Dire Straits (and not the musical kind)

[Sugarlump]

Am back in Addenbrookes
My 5 month old graft has failed. Repair or replacement looks unlikely.
My veins are so small my options are limited.To give up my last resort dominant right arm or
to consider a leg. Awaiting graft surgeon tomorrow to decide what next....

It took 4 attempts and many lines before I got a successful fistula which lasted 16 months.

Looking back on my 11 year dialysis career and 2 failed transplants I do not understand why I am so unlucky?

In less than 8 weeks I am supposed to be getting married in a beautiful pink dress. To enjoy my perfect day.To be able to dance. go on honeymoon .

And here I am, another temporary groin line and I despair.... how much more will I put my body through?

[talker]

Were that I could 'wave' the magic wand and make all events in your life, once again beautiful.

In my moments of sadness, and seemingly trite are reflection upon:

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

Prayers for the best outcome are sent.

[Deanne]

I'm so sorry! I can't imagine the level of despair, fear, and frustration you're probably experiencing.

[Michael Murphy]

I hope this turns around for you.  You clearly are one of the good people who deserve better. I will add you to my prayers.

[willowtreewren]

Awwww, Sugar!

I, too, wish there were a magic wand. I would be waving it furiously! Hang in there. I'll be keeping you in my thoughts. 

 

Aleta

[kristina]

I am very sorry Sugar that you feel like this and I do hope
the graft-surgeon comes up with some good & positive ideas tomorrow  ...
... I also hope for you to wear your beautiful pink dress in eight weeks time
and enjoy your very special day ...   
Best wishes from Kristina.

[MooseMom]

Good luck as well as bad luck is just random.  I wish it were otherwise.

I am very sad to hear about your graft problems.  I hope this is all resolved very soon and that you can get on with things that bring joy, like getting married, wearing a beautiful pink dress and going on a fabulous honeymoon.

[okarol]

  {{hugs}}
Yes, it just doesn't make sense who will have a lasting transplant and who will not.
Same with your access. Crazy.
Best wishes for a beautiful wedding day. 

[Charlie B53]

Sad that you have to go through all this.  Nothing I can do but maybe try a small bit of thoughts.

The body is a marvelous machine.  The blood system changes to accommodate and adjust to the regular stresses we place on it.  Regular exercise develops muscle, but what most do not realize is the blood vessels FEEDING those muscles also undergo some change, enlarging so to be capable of the increased flow necessary to feed those muscles during their prolonged exertion.  It may be possible to enlarge vessels in the arm to make them more suitable for use by the vascular surgeon through daily, as in morning, noon, and night, light exercise of the arm and hand.  I am NOT talking about lifting massive weights.  Simple range of motion, very light weights of only one or two pounds, one of the soft 'tension release' squeezie balls,  but try to increase the repetitions.  None of that ten and done stuff.  You are looking at 100 at a time.  And you will not be able to do it,  at first.  This will take time.  Weeks.

Run this idea by your vascular surgeon, see what he thinks.  You may have to have a temp access put in while you develop your arteries and veins sufficiently for the surgeon to say that they are well enough to use.

NEVER give up Hope.  There IS always a way.  The difficult part is finding it.  Once the plan is found and laid out, just stick to it and get it done.

I hope this is of some help.

Take Care,

Charlie B

[PrimeTimer]

So SORRY you are going through all this!
A pink dress sounds real nice, I had dreams of peach... Your fiance probably doesn't care what color you wear, so long as you have your day. Talker and CharlieB53 both make very good points, good advice. Or you could do what it says under Cassandra's avatar: "when all else fails run in circles, shout loudly". I like that and if you must cuss, make sure someone hears it! 

If you want a good laugh, just google "ugly wedding dresses". There are some real doozies.

[galvo]

Nothing to offer but best wishes, 'lumpy, me old mate! But I'm sending you plenty of them!

[Sugarlump]

Thank you all for your support. It means a lot to be able to share my feelings.
Today I had a tunnelled femoral groin line put in ( I hate them ) and that went well but tomorrow they are going to attempt a fistula in my ankle/ lower leg!!
My arm graft was totally unsalvageable...
Hoping to get home tomorrow afternoon after a little dialysis on new line and a brief course of instruction for Drew not that it is a lot different. My grandsons christening is on Sunday I desperately don't want to miss.
I had a long conversation with surgeon to try and get him to look at it from a non medical viewpoint but one of maintaining as much normality in my life as possible and working around home dialysis, the christening, our wedding in 7 weeks time and the honeymoon.
Otherwise just doing medical stuff to prolong life with no quality is pointless...
I haven't given up the fight yet and they are hopeful about leg veins being bigger than my arm ones so fingers crossed.

[Michael Murphy]

It's good to hear positives.  I hope the fistula in your leg works well for you. Two chairs down from me is a patient with a leg fistula she wears sweats with zippers she has placed to help the techs set her up.  I have always been jealous of her having two hands available for use during dialysis.  It also sounds like your personal life is going well.  I feel like going out and doing a good deed so I could send the karma points to you since you seem to really deserve them.

[Sugarlump]

     
Am home. A bit battered and bruised.
I have a working tunnelled femoral line for immediate dialysis.
I have a fistula created just above my ankle. Stiff and unable to walk on it which is a bit tricky.
But good to be home.
Determined to make my cheese straws (sitting down) and attend Jacob's christening on Sunday (probably sitting down too!!!)

The Sugarlump lives to fight another day.
(Enjoying a small plate of hot chips with salt and vnegar as a treat 

[kristina]

Well done Sugar!
There was no doubt that you you would get through this with flying colours
because you are an indestructable original fighter ! Well done !
I send you my best wishes and good luck from Kristina. 

[MooseMom]

I had a long conversation with surgeon to try and get him to look at it from a non medical viewpoint but one of maintaining as much normality in my life as possible and working around home dialysis, the christening, our wedding in 7 weeks time and the honeymoon.

What did the surgeon have to say during this conversation?

I confess that I'd never heard of a fistula created around the ankle.  I would love to learn more about how this would work, so please post more about it once it has matured and is working. 

Take care and have a great weekend.  Sounds like you'll be busy!

[Michael Murphy]

It's nice when the good guys or gals  win

[Zach]

(Enjoying a small plate of hot chips with salt and vinegar as a treat 

Excellent!
 

[galvo]

Chippies!!!!!

[Sugarlump]

I had a long conversation with surgeon to try and get him to look at it from a non medical viewpoint but one of maintaining as much normality in my life as possible and working around home dialysis, the christening, our wedding in 7 weeks time and the honeymoon.

What did the surgeon have to say during this conversation?

I confess that I'd never heard of a fistula created around the ankle.  I would love to learn more about how this would work, so please post more about it once it has matured and is working. 

Take care and have a great weekend.  Sounds like you'll be busy!

I do have an excellent Scottish specialist surgeon who only does the tricky stuff.
But he listens.
His preferred option would have been my other arm but I prefer to retain use of arm and also conscious of fact it took 4 attempts to get a working one in the left arm.
Foot fistulas aren't that common (had about 5 students watching) but we do have bigger veins in our lower leg.
Just have to pray it matures and functions well.
When they put in my tunneled line (at the groin) he altered where the working ends would come out so it won't show under my wedding dress!
I think having this kind of discussion reminds him that I am human first, patient second.
If I am going to trundle along with years of tricky dialysis it has to mean quality of life is still important!!!!

When bandage comes off I will post a pic of the ankle is is very different to an arm fistula!! The op was fine (under local) and apart from putting the local in, I didn't feel a thing and it only took an hour.
The surgeon believes there are always options ...

[cassandra]

Oh Sugar, sorry I missed this, but sooo great it's now sorted, and that your surgeon listened, is fantastic.

Lots of love, healing vibes, and luck, Cas