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Update: Pending Major Surgery

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Posted 9/22/2015 11:45 PM (GMT 0)
Good luck David,
Hoping this will sort some of the issues at least,
Mike
Posted 9/23/2015 6:42 AM (GMT 0)
All I can say, is wow. Just came back to check, and so many well wishing and thoughtful posts. Thank you one and all.

For my good, and for the good of my family, I will man up and go through with this, on the chance that I can regain some semblance of quality of life, in my life. Last 5 plus years have been a living hell for me, with one unanswered problems after the next.

Barb: thanks so much, don't worry, no giving up on my end, glad you are still in the thick of your own fight, and still fighting hard.

I have to meet with surgical team Friday morning, then off to pre-op at the hospital. I spoke to the head of my oncology rehab unit today, and she was thrilled that I was given this particular surgeon. She said, if Dr. says he found something, then he found something, and that if he said he can fix it, he will fix it. Said he had an outstanding reputation, to both patients and medical staff. Very skilled and well loved.

I put up with too much b/s from too many less than stellar doctors past couple of years, and I had enough, so that is why I demanded another opinion. So glad I did. Spent most of today with severe stomach area pain, and for the 2nd time in a week, starting to get all blocked up again. I can't wait to have this fixed, October 1st can't come soon enough for this guy
Posted 9/23/2015 1:30 PM (GMT 0)
Purg, I can't tell you how glad I was to learn that someone has finally diagnosed the root cause of many of your problems. I'm sorry you'll have to endure more surgery, but I hope a greatly improved QOL will be in your future.
Posted 9/23/2015 4:20 PM (GMT 0)
David
darned Intestines!! Like my son, born with a blockage, intestines were shriviling inside him, could not pass waste. He almost did not survive his first year. Lets get ready to rumble with that Doctor to get everything back in order for you! Been following your Journey, you have been through more than seems possible, always with your head up, though you may not think it, you are a definition of courage to me. Through it all, you have extended yourself, giving time and efforts to others here at HW all the while, in responses to our stories even though you are mired in troubles most of us can't imagine. I deeply convey my empathy to you, sending prayers your way, sending Hope also. Although it is as you say extensive major surgery, I know you will be in good hands of what sounds like a great Doctor, but remember, and I know that you know, there is our Great Physician, and He will care for you throughout.
Keep the Faith. We will talk to you after. Things are going to get better, I claim that ahead of time!
Dan in So Calif.

Post Edited (Wings of Eagles) : 9/23/2015 10:01:57 PM (GMT-6)

Posted 9/23/2015 4:43 PM (GMT 0)
david,
harold is doing well so i rarely come here any more.
but since i did, i want to wish the best in the whole world for you.
may you and your wife have many more cruises together.
best wishes and prayers sent your way.
viv
Posted 9/23/2015 11:43 PM (GMT 0)
thank you all. appreciate your extra words, wings.

we may go to Bermuda next year, they started cruises out of Charleston to there. after 3 trips to the Bahamas, kind of burned out. we enjoyed the "sea" days more than being in the ports. it was a real chill out trip this time, but still excessive walking and climbing stairs/steps, despite elevators. just the nature of being on a ship.

had a mini blockage going on this afternoon, but it resolved partially on its own, I am tired of the anxiety over these events, I never know if the next one is going to be the big one.
Posted 9/25/2015 12:11 AM (GMT 0)
Update: 9-24

Upcoming surgery starting to sound all too real. I meet with Surgeon in the morning at 10, then off to the Hospital for a lengthy pre-op.

Was at the VA today for 3 hours. 2 hours on the chair with the dentist. My dentures are worthless, now in a trash can. It was not my imagination, they did not fit properly. Dentist tried for 1 hour to file them down, trim, etc., but no go. As I told her, the uppers were way too wide for my mouth, and the teeth on them way too long.

Just so happened, the head dental surgeon from Columbia was in the Greenville office, and he was called in. He called the dentist to the side and gave her holy hell. He was the radiation expert that I met with prior to the dental surgery and hyperbaric treatments I went through last year. It took me nearly a year to get these dentures if you all remember.

Long story short. Spent another hour getting new and correct impressions made. Have to go back tomorrow for another 90 minutes in the chair. Said due to their mistake, they will expidite the new ones. But it will still take a min. of 8 weeks to get them! So much for the speedy VA system.

Nothing for me ever goes normal or easy or regular, always has to be "issues". Don't know why?

As I get closer to the surgery, some fear is sinking in. Yes, been there, done this before, but still scary, as this will be a fairly complex and risky surgery. But I know if I have any hopes of improving my miserable quality of life, I am still stepping up to the plate. I have so much to do before surgery, so it will be a busy time between now and then.

Thanks again for the great support. Sorry I haven't been able to spend as much time helping others in recent months, I will pay that back when I can, have had so much on my place.

P.S. One good benefit of my massive weight loss. Surgeon said it will make their job easier, last major abdominal surgery - I was nearly 100 lbs. heavier. Said my weight before may have played into surgical access problems. Have heard other surgeons talking about that with heavy patients. So skinny now, that won't be a problem hopefully.

Post Edited (Purgatory) : 9/24/2015 6:14:54 PM (GMT-6)

Posted 9/25/2015 12:14 AM (GMT 0)
Good luck David, I hope everything works out well for you, and you can get back to some much deserved semblance of a normal life
Posted 9/25/2015 3:02 PM (GMT 0)
David,
I'm relieved that they may have discovered the major reason for so many of your difficulties, and hopeful that this new Doctor is the answer to all our prayers for you. The obvious question I have is are there competent Doctors in South Carolina? I know we all have our fair share of bad Doc's, you seem to have found most of them in SC.
Trying to leave tomorrow for OBX, if the road doesn't wash out, but will keep checking back to watch for your posting some GOOD NEWS! Keeping you in my prayers.

Kerry
Posted 9/25/2015 3:04 PM (GMT 0)
you're still in my prayers.

Andrew
Posted 9/25/2015 3:20 PM (GMT 0)
Prayers for you my brother. Sounds like you are due some good karma.

Jordan
Posted 9/25/2015 11:28 PM (GMT 0)
Thank you, my friends and comrades at HW PC.

Shortest pre-op I have even been through. about 30 minutes. Considering how many ops I have had at this hospital and I was just there in July, they basically had all they needed to know about me.

Had a good meeting with surgeon earlier, and with his nurse. I am his only surgery that day, he said it might be as little as 2 1/2 hours, or as much as 10 hours, so the day is reserved for me. Going to be tough day. Will be fasting all next Wednesday, getting cleaned out of course. Surgery set for 0730 Thursday, but have to be there at 0530. Once they put me under, I won't care of course.

Family members will be taking turns watching over me in the evenings once I am back home. Doctor stressed again, min. of 1 week in hospital, perhaps more. I intend to do whatever he asks. Want to do this right. Since my wife doesn't leave for work until 2 PM, she will be around during the night and mornings for me while I am recovering. One of my daughter in laws is a great RN, so she will be handy..

The surgeon, and my uro surgeon, have nixed the idea of going after my bladder. He said it would be a brutal surgery at best, with major blood loss, and a 50/50 mortality rate. Basically what the head of urology told me at MUSC a few years back. I am stuck with a bad bladder. He said, if it ever turns to cancer, there would nothing that could be done, because it wouldn't/couldn't be detected until it was Stage IV and spreading to other organs. At that point he said, the risk of surgery would be even greater. Have to pray that my over-radiated bladder never turns to cancer.

So much on my brain at the moment. I will be happy (I hope) when I am on the "other side" of this. The surgeon still stresses this will be a major surgery, and he intends to take his sweet time and do t he best he can, and take care of whatever he finds inside me, including previous adhesions and scar tissue.

I pushed him on the incision size, and he backed away, he implied it will be a very wide cut, as he has to have total access, and there's a lot of "guts" in the way, and he has to work around the Urostomy plumbing my urologist put into place, that a normal person wouldn't have place. Will have stents in the kidney tubes (ureters?). They will slowly fall out of the stoma in 2-4 weeks on their own, but make keeping the Urostomy device harder to stay in place and 100% water tight. Will have to hook up large catheter bag throughout the recovery period as well. Oh, the good old days.

But, at least this is a very positive step, he did connect many of the elusive dots together, way more than any of the other useless doctors and specialists I have seen the past 2-3 years. For that, I am thankful. And hopeful for any kind of improvement in the future. He can't guarantee my a thing, but I believe he is skilled enough to give me my best shot. All I can ask for, the rest is in His hands regardless.
Posted 9/26/2015 1:31 AM (GMT 0)
Well, almost that time, David!

Bad news: major surgery!

But even better news: a chance that it might actually help, maybe even a lot, with that crapty QOL you have been battling due to complications to (botched?) treatments! yeah

God bless you brother, praying that you will have an even better than expected outcome! And praying extraordinary skill + luck (we always said it was better to be lucky than good smilewinkgrin ) for your surgeons, anesthesia folks and nurses!

And BTW, yes, fat helps nothing during surgery nor anesthesia, speaking as one retired from 36 years in the OR, and it can increase the struggle. So your Docs can celebrate your skinny self!

Bill
Posted 9/26/2015 1:49 AM (GMT 0)
David, you are amazing....You have endured so much....But this one looks well thought out and planned. Hang in there, You will be fine..BEST of luck to you !
Posted 9/26/2015 2:18 AM (GMT 0)
Thanks guy. Won't lie, a little scared. But feel very sure of this surgeon's expertise. Every time his name has been mentioned, its only of praise. The nurse that did my pre-op, said this doctor literally saved her husband's life last year. She said I couldn't be in better hands.

From doing some research, looks like a 6-8" incision will be needed. The other complication for surgery will be the existing Urostomy plumbing, surgeon said its actually in his way, as opposed to normal. Also, he's expecting excessive scarring from the radiation damage previously, so he will have work around and through that as well.

Typical day today, have dull stomach pains since I woke up. When I have eaten, immediate distress. Dr. said I was a walking time bomb, said both he and his nurse were sincerely worried for me when I was on the cruise. Told him about my close call on the ship, we were all thankful that it resolved itself, though painfully, on its own. Said it was pure luck. I was about 150 miles off the coast of FL at the time. Had I been single, I would have cancelled the trip. But didn't want to disappoint the wife.

Weird to think, this time next week, will be my 2nd day in the hospital, hopefully through the worse of this. Dr. said first 3 months will be tough, but by month 6, should be in pretty good shape, and by the 1 year mark, should be back to hopefully a better "normal". After all I have endured, sounds good to me.
Posted 9/26/2015 2:39 AM (GMT 0)
David, I have said it many times...but my prayers are with you. And I hope this time next week you are posting about a successful surgery. Good luck!!
Jim
Posted 9/26/2015 2:47 AM (GMT 0)
Jim, doubtful I will be in right mind and body to update that soon, will try to see if I can get wifey to post a simple post surgery update on my behalf. She's on the shy side, so I can't promise. But if nothing else, perhaps I could text someone soon after surgery, will have my phone. If anyone wants to volunteer to receive and share the report, please e-mail me for an exchange of numbers. I'm game.
Posted 9/26/2015 3:31 AM (GMT 0)
David, I'd be glad to do the update, but I got a new computer and apparently lost your email. If you have mine, please contact me. Prayers continue
Posted 9/26/2015 4:58 AM (GMT 0)
thanks worried. my e-mail is still open here, drop me a quick line, I have so many hundreds of e-mail addys on board, not sure which is yours anymore. will accept your gracious offer
Posted 9/26/2015 5:29 AM (GMT 0)
You have my heartfelt prayers, and many well wishes.
Posted 9/27/2015 2:47 AM (GMT 0)
thanks, chart.

and to barb: keep hanging in there, you are one amazing woman, I could never compare or compete with your horrific journey with all you have endured over the years. My own journey pales compared to yours. Just remember our "never give up" pact, I won't - for your sake, if nothing else.

Lot of general stomach pain, still very tender on the lower left side, below my ribs, even my own finger pressure over that area makes me cringe. Hoping that will be a thing of the past once I recover from the pending surgery. Got all my prep stuff ready, I will be spending all Wednesday, no food, and doing a major colon cleansing, lol. Least its with Miralax and Gatorade, not that nasty Go-Lightly routine. Only have to down 64 oz. of liquid. Either way, will be afraid to be away from the throne that day.

We will have to leave the house Thursday morning at 0500, and unthinkable time in my world, as I normally never get to sleep until 0330-0400 in the morning. I may not even bother trying to sleep the night before. Once they put me under, I won't know or care about anything in the world. I am one that has never minded being put under. Only way I can experience a totally pain free existence, at least until I come to in the recovery room. That part can or can not be a scary experience.

But the hospital I use, once again, was voted the best patient care in the entire state, and was in the top 20 hospital list of the entire USA. It's the only hospital in my region that I would consent to have this done in.
Posted 9/27/2015 1:14 PM (GMT 0)
David, I know how difficult this journey has been for you. We are praying for positive results and a vastly improved quality of life. It sounds like you have an excellent doctor and hospital. I hope your wife will be able to get back to us. So many people care about you!

Hugs,
Aimzee & Ron
Posted 9/27/2015 1:44 PM (GMT 0)
I echo Aimzee's comments, this has been such a tough journey and there so many people here who are hoping and praying that things go well for you.

It is great that so many people think this surgeon is very competent. After so many years of bad doctors it is good that you have a good one on your side.

It is not long till you have your surgery and I hope for a good recovery.

Best wishes to you,
An
Posted 9/27/2015 2:46 PM (GMT 0)
An38:

I was going to email you, but your email is not active.

If you get a chance, send me an email and I'll respond to that.

Mel
Posted 9/28/2015 1:28 AM (GMT 0)
Thank you An and Aimzee. Hope Ron is doing well still, havent' been around long enough lately to know his status.

I did a lot of due diligence on this pending surgery. The hospital was a given, always highly rated, lowest infection rates, highest patient satisfaction, etc. As many surgeries, big and small I have had there, wouldn't consider going anywhere else.

The doctor part, after getting a 3rd professional opinion, plus a lot of online reading from his patients, plus all the random great remarks I have been told by his "fans", feel pretty good about him.

It's rare to find the skilled doctor, who also has the right mix of empathy (real kind) and bed side manner. Plus his 35 years bodes well with me, I like a well seasoned surgeon. Plus, he was very well versed on severe radiation damaged patients, which isn't easy to find.
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