So what would you do

[cassandra]

Hi all, I stayed last week in hosp for intra venous antibiotics, and some more tests (the now pretty big wound on old fistula arm had become infected, and grew some more in size) As soon as the cannula was out of my leg (only reasonable vein) I went home. They (intervention radiologist, and vascular surgeon (super surgeon  ) don't know how to proceed as they'd overlooked my central stenosis. I actually had forgotten about that too, as : I just didn't want to know, and I expected it to be in my file (fair enough there's a lot of files with my name on it, and they're spread over quite a few hospitals)


Today I heard in clinic that the planned surgery this Friday is not going ahead. They want to think over, and discuss the situation a bit more. And do some more scans etc.


However in the mean time I've lost so much weight (not good really) and with the 3 or 4 hrs I could remove more fluids, so my old arm is slightly more usable so I reckon I can start dialyzing at home again next week 


Love y'all, Cas

[MooseMom]

I see you're still going through the wars.  Ugh.  Good grief!

I'm glad to hear, though, that you may be able to start D at home again soon.  There's that silver lining.

 

[cassandra]

Thanx MM , I agree with that. I also started using manuka honey on the wound, and the neph actually agreed (because he doesn’t know what else to do I suppose)




   



 

[PrimeTimer]

Sorry to hear about your recent hospital stay, Cas. Hope you are feeling better being at home. I haven't used Manuka Honey before so personally do not know if it works but if it helps (and not hurt or makes things worse) then I'd be all for it. Especially if it is the medical-grade kind. Guess it has to be special ordered. I'd also be cautious about any Hydrogen Peroxide in it -hubby's Endocrinologist said HP can kill skin cells. Anyway, I could see how Manuka Honey could help heal wounds. I was recently interested in it because of a wound from cellulitis still weeping. I might bring up the honey with my doctor. I use to have an old friend of the family that was 100% Lakota Indian. He was a Marine Biologist and my former track coach. A wise old man that respected modern medicine and mother earth. He passed many years ago but if he was still around I'd surely be asking him these days about Manuka Honey and other natural salves used to treat wounds. Please let us know how it goes for you. I imagine it doesn't burn or sting but I am concerned about the allergy part because I do have an allergy to bees. Good luck with the new fistula and heal as best as you can. Picture yourself healing and then go for it. Take care! 

[kickingandscreaming]

I used manuka honey for a wound several years ago.  Turns out I was allergic to the honey so had to stop.

[cassandra]

Thanx my friends for all your well wishes and warnings. The wound looks a bit better and hurts a bit less too, so I will continue with both. I alternate the honey with silver dressings.


After my latest appointment with the transplant/vascular/Super Surgeon I left slightly confused. Apparently my very swollen old’e fistula arm cannot be closed off until the central stenosis has been ‘resolved’.


In’98 when it was first noticed there was no possibility to operate on it without causing another stenosis by the scarring of that operation. The then vasc.surgen agreed that that would be a pointless exercise. So I forgot about it, and so did everybody else. But Supersurgeon says that it’s this very Central Stenosis that’s causing the swelling in the old’e fistula arm, and will cause problems in the new fistula at some point.


So he has spoken with some intervention radiologist in London who will have a look at my next CT scans from my whole upper body as he’s “very interested” in opening that stenosis with intervention radiology.


So I feel: fad up with all the procedures still coming up, grateful that SuperSurgeon discussed ‘my’ case with ‘other Learned Ones’ . And incredibly tired.


And on the other bright side I can needle myself again as I lost 15 kilo’s (with the lactose/milk intolerans s...t) so my arm is less swollen so I can bent it enough to stick the needles in my new fistula. It does mean that I’m now officially underweight. I had to buy new bra’s and knickers which would normally make me happy, but operations or procedures and being underweight is not a good combo.


Thanx for reading, love y’all 

[UkrainianTracksuit]

Cassandra, you are such a warrior (though I don't like that word) and have strength that put so many to shame. Sending all the best wishes I can muster for the future! 

[kickingandscreaming]

I'm sorry things are so hard right now.  I hope you have clear sailing soon.

[PrimeTimer]

I hope they can look at your CT scans and let you know the game plan soon. It's the waiting and fear of the unknown that can sometimes cause us the most anxiety. Glad you are able to needle yourself again. You can look at that as success and one that you can now control. Every little bit helps! Believe me! I also think the manuko honey and silver dressings are a good idea (again, think self-empowerment). Any little strength and success we have along the way makes us stronger and aids in recovery. Of course, you already know this. I just want to cheer you along and say "keep up the good work, girl!"

 

[Blake nighsonger]

Hi cassandra, just wanted to say hello!! ... take care   thanks ---
 

[MooseMom]

So NOT a good reason for some retail therapy, cass!  I'm glad you've been able to find a few silver linings, though.

[cassandra]

Thanx for the well wishes dear friend


      


Love y’all, Cas

[cassandra]

Well what a long 6 months ago with an up-date. In that time I had some plasties on the new fistula, and SuperSurgeon ‘found’ a radiologist from London who was prepared to try a ‘semi closure on my olde fistula to reduce the hypertension (which caused the enormous swelling) It worked. He used some ‘plugs’ to reduce the flow from the fistula. He placed them in and around the anastemosis (connection between the vein and artery. It went well.


After 2 months my arm was nearly normal,  that olde fistula still works, but feels like a ‘normal’ fistula. The wound has healed completely!!! It’s still black though, but I can use it nearly as a normal arm. Still using the new fistula (which still lives on a planet of its own (as in: most days I can get the needles in, but no 2 days can I stick the venous needle in the same direction, or debt or within an hour) nothing to do with how I hold my arm, or with or without a tourniquet) just different each time.


 


But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.


 

[PrimeTimer]

So very glad to hear this, Cassandra! Always a good day when someone has won a battle but especially good when it is you. You hung in there and now it's better for you. We can all use the positive inspiration you share with us, thank you! I wish you continued "wins" for the new year!   

[jambo101]

how about switching from fistula to perma cath?

[MooseMom]

Oh man, what a story!   SuperSurgeon came through for you again by finding SuperRadiologist!

I can't imagine having to wear clothes so many sizes bigger just because of your arm.  That must have been incredibly annoying.

I'm very happy that things are approaching "normal" for you.  You deserve a boring life for a while!

[cassandra]

Thanx my friends 

[PrimeTimer]

Oh man, what a story!   SuperSurgeon came through for you again by finding SuperRadiologist!

I can't imagine having to wear clothes so many sizes bigger just because of your arm.  That must have been incredibly annoying.

I'm very happy that things are approaching "normal" for you.  You deserve a boring life for a while!

That's what I tell people....a boring life would be good. Real good. Just some peace and quiet. They don't get it.   

[enginist]

I had sepsis then.

A nasty illness that I've seen mentioned only once or twice on this site.

[MooseMom]

PrimeTimer, boredom is underrated!  LOL! 

[MooseMom]

I had sepsis then.

A nasty illness that I've seen mentioned only once or twice on this site.

Both of my parents died of sepsis.  It was truly dreadful, horrible.  My father died quickly, but my mother hung on for two terrifying weeks.

[MooseMom]

But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.


 

I'll be very interested to hear when you get back to these activities.  When your arm was is such bad shape, could you not embroider simply because of the swelling, or did it just hurt?

[cassandra]

But I’m so happy, so glad I can use my arm again, wear clothes in my size in stead of 3 sizes larger to fit my arm in. Glad I kept all my ‘redundant’ clothes too. Maybe next week I’ll give embroidery a go, maybe knitting some months later.


 

I'll be very interested to hear when you get back to these activities.  When your arm was is such bad shape, could you not embroider simply because of the swelling, or did it just hurt?

My arm was so swollen that I couldn’t bend it, and the open wound in the nape just made bending that arm impossible. Of course I’ll keep you informed 

[kitkatz]

Glad things are on the upswing for you Cassandra.   

[MooseMom]

My arm was so swollen that I couldn’t bend it, and the open wound in the nape just made bending that arm impossible. Of course I’ll keep you informed 

That sounds really unbelievable.  It must have made everyday chores almost impossible.