I have been at the height of frustration, anger and depression for more than a month. I have had a faulty PEG tube that needed to be removed due to leakage and I had to keep putting off its removal over roughly an eighteen-month period. My gastroenterologist and I made the determination that the leaky and clogged tube needed to come out. Not only could I no longer use it if I ever arrived tothe point where I could no longer swallow, but the site wasleaking t
A PEG tube [Percutaneous Endoscopic Gastrostomy] is urged by doctors for ALS patients to get early in the disease. Risks from anesthesia increase as the disease progresses, and especially as respiration deteriorates. Eventually, an ALS patient has problems swallowing and the PEG is often placed earlier rather than later as a precaution, whether or not it is needed at that time. The patient can eat by mouth even when the tube is there. In my case, I had a tube placed in 2005, a year after diagnosis. At the time, I was totally able to eat by mouth. But it was suggested to me by the ALS clinic, that it was a good idea for me to tube-feed as a way to conserve energy. So I put cans of formula in my tube, only to find that the whole pleasure of eating was missing from my life. Furthermore, the more I became knowledgeable about nutrition, the more uncomfortable I felt about a substance that was full of chemicals, and over which I had no control. Yes, it uses up energy to eat solid food -- using utensils, chewing, swallowing, etc. -- but I made that choice. At that point also, my disease seemed to be progressing so rapidly that I wasn't ready to give up food before I absolutely had to.
My progression slowed down and 2010 rolled around. At that point, the PEG had been in for five years and was getting old and weak. I had changed ALS clinics and they referred me to a different gastroenterologist from the original one. Although I had heard that this PEG could be removed and another one placed in the same opening, the replacement wasn't a success and I was told I would need to go through a second endoscopic procedure. Now, this is IMPORTANT: if a PEG tube falls out, the patient MUST GO to an emergency room IMMEDIATELY [if not sooner] because the hole starts to close up IN A FEW HOURS!! So one morning, the tube that the doctor had replaced for my old tube, fell out as I was getting dressed. This was not a surprise because the gastroenterologist already said he would most likely have to make another hole because the original one was "not good anymore" [whatever that meant]. So, while I was sitting at the edge of my bed looking at my fallen-out tube, I knew in my case, that I wouldn't go to the ER and so I let the hole close up. But I will repeat this: when a tube falls out and you have any intention of having another PEG placed in the same hole, YOU MUST GO TO THE CLOSEST EMERGENCY ROOM IMMEDIATELY because the hole will close up starting in a FEW HOURS and will usually be TOTALLY CLOSED WITHIN A DAY. This previously-stated information is going to figure into my telling below of what is happening to me in the present moment.
Fast-forward to the year 2014. My tube that was placed in a whole new opening via endoscopy in the fall of 2010 [the year the replaced first tube fell out] had been giving me problems for a long time. It was so clogged that water flushes were unsuccessful. Moreover, the skin on my abdomen around the tube [called the "stoma"] was constantly irritated and inflamed by a leakage of stomach acid. And even worse, the stomach acid emanated an odor that no perfume or body spray could cover. And --if that weren't bad enough-- the gauze around the tube was no longer absorbing the ever-increasing amount of acid leaking out of the tube and onto the stoma, was now seeping onto my shirts and tops. Soon, my aides were dividing my tops into two distinct categories -- "house" shirts and "going-out" shirts. As you can imagine, with time, the "going-out" shirts eventually made their way one-by-one to the "house" shirts collection. And after a while, I would have nothing clean and unstained enough to wear for going out. When I went to the annual Wings Over Wall Street fundraiser in October, of 2015], I sent one of my aides [Ellita -- whom I call my "stylist"] to the local Dress Barn, where she managed to pick out a lovely outfit of skirt and top fit for a "dressy after-work attire" function. Needless to say, I came home with a stomach acid leak on the blouse. As I write this, I am wearing an old ALS Walk tee-shirt with no bra. My bras I have reserved for rare times when I leave the apartment for medical appointments in the last few days when I don't want my "girls" to bounce with no support [not a good look]. Yes, my second stoma is high enough to wet and stain my bras.
Fast-forward to Summer of 2014 when I see my gastroenterologist [GI Doctor] and we both agree that this faulty tube has to come out. In the fall of that year, I was hospitalized for a DVT blood clot in my left leg [see my blog entry of December 8, 2014] , followed by six months of having to take a blood thinner called Xeralto. In order to remove the faulty tube, I would need to stop the Xeralto. So, there goes a six-month period where I had bigger fish to fry than this tube site. Then, after going off the Xeralto in the summer of 2015, it was a few months later that I ended up in the hospital again in October, 2015 for a recurrence of a DVT blood clot. [see blog entries for To this day, we don't know if the cardiologist was mistaken when he cleared me in June, 2015 free of blood clots and able to stop taking Xeralto. So when I got out of the hospital, we were coming on the holiday season of 2015 and I knew I needed to stay on Xeralo for several months. Then, at the beginning of 2016, I was laid up in bed for three months with a broken tibia and my faulty tube was once again relegated to a back burner. Now, finally on May 11, thet ube was removed and as of a full month later, itis still gushing out food and stomach acid, ruining all my shirts and bras.
Two weeks after the tube was removed and still gushing, one of my aides told me this was all ridiculous, and was getting out of hand. She told me that not only did I reek of a sour odor, but my entire apartment reeked and when she walked in from the outside, it hit her like a lead balloon. We went to the local emergency room of Northwell Health Forest Hills. I texted my friend Nancy and she came to the ER to meet me. There was a really nice [and cute!] doctor there who consulted with another doctor. He concluded that this stoma was never going to close by itself. And this is not something you can just put a few stitches at the top because it goes deep into the gut. A surgeon has to stitch it up from inside; so I freaked out at the thought that I might need surgery! My breathing is bad enough that anesthesia presents a terrible risk.
A desperate email to my GI doc and his PA [Physician's Assistant]. I was panicky. My GI doc said there were less invasive procedures we could try and he gave me an appointment the following week to talk about it. At the appointment he explained that I probably wasn't healing because the stoma [hole] was forming scar tissue and so wasn't closing up the way it should. So we scheduled a procedure that involved putting an abrasive substance inside the hole to open it up again and form new raw skin that could then heal and form scar tissue where it needed to form and close up the stoma. In order to do this, I would have to be off my Xeralto [blood thinner] for four days before the procedure and a few days after. So I went back for the procedure a week later and stopped the Xeralto four days before and stayed off it several days after.
Where am I now? Well, I haven't been out of the house -- except for doctor appointments -- since the tube was removed on May 11. I have been in the apartment with frequent dressing change, no bra because the bras have been badly messed up. I could smell the odor around me so -- along with my bralessness -- I was not really fit to go out. My birthday was June 7, and I was supposed to go out that evening for dinner with my friend Louise and I had to take a raincheck. When my friend Nancy heard that I would be sitting home, she brought me sushi from one of my favorite restaurants. She made an otherwise depressing birthday very festive. Two nights later, Louise brought Asian food over from a very good neighborhood restaurant, and banana pudding from the famous Magnolia Bakery in Manhattan. I have dinner plans with two other friends at the end of the month and wonder if I will have to delay those outings too. I don't know if this latest procedure will work. If it doesn't, I will have the endoscopic procedure to stitch the stoma from inside my stomach. That will have to be scheduled soon because with my winter and spring relegating me to stay cooped up, I refuse to ruin my favorite season of the year -- summer. In the meantime, I am breaking the bank with purchases of 4x4 gauze pads, tape and other supplies for my dressings, which need to be changed a few times a day. Not to mention that all my tee-shirts are forever ruined. along with some nicer shirts. I can't go shopping for new clothing until the hole closes up, either by nature or surgery. Until then, I remain frustrated and angry, with a serious case of cabin fever.
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