Author Topic: CAPTAIN CARL UPDATE.... (Read 8568 times)

CaptCarl · « **on:** July 06, 2011, 03:27:22 am »

Hello everyone here at the Forums. I wanted to give an update as to what's going on with me, as well as an apology for letting things languish and not doing it sooner. So firstly, to the apology:

I am sorry that it has taken as long as it has to get this out there. I know that a lot of people here have been worried about me. My partner Norm was keeping things updated through Dennis, but after a few days of that, things got so overwhelming that he couldn't keep up with all the updates to all the different people, the meetings with the doctors, hospital, family, etc, etc. I for my part was completely unable to help due to circumstances beyond my control (basically my mind had turned to a bowl of pudding, and I had the cognitive skills of such). It has taken quite a bit of time to be able to converse with people again, and even longer to figure out the little mysteries in life like how to use a cell phone or make the computer do anything more complicated than turn on. It is coming back to me finally, though I still can be completely befuddled by a clock from time to time. Typing on the computer also takes an enormous amount of time and concentration. What I have typed so far has taken close to an hour already. Even so, I woud like very much to apologize to all the people who wished me well, then were left hanging. I am sorry.

You have the basics of my trips to the hospital: Blood clot in one lung, suspected cancer in the other, and a return of the liver cancer for which I had a transplant almost three years ago. Everything happened so fast and went downhill so quickly. I was initially in the hospital for 2 weeks then sent home, but the fevers were constant, between 102-104, and I was still losing weight. When I first went in I weighed about 162 pounds, when I was admitted the second time, I was down to 138. The had to put a feeding tube in. Things went downhill fast fro there. They went to do a lung biopsy, but the sacs around the lungs were completely filled with fluid. I had a really vicious case of pneumonia that was taking me down hard, and when combined with the blood clot left me with almost no lung capacity whatsoever. I also started retaining water to the point that I now weigh a bit over 100 pounds MORE than I did when I checked into the hospital for the second time. Mostly from the abdomen down. Walking can be difficult due to the fact that one of the places I retained water is in my testicles which are now swollen to the point that they completely surround my dick, and make peeing something of an ordeal. The swelling is finally coming down, but I still need to carry "the boys" in my hands to prevent the pain from having all that weight pulling down. I have jury rigged a truss type arrangement so I can go for walks and not draw attention to myself.

The liver cancer had caused the ammonia levels in my body to skyrocket almost overnight. This is what caused the cognitive issues. I spent about two weeks with this being to the point of almost being completely gone on any thought process/ability to communicate level. It was like being underwater, and being able to see the surface. You could see what was going on, see what others were doing, and to a small degree understand how it all pertained to you, but be completely incapable of being able to become a part of it. Every once in awhile, for a few minutes, or maybe even an hour or so, you'd rise to the surface and be completely lucid. Enjoy a little conversation with your partner or a nurse. But eventually though, you'd go back down into the water. The hardest part was that you knew that something was wrong, that you had it in you to be normal. But you just couldn't figure out how to make it happen, where the blockage was that was preventing you from being a regular person. There was nothing you could do about it. Meanwhile, the fevers are still tearing you up, you're still in really bad shape, and during one of your lucid moments, you hear a doctor tell your partner that you only have 1-3 days left, and because it's a lucid moment, you know exactly what that means. The only thing I could think was that the 1-3 days couldn't pass quickly enough for me

It was about then that the decision was made to take me off of all of my meds, and to transfer me to Hospice. The moved me here a bit over a week ago. I guess that the change of environment, combined with the ceasing of all meds did the trick, because I have gotten better a bit every day. Things have progressed to the point that they will actually be sending me home at the end of the week. I'm a bit hesitant about this, but they will be assisting with home hospice visits, as well as housekeeping visits several time a week. I don't want Norm killing himself trying to take care of me, and won't go home unless he has plenty of back-up.

Sorry that it got so long, but there was a lot to tell. Again, I want to thank everyone here that showed their support when the shit was hitting the fan. Every contact from you guys helped me to get through it a little easier. And to all of you I am Thankful.

Carl

komnaes · « **Reply #1 on:** July 06, 2011, 03:43:23 am »

Nothing much to add that hasn't already been said, Capt.

You know we love you.. and here's one BIG cyberhug.

And don't scare the nurses and other patients by the way...

Shaun

spacebarsux · « **Reply #2 on:** July 06, 2011, 04:08:22 am »

I have been following your threads Capt.

Life is just so unfair sometimes. You're in my thoughts.

Best.

hope4love · « **Reply #3 on:** July 06, 2011, 04:44:01 am »

Hi Captain,

Nice to see you back and thanks for sharing your update and writing this patiently though it took a lot of time. I am sure you will be fine. It's lesson for all of us that things can go wrong and how we can cope with the situations and make right choices at right time. Hugs!

H4L

anniebc · « **Reply #4 on:** July 06, 2011, 05:52:56 am »

In my thoughts and heart as always, will be in touch when you get home to Norm and your babies.

Aroha
Jan

GSOgymrat · « **Reply #5 on:** July 06, 2011, 06:48:43 am »

You are such a fighter. I hope you continue to improve and that you are able to be comfortable at home. You are in my thoughts.

Ford

wolfter · « **Reply #6 on:** July 06, 2011, 07:28:36 am »

Am so pleased to hear the positive turn of events. Continue to improve and know you're in our hearts.

Greg

BT65 · « **Reply #7 on:** July 06, 2011, 07:40:46 am »

Carl, I've said it a lot, and I"ll continue to-I love you (and Norm). I'll be calling in a few days, and hopefully things will be more settled at the homestead. I'm sure your kids are going to be overjoyed to see you. I wish you nothing but peace, and as little pain as possible.

bocker3 · « **Reply #8 on:** July 06, 2011, 07:46:23 am »

You truly are an incredibly strong person. Am sending positive thoughts your way.

Hugs,
Mike

Buckmark · « **Reply #9 on:** July 06, 2011, 09:22:14 am »

I'm so happy to hear from you, Carl, and I'm amazed at how resilient and strong you are.

Hugs,

Henry

Jeff G · « **Reply #10 on:** July 06, 2011, 09:39:01 am »

You are an inspiration Carl . BIG HUG .

AlanBama · « **Reply #11 on:** July 06, 2011, 10:34:48 am »

So glad to read this post, Carl. All that fluid retention sounds horrible, and I'm sure is very painful.

As always, keeping you in my thoughts and prayers....Keep posting when you feel up to it; some of us will treasure these posts in a very personal way.

Love & hugs,

Alan

sharkdiver · « **Reply #12 on:** July 06, 2011, 12:03:11 pm »

love you!

Sharkie

bear60 · « **Reply #13 on:** July 06, 2011, 12:33:39 pm »

Thanks for the update, Carl. Big (((((HUGS)))))))

leatherman · « **Reply #14 on:** July 06, 2011, 12:40:41 pm »

much love and big hugs to you and Norm.

karry · « **Reply #15 on:** July 06, 2011, 05:25:23 pm »

Happy to hear from you Carl! Thanks for sharing with us despite the enormouse effort you must make to update us on your condition. You are so strong! Keep it up!
Best wishes and luts of hugs to you!
Karry

Lou-ah-vull · « **Reply #16 on:** July 06, 2011, 05:37:52 pm »

Sending you encouragement! It is so thoughtful of you to take precious time and effort to write us....no doubt your extraordinary experience will encourage others facing their own "ordeals." Your friends here will continue to keep you in their thoughts and prayers and delight in any opportunity to hear from you.

Gary

drewm · « **Reply #17 on:** July 06, 2011, 06:02:12 pm »

(((((HUGS))))))

and

KISSES!!!!!

Joe K · « **Reply #18 on:** July 06, 2011, 06:41:44 pm »

You never have to apologize for taking care of you and Norm. We want you to be selfish, so you will get better and come back when you are able.

Carl, you are one incredible human being. Thank you for making us a part of your life.

OneTampa · « **Reply #19 on:** July 06, 2011, 08:30:27 pm »

Carl,

It is wonderful to get an update from you in your own hand.

I wish you the absolute best and continued improvement.

Take care!

emeraldize · « **Reply #20 on:** July 06, 2011, 11:26:27 pm »

One of the best parts of this post is the fact that you wrote it.

CaptCarl · « **Reply #21 on:** July 07, 2011, 12:58:28 am »

Thanks everyone. Getting ready for my last night here before heading home in the AM. Got everything ready to go, computer being the last thing. I figured I'd crank out a response since from here on out since they'll be short. When I did the main one, I started it as a document, typed a little, saved what I did, then kept chipping away at it. I wound up working in it for a few minutes here, a few minutes there, over the course of a few days. Made it a lot easier. Tine to turn in. Have a good night all...

CaptCarl

Ann · « **Reply #22 on:** July 07, 2011, 09:34:40 am »

Dearest Carl, I hope everything goes well for you in your move back home. I bet the boys will be thrilled to have you home - and Norm too, of course. You're all in my thoughts every day.

Hugs and love,
Ann
xxx

aztecan · « **Reply #23 on:** July 07, 2011, 10:14:13 am »

Hey Carl,

Just letting you know you are in my thoughts and prayers and I am still sending you and Norm lots of energy for strength.

I will remember you at full moon.

HUGS,

Mark

David_CA · « **Reply #24 on:** July 07, 2011, 02:53:15 pm »

Thanks for taking the time for the update. You are an amazing man and are still in our thoughts and prayers.

David

northernguy · « **Reply #25 on:** July 07, 2011, 04:41:29 pm »

Sending you a hug from Canada.

CaptCarl · « **Reply #26 on:** July 09, 2011, 10:10:30 pm »

Thanks for all the support everyone. The latest round is that I was cleared to come home the day defore yesterday. As intimidating as it's all been, it does feel good to be home and sleeping in my own bed/recliner. I am glad that I stood my ground about not having a hospital bed brought to the house, I would never use it, and it would be taking up a huge amount of room in the living room. Now I just have to make some sort of daily schedule to learn to stick to and work around, otherwise it would be really easy to sleep all day and night. The mobility problem I have is being exacerbated by the fact the Norm broke his foot the day before I came home.

We must present quite the sight to see out in public....

CaptCarl

drewm · « **Reply #27 on:** July 09, 2011, 11:39:09 pm »

Kiss Norm for me

Glad you are home....

HUGS N KISSES ((((((((HUGS))))))))

Jeff G · « **Reply #28 on:** July 10, 2011, 01:21:09 am »

Im happy to hear you are safe at home . Thinking of you everyday . BIG HUG .

OneTampa · « **Reply #29 on:** July 10, 2011, 03:08:13 pm »

Carl,

Good to hear the latest from you.

Continue improvement and wishing Norm fast healing from his broken foot.

Take care.

weasel · « **Reply #30 on:** July 11, 2011, 12:06:45 am »

I hope your doing better

weasel

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Author Topic: CAPTAIN CARL UPDATE.... (Read 8568 times)