2016 was a difficult year for me -- at least until July 30. Over Martin Luther King weekend I rammed my foot into a large box in my apartment and broke my right tibia. Besides this event bringing to light my uncontrolled apartment clutter and the necessity of standing to keep up bone strength, the break kept me in my bed 23 hours a day for three months. When I finally emerged feom my bed in April, I knew I needed to take care of a long-standing problem with a feeding-tube that had been installed six years before. My GI doctor had been delaying removal of the tube; he was apprehensive about leaving me tube-less, despite the fact that I had been eating by mouth for the last ten years, and the tube was clogged beyond redemption -- and smelly!
So as soon as my leg healed and I was released from my prison sentence, I made an appointment with the reluctant GI MD to finally stand my ground. First I saw my primary-care physician who agreed that it was time to take definite action, and advised me to go off my Xeralto [blood-thinner] for a few days before my GI appointment. So on May 11, I rolled defiantly into my GI doc's office, and he tried to stall me again with the blood-thinner excuse; but I informed him I went off the blood-thinner several days before. It still puzzles me that my GI doc and my ALS team were reticent to remove a PEG tube that hadn't been functional in at least two years and was reeking. I said I needed the tube out NOW and out it came. The tube before that one had come out about five years earlier and the hole closed up within a few hours -- which is why people with PEG tubes are told to go to the nearest ER immediately if the tube falls out.
What followed were four endoscopic procedures to close the hole -- which I was told was a RARE occurrence. Anyway, the last procedure was performed on July 30. Until then, I had barely been able to leave the house for the amount of stomach acid and food that was pouring out from my belly, 5-6 dressing-changes daily and ruined tee shirts and bras, as well as the odor that I would take with me everywhere -- no sooner was I out of my bed from my broken leg than I was a prisoner within the four walls of my apartment. The weather was warming up and I was getting more and more frustrated. My first trip to Rockaway Beach was in early August and I felt as if half my summer had been robbed from me. Is the situation perfect now? Not by a longahot; I have a "button" covering the hole and it still lsaking. Nothing is perfect.
I learned some lessons in the past year. I learned to be more mindful and even that it's okay to stare into space or otherwise just sit still and collect my thoughts. I had a lot of time in bed to think. I have learned not to take anyone at his/her word, but to watch what they do. I have also learned that most people will not be honest with me because they are convinced that the weakness in my body translates into weakness of spirit; the opposite is true -- I am so much stronger emotionally than I have ever been. But most of all, I learned that sometimes it's the ones closest to you that can hurt the most. Most importantly, I have realized that we sometimes have expectations of certain people in our world to be there for us, but often those are the ones who are not. And I am learning to live more in the present and to forgive hurts from my past [even though I am still paying for someone who hangs onto a perceived "offense" from 20+ years ago] I have no plans for 2017 -- except to finish binge-watching all seven seasons of "Shameless". I have suffered losses -- my beloved furry companion Chelsea on July 4, and two friends who ended our association with lame excuses which I saw right through [Facebook doesn't lie -- people can be really stupid or they think I am-- after all, isn't it a given that wheelchairs mean the person sitting in them are automatically of subhuman intelligence?]
Showing posts with label PEGtube. Show all posts
Showing posts with label PEGtube. Show all posts
Tuesday, December 27, 2016
Sunday, July 10, 2016
Endoscopy to Close PEG Tube Site-- Call me "Deep Throat"
So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site. To recap, had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow. In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia. In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010. By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site. It was also ruining my shirts and blouses with stains and emitting an offensive odor. My GI doctor and I decided it was time for the tube to come out and let the hole close up.
As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed. Well, mine didn't closeup, much to my chagrin. My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed. Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.
I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge]. We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer. Then we entered the Endoscopy Suite inner sanctum at about 12:15. The nurses were all cheerful and pleasant. Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in. My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team. They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar. They would go with a lighter anesthesia and shoot albuterol into my throat to numb it. I would be awake during the procedure but probably not remember much.
Well, I remember everything. It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern. Good job!!" I'm not clear what the "job" was, except not passing out and not screaming. All I know is, I was relieved when I heard them all tell me we were done.
The aftermath was a sore site which bled a little and a very sore throat for about three days. Oh, and I lost my voice for about the three days that my throat hurt. All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now. It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles. I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content. Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.
It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined. And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].
As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed. Well, mine didn't closeup, much to my chagrin. My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed. Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.
I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge]. We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer. Then we entered the Endoscopy Suite inner sanctum at about 12:15. The nurses were all cheerful and pleasant. Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in. My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team. They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar. They would go with a lighter anesthesia and shoot albuterol into my throat to numb it. I would be awake during the procedure but probably not remember much.
Well, I remember everything. It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern. Good job!!" I'm not clear what the "job" was, except not passing out and not screaming. All I know is, I was relieved when I heard them all tell me we were done.
The aftermath was a sore site which bled a little and a very sore throat for about three days. Oh, and I lost my voice for about the three days that my throat hurt. All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now. It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles. I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content. Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.
It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined. And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].
Sunday, January 16, 2011
PEG --Get It Early? and Other Info About the Notorious "Feeding Tube"
So they tell you to be ahead of the disease. To get everything early, to be prepared. In some cases, the suggestion comes too late, because of faster progression than expected. For some, the advice comes too soon and freaks out the patient. I recall a lady at our support group who was told by the facilitator, make sure you order your equipment before you need it." The lady, who had been recently diagnosed, and had walked into the room using only a cane, looked surprised, and asked "what equipment do you mean?". The facilitator answered "motorized wheelchair, bedside commode, Hoyer® lift -- you know.....". Apparently, the newly-diagnosed patient didn't know, and this information came as a shock, for which she probably wasn't ready. And it's so difficult while you're walking, to picture yourself in a wheelchair, and even more difficult to think about a feeding tube while still eating solid food, and swallowing with no problem. And since it's optional, many patients agonize over whether to get a feeding tube at all. Unless you know exactly what a PEG tube looks like, you have scary visions of people flat on their backs with any number of tubes coming out of their bodies.
The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one. And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.
So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia. So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.
By some miracle, about three years after my diagnosis [early 2007], I reached a sort of plateau [for which I feel very fortunate]. Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot. I had it replaced in September of that year. But that replacement was never right. The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.
Then the tube fell out in March of 2010. I went to the local emergency room. The local hospital here isn't my favorite, but it's not terrible. I just didn't have a great time there when I fell and broke my wrist in March, 2004. I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring. And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.
But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before. I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before. As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.
In September, the tube fell out again. Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well. So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway. Besides, I was not crazy about more radiation on my belly. Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.
The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in. So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole. But that five-year-old hole is not closing up as fast as they said it would. So it still leaks out stomach acid, especially when I eat spicy foods -- which I love. And it makes a very socially-unacceptable noise. it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating. It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.
Did I get the tube too early? Maybe in retrospect I did. But it's so hard to know. At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem. And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery]. So who's to know? Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early. But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure. And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate. Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.
The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one. And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.
So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia. So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.
By some miracle, about three years after my diagnosis [early 2007], I reached a sort of plateau [for which I feel very fortunate]. Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot. I had it replaced in September of that year. But that replacement was never right. The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.
Then the tube fell out in March of 2010. I went to the local emergency room. The local hospital here isn't my favorite, but it's not terrible. I just didn't have a great time there when I fell and broke my wrist in March, 2004. I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring. And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.
But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before. I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before. As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.
In September, the tube fell out again. Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well. So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway. Besides, I was not crazy about more radiation on my belly. Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.
The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in. So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole. But that five-year-old hole is not closing up as fast as they said it would. So it still leaks out stomach acid, especially when I eat spicy foods -- which I love. And it makes a very socially-unacceptable noise. it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating. It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.
Did I get the tube too early? Maybe in retrospect I did. But it's so hard to know. At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem. And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery]. So who's to know? Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early. But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure. And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate. Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.
Friday, August 6, 2010
Long-Overdue Update
Once again, too much time between updates. There have been too many things hanging, and too many things changing minute by minute. I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.
So, I was having trouble with my PEG [feeding] tube. Since it was replaced in September 2009, at Beth Israel Hospital, it was never right. From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble. The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened. So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor. That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful. The doctor at Beth Israel insisted everything was okay, but I knew it wasn't. So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified
So fast forward to July and Dr. Crawford at Cornell, GI doctor. He says I am best off replacing the tube in a whole new location. This would mean another endoscopic procedure and going under general anesthesia again. Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site. Anesthesia is always a risk for anyone, but especially for a person with respiratory issues. When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time. But I resign myself because it has to be done.
I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works. So that's what he did in the same site. to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.
My wheelchair is fixed -- for now. Every once in a while, the tilt stops working, but then it starts again unexpectedly. This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs. I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important. So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position. Getting the footrest out of the way is important for transfers. So transfers have been hard on the aides and myself. Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities. I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.
The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far. Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside. I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark. Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.
So, I was having trouble with my PEG [feeding] tube. Since it was replaced in September 2009, at Beth Israel Hospital, it was never right. From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble. The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened. So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor. That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful. The doctor at Beth Israel insisted everything was okay, but I knew it wasn't. So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified
So fast forward to July and Dr. Crawford at Cornell, GI doctor. He says I am best off replacing the tube in a whole new location. This would mean another endoscopic procedure and going under general anesthesia again. Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site. Anesthesia is always a risk for anyone, but especially for a person with respiratory issues. When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time. But I resign myself because it has to be done.
I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works. So that's what he did in the same site. to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.
My wheelchair is fixed -- for now. Every once in a while, the tilt stops working, but then it starts again unexpectedly. This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs. I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important. So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position. Getting the footrest out of the way is important for transfers. So transfers have been hard on the aides and myself. Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities. I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.
The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far. Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside. I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark. Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.
Friday, March 19, 2010
Good News About Local Hospital North Shore/LIJ Forest Hills, Wheelchair, Braces, etc
On Thursday, I had an emergency. My PEG feeding tube came out and my aide found herself holding it in her hand. I knew it wasn't a life-threatening occurrence, but she was rather freaked out. Since I had an empty stomach, no sickening liquid came pouring out, and I put the balloon back inside my belly and put surgical tape around it so it would stay in, and off we went to the Emergency Room of Forest Hills Hospital aka North Shore/Long Island Jewish Hospital. For twenty five years that I have been in Rego Park, this hospital has seen me throuh two sprained ankles, a slashed thumb and a broken toe pre-ALS, and a shattered wrist and subsequent surgery, as well as an injured foot post-ALS. And most recently [I believe about 2 years ago], a horrendous experience when the tip of my PE tube came off. At that time, it seemed nobody had ever seen a PEG tube before, and the attending doctor tried to pull it out, nearly killing me with pain. I ended up going to Beth Israel Hospital, where my ALS team was at the time, and getting a new tip put on in about 2 minutes by a nurse in the GI Department.
So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful. He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube. He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time. Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened. But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible. Then, they x-rayed the site to make sure the tube was placed properly. Within three hours of arriving at the ER, we were on our way home.
I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid. This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency. Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard". Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.
My wheelchair is fixed and it is wonderful. However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years. But they feel that with the progression of my disease, this wheelchair no longer meets my needs. I'm not sure it ever completely did. I also got a new bi-pap/ventilator combination called a Trilogy. I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic. Now my feet look like feet again. I can even wear regular shoes sometimes. The shoes for my new braces are a problem, however. The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use. I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes. Forget theater or baseball games this summer; that won't be a remote possibility. I'll have very little pleasure or fun for a long while, but the shoes are a lot more important.
So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful. He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube. He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time. Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened. But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible. Then, they x-rayed the site to make sure the tube was placed properly. Within three hours of arriving at the ER, we were on our way home.
I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid. This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency. Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard". Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.
My wheelchair is fixed and it is wonderful. However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years. But they feel that with the progression of my disease, this wheelchair no longer meets my needs. I'm not sure it ever completely did. I also got a new bi-pap/ventilator combination called a Trilogy. I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic. Now my feet look like feet again. I can even wear regular shoes sometimes. The shoes for my new braces are a problem, however. The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use. I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes. Forget theater or baseball games this summer; that won't be a remote possibility. I'll have very little pleasure or fun for a long while, but the shoes are a lot more important.
Thursday, August 6, 2009
My PEG tube replacement
I was surprised recently when I expressed to someone that I didn't have the time to do something, and she said "why, what do you do all day?". Anyone who reads this will see how I can literally be out all day for a 5-minute procedure. When you have to rely on Access-a-Ride or an ambulette, you spend a lot of time sitting around and waiting. And, anyone who goes to a Medicare/Medicare/HMO doctor can attest to the fact that a 30-minute appointment means a 3-hour ordeal of waiting in the waiting room, then the exam room, then waiying again while the doctor will come "right back", and is attendng to other patients who have the same appointment as you.
I've learned that, when blogging it is not cool to mention names of professionals or institutions, or even people, unless you don't mind being googled and asked to elaborate, or even sued. So email me privately if you want names and I will reveal if I can. If I have something really nice to say, I will of course mention names.
Anyway, this time, I had to specifically request that the hospital change my ambulette company because the ambulette company they have been sending does not have the mechanical lifts. Instead, they sent vans with ramps that are used to using with manual wheelchairs that they push. But the ramps are steep and dangerous for an electric wheelchair. I had to say a prayer as I got to the top and the wheelchair literally jumped into the van and risked ramming into whatever was in front of it [sometimes another wheelchair passenger]. So that worked out, even though I was supposed to be at the endoscopy registration by 10:30 and the ambulette was supposed to come to pick us up between 9 and 9:30, and didn't arrive until 10:15 and picked up someone else, taking a roundabout route to the city, finally gettng to the hospital after 11. Louise traveled separately, and was there for a while when we got there.
Then began the paperwork, signing and filling out multiple pages and receiving my 100th packet of papers outlining patient privacy. This was in a room that was so crowded that I had to stay outside in the hallway with the wheelchair. The hospital I went to is very old, and very drab. The walls are in bad need of a paint job and the nurse directing "traffic" looked like she really hated being there. She handed me a locker key, told me to enter a depressingly dark locker room whose dressing cubicles couldn't fit my wheelchair, and I had to take off everything from the waist up and put on a hospital gown. I thought the whole atmosphere was kind of depressing for people going through procedures which could be very frightening. My initial PEG tube placement was in this hospital, and I recall being alone in recovery and the whole next day in a hospital room with a hospital staff that yelled at me because they thought I was deaf, mentally challenged, or both. This time, I had a bunch of people standing by and promising me that would not happen again. Still, I dreaded the possibility of staying overnight.
When my GI doctor came in, he deferred judgement to a nurse named Frank, who had been there for my first procedure, as well as when the tip of my feeding tube had to be relaced about 2 years ago. Anyway, he said to the doctor: "this thing was put in 4 years ago. There's no way it's not gonna crack." and he turned to me and said "you're gonna have to be put under so the doctor can do it endoscopically". The doc said "I know that's not what you want to hear". And I wrote on my board "please please try the other way first", and he said "Well, we'll try, but I don't think it'll work. This tube is old!"
So they had me wheel myself in my chair and tilt it back and recline. Then I saw the anesthesiologist come in -- I recognized his face and South African accent from five years ago. They let Ellita come in and hook up my bi-pap breathing ventilator [which we brought from home]l, which was a good move. They told me they were going to give me a light anesthesia, which turned out to be Michael Jackson's favorite-- propofol aka diprofan. I remember him sticking the needle in my hand and the next thing I heard was "Fern, you're all done". I went to the recovery room for about an hour, and I was free to go.
By this time it was after 1, and the recovery room nurse called my ambulette to pick me up and said they would pick me up at the emergency room entrance. Now, just to say why I take the ambulette in these cases instead of Access-a-Ride. To take the later, you have to book one to two days in advance and tell them what time to pick up for the return. With certain doctor appointments and a procedure that I just described, it is impossible to know exactly when I will be finished. I my case above, I could have even had to stay overnight. So it was impossible to book a return pickup time. But this turned out to be the ambulette ride from hell.
First off, we were waiting for over an hour at the emergency exit like we were told to do. Suddenly I got the idea to have a lok at the vehicles standing at the corner, about 3/4 block down the street. Sure enough, my ambulette was waiting there. I called Louise and Ellita to come down the street [they'd been waiting in the hot sun] and Ellita and I boarded. There was already a couple on board, the wife of which was in a wheelchair in front of mine. We had another pickup along the way, and we ended up getting in my door about 4pm and rushed out for an early dinner at a fabulous new little Indian restaurant on Queen Blvd. So out for about 6 hours for a 5-minute procedure.
But, here's the "hellishness" of the ride: the couple who had been in the ambulette when we boarded, looked like they were right out of "central casting". They could have played the part of trailer-park residents. The husband had no front teeth, scraggly hair and tattoos. His skinniness made him look almost like a junkie. The wife, who I inferred was the patient, looked unhealthy indeed. I thinnk I overheard somethhing about dialysis, and they seemed to be regular clients who knew the driver with familiarity. When we arrived in Astoria, Queens to let off the fifth passenger, the husband also got out of the van, motioned for the driver to wait [which didn't make us happy, since we were dying to get home, and I hadn't eaten since 11pm the night before]. Well, this man lit a cigarette, took a few drags himself and then, to my dismay, handed it to his wife sitting in the van in her wheelchair in front of me. It's impossible to protest when you can't speak and especially when you're choking from the smoke. So Ellita told them I had respiratory problems and they finally put the cigarette out, not a moment too soon.
By the time the driver started up the van, the front was full of smoke and I began coughing up a storm. When I stiffened up and couldn't help kicking the woman's wheelchair, she went beserk on me. The husband saw I was choking and said to Ellita "is she okay?" and Ellita said "She's coughing from the smoking!" The woman said "well what do you want me to do? I had to have a smoke!" and the man said "Oh, if I knew, I would'na done that!" But he didn't exactly ask us if it was okay.
Here's the best part. When we arrived in front of my building, they both yelled out "this is so nice!" and the woman said to Ellita "I would like to live here. Can you tell me how she [meaning me] got into such a nice building? How can I get in here?" And Ellita said "you have to buy a co-op"
"Oh, it's nice to have money" she said.
Ha! She should only know!!
I've learned that, when blogging it is not cool to mention names of professionals or institutions, or even people, unless you don't mind being googled and asked to elaborate, or even sued. So email me privately if you want names and I will reveal if I can. If I have something really nice to say, I will of course mention names.
Anyway, this time, I had to specifically request that the hospital change my ambulette company because the ambulette company they have been sending does not have the mechanical lifts. Instead, they sent vans with ramps that are used to using with manual wheelchairs that they push. But the ramps are steep and dangerous for an electric wheelchair. I had to say a prayer as I got to the top and the wheelchair literally jumped into the van and risked ramming into whatever was in front of it [sometimes another wheelchair passenger]. So that worked out, even though I was supposed to be at the endoscopy registration by 10:30 and the ambulette was supposed to come to pick us up between 9 and 9:30, and didn't arrive until 10:15 and picked up someone else, taking a roundabout route to the city, finally gettng to the hospital after 11. Louise traveled separately, and was there for a while when we got there.
Then began the paperwork, signing and filling out multiple pages and receiving my 100th packet of papers outlining patient privacy. This was in a room that was so crowded that I had to stay outside in the hallway with the wheelchair. The hospital I went to is very old, and very drab. The walls are in bad need of a paint job and the nurse directing "traffic" looked like she really hated being there. She handed me a locker key, told me to enter a depressingly dark locker room whose dressing cubicles couldn't fit my wheelchair, and I had to take off everything from the waist up and put on a hospital gown. I thought the whole atmosphere was kind of depressing for people going through procedures which could be very frightening. My initial PEG tube placement was in this hospital, and I recall being alone in recovery and the whole next day in a hospital room with a hospital staff that yelled at me because they thought I was deaf, mentally challenged, or both. This time, I had a bunch of people standing by and promising me that would not happen again. Still, I dreaded the possibility of staying overnight.
When my GI doctor came in, he deferred judgement to a nurse named Frank, who had been there for my first procedure, as well as when the tip of my feeding tube had to be relaced about 2 years ago. Anyway, he said to the doctor: "this thing was put in 4 years ago. There's no way it's not gonna crack." and he turned to me and said "you're gonna have to be put under so the doctor can do it endoscopically". The doc said "I know that's not what you want to hear". And I wrote on my board "please please try the other way first", and he said "Well, we'll try, but I don't think it'll work. This tube is old!"
So they had me wheel myself in my chair and tilt it back and recline. Then I saw the anesthesiologist come in -- I recognized his face and South African accent from five years ago. They let Ellita come in and hook up my bi-pap breathing ventilator [which we brought from home]l, which was a good move. They told me they were going to give me a light anesthesia, which turned out to be Michael Jackson's favorite-- propofol aka diprofan. I remember him sticking the needle in my hand and the next thing I heard was "Fern, you're all done". I went to the recovery room for about an hour, and I was free to go.
By this time it was after 1, and the recovery room nurse called my ambulette to pick me up and said they would pick me up at the emergency room entrance. Now, just to say why I take the ambulette in these cases instead of Access-a-Ride. To take the later, you have to book one to two days in advance and tell them what time to pick up for the return. With certain doctor appointments and a procedure that I just described, it is impossible to know exactly when I will be finished. I my case above, I could have even had to stay overnight. So it was impossible to book a return pickup time. But this turned out to be the ambulette ride from hell.
First off, we were waiting for over an hour at the emergency exit like we were told to do. Suddenly I got the idea to have a lok at the vehicles standing at the corner, about 3/4 block down the street. Sure enough, my ambulette was waiting there. I called Louise and Ellita to come down the street [they'd been waiting in the hot sun] and Ellita and I boarded. There was already a couple on board, the wife of which was in a wheelchair in front of mine. We had another pickup along the way, and we ended up getting in my door about 4pm and rushed out for an early dinner at a fabulous new little Indian restaurant on Queen Blvd. So out for about 6 hours for a 5-minute procedure.
But, here's the "hellishness" of the ride: the couple who had been in the ambulette when we boarded, looked like they were right out of "central casting". They could have played the part of trailer-park residents. The husband had no front teeth, scraggly hair and tattoos. His skinniness made him look almost like a junkie. The wife, who I inferred was the patient, looked unhealthy indeed. I thinnk I overheard somethhing about dialysis, and they seemed to be regular clients who knew the driver with familiarity. When we arrived in Astoria, Queens to let off the fifth passenger, the husband also got out of the van, motioned for the driver to wait [which didn't make us happy, since we were dying to get home, and I hadn't eaten since 11pm the night before]. Well, this man lit a cigarette, took a few drags himself and then, to my dismay, handed it to his wife sitting in the van in her wheelchair in front of me. It's impossible to protest when you can't speak and especially when you're choking from the smoke. So Ellita told them I had respiratory problems and they finally put the cigarette out, not a moment too soon.
By the time the driver started up the van, the front was full of smoke and I began coughing up a storm. When I stiffened up and couldn't help kicking the woman's wheelchair, she went beserk on me. The husband saw I was choking and said to Ellita "is she okay?" and Ellita said "She's coughing from the smoking!" The woman said "well what do you want me to do? I had to have a smoke!" and the man said "Oh, if I knew, I would'na done that!" But he didn't exactly ask us if it was okay.
Here's the best part. When we arrived in front of my building, they both yelled out "this is so nice!" and the woman said to Ellita "I would like to live here. Can you tell me how she [meaning me] got into such a nice building? How can I get in here?" And Ellita said "you have to buy a co-op"
"Oh, it's nice to have money" she said.
Ha! She should only know!!
Tuesday, July 21, 2009
PEG Feeding Tube Replacement, etc.
I haven't updated in a while because I've been wasting too much time on Facebook and Twitter [fec139, if you'd like to follow me].
A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].
It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.
So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!
A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].
It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.
So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!
Friday, July 13, 2007
ferncohen.com
Ok, first of all I am fine, and then some. But now I have even more reason to be infuriated at North Shore Forest Hell!!! And the Executive Director Robert Hettenbach, with whom I have already been in touch, will hear from me again.
Preparing for the event of a possible total tube-change, I arrived at Beth Israel’s Endoscopy unit with Ellita schlepping my bi-pap, in the event that I would have to “go under”, an event which frightened me to no end. It is risky for anyone to go under anesthesia; anesthesiologists are among the specialists who pay the ighest malpractice insurance premiums. And for a person with a FVC (forced vital capacity) of about 18%, it is especially risky.
And I had been instructed not to eat after breakfast. So it was 2:00pm and I hadn’t had anything since my Carnation Instant Breakfast at 8:30am. So I was very hungry.
Jody Wiesel, my friend and ALSA volunteer was there to meet me, along with Teresa Imperato, nurse extraordinaire from the ALS Clinic. I told them how much it meant for me to see them there. Jody said “You’re too important to us, for us not to be here”.
So Teresa tells me not to register but instead to lift my shirt and let her see the tube. I tell her it was leaking at the end, she brings me to Frank, the Physician’s Assistant, and asks if he has a cap for my tube. He has hundreds. In iteraaly less than three minutes, he tells me there is nothing wrong with the tube, snips off the end, puts on a new cap, and I am done! So the upshot is that Teresa has access to Frank’s supply of PEG caps, which she knows how to put on. Therefore, if it happens again, I only need to go to the ALS clinic, and Teresa will fix it for me. Ditto to anybody who reads this with a PEG tube; you only need to call the clinic; if it is a cap replacement, Teresa can do it. This makes me want to go to North Shore Forest Hills and scream.
So now we had 3 and-a-half hours until our access-a-ride pickup. We had lunch – I was starving—and then Ellita had her toenails done, while Jody and I explored the neighborhood around Stuyvesant Town/Peter Cooper Village, which has gone really upscale.
Ok, first of all I am fine, and then some. But now I have even more reason to be infuriated at North Shore Forest Hell!!! And the Executive Director Robert Hettenbach, with whom I have already been in touch, will hear from me again.
Preparing for the event of a possible total tube-change, I arrived at Beth Israel’s Endoscopy unit with Ellita schlepping my bi-pap, in the event that I would have to “go under”, an event which frightened me to no end. It is risky for anyone to go under anesthesia; anesthesiologists are among the specialists who pay the ighest malpractice insurance premiums. And for a person with a FVC (forced vital capacity) of about 18%, it is especially risky.
And I had been instructed not to eat after breakfast. So it was 2:00pm and I hadn’t had anything since my Carnation Instant Breakfast at 8:30am. So I was very hungry.
Jody Wiesel, my friend and ALSA volunteer was there to meet me, along with Teresa Imperato, nurse extraordinaire from the ALS Clinic. I told them how much it meant for me to see them there. Jody said “You’re too important to us, for us not to be here”.
So Teresa tells me not to register but instead to lift my shirt and let her see the tube. I tell her it was leaking at the end, she brings me to Frank, the Physician’s Assistant, and asks if he has a cap for my tube. He has hundreds. In iteraaly less than three minutes, he tells me there is nothing wrong with the tube, snips off the end, puts on a new cap, and I am done! So the upshot is that Teresa has access to Frank’s supply of PEG caps, which she knows how to put on. Therefore, if it happens again, I only need to go to the ALS clinic, and Teresa will fix it for me. Ditto to anybody who reads this with a PEG tube; you only need to call the clinic; if it is a cap replacement, Teresa can do it. This makes me want to go to North Shore Forest Hills and scream.
So now we had 3 and-a-half hours until our access-a-ride pickup. We had lunch – I was starving—and then Ellita had her toenails done, while Jody and I explored the neighborhood around Stuyvesant Town/Peter Cooper Village, which has gone really upscale.
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