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GregJ’s Journey - To Infinity And Beyond!

User
Posted 07 Jul 2023 at 21:16

Thanks JedSee

Ive got what looks like clots coming down the tube tonight. I just pray that there aren’t more further up that could block the catheter again. 
i can’t face another 6 hour wait in A&E again 

How the medical staff in A&E cope I have no idea. So busy it’s just pure bedlam everywhere. The urology surgeon said he would not want anybody touching the catheter in A&E as they may do more damage and make things worse but I really won’t have a choice if anything happens over the weekend. 🙏🏻 🙏🏻

Tuesday can’t come soon enough. I’ve just emptied the bag and drinking as usual, waiting for the bag to fill again so I know it’s draining properly. 

Please …. Please don’t let anything else go wrong before Tuesday. 🥹🥲

User
Posted 07 Jul 2023 at 23:35

Greg, I have a permanent suprapubic catheter and find I drain better when I am laying down. Keep up the water intake,in this hot weather urine output can go down. You probably don't need telling this but make sure the leg bag is below the bladder and the night bag is below the leg bag. Make sure there are no kinks and ideally the night bag should be supported on a stand.

Thanks Chris 

User
Posted 08 Jul 2023 at 07:04

I meant to say JedSee

What a sod catching covid in between must have been for you.

That’s been in the back of my mind over the past week, after so many hospital visits and sitting with a lot of people in A&E a few times.
I had all my toes crossed 😁 when I was there as I think catching covid would be the last straw! 

Cheers

Greg. 

User
Posted 08 Jul 2023 at 07:11

Thanks Chris

The hospital did explain the heights to me before I first left. Reminds me of helping my dad fix very old cars when I was a kid, syphoning fuel off in order to work on them. He had quite a few mouthfuls of petrol over the years 😊

I don’t fancy doing that with my bag of course. Gulp. 

I’m drinking about 6 pints of water through the day and a couple of cups of tea so I hope that’s enough?

My night bag was absolutely brim full this morning so I’m guessing it’s ok. 

A permanent catheter is floating around in the back of my mind, after all the blood and clots that have passed in this past week.

How do you find living with that?

Does it affect your quality of life?

I just love knowing all the facts before I go into anything…just in case. Boy Scout n’all that 😊

Cheers

Greg  

 

Edited by member 08 Jul 2023 at 07:12  | Reason: Not specified

User
Posted 08 Jul 2023 at 08:00

Another thing I noticed is that my urine is often extremely dark and concentrated , despite only drinking water and 1 or 2 cups of decaf tea a day. 

I showed it to the urologist and urology surgeon and they did not seem concerned about it. 
It just seems too dark, at times, to me. 

Anybody else experience this?

Thanks

Greg  

 

 

User
Posted 08 Jul 2023 at 08:25

Greg, you don't need to be thinking of long term catheters just yet , in a few weeks things will have settled down and your will be back to your new normal. 

Catheter bags have changed since I started this journey over nine years ago, back then the bags didn't have an anti back flow arrangement. If the catheter blocked up you could lift the bag above the height of the bladder and urine would help move a blockage, probably not a good idea but it worked for me.

The permanent SPC does affect my QOL but it's amazing how we humans can adapt to a new normal. I much preferred carrying my urine inside my body rather than in a bag on my leg. Your comment got my brain whirring, I do miss just getting up and having a good long pee. One advantage of ED is not having to try and aim that upright morning glory down into the toilet bowl. 😃. 

I like to know facts and data, I like to know where I am heading , even if it isn't a good place to go.

Hopefully the catheter removal we be straight forward but ,be prepared for the possibility it might have to be in a bit longer. If it does stop in a bit longer you won't be getting up in the night to go for a pee. 

My overnight urine production varies from 300 to 1500 mls the lower the volume the darker it is. 

Thanks Chris 

 

 

User
Posted 08 Jul 2023 at 08:50

Thanks for all your insights Chris. 
They’re really helpful, even to know that I’m not on my own and otters have got through complications and are on the other side 😊

My heart rate is still a concern. My resting heart rate is 80 now and when I stand up to walk around the house and garden it goes to 114. I have an appointment with my GP next week to discuss. I am still slightly anemic I know so I’m concentrating heavily on raiding my iron levels. It can take 2-3 months to recover from anemia so it’s head down and bash on with that one. 

I’m due in the hospital on Tuesday for removal but if I still have blood and clots moving down the tube I’m going to call them on Monday to discuss. I will ask if the surgeon can be present when I go so I can explain directly to him what has been happening over the past 10 days. 

Fingers crossed everything goes smoothly. 

I’ve not started my Tadalafil 5mg properly yet, which I’m also a little concerned about as I should have had a week under my belt by now. The urologists and surgeons didn’t think it was a good idea until the catheter is removed and there is evidence of good healing taking place. I’m just putting all my faith in their expertise and praying for the best outcome. 

Thanks again for all your input it really is appreciated. 
Take care

Greg. 

User
Posted 08 Jul 2023 at 09:29
The tadalafil is not essential and therefore the least of your problems- don't worry about it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2023 at 09:32

Cheers Lyn 😊

User
Posted 08 Jul 2023 at 19:07

For goodness sake! 
I don’t think I can handle anymore of this. 

More blood down the tube tonight and the bag is very very slow to drain. 

Shall I just wait to see what happens? 

I can see me sitting in A&E for another 6 hours tonight. 
Never pigging ending. 🥹🥲

User
Posted 08 Jul 2023 at 20:46

Hi GregJ,

So sorry to hear of your ongoing problems.  I know that it's easy for me to say this, but I do believe that it will get better, and probably quite soon.  Try to hang on in there.  Try to do anything you can to distract your mind while the medics sort it out.  We are all rooting for you.

Take good care of yourself.

JedSee.

User
Posted 08 Jul 2023 at 20:52

Thank you JedSee

I hope and pray 🙏🏻 🙏🏻

Thank you

Greg

User
Posted 08 Jul 2023 at 20:53

Keep Strong and Positive Greg, you can get through this💪💪💪

Derek

User
Posted 08 Jul 2023 at 21:00

Thanks Derek

Tuesday just cannot come soon enough. 
I really want to be back in the operating hospital to speak to surgeon and his team and try get things sorted once and for all. 

It’s do difficult being 2 hours away when they won’t really allow my local hospital to do anything major to sort my issues. 
I feel really helpless at the moment. 

Seeing the blood and the clots still coming down the tube, 10 days after the surgery is just so worrying. I dread to think what’s going on in the bladder!

I hate wishing my life away but roll on Tuesday

Thank you very much for everyone’s support 

Take care

Greg. 

User
Posted 08 Jul 2023 at 22:43

Hi GregJ,

I had a blood drain and stayed in an extra day because it was still filling the bag more than I liked.  They decided to remove it after day 2 even though it was still bleeding a bit.  Then there were clots and occasional rose coming down the catheter for a few days.   I also had 28 days of coagulant injections.

You have a worry about a blocked catheter so you're drinking 6 pints of water and cups of tea and having anti-coagulant.  I wondered if you're drinking too much and it's not allowing it to heal, although there's a risk of being too dry. 

I don't know how much you're moving but a catheter has a balloon inside that can knock on the bladder and cause bleeding from the wound.  You might look that up but I made a note of it when I had a catheter some 6yrs ago.

As for using Taladifil until you're sorted I'd forget it in your position.

On the bruising I had a full depth skin graft and one section of it started going black, this is 12 years ago.  I asked the hospital and a nurse from the surgical team looked at it and said it will be alright.  It was, but it took longer to heal than the rest.

I guess you're sure it isn't the co-agulant injections that are creating the bruising.   If they're done wrongly they bruise.  The surgery itself can cause it.

I wonder if you're taking photos of all this as it can be useful to see if it's healing and re-assuring when good changes start.   I hope the above isn't too obvious.  All the best Peter

User
Posted 09 Jul 2023 at 07:22

Thank you Peter

They removed my blood drain on the second day too, after it had been emptied twice since the op. It was still bleeding but they didn’t seem concerned, despite me showing the bruising on the second day.

I know the bruising is just superficial but it would have been an indicator as to how heavily I was bleeding internally! I wish it was checked sooner. 

When I say bruising I mean seriously major bruising, not just the kind you get at an injection site. The main one is on my RH side and is about 1 foot in length and around 10 inches high. It wraps right around my side. Another is on the LH side and is about 6 inches by 3 inches. More on my front around the camera hole near belly button around 4 inches by 2 inches. 

They all went completely black by the third day. When I was readmitted for the blood transfusion the nurses were coming in the room and asking to see the bruises as they hadn’t seen anything like it before. I should have been charging per view 😁

I am not on the anticoagulant injections. They were stopped by day 4 as it was thought that they were worsening or even causing the internal bleeding. 

I am moving as much as I can, to prevent any DVT or clotting. The first few days movement was extremely difficult and painful, I have to say it has improved now though I’m still completely exhausted and have quite a lot of pain in my abdominal region. I’m told this will continue for weeks until the hematoma has been absorbed by my body. 

I bought an Apple Watch to monitor my heart as since the bleed and the anemia my heart jumps 30 BPM just standing up. I’m also using it to track my steps and I did 3100 slow and gentle steps yesterday, just around the house and my small garden for some fresh air. I’ve no idea if this is enough steps or too many steps but it feels about the right balance of movement given my seriously low energy levels since the op. 

I’m hoping to be able to discuss all of this with the hospital on Tuesday when I go to hopefully have the bag removed. 

I did wonder if I was drinking too much. I’m drinking around 3 litres a day. I told one of the nurses this and she said that’s fine but mix it up with water, tea and fruit juice. I just have 2 cups of tea in the morning then just water the rest of the day. I could honestly murder a pint. 

I just pray that everything start to resolve itself slowly but surely and that these past days are forgotten in 6 months time when I’m striding naked down the beach! 😂

I’m counting the minutes until Tuesday 🤞🤞

Take care

Greg. 

Edited by member 09 Jul 2023 at 07:39  | Reason: Typo

User
Posted 09 Jul 2023 at 09:23

I’m not sure about the ‘striding down the beach Naked’ Greg, unless you’re heading to Fuerteventura where anything goes. If so, I will see you there in 6 months(or before) and we’ll have a drink or three together💪💪💪

Derek.

User
Posted 09 Jul 2023 at 09:41

Haha cheers Derek 🍺🍺

I don’t think me walking down the beach naked would do anybody any good …. Especially the onlookers! 😂

User
Posted 09 Jul 2023 at 09:45

This morning’s woes are something new!

The main wound above my navel has opened up through the night and has become quite “gooey” and wept!

It is also quite painful now too. 

I’ve just spoken to the sister on the operating ward and I’ve sent a photo for her to discuss with a doctor. 
May have to see a local out of hours doctor where I live as the operating hospital is 2 hours away. 

Oh joy of joys … it’s the gift that just keeps on giving. 

Cheers

Greg. 

User
Posted 09 Jul 2023 at 20:54

Well, another 6 hours in A&E. Wound cleaned and dressed and to keep an eye on it. 
It wasn’t fresh blood it’s back pressure from the internal bleed weeping through part of the wound that had opened up a little. 

You actually couldn’t make this up. Somebody pinch me to see if I’m dreaming! 🙈

 

 
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