responsibilty is 20% of that after meeting a $4500 deductible which I had to pay in December and again in January. Then the doctor bills started arriving. By this time I am starting to be really worried because we do not have alot of money and live pretty much paycheck to paycheck. My Visa cards are now maxed out, juggling to move them to the lowest interest I can and the rest of the doctors are on payment plans.
Well, by the end of February and not much has changed as far as progress in getting better. The doctor here will not refer me to UC and tells me to "be patient, these things take time and have to heal on their own. It could take 6 months or longer." I am still hooked up to all the tubes. The IV medications/liquid food are costing me out of pocket $53 per day. I still can't work or exercise. Finally I had enough and started calling UC to refer myself there. I got my PCP to also send a referral request. After 2 weeks of calling 3 or more times a day, I finally got an appointment. I got all my records of tests from the local hospital and took them with me. The gastroenterologist wanted to know why I was not referred 2 monts ago and I told him that they did not even refer me this time, I had to insist. He then asked to see the endoscopy and I told them they would not do one even after I asked repeatedly. He was very surprised. I was scheduled for an endoscopy 10 days later with him. The plan was to staple it closed and put a fibrin patch on it.
He also tells me that he sees no reason why I can't drink plain water since my stomach juices are going out the subphrenic tube, water will not hurt it. I thought I had died and gone to heaven. After over 3 months of no water, I could drink and boy did I ever. It was pretty funny as about 1/4 of the water I drank would come out in the back tube, but I did not care, I just emptied it more frequently!
It was a long 10 days wait until the test and when they went in for a look, they found an encapsulated area of infection where the hole is and ended up putting a shunt in to drain it. He said that I would have never healed up as long as that pocket of infection was there and that all the IV antibiotics I was on were not touching it because it was encapsulated. At this point, I was really, really pissed at the local doctors, but more so at myself for not insisting I go to UC in January when there was no progress.
Lesson learned here is that even though I personally liked the local surgeon who was treating me, if you feel something is not going right, always get a second opinion.
Still on the nasal feeding tube and the sub phrenic tube out my back, I decided to try to go back to work. So on March 23, with my nose tube decorated with jewels, off to work I go. It was slow going at first working 4 hours a day or so and doing mostly paperwork. The staff was very supportive and I took it easy.
On April 10, I go to the local hospital for an upper GI, swallow test and the doctor tells me the "hole appears closed." Now, I do not trust these guys so I decide to wait until my nest test at UC before starting to introduce food.
Easter night, when putting my crushed and liquid vitamins down my nose tube, it becomes clogged. Two days later I go to the local hospital to have it replaced.
On April 23, I go back to UC for another endoscopy to check the hole and THANK THE GOOD LORD ABOVE THE HOLE IS CLOSED AND THEY REMOVE THE NOSE TUBE. I am cleared to eat soft foods.
The next day, I return for a check on the back tube. Unfortunately the abscess is still there. They replace the tube in a slightly different location and it is draining more stuff. I am to return in 2 weeks to have this checked again.
So, what was the first food I ate - jello, chicken broth, yogurt, cottage cheese, scrambled eggs with cheese, fresh crab, avocado, prawns, halibut, cottage cheese pancakes, and chinese food. I figure, if I chew it enough, it becomes soft and qualifies.
I was also able for the first time in 5 months to take the patch off the back tube a have a full body shower. I drained the 55 gallon water tank!
I started back to Curves even with the back tube still in. Taking it slowly as I cannot do many of the machines but it sure feels good to be back exercising. When I drove up and walked in the door, all the clients cheered me and gave me a great welcome. I felt so loved by all those ladies. They told me that it "just wasn't the same without me there." I asked it that meant I was the shit disturber and they all said "yep!"
I will write more as the saga continues.
Two weeks later back to UC to have another tube check. This time they did the tube check with out the anesthetic and changed the tube. This hurt bad for about 2 minutes. They debated on taking it out but said to be safe it should stay in for a couple more weeks. Bummer. Then to top that off, we gat a parking ticket. Not our day.
Another two weeks goes by and back to UC. They do the test and the doc asks me if I want the tube to be removed this time. I say - My vote is "absolutely." They do the test again without the anesthetic and he says "looks good" and out comes the tube. Yes it hurt coming out but it was over in an instant. I asked about stitches and he said it will close on its own in a few days. The hole looked like I had been shot. I thanked everyone for their great care down there and told them even though I liked all of them, I hoped to never see them again!
More later.
What I want after my DS
Nov 13, 2006
1. Purchase and wear normal size clothes off the rack
2. Wear a really nice dress for my daughter's wedding next year
3. Wear a swimsuit without a skirt on it
4. Be able to sit in my lazy boy chair with my dogs sitting next to me and not on the arms because there is no room
5. Not be judged by other health professionals on first impression because of my weight
6. Go shopping for a long time without my back starting to hurt from standing so long
7. Go to an amusement park and ride all the rides and not stay away because I don't want to be embarassed because I don't fit in the seat
8. Fit in booths at restaurants
9. Not have to scope out a room to look for a sturdy chair to sit in
10. Fit comfortably in lawn chairs without my hips flowing over the sides
11. Cross my legs.
12. Go shopping for clothes with my children and not just sit and watch them try clothes on, try some on myself too
13. See my toes.
14. Fit comfortably in normal bathroom stall
I will continue as I think of more
2. Wear a really nice dress for my daughter's wedding next year
3. Wear a swimsuit without a skirt on it
4. Be able to sit in my lazy boy chair with my dogs sitting next to me and not on the arms because there is no room
5. Not be judged by other health professionals on first impression because of my weight
6. Go shopping for a long time without my back starting to hurt from standing so long
7. Go to an amusement park and ride all the rides and not stay away because I don't want to be embarassed because I don't fit in the seat
8. Fit in booths at restaurants
9. Not have to scope out a room to look for a sturdy chair to sit in
10. Fit comfortably in lawn chairs without my hips flowing over the sides
11. Cross my legs.
12. Go shopping for clothes with my children and not just sit and watch them try clothes on, try some on myself too
13. See my toes.
14. Fit comfortably in normal bathroom stall
I will continue as I think of more
