Re: Re: amazingly long post about my myotomy (mainly for those contemplating surgery)

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Dear Vicki, I was so gob-smacked (Liverpool expression meaning amazed) by your long email that I have only just recovered enough to be able to reply to you (lol). Please take it easy with the food thing. I persisted for 5 whole long weeks on the sloppy diet, but it has paid off for me. I am now reaping the benefits of my patience. Give your oesophagus a good chance to heal and don't try any daft stunts like meat and bread yet. It is just not worth it. The kinder you are to yourself now, the kinder your body will be to you in the future. I was pleased to hear that you had picked up on the idea of protecting your chest area in the car by

using a towel. It makes a heck of a difference doesn't it? The thought of experiencing an emergency stop with the seat belt pressed against that particular area still makes my eyes water. And the lifting. I know I harp on about this, but do not attempt to lift anything heavy, for ages !!!. I am just getting back to any decent lifting ability now at just under 11 weeks post-op. My surgeon said that it takes up to 9 months for everything to heal properly inside. Good Luck Vicki, and take care, Love from Ann in England XXXXVicki <vickismiles@...> wrote: Peggy,Thanks. So far the swallowing seems fine--I am still only mostly liquids and some soft foods so it is hard to tell how much improvement there is. The ibuprofen pills seem to be going down well (though a big ibuprofen pill did seem to get stuck in my throat in the hospital).Vicki> >> > In case it is helpful to those contemplating surgery, I have > > included an extremely long and detailed summary of my laparoscopic > > myotomy and fundoplication with Dr. Patti at UCSF. A lot of the > > specifics are included in case others are considering UCSF.> > > > Tues, Aug. 1> > I had my prepare appointment with an anesthesiologist, > > Kalamas. I was concerned in that she didn't seem interested > > in reading any of my prior medical records that I had painstakingly > > gathered for the exam. Luckily, I summarized all the medicines I > > had been given during my past two knee surgeries on a single sheet > > of paper that she quickly reviewed. My concern was that I had major

> > nausea/vomiting issues after the two knee surgeries that I didn't > > want repeat. Dr. Kalamas was nice enough to tell me to page her so > > that she could discuss my case with my actual anesthesiologist on > > Friday morning.> > > > Fri, Aug. 4> > I arrived 6 am for my 7:30 am surgery. Two nurses checked > > by vital signs and asked me some routine questions. They said I was > > all set and just needed to wait for the anesthesiologist. Since I > > assumed that meant they would not be doing a urine test, I went to > > the bathroom only to be told two minutes later that they needed a > > urine sample. Turns out the prepare people forgot to do a > > pregnancy test (which actually isn't a concern for me but they are > > required to do it). Luckily, the anesthesiologist said he could > >

get a blood sample from the IV he was putting in so I wouldn't need > > an extra prick to get blood for the pregnancy test (since I couldn't > > do the urine test). They also got blood to determine my blood type > > in case I needed a transfusion. I had wanted my mom to be used as a > > blood donor if possible but was told it was too late for that (I > > guess she would have had to have donated the blood already).> > > > I was worried when the anesthesiologist said there was no > > need for him to talk with Dr. Kalamas about my prior medical > > history. I thought this meant he wasn't being very thorough. But > > he ended up being fantastic as an anesthesiologist. He said he > > would be aggressive as possible in preventing nausea. He gave me a > > transdermal anti-nausea patch to put behind my ear before surgery. > >

I am not sure what I got during surgery. After surgery, I got > > zofran every 6 hours.> > > > Dr. Patti came by for about 2-3 minutes while I was in the > > prepare area. > > > > Then, the anesthesiologist gave me a sedative to calm me as > > we were leaving the area. I don't remember anything else until I > > woke up in recovery.> > > > In recovery, I was struggling to keep my eyes open since I > > was tired but I wanted them to release me so I could see my mom. > > Turns out I got a minor black eye for my left eye and the area was > > swollen so it was difficult for me to see out of that eye. I was > > told this was either from my being on my left side during the > > surgery or from tape over my eye which aggravated me. And my left > > shoulder was sore. I didn't have much stomach pain. And NO

nausea.> > > > I had requested a private room (since they are supposedly > > the same cost as a semiprivate room at UCSF). But turns out I > > wasn't even given a semiprivate room. They transferred me to LSU > > (limited surgery unit). Basically it was about 2 to 3 rows of about > > 5 beds right next to each other with a curtain between them. I am a > > very light sleeper and was worried that all the noise would keep me > > up. But the first two nurses I interacted with seemed friendly. > > So, I was happy to stay there (given I wasn't in much pain and had > > friendly nurses I wasn't too concerned about a potential problem > > sleeping). My mom was trying to get me moved but I didn't want to > > go. Turns out the hospital did have some empty rooms but not enough > > nurses to staff them. So, I couldn't get a

regular room for the > > night.> > > > Overall, I liked the nurses there. There was one nurse (Sassy) who > > I didn't trust. She didn't seem to be following proper sterile > > technique. Whenever she gave me medicine, I asked her what it was > > to make sure she didn't give me the wrong drug.> > > > The doctors really wanted me to walk around that afternoon > > (maybe because I was considered an elevated clot risk or maybe > > because that is standard). So, I took about three short walks that > > afternoon. I felt a little light headed and maybe nauseous the > > first time I went walking but was fine after that. For some reason > > my right shoulder started to hurt some. I don't think I had pain > > from the carbon dioxide used to blow up my stomach (unless my > > shoulder pain was caused by gas migrating

to my shoulders). The > > pain wasn't that bad except when I got in and out of bed. The > > nurses weren't very helpful showing me how to do this without > > straining my stomach muscles.> > > > I later figured out a good method. To get out of bed, I > > elevated the top of the bed as much as possible so that I was almost > > sitting up at a 90 degree angle. That way I didn't have far to move > > my stomach to be in a vertical position. I moved my legs over the > > side of the bed and then pushed out of bed with my arms. To get > > back in bed, I also elevated the top of the bed so I didn't have far > > to go down to rest against the bed. At all other times I kept the > > top of the bed at about a 45 degree angle to help minimize nausea > > (since in the past I have gotten nauseous and light headed from > >

going from a flat position to sitting up).> > > > I was purposely trying to take as little pain medicine as > > possible since narcotics make me nauseous. So, I mostly took the > > minimum dose. I kept track of the timing of my anti-nausea medicine > > to ask for it every 6 hours. I also wore two cheap anti-nausea > > bands on my wrists to press on an anti-nausea pressure point. At > > one point, I was in a fair amount of pain from getting in and out of > > bed. I asked Sassy for my minimum dose of pain medicine. She kept > > coming back to ask me random questions unrelated to the pain > > medicine rather than bringing me the pain medicine. This was very > > annoying. After she gave me the medicine, she said she gave me more > > than I asked for. I was glad she ended up giving me more because of > > how much pain

I was in but I wished she had asked me first (since I > > wanted to control the amount of pain medicine to reduce nausea). > > Within 5-10 minutes, I was in much less pain. I probably would have > > been pain free if I had taken the maximum dose. > > > > At some point in the afternoon, two residents came by briefly.> > > > The nurses gave my mom a fold out chair so she spent the > > night right beside me. > > > > Due to trouble urinating, that night they put a catheter in just > > long enough to remove the urine and then took it out. It took Sassy > > and another nurse four attempts to get the catheter in. Much later > > that night or the next day, another nurse (Gloria) did the same > > thing but got the catheter in on the first try (since mentioned my > > anatomy made it really easy to

insert).> > > > A few times at night, I woke up with my tongue sticking to > > the roof of my mouth because I wasn't allowed to eat or drink > > anything. But I didn't feel too thirsty. And it helped to > > periodically apply lip balm and a sponge with water to my lips.> > > > Sat, Aug 5> > As expected, I was incorrectly given a regular food tray to > > eat even though I wasn't supposed to eat or drink anything. The two > > residents came by in the morning to say I could drink water and then > > have a soft food tray. I asked the residents to watch me drink > > water because I was afraid something bad might happen. But I was > > fine, and there was no pain due to drinking. I basically just ate > > pudding off the soft food tray. My mom got me ice-cream and > > cranberry juice. I was afraid the orange juice and

milk from the > > food try would be too rough for my stomach.> > > > I would have liked to have stayed in the LSU the next night > > but it closed for the weekend. I was officially admitted to the > > hospital Saturday morning, mainly due to my inability to urinate > > (which was probably due to all the anti-nausea medicine). I was put > > on a gurney to move me to another floor into a semi-private room. > > > > I strained my muscles when lowering myself onto the gurney. This > > caused was rather intense pain (but keep in mind the pain would have > > been less if I had been taking more pain medicine or if I had gotten > > pain medicine sooner). I was told I would get pain medicine as soon > > as they brought me upstairs. > > > > Turns out the semi-private room they assigned me to had a male in

> > it. They don't> > mix male and female patients (I actually was in so much pain I would > > not have really cared but I figured the guy might not want a female > > roommate). Luckily, my mom pointed out that there was an empty > > private room right next door and that I had requested a private > > room. So, they put me there. (There were actually a few other > > empty private or semi-private rooms nearby so you may want to have > > someone check for these right before they wheel you into a room with > > someone else.)> > > > The new nurse () said she had to wait until new orders were > > written for pain medicine since she couldn't use orders from the > > lower floor. Talk about frustrating/inane rules. They had to > > slide me onto the new bed because I said I was in way too much pain > > to

attempt to get out of the gurney and into the bed myself. > > Luckily, the sliding didn't cause much pain. for some reason > > wanted to remove the extra bed sheet from under me. I refused to > > move or have anyone touch me or the sheet. I got pain medicine 20-> > 30 minutes later, which greatly helped.> > > > I went walking a few times. My mom probably could have > > requested a cot to spend the night in the room with me since I was > > in a private room but she went to the Marriott (299 Second St.) to > > get a better night's sleep. BTW, the Marriott is somewhat expensive > > and about 5 miles away but my mom (who is much pickier than I am > > about hotels) really liked it.> > > > Dr. Patti and a resident came by briefly in the evening. > > Dr. Patti mentioned that if my bladder didn't improve they

would put > > a catheter in that night and I would keep it in until I saw a > > urologist. They tried to avoid doing this but finally decided to > > put in a catheter, which took two nurses and four attempts to > > correctly insert. The two nurses seemed very puzzled by their lack > > of success with the catheter.> > > > Sun, Aug. 6> > I was rather upset about having the catheter back in, > > especially when I heard I would need to keep it in one to two weeks > > so that all the medicine could get out of my system before a > > urologist did some bladder tests. Also, all the attempts to insert > > the catheter had made the area rather sore so it was uncomfortable > > to walk or sit with it in.> > > > One resident was nice enough to say that I could have the > > catheter taken out to try to see

if I could urinate enough to go > > home without it. That was at 7:00 am. He also said I could switch > > to ibuprofen for pain since the narcotic pain medicine may be > > causing the problem. But the nurse had to wait for written orders > > before removing the catheter. Finally, around 9 am the resident > > offered to remove the catheter himself to save time since they > > wanted to discharge me soon. He was going to give me two hours to > > see if my bladder sufficiently improved. At 10 am the nurse finally > > came by to remove the catheter; so, I told him that it had already > > been removed.> > > > I ended up being given three hours before they tested by > > bladder for retained urine because they had to turn down the IV > > machine since my IV started bleeding and hurting when they > > administered a medicine

at a high flow rate in an effort to finish > > administering the medicine soon. I think I got a blood clot in my > > vein from the IV (which is a little worrisome since I was on heparin > > to prevent blood clots and got a blood clot from my last IV in > > April. I am seeing a rheumatologist about this the send of Sept.)> > > > My bladder had improved but not enough. But the house > > doctor responsible for determining whether I could be discharged > > without the catheter offered to let me try again. Since walking > > supposedly helps the bladder function, I would go for a walk, go to > > the bathroom, and then go for a walk over and over. This took a few > > hours.. The bladder scan showed another improvement but still too > > much retained urine. The doctor very generously gave me yet another > > try. So, I

repeated the process and luckily the doctor finally > > agreed to release me without the catheter at 4 pm. It had occurred > > to me that the hospital might charge me for another day since I was > > originally suppose to be discharged by noon. I thought about asking > > if they had gotten the insurance company's permission for me to stay > > longer but was afraid this may cause them to discharge me earlier. > > I figured it was worth potentially paying for the extra day myself > > to see if I could avoid the catheter.> > > > I ended up going about 7-8 hours without pain medicine > > because the nurse spent several hours waiting for the written orders > > for the ibuprofen. Then he wanted to wait until I ate from the > > lunch tray since it is good to take ibuprofen with food. Luckily I > > wasn't in much pain; I

just wanted some pain medicine in my system > > before attempting the hour drive home. For the ride home, I put a > > regular pillow against my stomach and then inserted the seat belt > > over the pillow. I didn't have much pain on the way home.> > > > Since then I have just been on ibuprofen (800 mg, three > > times a day) and protonix (for acid reflux).> > > > I had asked for a stool softner for constipation but was > > told that was not recommended for me. So, they gave me prune > > juice. I asked the senior resident how much she thought I could > > have without getting diarrhea (which I thought was a fair question > > since I didn't want diarrhea on my ride home). She just said "why > > don't you just drink the prune juice and find out for yourself." > > (Needless to say, I preferred interacting with the

more junior male > > resident.)> > > > Mon, Aug. 7> > I went to my student health services because of blurred > > vision and dilated pupils. The doctor thought it was just from the > > anti-nausea patch. The problem seems to have gone away.> > > > Thurs, Aug. 10> > Usually, I don't have much pain. Laughing, coughing, and > > crying are still rather painful because they use my stomach > > muscles. Getting in and out of bed is much less painful than it was > > at the hospital. I still use my arms to help raise and lower my > > body onto the bed.> > > > My bladder hasn't recovered completely but I think it is > > okay.> > > > Despite trying to force myself to drink prune juice, I am > > still constipated but Dr. Patti just called and said I can try an > >

enema.> > > > Overall, the surgery has been less painful than I > > expected. Compared to knee surgery, it was great to be able to walk > > around the same day as the operation. Now, it often feels as though > > I haven't had surgery recently. Dr. Patti said the surgery went > > well. My mom told me that he said my esophagus was still a normal > > size (I want to confirm that she heard him correctly--I am really > > hoping this is true.)> >>

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Kathleen,It is always better to go for lap-surgery in this case..as it gives better results than doing it after doing couple of dilatations..Dilatations are not as long lasting as surgery..Mukesh"Kathleen R." <eringobrough2@...> wrote: Vicki, *Thank you so much* for sharing your experience with us. It is very timely for me as I am meeting next Thursday with a surgeon to discuss the possibility of a myotomy for myself. I keep going back and fourth about what to do. Truthfully -- the

idea of surgery scares me. I really appreciate your honest description. -Kathleen