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airborne72's picture
airborne72
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I know we have two members (NHMIKE and DARCHER) scheduled soon for surgery, but I don't know when.  Guys, if you will, what are your scheduled dates and times?

Let us know so we can think about you and pray for you.  Believe me, it makes a difference when you know that others, who have fought and are fighting this fight, are sharing in your challenge.

Good luck my friends.

Jim

Trubrit's picture
Trubrit
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Joined: Jan 2013

I have Darcher on my calendar for November 3rd.  

Tru

Mikenh's picture
Mikenh
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Joined: Oct 2017

I'm scheduled for October 30. I will find out the time when I call on October 27. The timing determines the logistics for me as to where I will be on Sunday doing the prep.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

We all can't wait to hear your good outcomes.  Hopeful your pain & suffering will be minimal.  

Praying for minimal anxiety leading up to your surgeries too.

 

--Beth

darcher's picture
darcher
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Joined: Jun 2017

Roger that. I'm scheduled for Nov 3. 

Annabelle41415's picture
Annabelle41415
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Joined: Feb 2009

Praying for you both.  It's the wait that drives you crazy.  You just want to get it over with.  Wishing you both the best outcome.

Hugs!  Kim

Mikenh's picture
Mikenh
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Joined: Oct 2017

Less than a week away and I'll admit that I'm getting anxious. Part of it is that I haven't been working out as much (ran two miles yesterday and today). 4 miles per day and weights has me sleeping pretty soundly. Tomorrow is pre-op day and I just read that I have to bring home Clearfast bottles and that they should be refrigerated which will be a bit of a challenge for me tomorrow. I'm going to bring an Igloo Cooler with an ice pack or two to keep them cool until I can get back from Boston.

lizard44's picture
lizard44
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To both of you. Mike, I hope your pre op visit goes well tomorrow.

Grace/lizard 44

Mikenh's picture
Mikenh
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Joined: Oct 2017

I got to the hospital around 6:30 this morning (left at 5:10). I try to avoid driving into Boston these days but it feels like traffic has gotten heavier since I used to drive in from time to time. Commuters seem to be coming in earlier and earlier to decrease commuting time. I had considered taking commuter rail today but the weather is poor (rain, sometimes heavy) and I'd have a decent amount to carry.

When I came into the main entrance, I was greeted with three nurses handing out literature on informational picketing. Not the sort of thing that you want to see if you're going to have surgery soon. I checked the local news for the potential of strikes and didn't see anything. I'm sitting in the cafeteria with my laptop and will be working here for a few hours until I have to pick up a kit at the surgeon's office and then go to the pre-op appointment. I do need to figure out where the pre-op stuff is done.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Mike:

I remember reading this story to my children decades ago.  Anytime someone describes a situation similar to your's I remember it.

I am a country mouse.  But you are a city mouse and because of that I have full confidence in your ability to navigate through the maze of Boston and one of its large hospitals.

On the positive side, today's trial run will enable you to "clear a path" for next week when you are admitted.  Take good notes.

Jim

Mikenh's picture
Mikenh
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Joined: Oct 2017

Hello Jim,

I typed in the Surgeon's procedures and instructions into iCloud Notes yesterday and last week so that I have it on my computer and phone. It's also a good exercise as you actually read the directions while typing them in and it helps you to plan because there's a ton of stuff to take care of. I've arranged my ride from the hospital for next Friday to get back home. I need to arrange a dropoff of my stuff after surgery with my sister.

I'm actually a suburban mouse - I don't really like a lot of things about living in a city though I could for short periods of time. Unfortunately, a lot of suburbs become cities due to growth and that's what has happened to our area. It was pretty quiet and then development took over.

Now that you're two weeks out - I have a question for you: can you drive now? If so, which day after surgery could you drive? Same question for Beth and Grace if they want to answer.

thanks,

mike

 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

Since my apr surgery involved removing my rectum, anus, and sphincter, it left me with a very sore seat. I can't sit long enough to eat, let alone drive. I may end up eating Thanksgiving dinner standing up :-(

My first post-op visit to the surgeon is this afternoon so I should get an idea of how long the discomfort might last. I am taking a nice, soft cushion with me. :-D

Grace/lizard44

 

airborne72's picture
airborne72
Posts: 278
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Mike:

Upon discharge the only restriction regarding driving was to not do so while I was taking pain medication.  I was not prescribed any pain medication so it was a mute point.

I let my physical capability be my judge.  My motivation was to return to normalcy, and to get a book at the library that I had been anxiously awaiting for someone else to return to the files.  My surgery was on 10 October.  I was discharged on 13 October.  On 17 October I climbed up into my F-150 4X4 and headed to town!  Since then I have made three other short trips around town.

I have not experienced any reduction in my ability to safely control the vehicle (raising legs to apply brakes, vision, or even cognitive awareness).  Entering and exiting the vehicle is a slow event.  I would suspect that a protracted trip would begin to result in cumulative fatigue, but that could be alleviated with frequent pit stops, known referred to as bag stops.

Jim

Mikenh's picture
Mikenh
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Joined: Oct 2017

Thanks. That's a great data point. So does your F-150 have those huge wheels on it?

Mikenh's picture
Mikenh
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Joined: Oct 2017

Pre-Op appointment.

I went to the Surgeon's office for the bowel prep kit. The assistant looked through a container of bags with names on it and didn't find one for me. She called around and said that it was waiting for me at the Pharmacy. I went to the Pharmacy with my Igloo cooler and ice pack and they gave me a bag and I put it in the cooler. It turns out that I didn't need to bring the cooler.

Then I went to the Pre-Op area. I filled out some forms and someone came out to say that there would be delays because a lot of people were late. The weather and traffic were awful this morning (and this at 5AM - 6AM when I came in) so they were pushing appointments out by 60-90 minutes. I had my laptop so I could work so that wasn't too much of a problem but I missed an event at the office that I had wanted to attend.

They took my vitals and sent me back to the waiting room. Then the Clinical Trial people (they want me to try VNX-149 which is a non-opioid painkiller) spoke to me and I gave them my questions. While in the meeting, the doctor called me over so I had a short examination and she talked about Clearfast and chewing gum. She gave me two bottles of Clearfast which is a carbohydrate drink that you take at 2 and 3 hours before surgery. They found that having carbs in your digestive system gets the bowels working or something and that this can cut days to weeks off a hospital stay for this stuff. I think that you guys already know about chewing gum though I'll have to supply it myself.

The IV nurse (that's the term 30 years ago) came and took 10 tubes of blood. 6 for the surgery, 4 for the clinical trial. I was a little worried that I wouldn't be able to walk out of there but it was drawn with a minimum of pain and discomfort.

Then I spoke to the Ostomy Nurse and this took the longest and she went over the bag, how it's attached, when it's changed, insurance coverage, ileostomy vs colostomy, vendors for the products, the visiting nurse stuff, diet, exercise, activity, intimate relations (not really an issue while I'm on chemo which will be for a while), clothes, air travel, cleaning, etc. Then she marked two spots on my abdomen for the surgeon and covered these with clear tape. She gave me spares in case the tape came off and some of the ink washed off. She gave me a rather large packet with suppliers for ostomy products. BTW, I asked what they cost and she said $200-$300 for a month's supply for ileostomy. More for Colostomy as you need more product.

She also gave me a bottle of some stuff that I'm supposed to shower with for the three days leading up to the surgery. This is supposed to help prevent stuff during surgery including MRSA. So it's kind of like antibiotics for your skin. It's supposed to be applied with a face cloth or small towel.

It looks like the day before the surgery will be quite busy doing the surgeon's prep (colonoscopy-style), Clearfast (called ERAS process), and the stuff for cleaning the skin. So I have the narrative version of what you guys are going through right now. I've kind of noticed that there aren't a lot of details about the ostomy products discussed here but it may be that it's discussed in far more detail at Ostomy forums, which the Ostomy nurse mentioned.

So I need to set up a timeline to do all of this stuff or just put it in my electronic calendar. I've been typing all of the pre-surgery documents into iCloud Notes so that I have it on my PC and phone and so that I can send it to my wife so that she knows what I'm facing. I didn't get a chance to ask them about personal items so I'm going to call admitting to ask them. Hopefully they know or can point me to who knows. What would be cool is if there were lockers in the lobby.

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Mike:

My truck does not have big tires on it, but all pickup trucks now have 17 inch rims and that makes it a high step for me on a good day.  I had developed a simple hop to get my right butt cheek on the seat, but that can't currently be performed so I slide in like an OLD person.

I am clueless about your chewing gum comment.  Please elaborate.

You are correct in that there appears to be minimal discussion of ostomies on this forum.  Probably lots of reasons but I will speculate about two.  Adjusting to one requires time, energy, and patience.  In addition, it is really personal.  Therefore, my guess is that we (me for sure) would rather talk about anything else in the world.  Other sites are specifically targeted for ostomy discussions.

Jim

 

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Chewing gum helps to get the digestive process going again after surgery. I've seen a couple of posts where a nurse recommended it or someone on the forum recommended it to get things flowing after surgery.

I agree that this stuff is pretty personal and that one of the big reasons why Ostomy nurses are generally well regarded as they deal with a very personal and difficult subject with a fair amount of grace and matter-of-factness.

 

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Mike:

No one mentioned to me anything about chewing gum immediately after surgery.  First I have heard of that trick.  I'll remember that when I have my reversal surgery.  Perhaps even share it with my surgeon.  Ha!

The primary reason I was asking about the chewing gum was because I have read in more than one ileostomy instruction sheet that both chewing gum and sucking through a straw increases the amount of air we swallow, thus impacting the bag.  I am beginning to take everything with a grain of salt when it comes to do this and don't do that ileostomy guidance.

On a different note, I will be interested in your experience with the experimental non opioid pain medication.  Last resort, you can always just chew on a nail, but remember to spit out your gum first.

Jim

Annabelle41415's picture
Annabelle41415
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Not a good idea at first.  It can really mess up the process of the digestive system and you don't want to do that.  Wait until they give you the go ahead.  Right away is not good.  They wouldn't let me do it for at least 4 days.  I'd ask after a couple days but not right after.  Be careful but do know that it did help.

Kim

Hope4LRC
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Joined: Aug 2017

Best of luck to both of you. Hoping for speedy recovery and home to your families soon. 

Mikenh's picture
Mikenh
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Joined: Oct 2017

Jim asaked about the clinical trial for the non-opiod pain med that I will be on. The pain med is VVN-149 which was developed by a South Korean company with a US doctor. The government has provided funding for them along with a South Korean incubator. The drug works by decreasing Glycin and Seratonin signals along the spine - basically decreasing pain neurotransmitters. They did Phase I on volunteers and Phase II on either GI or CRC patients post surgery and this trial is during surgery. They've already had 48 patients in the current phase and the trials are being done at Mass General and Brigham and Women's. I talked to the doctor running the trial and he provided far more information than the clinician. He mentioned that they were considering making an oral form of the drug in two years. There is obviously a lot of demand for these kinds of drugs and I think that there are about 5-7 of them in trials. I do not know if this drug would be suitable for regular pain management or not and they might not know yet either.

Mikenh's picture
Mikenh
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Life Extension Magazine: Preventing Surgery-Induced Cancer Metastasis December 2009

http://www.lifeextension.com/Magazine/2009/12/Preventing-Surgery-Induced-Cancer-Metastasis/Page-01

If I had it to over again, I would have asked my surgeon about getting a prescription for Tagamet (I have known about this for a while but didn't get to it). Doing things remotely has its disadvantages. That article was from a while ago and I think that best surgical practices have improved quite a bit since then.

My notes on using Hibiclens:

 

I did the Hibiclens and it was a little trickier than I thought it would be. I did read the directions but my conclusion is that you need to make sure that you have several complete changes of clean clothes that completely cover you from the neck down (for sleeping and maybe daywear). Then you also need a bunch of towels and/or facecloths.

And you need some flexibility and/or some core strength or someone to help you apply the stuff as you have to apply a quarter-sized spot on the facecloth all over your body. The back may be a hard area to get to and it may be tricky doing the legs as you either have to lift the legs or bend down to do them or some combination of both. I assume that you get better at the process as you keep doing it (a total of four times). My wife prepared a bed with clean sheets and I'll be sleeping in that bed for the next two nights. I'll be at the hotel for the third night and they should provide clean sheets. The directions state only clean sheets on the third night.

 

Mikenh's picture
Mikenh
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Joined: Oct 2017

In Admitting waiting to be seen. I stopped by last night to find it and they indicated that there’s usually a big line at 5:30 for 7:30 surgeries so I got here at 5:00.  We’ve also had some bad weather in the Northeast, in the form of wind and rain and I don’t know if that’s a factor for teams coming to work or patients getting into the hospital. It’s quiet in the streets right now and the wind has died down. I plan to turn off the phone and hand it in when I get called to give up my things.

airborne72's picture
airborne72
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Mike:

We are all thinking about and praying for you.  Now is the time to totally trust in others.  You have done all you can do to prepare for this moment.

See you on the other side, my friend.

Jim

Trubrit's picture
Trubrit
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Joined: Jan 2013

And awaiting your update when you are feeling up to it. 

Tru

blessed39's picture
blessed39
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Joined: Dec 2016

Dear Mike, The guy I am praying to has answered many of my prayers and

I know he will do the same for you. All you have to do is take a small step of faith and believe

he can and will do it for you. Please read my story on my blog entitled "How I Beat Stage Four

Colon Cancer." God bless you and yours      blessed39

Mikenh's picture
Mikenh
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back

lizard44's picture
lizard44
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Double post.

lizard44's picture
lizard44
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Joined: Apr 2015

Good to hear from you. Let us know how it went and how you're doing when you feel up to it.

Grace/lizard44

 

Trubrit's picture
Trubrit
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Joined: Jan 2013

Thank you for taking the time. Now go heal, and we'll be here when you return. 

Tru

airborne72's picture
airborne72
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Good to hear from you.  Catch your breath and rest, as best you can.  And, keep a watchful eye out for the nurse who may want to give you a blood thinner injection - in the stomach.

Inevitably, just as soon as I found a comfortable position and tried to mentally escape from the confines of a hospital bed the nurse would come in a jab me in the stomach, which renewed my pain cycle.  Oh well, pain is inconvenient while blood clots are life threatening.

We are all anxious to hear your story Mike.  Glad you made it through.

Jim

lizard44's picture
lizard44
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I don't know whether the heparin they used on me was bovine or porcine derived, but as often as they jabbed me I was half afraid I'd be mooing or oinking before they discharged me Wink

Mikenh's picture
Mikenh
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I showed the nurse your posts and he chuckled but said that he didn’t eat pork and I said that I didn’t as well. So he is getting me the bovine tomorrow. He injects it n the thigh.

darcher's picture
darcher
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Hope all went well.  We're praying for a good result.

Annabelle41415's picture
Annabelle41415
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Mike - Praying that all went well.  Looking forward to you coming back to the boards and letting us know how you are doing.

Kim

Mikenh's picture
Mikenh
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I have a lot to write but I’m not doing it on a phone. I’ll try to write something on my laptop tomorrow when I get out of bed. Weather  had an effect on the timing. Pain level in recovery was high but unrelated to surgery. It was an old back injury that was fixed by a folded towel. Pain was otherwise zero until anesthesia wore off and was a two earlier and now one to two.  I haven’t tried getting out of bed though. I also don’t have my phone back yet so I’m using an old iPhone with no open to type. I don’t feel like talking that much because of the tube that was in.

airborne72's picture
airborne72
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Congratulations Mike.  You have successfully made it through the longest day.  Sleep tonight and then renew your efforts to communicate tomorrow.

Jim

Mikenh's picture
Mikenh
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Darcher should start cranking things up today. The runway on this process can take your mind off the surgery.

BRHMichigan's picture
BRHMichigan
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Have been thinking of and praying for you, Mike.  Look forward to hearing more from you as you are able.  The non-opioid pain meds sound very promising.  

As for ostomies...I could discuss all day long.  LOL.  Was my biggest fear and is now more of a 'friend.'  I just hate that it compounds are cancer experience.  As if we don't have enough to deal with.

Take care and hope the nurses are taking great care of you.

--Beth

Mikenh's picture
Mikenh
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Thanks for your prayers. The list can be long here. I spoke to the surgeon and it was difficult but successful. She seems to be a rockstar here as a lot of people appare work for her. Regional lymph nodes out to pathology and they were labeled suspicious so we’ll know for sure but possibility of Stage2. Ive learned not to get your hopes up in this game though. I’m not up to using the laptop. I picked up my bag and shouldn’t have as it was about 20 pounds. I was offered oxicodone and took Tylenol. Pain can be bad when I move and especially cough. I want to write but it’s difficult.

lizard44's picture
lizard44
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or even laugh hard, hug a pillow to your belly. It really did help me.

Mikenh's picture
Mikenh
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The nurse last night told me this but I have to remind myself to do this.

Kmessier's picture
Kmessier
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Congratulations Mike sorry I didn't see this before Ulysses that pillow when you sneeze or cough that helped me a lot. My prayers and thoughts are with you both. 

~~ Kim

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Ruthmomto4
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i feel terrible I have not wished you well, I am very relieved it went well and the nasty storm we had (I am in CT) didn't cause an issue. Please try and take it easy, and know we are all thinking of you!!

Mikenh's picture
Mikenh
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No worries, Ruth. I understand we’re all here for each other and we all have stuff to deal with. One of my friends had a tree fall on his roof on Monday. Fortunately there was no damage but he couldn’t check it out in the dark so he moved to another part of his house. He called a tree service and they used a big winch to remove it. It was somewhat costly. Weather has been a bit crazy this year.

Cindy225's picture
Cindy225
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Mike - Great you're out of surgery and on the mend! Such a major shock to your body. No lifting anything heavier than a milk jug, twisting your torso or sitting straight up. I did a lot of slow rolling out of the bed. Hang in there with the Tylenol.  Worked for me. Also, large lidocaine patches were somewhat soothing. Great to get in a chair as difficult as it is.  Sooner start doing the hospital shuffle with the catheter/IV in the hallways the better and sooner you'll go home.  Good luck waiting for the pathology report.  My surgery was Thanksgiving week so I left the hospital before actually getting them. Keep in mind, no core work-outs for a long, long, long time.  Still advised not to do them yet. (Also, had ileostomy and reversal.) After 8 weeks did get OK to gradually start running (even with chemo).  Such a slog but almost a year later and happy to say getting my running swag back and finished 5K on Saturday placing third in my age group. Patience, patience, patience...first start with the hospital shuffle. 

Cindy

darcher's picture
darcher
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Tomorrow (Thursday)  is the day before the big show.  Been doing the build up drinking the potions they gave but tomorrow (actually today) no food and just the bowl prep for clean out. To say I'm  nervous would be an understatement. This ls the almost final act so to speak. I don't feel much beyond still being forgetful and on edge.  Would you believe I'm still trying to maintain a level of denial.  Weird but that's what it feels like since I'm not in bad shape otherwise and am trying to pretend it doesn't exist. I can feel it a little bit and the bathroom trips are self evident but otherwise I don't look it. I hope this is an indication I'll zip through it without a problem.  I've even put on a few pounds and am borderline outside the range normal BMI (Ie, getting fat, lol)  I'm going in 6:30 Friday morning.  They moved it up 2 hours which is fine since I won't have to battle morning traffic.  Not sure if I'm driving myself in or not being we've got 2 crumb crunchers that need to be in school at 8. 

Mikenh's picture
Mikenh
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We’ve been where you are now and your feelings are normal from my perspective. The forgetful and anxious part is normal because you have weights on your mind and all kinds of random thoughts can flow in. I had a bit of time where I said I feel pretty good right now: do I really need surgery?

I put on about 12 pounds in the honeymoon period starting with a vacation at the beginning of October. I’m normally quite careful with my weight but I wanted to relax given the ordeal of chemo and radiation. I don’t recall who coined the term honeymoon period (probably Jim) but I thought that it was an odd term when he mentioned it and then thought it appropriate after I went through it. I asked for a scale about ten minutes ago and they have this cool, mobile electronic scale and it indicated that I’ve dropped about six pounds in the past couple of days. I think that’s normal as well as the body doesn’t seem to want to eat a lot after surgery. You can feel hungry and your eyes can look at the menu wanting to order half of it but your body will tell you that it doesn’t want to eat a lot. So I expect to lose a few more pounds before leaving. I think that adding some weight is beneficial before surgery unless you are obese and the guy in the picture looks actually underweight. I think that you may know that people that are overweight (based on BMI) are less likely to die within 30 days of surgery than those that are normal to underweight (BMI < 23). It’s easy to find research on it if not.

So I wouldn’t sweat the weight. I think that you have the background of being active so that you can lose unwanted weight or replace fat with muscle when you have the time and energy.

I had a lot of people cheering me on for surgery and it’s a nice feeling to help combat the negative thoughts. You have the same cheering section + 1. We’ve all been on this runway and step-by-step, you get closer to the operation, then they put you to sleep and you wake up on the other side.

The doctor’s day resident came in to talk to me and he said, “Were going to take good care of you.” I said that I’ve run into a lot of people that have had this surgery. There is always the risk of death in surgery but I don’t know anyone that’s died. He said the same thing - which is probably a good indicator as he does these on a regular basis.

I can tell you that you shouldn’t worry but lots of people told me that before surgery and, of course, you worry, even when you try not to. But people telling you that may decrease the worry just a little bit each time and that can help.

I would have someone bring me in if I had the choice as it’s one fewer thing to have to worry about when there’s a lot on your mind and a schedule of things that you have to take care of before you get to Admitting.

I made out a lot of checklists, timelines and notes to keep me on track as you may be thinking about a lot of different things and it was helpful. I’m sure that you’re using the methods that are best for you. Feel free to chime in with random thoughts or questions.

We all want a successful outcome.

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