Well, things are slowly getting better. I am still on a mostly liquid diet as I find that I am having a few issues. One being my system rejecting food and the other that my stomach is not only physically smaller due to the fundoplication but also smaller from lack of real food since the 23rd of October.
It didn't seem to matter too much as I really didn't have much of an appetite but now I find I am feeling hunger just that about 1 cup of anything liquid or mushy fills me up. As a result of this I am down 9 lbs since the day of the operation (Oct 24). Fortunately I had put a bit of weight on over the summer so had a bit of leeway but I am feeling fairly weakened of course.
I visited the surgeon this past Tuesday for followup and he expressed concern for my weight and inability to retain sustenance. He said to followup with him in a week if it hadn't changed or improved and then another followup in a month's time. He removed the steristrips (I thought there were stitches under - there were but dissolving) and all but 2 are healed over. The other 2 still have some scabbing and were the biggest of the incisions. I also found that I had a few issues taking regular tylenol even though it was in an easy to swallow format for me the round pills stuck for a bit. He said to try smaller or cutting them and to let him know if that continued. Obviously there is some swelling from the surgery so fingers crossed that is all there is.
Interior I can feel discomfort and sometimes there is still pain. I have to admit when the pill stuck I freaked out a bit and worried that I would have to go to the ER but after about 15 mins it slipped the rest of the way down - phew. I also find that I still tire very easily - almost too easily - when I try to increase my activity level. 2 hours at the shop and I'm wiped out. So baby steps where that is concerned. I will increase my daily activity level til hopefully it returns to somewhat normal.
So what are my feelings overall?
At this point I am still on the fence as to having had this surgery. Yes in the long run I will be able to eat fairly normally with some things I may have to avoid or moderate - hopefully. But that first 10 days I had serious regrets. Not just the pain which was pretty intense but also the thought that I had still 5 or so weeks of recovery. That I had done something to my body that changed my anatomy and how is that going to affect me down the road. That I truly hadn't realized just how long and difficult the recovery would be. That almost 3 weeks later I would still be feeling not myself. That I could seriously get sick of broth and jello and want to start eating but also afraid to because of the risks. Slow and steady, stick to the Nissen Diet (for this type of surgery).
I have read many blogs and forums where the outcome is all over the map from some having no issues at all and are fully back to normal and others that have residual affects including still some form of restriction in their esophagus. I am hoping that I will be in the first group.
I am getting a bit stir crazy too. I have watched enough Netflix (Rupauls Drag Race for one) and the Heart & Home station has given me some easy watching movies that don't need too much thinking but are still enjoyable. I think I've also read about 6 books. I'm tired also of sleeping in a semi-upright position. My neck, upper back and tail bone are feeling the consequence of that. I tried sleeping flatter but the discomfort in my lower chest was unbearable. I also find sleeping on my left side feels like my right side incision is pulling so I can't do that. So I spend alot of time more or less prone but upright at the same time. Again hopefully that will eventually change over the next little while.
It's also difficult letting go of the normal things that I can't do at this time. Like lifting a bag of groceries or a basket of laundry. Running the vaccuum. Cleaning up the backyard. Raking or sweeping the leaves. Stuff that needs doing but I just cannot do it! Frustrating. Yes it's only been 2.5 weeks and it was major surgery but if you know me you know that I am not someone who likes just laying around day after day without doing SOMETHING productive.
Thank goodness I have amazing clientele and they are super supportive and patient at this time. I wish I had been able to do this a few weeks earlier and be farther on the road to recovery but at least it has been done before my crunch time and I can be there when I need to be.
Insofar as eating, I have 2 different kinds of supplements (Boost Juice & Ensure), various creamed or pureed soups, apple sauce, yogurt and cream of wheat. Ice cream and popsicles help fill the void of snacks. So for the most part still pretty liquid. The doctor suggested I try adding a few things from the mushy part of the diet (a 4 week program) so Drew made some swedish meatballs (amazing recipe with ground turkey one of our favourites) and I enjoyed a cup of mushy noodles with sauce (no meat). It was divine! Had that for 2 nights and tonight I'm trying some good ol macaroni and cheese made in the crockpot and hopefully the noodles will be super soft and easily swallowed.
Hard to believe that these simple things bring so much anticipation.
I am still overwhelmed by the amount of friends who make a point of touching base with me and checking on my progress. Their support, love and prayers are so appreciated and I realize that I have so many people in my life who I love and who are there for me. <3 Thank you all from the bottom of my heart.
I'll try to touch base with you all next week.
Love ya,
Deb
Saturday, November 10, 2018
Thursday, November 1, 2018
First Week Update
Warning Long Post (tale of the roommate from hell included :) )
So I had the operation last Wed 24th. I was super nervous going in and felt that I had armed myself with enough knowledge of what was planned. It did all go as planned. No issues with the surgery. However, the recuperation is another thing altogether.
First off, I felt that the nurses and care provided to me was top rate. I have no issues at all with the way I was treated right from the moment I walked into the operating room til I left 2 days later. Just want to say that.
What I didn't expect was the amount of pain and overall discomfort I would be in. While the surgery was performed laparoscopically, there are 5 total incisions not to mention the incisions on the inside. The pain meds were readily available during the day, however, the night time nurse was obviously super competent but the 2nd night she seemed really run off her feet. It took much longer for her to return. That is not her fault but just made things more intense for myself.
I also had the weirdest, rudest, most self centered roommate. This made the entire stay much more difficult. I'll talk about her later.
One of the frustrating issues I had following the surgery was the inability to void my bladder. I pretty much slept on and off the whole day and around 3pm the nurse asked me if I needed to use the bathroom. She helped me into a commode chair she brought into my curtained off area of the room (a ward of 4 people). The pain that ripped through me was pretty intense and I was dizzy and disoriented. I sat on the commode for at least 1/2 hr. Could have been longer I am not sure. I couldn't do it. No matter what I did. So when she returned she said she'd have to catheterize me and with a bladder ultrasound discovered i had over 850 ml of urine. How the hell does one wee bladder hold that much!! With much fiddling around she managed to extract all of that (a very uncomfortable procedure) cleaned up, gave me some morphine & gravol and you would think I would fall off to sleep. Nope. I would doze for a few mins maybe an hour and then the roommate from hell would invade my sleep and I'd be awake again. This went on all night. I was on NBM (nothing by mouth) so I hadn't had anything to eat or drink since 8pm the night before. I was allowed a sponge lollipop dipped in water to wet my whistle but that was it. I was not hungry but really thirsty. I was on IV saline so I was not dehydrated but my mouth, lips and throat were like the desert.
So back to my neighbour. There are 4 people in these wards. All recovering from a surgery. I had no way of knowing when any of them had theirs, they were there when I arrived. Across from me were 2 older ladies. One who had a knee replacement and the other an emergency groin hernia repair. The one next to me - the nightmare - had had a gallstone removed. A GALLSTONE. ONE. Just setting the scene lol. She lay there moaning and grunting all day. Speaking in what I later learned was spanish but didn't sound like any language I recognized. She called the nurse at least every 15 mins. In between her grunting. I cannot even explain to you how she grunted. It was with every breath. Like every breath was too painful too take and came out in a sharp "unh" sound. Non stop. Every breath. Loudly. When the staff would come in to take vitals or do bloodwork she would curse at them. In English and spanish. Complaining they were hurting her (a blood pressure cuff for goddsake). And each and everyone of them were nothing but patient and determined with her. Not once did I see them lose patience or ignore her. However, for me, and the other ladies, it was the non-stop grunting and moaning and loud talking (to herself and at 3am on her cell leaving messages to someone) that made me finally ask her very nicely to please stop grunting (cause she could - she stopped when she got up to go to the bathroom and then would start up again when she walked back) so the others could get some sleep. She first said to me I am in pain. I said I know, I am in pain too and Im sure the other ladies are as well but we all need our sleep. She said - I don't care about you I only care about myself! I was astounded. And then after finally getting some sleep I think, at 3am she had the gall to turn on her light and call 3 different people and leave some long convoluted message between crying and moaning and pleading to go home. I then asked her to please not do that and turn off her light. She told me No.
Unbelievable.
Drew had texted me earlier in the evening and I had told him about the grunting etc. and he told me to ask them to move me to a semi. Well that never happened. I started asking right away if there was anyway to transfer rooms. I was told they would speak to room management in the morning. I was hoping I would be going home the next day so I was hopeful.
During the night I had to have a second unsuccessful go at using the commode. Again I was subjected to a scan and subsequent catheterization. A further 700 ml was extracted. I was getting quite upset about not being able to do this. Being in the setting I was in was most likely a huge factor.
The next am the 2 ladies across from me were discharged. I again started asking for a room change as I was exhausted and knew that sleep was highly unlikely.
Thurs AM dawned early with the change of shift and the vitals being taken. I was informed I would be going down to have the swallow test done first thing. First off getting on and off the gurney was excruciating. It is almost impossible to do anything like that without engaging your stomach muscles. Even swinging your legs up onto a bed for instance uses the tummy. I also was over dry in the mouth and extremely dizzy and nauseous. I mentioned this to the lady in the imaging and she went out of her way to try and make the whole process less painful. I had to ingest 2 different liquids in this swallow test. The first was an oily gastro fluid that I was asked to hold in my mouth and swallow on command and the tech would take pictures as I swallowed. This I did 2x and was to detect any leakage around the incisions in my esophagus and stomach (the fundaplication). This is obviously very important! However, this greasy stuff made my nausea much more pronounced and one warning I had received was under no circumstances am I to vomit. Apparently vomiting is always going to be problematic after this particular surgery and is discouraged for the rest of my life. Great - always had a super sensitive stomach. The second liquid was the Barium swallow which I have had before. It is a thick chalky foul tasting liquid that again you hold in your mouth and swallow while the progress is tracked by xray. I was hesitant and was offered time to wait but I thought no lets just do it. So I did and managed to hold it and fortunately they only asked me to do it one time. This barium swallow showed that there was still a longer than normal time for the fluid to pass down into my stomach. I wasn't surprised as the operation didn't repair or was expected to repair the lack of motility in my esophagus (the dysphagia) and there would no doubt be a bit of swelling from the surgery itself. The attendant was helpful getting me off the table. She raised the table til I was in a standing position and then I walked over and she helped me get my legs back onto the gurney. Much better than the process of getting onto the table where I scootched over.
I saw my surgeon Dr. M in the hallway as he checked in with the xray and told me that it was all good as expected and everything had gone well and also that he wanted me to stay at least 1 more night.
Great.
As soon as I returned to my room. I asked the nurse to help me into the washroom and with the door closed and the water running full on I successfully voided my own bladder. It took a few mins but once I did I felt so much better and relieved. I again asked the nurse to please please find me another room semi or private. I had told her of the inconsideration of the roomie and she was sympathetic. After all she was dealing with her as well
My lovely sister came down from Ottawa the day after the surgery (Thurs) and spent the afternoon with me at the hospital. She brought me some Tim's decaf plain tea and it was like nector. I could finally start on the clear liquids diet since I had passed the swallow test. She also went down to the pharmacy and found me some earplugs so I could try and drown out the grunting etc. My sister in law arrived with a beautiful orchid. We had a nice visit and by that time the bed across from me had been filled and she had her own visitor. After both my sisters left the lady across the way had someone come in and tell her they were moving her to a private room. She was like no I didnt ask for that. And I piped up and said that it was me that had asked. So they started moving me. First my bedside table with the orchid. Drew was now there after work and he gathered up all my stuff and prepared to follow us. And then they stopped moving me as they saw that the name was not the right name. It was the lady across from me her daughter had called and asked for a private room for her mom. She again refused and said to give it to me. I kept saying to her are you sure? Cause you will not get any sleep. She said she actually didn't sleep at night and that I needed to get some sleep. The outcome was neither of us was moved and I had to ask the nurse to go and find my bedside table with my orchid on it! That was the worse part of the whole time was that bit of disorganization and lack of communication that ensued. Both of us ended up spending yet another night with the grunter. Who by the way slept ALL day. Snoring away for over 12 hours except for when she was awoken for vitals and then we had to listen to her curse out the poor nurses. I spoke up a few times asking her not to talk that way to them and when it was my turn went out of my way to be polite, thankful and empathetic.
After Drew left around 7, a couple friends from the cottage dropped by with a beautiful floral arrangement and good cheer. It never fails me to appreciate the love I have and receive from my cottage people. We had a nice visit and they could tell I was wearing down so they said their goodbyes.
That night I was so exhausted and between the drugs and the earplugs managed to get a few hours of sleep here and there. The lady across from me had it worse this time as she also had a new roommate who not only snored big time but being on blood thinners they were taking blood samples every few hours and would turn on the overhead lights! I don't understand why as each cubby has a light source but I just put the blankets over my head and tried to drown it all out. By 6 it was obvious nobody was sleeping so I started commiserating with my across lady. And when I went to the washroom I checked in with the other older woman (who had had a toe amputation) and she just looked at me and pointed at my neighbour. We were all WTH.
With shift change comes the vital check and blood work. My neighbour again loudly refused to have this done. She was told firmly but politely that she was in the hospital that she was sick and needed to have these tests done so they could look after her. She said no, I am not sick I am pregnant. Well I cannot laugh but that made me and the other roommates laugh out loud. This woman was at least my age. Hard to tell true but well over that age. And this revelation came after I heard her tell the nurse earlier that she had children (when asked if she did) and she didnt know how many as she had them taken away. Didn't know how many? And now she was pregnant? You have to laugh this woman was either mentally unwell or a story teller supreme. The nurse taking the blood samples stuck her head between our curtains and she was trying so hard not to laugh and was gesturing at me to please stop laughing...well I tried.
The good news was that finally someone came in from room management and offered us both a private room. We both did the paper work and were told if we were discharged there wouldnt be a charge as at that point we were both hopeful we could go home. And yes of course we were both discharged. I was so relieved to be going home to my own bed along with my sister who was here to help me over the weekend.
The weekend was long. I mostly slept - obviously trying to catch up but also the pain meds help. Sister made me tea and broth and jello. Brought me my meds. Went to the local natural medicine place and picked up some liquid vitamins for me as obviously I am not getting any real nutrition. Made sure I was OK. Her help is immeasurable even though I wasn't good company. She watched old movies with me and entertained our new kitten. I was sad to see her go but she had given up 4 days to stay with me and I can't say enough about that.
Both of my sons paid me a visit as well over the weekend. I was happy to see my son, my grandson and his girlfriend for about an hour on Saturday which was a good opportunity for my sister to meet the new baby (almost 5 months old now) and the girlfriend. I won't be able to pick him up for at least 6 weeks though. And my other son came at my request to change the kitty litter as I wasn't going to ask my sister to do that (no pets) and I certainly cannot. He was glad to help and also to check on me, see his aunt and see the kitten (Buddy) we adopted through him.
Recovering is taking longer than I thought. I am weaker than I expected but that is most likely from being only on clear fluids still. The pamphlet given me at the hospital stated after 4 days I could attempt the next level of liquids. Introducing milk products, pureed soups, ice cream etc. Drew stopped and picked up a bunch of stuff for me. I had some lobster bisque for dinner (1 cup) and that went down pretty good but felt heavy on my tummy. The next morning (Tuesday) I thought I would try the thin cream of wheat with some milk. That didn't go so well. Neither did the vanilla milkshake I made myself for lunch. Both didn't sit in my tummy very long. I won't go into details but vomiting was not the issue. I also felt better enough that I ventured downstairs and moved to the couch. I also decided to try going without pain meds. By 7pm though I was starting to feel very unwell and went back upstairs and to bed. Tuesday night was a long night with discomfort and my stomach making noises like I've never heard before!
Wednesday I awoke with a headache that refused to go away and an upset tummy. I decided that I would try my cream of wheat with some almond milk (to see if it was the milk I was having issues with). Unfortunately it appears that it wasnt the milk. Its semi solid food period. So for the rest of the day I returned to clear liquids, broth, tea, juice and jello. I also had what felt like severe heartburn. I tried some zantac and then later resorted to sucking on a tums which seemed to help but for a short time. This was a disappointing day and over all rough one. Obviously I "pushed" things the day before by changing my bed for the couch and moving around more (which I should be doing) and changing up my diet. I stayed in bed again all day Wed. and thought if I still had a headache and heartburn the next day (today) I would call my Dr.
Today I awoke feeling better than yesterday. While Drew had breakfast I showered and changed into a clean tshirt style dress (out of nighties). I tried again the cream of wheat (well thinned with milk) and about 1/2 way through realized that wasn't going down so good. Back to broth for lunch.
So currently I am watching tv on the couch and while I am frustrated with my progress or lack there of I have to realize that it is only the 8th day. Well 7th post surgery. That this is a pretty major surgery and there are things going on inside as well as outside that need healing. That my whole digestive system may take quite a while to adjust. My goal is that hopefully I will be able to enjoy Christmas dinner. Physically I should be recovered by then but hopefully also my system will be able to tolerate solid food by then.
I have to say that the number of people who have responded to my previous blog post as well as privately contacting me via FB message or text message has been overwhelming. I have had over 300 views of the blog post alone. It makes you realize that you touch and are touched by so many people in our life and that when you need them they are there in one capacity or another. Prayers, thoughts, words of kindness are all so appreciated and overwhelming. Thank you for being my people.
I'm heading upstairs to get some pain meds now. Love to you all.
Deb
So I had the operation last Wed 24th. I was super nervous going in and felt that I had armed myself with enough knowledge of what was planned. It did all go as planned. No issues with the surgery. However, the recuperation is another thing altogether.
First off, I felt that the nurses and care provided to me was top rate. I have no issues at all with the way I was treated right from the moment I walked into the operating room til I left 2 days later. Just want to say that.
What I didn't expect was the amount of pain and overall discomfort I would be in. While the surgery was performed laparoscopically, there are 5 total incisions not to mention the incisions on the inside. The pain meds were readily available during the day, however, the night time nurse was obviously super competent but the 2nd night she seemed really run off her feet. It took much longer for her to return. That is not her fault but just made things more intense for myself.
I also had the weirdest, rudest, most self centered roommate. This made the entire stay much more difficult. I'll talk about her later.
One of the frustrating issues I had following the surgery was the inability to void my bladder. I pretty much slept on and off the whole day and around 3pm the nurse asked me if I needed to use the bathroom. She helped me into a commode chair she brought into my curtained off area of the room (a ward of 4 people). The pain that ripped through me was pretty intense and I was dizzy and disoriented. I sat on the commode for at least 1/2 hr. Could have been longer I am not sure. I couldn't do it. No matter what I did. So when she returned she said she'd have to catheterize me and with a bladder ultrasound discovered i had over 850 ml of urine. How the hell does one wee bladder hold that much!! With much fiddling around she managed to extract all of that (a very uncomfortable procedure) cleaned up, gave me some morphine & gravol and you would think I would fall off to sleep. Nope. I would doze for a few mins maybe an hour and then the roommate from hell would invade my sleep and I'd be awake again. This went on all night. I was on NBM (nothing by mouth) so I hadn't had anything to eat or drink since 8pm the night before. I was allowed a sponge lollipop dipped in water to wet my whistle but that was it. I was not hungry but really thirsty. I was on IV saline so I was not dehydrated but my mouth, lips and throat were like the desert.
So back to my neighbour. There are 4 people in these wards. All recovering from a surgery. I had no way of knowing when any of them had theirs, they were there when I arrived. Across from me were 2 older ladies. One who had a knee replacement and the other an emergency groin hernia repair. The one next to me - the nightmare - had had a gallstone removed. A GALLSTONE. ONE. Just setting the scene lol. She lay there moaning and grunting all day. Speaking in what I later learned was spanish but didn't sound like any language I recognized. She called the nurse at least every 15 mins. In between her grunting. I cannot even explain to you how she grunted. It was with every breath. Like every breath was too painful too take and came out in a sharp "unh" sound. Non stop. Every breath. Loudly. When the staff would come in to take vitals or do bloodwork she would curse at them. In English and spanish. Complaining they were hurting her (a blood pressure cuff for goddsake). And each and everyone of them were nothing but patient and determined with her. Not once did I see them lose patience or ignore her. However, for me, and the other ladies, it was the non-stop grunting and moaning and loud talking (to herself and at 3am on her cell leaving messages to someone) that made me finally ask her very nicely to please stop grunting (cause she could - she stopped when she got up to go to the bathroom and then would start up again when she walked back) so the others could get some sleep. She first said to me I am in pain. I said I know, I am in pain too and Im sure the other ladies are as well but we all need our sleep. She said - I don't care about you I only care about myself! I was astounded. And then after finally getting some sleep I think, at 3am she had the gall to turn on her light and call 3 different people and leave some long convoluted message between crying and moaning and pleading to go home. I then asked her to please not do that and turn off her light. She told me No.
Unbelievable.
Drew had texted me earlier in the evening and I had told him about the grunting etc. and he told me to ask them to move me to a semi. Well that never happened. I started asking right away if there was anyway to transfer rooms. I was told they would speak to room management in the morning. I was hoping I would be going home the next day so I was hopeful.
During the night I had to have a second unsuccessful go at using the commode. Again I was subjected to a scan and subsequent catheterization. A further 700 ml was extracted. I was getting quite upset about not being able to do this. Being in the setting I was in was most likely a huge factor.
The next am the 2 ladies across from me were discharged. I again started asking for a room change as I was exhausted and knew that sleep was highly unlikely.
Thurs AM dawned early with the change of shift and the vitals being taken. I was informed I would be going down to have the swallow test done first thing. First off getting on and off the gurney was excruciating. It is almost impossible to do anything like that without engaging your stomach muscles. Even swinging your legs up onto a bed for instance uses the tummy. I also was over dry in the mouth and extremely dizzy and nauseous. I mentioned this to the lady in the imaging and she went out of her way to try and make the whole process less painful. I had to ingest 2 different liquids in this swallow test. The first was an oily gastro fluid that I was asked to hold in my mouth and swallow on command and the tech would take pictures as I swallowed. This I did 2x and was to detect any leakage around the incisions in my esophagus and stomach (the fundaplication). This is obviously very important! However, this greasy stuff made my nausea much more pronounced and one warning I had received was under no circumstances am I to vomit. Apparently vomiting is always going to be problematic after this particular surgery and is discouraged for the rest of my life. Great - always had a super sensitive stomach. The second liquid was the Barium swallow which I have had before. It is a thick chalky foul tasting liquid that again you hold in your mouth and swallow while the progress is tracked by xray. I was hesitant and was offered time to wait but I thought no lets just do it. So I did and managed to hold it and fortunately they only asked me to do it one time. This barium swallow showed that there was still a longer than normal time for the fluid to pass down into my stomach. I wasn't surprised as the operation didn't repair or was expected to repair the lack of motility in my esophagus (the dysphagia) and there would no doubt be a bit of swelling from the surgery itself. The attendant was helpful getting me off the table. She raised the table til I was in a standing position and then I walked over and she helped me get my legs back onto the gurney. Much better than the process of getting onto the table where I scootched over.
I saw my surgeon Dr. M in the hallway as he checked in with the xray and told me that it was all good as expected and everything had gone well and also that he wanted me to stay at least 1 more night.
Great.
As soon as I returned to my room. I asked the nurse to help me into the washroom and with the door closed and the water running full on I successfully voided my own bladder. It took a few mins but once I did I felt so much better and relieved. I again asked the nurse to please please find me another room semi or private. I had told her of the inconsideration of the roomie and she was sympathetic. After all she was dealing with her as well
My lovely sister came down from Ottawa the day after the surgery (Thurs) and spent the afternoon with me at the hospital. She brought me some Tim's decaf plain tea and it was like nector. I could finally start on the clear liquids diet since I had passed the swallow test. She also went down to the pharmacy and found me some earplugs so I could try and drown out the grunting etc. My sister in law arrived with a beautiful orchid. We had a nice visit and by that time the bed across from me had been filled and she had her own visitor. After both my sisters left the lady across the way had someone come in and tell her they were moving her to a private room. She was like no I didnt ask for that. And I piped up and said that it was me that had asked. So they started moving me. First my bedside table with the orchid. Drew was now there after work and he gathered up all my stuff and prepared to follow us. And then they stopped moving me as they saw that the name was not the right name. It was the lady across from me her daughter had called and asked for a private room for her mom. She again refused and said to give it to me. I kept saying to her are you sure? Cause you will not get any sleep. She said she actually didn't sleep at night and that I needed to get some sleep. The outcome was neither of us was moved and I had to ask the nurse to go and find my bedside table with my orchid on it! That was the worse part of the whole time was that bit of disorganization and lack of communication that ensued. Both of us ended up spending yet another night with the grunter. Who by the way slept ALL day. Snoring away for over 12 hours except for when she was awoken for vitals and then we had to listen to her curse out the poor nurses. I spoke up a few times asking her not to talk that way to them and when it was my turn went out of my way to be polite, thankful and empathetic.
After Drew left around 7, a couple friends from the cottage dropped by with a beautiful floral arrangement and good cheer. It never fails me to appreciate the love I have and receive from my cottage people. We had a nice visit and they could tell I was wearing down so they said their goodbyes.
That night I was so exhausted and between the drugs and the earplugs managed to get a few hours of sleep here and there. The lady across from me had it worse this time as she also had a new roommate who not only snored big time but being on blood thinners they were taking blood samples every few hours and would turn on the overhead lights! I don't understand why as each cubby has a light source but I just put the blankets over my head and tried to drown it all out. By 6 it was obvious nobody was sleeping so I started commiserating with my across lady. And when I went to the washroom I checked in with the other older woman (who had had a toe amputation) and she just looked at me and pointed at my neighbour. We were all WTH.
With shift change comes the vital check and blood work. My neighbour again loudly refused to have this done. She was told firmly but politely that she was in the hospital that she was sick and needed to have these tests done so they could look after her. She said no, I am not sick I am pregnant. Well I cannot laugh but that made me and the other roommates laugh out loud. This woman was at least my age. Hard to tell true but well over that age. And this revelation came after I heard her tell the nurse earlier that she had children (when asked if she did) and she didnt know how many as she had them taken away. Didn't know how many? And now she was pregnant? You have to laugh this woman was either mentally unwell or a story teller supreme. The nurse taking the blood samples stuck her head between our curtains and she was trying so hard not to laugh and was gesturing at me to please stop laughing...well I tried.
The good news was that finally someone came in from room management and offered us both a private room. We both did the paper work and were told if we were discharged there wouldnt be a charge as at that point we were both hopeful we could go home. And yes of course we were both discharged. I was so relieved to be going home to my own bed along with my sister who was here to help me over the weekend.
The weekend was long. I mostly slept - obviously trying to catch up but also the pain meds help. Sister made me tea and broth and jello. Brought me my meds. Went to the local natural medicine place and picked up some liquid vitamins for me as obviously I am not getting any real nutrition. Made sure I was OK. Her help is immeasurable even though I wasn't good company. She watched old movies with me and entertained our new kitten. I was sad to see her go but she had given up 4 days to stay with me and I can't say enough about that.
Both of my sons paid me a visit as well over the weekend. I was happy to see my son, my grandson and his girlfriend for about an hour on Saturday which was a good opportunity for my sister to meet the new baby (almost 5 months old now) and the girlfriend. I won't be able to pick him up for at least 6 weeks though. And my other son came at my request to change the kitty litter as I wasn't going to ask my sister to do that (no pets) and I certainly cannot. He was glad to help and also to check on me, see his aunt and see the kitten (Buddy) we adopted through him.
Recovering is taking longer than I thought. I am weaker than I expected but that is most likely from being only on clear fluids still. The pamphlet given me at the hospital stated after 4 days I could attempt the next level of liquids. Introducing milk products, pureed soups, ice cream etc. Drew stopped and picked up a bunch of stuff for me. I had some lobster bisque for dinner (1 cup) and that went down pretty good but felt heavy on my tummy. The next morning (Tuesday) I thought I would try the thin cream of wheat with some milk. That didn't go so well. Neither did the vanilla milkshake I made myself for lunch. Both didn't sit in my tummy very long. I won't go into details but vomiting was not the issue. I also felt better enough that I ventured downstairs and moved to the couch. I also decided to try going without pain meds. By 7pm though I was starting to feel very unwell and went back upstairs and to bed. Tuesday night was a long night with discomfort and my stomach making noises like I've never heard before!
Wednesday I awoke with a headache that refused to go away and an upset tummy. I decided that I would try my cream of wheat with some almond milk (to see if it was the milk I was having issues with). Unfortunately it appears that it wasnt the milk. Its semi solid food period. So for the rest of the day I returned to clear liquids, broth, tea, juice and jello. I also had what felt like severe heartburn. I tried some zantac and then later resorted to sucking on a tums which seemed to help but for a short time. This was a disappointing day and over all rough one. Obviously I "pushed" things the day before by changing my bed for the couch and moving around more (which I should be doing) and changing up my diet. I stayed in bed again all day Wed. and thought if I still had a headache and heartburn the next day (today) I would call my Dr.
Today I awoke feeling better than yesterday. While Drew had breakfast I showered and changed into a clean tshirt style dress (out of nighties). I tried again the cream of wheat (well thinned with milk) and about 1/2 way through realized that wasn't going down so good. Back to broth for lunch.
So currently I am watching tv on the couch and while I am frustrated with my progress or lack there of I have to realize that it is only the 8th day. Well 7th post surgery. That this is a pretty major surgery and there are things going on inside as well as outside that need healing. That my whole digestive system may take quite a while to adjust. My goal is that hopefully I will be able to enjoy Christmas dinner. Physically I should be recovered by then but hopefully also my system will be able to tolerate solid food by then.
I have to say that the number of people who have responded to my previous blog post as well as privately contacting me via FB message or text message has been overwhelming. I have had over 300 views of the blog post alone. It makes you realize that you touch and are touched by so many people in our life and that when you need them they are there in one capacity or another. Prayers, thoughts, words of kindness are all so appreciated and overwhelming. Thank you for being my people.
I'm heading upstairs to get some pain meds now. Love to you all.
Deb
Monday, October 22, 2018
HEY!! Yes Its Been almost a Year since you heard from Me.
This blog post is going to go back to its original intent in regards to my health. Since 2014 when I started my health journey things have changed a bit with me. Due to arthritic issues with my hip for instance, I find I am not able to run or walk up and down 175 stairs x 10. That has been difficult for me as not only did I feel so good (and strong) after, it was a huge piece of social interaction for me. I do miss it but realize that this is just not the point in my life where it needs to be important.
We have also had a wedding (April 2017) and a new grandson (May 2018). Along with my other 4 grandchildren I try to spend as much time as I can with them. I am still able to play and keep up with them for the most part so I am happy for that. I was very fortunate to spend almost 4 months up at our cottage where I kept myself busy with some jobs that needed doing. My motto has always been, get up, have coffee/breakfast and catch up with social media/news and then spend a good amount of time on my chore of the day. After a late lunch I take the time to chill down on the dock if possible and that is my reward and justification.
So life is going along pretty smoothly. I'm keeping my weight down - up and down 5 - 7 lbs or so but for the most part still manageable.
Then something weird happened.
I noticed that I was having some issues swallowing. First it was food. I assumed it was due to the fact that maybe I wasn't chewing properly or eating too fast. Food was sticking deep down in my throat. Not where I could easily dislodge it either.
Then after a period of time I noticed that water or coffee was not going down correctly. It would sit. Right there. At the point right between my breasts.
Then another thing started happening. Not only was it not going down, it was starting to come back up. Spontaneously. A simple cough and undigested food or liquids would be forcibly ejected from my throat.
What the hell was going on????
My first thought was a hiatal hernia. Thinking that my maternal grandmother had told me on the occasion of my oldest daughter's christening that she suffered from one. I thought ok that must be it. At this time we were also between GP's so I made a decision to visit a local walk in clinic.
How lucky that I chose that day. The Dr. who saw me took my symptoms seriously and prescribed a proton block inhibitor for the acid reflux I seemed to also be suffering a severe case of and booked a barium swallow test to see what was happening.
After suffering through a test to swallow what my body was not wanting to swallow I went back to the Dr. to follow up.
At this point I had started to lose weight at an alarming rate - 5lbs/week. And I was not only starving, I was becoming malnourished and dehydrated. It was a 5 hr chore to ingest an 8 oz smoothie every day.
He advised me to run to the ER and get myself hydrated (via IV). After an 8 hr stint in the ER, even though I had a pic line in, an IV was never actually started and the dr on call sent me home with the advise to sip water. To say I was upset was an understatement. I felt very unwell from lack of nourishment or liquids. However, what it did do was get me onto a fast track to have an emergency endoscopy at a private clinic affiliated with the hospital.
At the same time that was booked, an opening finally came through for me to see a GI specialist in the area with a projected appointment for MAY! This was already the beginning of February and it had been over 2 weeks since I went to the clinic the first time. I cried a bit on the phone and the secretary promised to get me an earlier appt on a cancellation basis. She advised me to still go to the endoscopy appointment and then we would have more information.
This was the first of many endoscopies for me.
The Dr. at the private clinic took me into a private booth after the procedure. I was just a bit terrified with what he was going to say. First off - its NOT cancer. He fully expected that he was going to find cancer and was happy to tell me that it was not. However, it is Dysphagia (https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028) complicated by Achalasia (https://www.healthline.com/health/achalasia). So in a nut shell - my esophagus no longer works the way it is supposed to and at the base of the esophagus is a sphincter muscle that allows food to pass into the stomach while also preventing acid from backing up into the throat, that is also not working properly. The lack of "motility" of the throat and the inability to allow food to pass makes for a quite rare condition. It may be genetic (Nan's may have actually been that). It may be an autoimmune response, it may be nerve damage, it may be all 3. Nobody knows for sure. So once I was finally able to get in and see the GI Dr (on a cancellation) just a week later, he immediately booked me into the hospital to begin a treatment. At this point I had lost 15 lbs in just over 3 weeks.
This treatment uses Botox to freeze the muscle (sphincter). After dilating the opening, Botox is injected to freeze it in an open position. This usually last 4 to 6 months. Lucky me, I was having symptoms again after 2 months. So over the next 16 months I had 6 or 7 more Botox injections and 2 more dilations. All of these are done under sedation at the hospital via an endoscope. I lose at least 1 full and sometimes up to 3 days depending on how I react to the particular sedation dosage they give me at that time. I was referred to a Thoracic surgeon to do something more permanently. Basically a myotemy (slicing open the muscle) would have to be performed to allow me to eat more or less normally.
In the meantime over that 16 months I went to my daughter's wedding in Mexico - I was at the tail end of a Botox treatment so was having issues on and off through our trip with a horrible incident occuring on the plane on our return. I started to not want to eat out or with other people. I had to eat very slowly and sometimes it would take 2 hours to eat a somewhat normal meal. In November I had 1 bite of a delicious steak my husband prepared for me at the cottage and then spent the next 5 hours unable to swallow that solitary piece and having effectively blocked my throat I was also unable to swallow my own spit. Every 15 mins or so I would have to rush to the washroom and well you can guess. I woke up 2 times in the middle of the night on other occasions choking on my own spit. I was afraid to sleep alone and if I did I slept in an almost upright position which played havoc with my back and hip. The thoracic surgeon office would not give me an appointment until I had a Motility study done. So off to yet another hospital to have a tube threaded down my nose to my stomach and then while carefully trying to swallow a liquid the tube would be pulled back up and readings would be digitally analysed. Finally I did get an appointment with the thoracic surgeon. Drew went along with me and we decided that surgery was the real only option for me at this point. But the wheels of our Health Care - while awesome and fully covered - move very slowly. The thoracic surgeon (Dr. M) wanted to perform his own exploratory endoscope! So in the meantime I was subjected again to another Botox treatment. In June I had my exploratory by Dr. M and my followup was finally booked for September. I decided I would suffer it out and not subject myself to another botox unless I had no choice. I saw Dr. M. at the appointed time Sept 22. We talked about the findings of his exploratory ( along with a weird infection for some reason that is not being treated) and he asked me to make an appt with the GI Dr. to discuss my options once again and that he felt that an operation would be the most obvious thing for me. It seems that every botox and dilation I have on my esophagus is causing scarring. Scarring means fibrous tissue which also means more difficulty with the surgery itself. Great. So NO more botox for sure til I can get in for surgery. I made an appt with the GI Dr (Dr. C) and of course that was booked for Oct 9. Once I saw him he was surprised to see that he had not in fact heard from Dr. M and had no idea what the plan was. We discussed again the surgery and the botox and the outcome was that he would do his best to get in contact with Dr M, see what his thoughts were and push for the operation. One week later, Oct 16, I heard back from Dr. C's office and she said that she had finally spoken with Dr. M's secretary and that my case was hitting urgent status and that they were on the fence about another botox as I was having severe issues again. Surprisingly this time Dr. M's office said - tell her to come in tomorrow (Thurs Oct 18) at noon and we have an opening next week.
This time things moved quick. Dr. M saw me, went over the operation again, I had spent some time researching so asked a few questions, and then just like that the surgery was booked. For Oct 24 - day after tomorrow. Surgery will be what is called a Heller Myotemy followed by a partial (180 degree) fundoplication where my stomach is cut and reattached farther up the esophagus wrapping around the just made incision/opening. This second procedure is to help prevent a lifetime of GERD or acid reflux which carries its own set of long time problems. I will also have a lifetime of screening for esophageal cancer. It is the second procedure that entails longer recuperation and diet to follow after surgery.
I had my preoperative clinic today. I saw a pharmacist, a phlebotomist (blood drawn), had an EKG, blood pressure checked, met with the anesthesiologist who went over her part of the operation and what it would entail (3 hours - General anesthetic) and then met with a nurse who went over what to expect after the operation and to provide me with any answers to questions I still had as well as take my blood pressure ( a bit elevated no kidding). She reiterated that it was a 3 hr operation, I will most likely be there overnight, I have to remove my nails (confirmed by anesthesiologist) and no makeup or jewelry.
I am now officially nervous.
One of the questions on the forms I had to fill out this morning included: Do you have - a living will, a power of attorney over health, over finances, organ donation. Makes you stop and think. I know with any operation there is always a risk. Small but there nonetheless. I am not a young woman. I have had people with losses of loved ones in our age group. I think I need to address my wishes. I feel morbid thinking about it. I have so much living left to do. I have 4 beautiful children and 5 amazing grandchildren. I have a man I love deeply. My parents are still living. I have much to live for. Positive thinking is 90% of success in anything including health. But it still made me stop and think.
And so I spoke with a good friend who is a lawyer and she suggested I make a will making my wishes known and that even in this day a handwritten will is legal. With my signature.
I don't have much in the way of earthly goods that are valuable but what I do have I don't want anyone quibbling over.
I have written things down.
I am prepared.
I removed my nails...20+ years since I have started wearing artificial nails.
I will place my rings etc. in a safe place.
I will tell everyone that I love them. That they make my life happy and worthwhile and I wouldn't trade one minute.
I kissed my grandson (4.5 months) today and told him how much Gammy loves him.
I hope I will be following up this blog post with one telling you how sore I am. Complaining about the liquid diet I will have to follow for 1 week. Followed by 4 - 6 weeks of more liquids and mooshy food.
Stay tuned.
Thanks for listening.
Debbie
We have also had a wedding (April 2017) and a new grandson (May 2018). Along with my other 4 grandchildren I try to spend as much time as I can with them. I am still able to play and keep up with them for the most part so I am happy for that. I was very fortunate to spend almost 4 months up at our cottage where I kept myself busy with some jobs that needed doing. My motto has always been, get up, have coffee/breakfast and catch up with social media/news and then spend a good amount of time on my chore of the day. After a late lunch I take the time to chill down on the dock if possible and that is my reward and justification.
So life is going along pretty smoothly. I'm keeping my weight down - up and down 5 - 7 lbs or so but for the most part still manageable.
Then something weird happened.
I noticed that I was having some issues swallowing. First it was food. I assumed it was due to the fact that maybe I wasn't chewing properly or eating too fast. Food was sticking deep down in my throat. Not where I could easily dislodge it either.
Then after a period of time I noticed that water or coffee was not going down correctly. It would sit. Right there. At the point right between my breasts.
Then another thing started happening. Not only was it not going down, it was starting to come back up. Spontaneously. A simple cough and undigested food or liquids would be forcibly ejected from my throat.
What the hell was going on????
My first thought was a hiatal hernia. Thinking that my maternal grandmother had told me on the occasion of my oldest daughter's christening that she suffered from one. I thought ok that must be it. At this time we were also between GP's so I made a decision to visit a local walk in clinic.
How lucky that I chose that day. The Dr. who saw me took my symptoms seriously and prescribed a proton block inhibitor for the acid reflux I seemed to also be suffering a severe case of and booked a barium swallow test to see what was happening.
After suffering through a test to swallow what my body was not wanting to swallow I went back to the Dr. to follow up.
At this point I had started to lose weight at an alarming rate - 5lbs/week. And I was not only starving, I was becoming malnourished and dehydrated. It was a 5 hr chore to ingest an 8 oz smoothie every day.
He advised me to run to the ER and get myself hydrated (via IV). After an 8 hr stint in the ER, even though I had a pic line in, an IV was never actually started and the dr on call sent me home with the advise to sip water. To say I was upset was an understatement. I felt very unwell from lack of nourishment or liquids. However, what it did do was get me onto a fast track to have an emergency endoscopy at a private clinic affiliated with the hospital.
At the same time that was booked, an opening finally came through for me to see a GI specialist in the area with a projected appointment for MAY! This was already the beginning of February and it had been over 2 weeks since I went to the clinic the first time. I cried a bit on the phone and the secretary promised to get me an earlier appt on a cancellation basis. She advised me to still go to the endoscopy appointment and then we would have more information.
This was the first of many endoscopies for me.
The Dr. at the private clinic took me into a private booth after the procedure. I was just a bit terrified with what he was going to say. First off - its NOT cancer. He fully expected that he was going to find cancer and was happy to tell me that it was not. However, it is Dysphagia (https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028) complicated by Achalasia (https://www.healthline.com/health/achalasia). So in a nut shell - my esophagus no longer works the way it is supposed to and at the base of the esophagus is a sphincter muscle that allows food to pass into the stomach while also preventing acid from backing up into the throat, that is also not working properly. The lack of "motility" of the throat and the inability to allow food to pass makes for a quite rare condition. It may be genetic (Nan's may have actually been that). It may be an autoimmune response, it may be nerve damage, it may be all 3. Nobody knows for sure. So once I was finally able to get in and see the GI Dr (on a cancellation) just a week later, he immediately booked me into the hospital to begin a treatment. At this point I had lost 15 lbs in just over 3 weeks.
This treatment uses Botox to freeze the muscle (sphincter). After dilating the opening, Botox is injected to freeze it in an open position. This usually last 4 to 6 months. Lucky me, I was having symptoms again after 2 months. So over the next 16 months I had 6 or 7 more Botox injections and 2 more dilations. All of these are done under sedation at the hospital via an endoscope. I lose at least 1 full and sometimes up to 3 days depending on how I react to the particular sedation dosage they give me at that time. I was referred to a Thoracic surgeon to do something more permanently. Basically a myotemy (slicing open the muscle) would have to be performed to allow me to eat more or less normally.
In the meantime over that 16 months I went to my daughter's wedding in Mexico - I was at the tail end of a Botox treatment so was having issues on and off through our trip with a horrible incident occuring on the plane on our return. I started to not want to eat out or with other people. I had to eat very slowly and sometimes it would take 2 hours to eat a somewhat normal meal. In November I had 1 bite of a delicious steak my husband prepared for me at the cottage and then spent the next 5 hours unable to swallow that solitary piece and having effectively blocked my throat I was also unable to swallow my own spit. Every 15 mins or so I would have to rush to the washroom and well you can guess. I woke up 2 times in the middle of the night on other occasions choking on my own spit. I was afraid to sleep alone and if I did I slept in an almost upright position which played havoc with my back and hip. The thoracic surgeon office would not give me an appointment until I had a Motility study done. So off to yet another hospital to have a tube threaded down my nose to my stomach and then while carefully trying to swallow a liquid the tube would be pulled back up and readings would be digitally analysed. Finally I did get an appointment with the thoracic surgeon. Drew went along with me and we decided that surgery was the real only option for me at this point. But the wheels of our Health Care - while awesome and fully covered - move very slowly. The thoracic surgeon (Dr. M) wanted to perform his own exploratory endoscope! So in the meantime I was subjected again to another Botox treatment. In June I had my exploratory by Dr. M and my followup was finally booked for September. I decided I would suffer it out and not subject myself to another botox unless I had no choice. I saw Dr. M. at the appointed time Sept 22. We talked about the findings of his exploratory ( along with a weird infection for some reason that is not being treated) and he asked me to make an appt with the GI Dr. to discuss my options once again and that he felt that an operation would be the most obvious thing for me. It seems that every botox and dilation I have on my esophagus is causing scarring. Scarring means fibrous tissue which also means more difficulty with the surgery itself. Great. So NO more botox for sure til I can get in for surgery. I made an appt with the GI Dr (Dr. C) and of course that was booked for Oct 9. Once I saw him he was surprised to see that he had not in fact heard from Dr. M and had no idea what the plan was. We discussed again the surgery and the botox and the outcome was that he would do his best to get in contact with Dr M, see what his thoughts were and push for the operation. One week later, Oct 16, I heard back from Dr. C's office and she said that she had finally spoken with Dr. M's secretary and that my case was hitting urgent status and that they were on the fence about another botox as I was having severe issues again. Surprisingly this time Dr. M's office said - tell her to come in tomorrow (Thurs Oct 18) at noon and we have an opening next week.
This time things moved quick. Dr. M saw me, went over the operation again, I had spent some time researching so asked a few questions, and then just like that the surgery was booked. For Oct 24 - day after tomorrow. Surgery will be what is called a Heller Myotemy followed by a partial (180 degree) fundoplication where my stomach is cut and reattached farther up the esophagus wrapping around the just made incision/opening. This second procedure is to help prevent a lifetime of GERD or acid reflux which carries its own set of long time problems. I will also have a lifetime of screening for esophageal cancer. It is the second procedure that entails longer recuperation and diet to follow after surgery.
I had my preoperative clinic today. I saw a pharmacist, a phlebotomist (blood drawn), had an EKG, blood pressure checked, met with the anesthesiologist who went over her part of the operation and what it would entail (3 hours - General anesthetic) and then met with a nurse who went over what to expect after the operation and to provide me with any answers to questions I still had as well as take my blood pressure ( a bit elevated no kidding). She reiterated that it was a 3 hr operation, I will most likely be there overnight, I have to remove my nails (confirmed by anesthesiologist) and no makeup or jewelry.
I am now officially nervous.
One of the questions on the forms I had to fill out this morning included: Do you have - a living will, a power of attorney over health, over finances, organ donation. Makes you stop and think. I know with any operation there is always a risk. Small but there nonetheless. I am not a young woman. I have had people with losses of loved ones in our age group. I think I need to address my wishes. I feel morbid thinking about it. I have so much living left to do. I have 4 beautiful children and 5 amazing grandchildren. I have a man I love deeply. My parents are still living. I have much to live for. Positive thinking is 90% of success in anything including health. But it still made me stop and think.
And so I spoke with a good friend who is a lawyer and she suggested I make a will making my wishes known and that even in this day a handwritten will is legal. With my signature.
I don't have much in the way of earthly goods that are valuable but what I do have I don't want anyone quibbling over.
I have written things down.
I am prepared.
I removed my nails...20+ years since I have started wearing artificial nails.
I will place my rings etc. in a safe place.
I will tell everyone that I love them. That they make my life happy and worthwhile and I wouldn't trade one minute.
I kissed my grandson (4.5 months) today and told him how much Gammy loves him.
I hope I will be following up this blog post with one telling you how sore I am. Complaining about the liquid diet I will have to follow for 1 week. Followed by 4 - 6 weeks of more liquids and mooshy food.
Stay tuned.
Thanks for listening.
Debbie
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