hello from the other side

[nightwalker]

Hello from the other side- quick intro " my story" . It was in 1996 that I received a swift round house to the flank in martial arts class. After excruciating pain beyond the normal sparring injuries, I admitted myself to the ER only to find out that I was missing a right kidney, and that my left kidney was obstructed via UPJ. Emergency stint placed, 6 months later, I had a pyeoplasty procedure that seemed to do the trick until last year.

Fast forward to 2015, aching flank pain brought me back to the ER with uncontrollable high blood pressure. Urologist placed another stint and scheduled placement of nephrostomy tube ( I wouldn't wish that stupid thing on anybody,  btw) ....2016 brought the removal of the nephrostomy tube with a new ureter re-implant surgery to relive the back-flow of hydronephrosis. Another failed surgery procedure and kidney progressively failing beyond any other surgeries-

GFR is currently at 9 and has been declining at a steady pace. Time to find a kidney donor the Dr. says to me in January of this year. My dearest sister was basically approved to donate her kidney up until last week the hospital ran one more routine urine test only to find blood in her urine. The team of Dr's  performed a biopsy on her kidney. Test came back positive for "thin basement membrane" which is basically benign, however it excludes her from donating so that was the end of that.....

Plan  A above is now off the table, so it's now time to plan for plan B, or more appropriately plan "D".

Dr.  is advising that I meet with a vascular surgeon this week to map out the best spot for an AV Graft.

I've been skulking around this site for some time,  so I thought the timing was appropriate to join the IHD network

Thank you for all of your wisdom and support-

[MooseMom]

Are you an Adele fan?  LOL!

Welcome to the site.  There are many people here who will be offering a lot of support and wisdom.

[kickingandscreaming]

That's quite a story, Nightwalker.  Welcome to IHD.  Sorry you have to be here. But glad that there's a "here" for you to be.

[cassandra]

Welcome to the site nightwalker

   


Take care, Cas

[Michael Murphy]

Welcome, sorry you need to join but glad you did, I bounced around at about a gfr 8 for about 2 years before I started my life on dialysis.  I am a firm believer that you start on how you feel not what the numbers say.  If you feel good wait I personally made my doctors nuts by telling them I was waiting for a sign from God.  What I didn't tell them was I thought a sign from God was a symptom.  The doctors thought I was nuts but I felt I didn't start too soon or too late.

[Charlie B53]

Welcome to IHD.  I'm glad you found us, but saddened how you can to be here from an injury.

How is your diet?   Have you changed to a more 'renal friendly' diet that puts less load on your damaged kidney?

Others here are far more versed in this area.  You may find lots of postings in the diet and foods area, also searching for 'renal friendly diet'.

Hemo, huh?  Are you aware of PD?   Home Hemo?  There are many advantages/disadvantages of each.  Hopefully your Neph has given your the option, or spelled out with sufficient clarity which he/she recommends in your case.

Kidney College has a lot of information laid out in 'courses' designed to teach us about our kidneys, some of what goes wrong, the different methods of Dialysis and what each involve.  It is great to gain a far better understanding of what is happening, and why.

Transplant can be a Godsend, for some.  Some of us are pretty much barred due to other medical issues.   Dialysis can be taylored and work very well.

Wishing you well.   Take Care,

Charlie B53

[Simon Dog]

Are you really going to start with a graft, or did they mean fistula?

[SooMK]

Welcome!

[Xplantdad]

Glad to have you as part of the group-please keep us updated on your status...

[nightwalker]

Thank you all so much for the overwhelming kindness and support!! I”ve already learned so much from this site.

 @ michaelmurphy were you worried that the day would come where it would be an emergency and you weren’t properly prepared, ie fistula, and would have to do an emergency catheter.  I’m trying to avoid a heart catheter at all costs. Relatively speaking, I feel well, so If I could hover around 9 gfr for 2 years that would be awesome.  Unfortunately I’m on a steady decline and have been losing about 2 points every month w/ BUN and creatine steadily climbing. @ Charlie b53 thanks for the shout out. Yes, I work as an aquatic therapist so I need to be able to get in the swimming pool to work with clients. I’ve been told Hemo has the best chance of allowing me to keep working. Peritoneal is not swimming pool friendly as I’m sure you know. I have the Renal diet cookbook and my wife is a wonderful cook. I’ll check out the Kidney College, sounds interesting….@ simondog  I am starting with an AV fistula graft. They will use the synthetic material to tie my artery and vein together instead of marrying them together with a “normal” fistula…. I weighed the pros and cons of each, and my Neph thinks the graft is the way to go. Still not sure where the access site is going to be though. I’ve heard it can be fused together near the femoral artery. I wonder if ayone has success with access here.   I’m sure there are many different opinions in this matter and I’d love to hear them. Thanks again all. ☺

[Rerun]

Glad you made it on the site!

      

Rerun

[DayaraLee]

So sorry that the transplant plan isn't going to work out! Perhaps there will be another available to you sometime in the future (plans for listing, or another living donor?). Until then, this is a great place to ask and answer questions and get some great support.   

[kristina]

Hello nightwalker
and welcome to IHD... those work-ups for transplants can be live-savers and can also be very illuminating!
My husband wanted me to have one of his kidneys, had his work-up and was diagnosed with cancer - just in time to be operated on and treated successfully...
I hope things go well for you and I send you my best wishes from Kristina.

[Michelle2016]

To: nightwalker:

I really like your job as an aquatic therapist. For last two years, I have started to have joint pains all over my body. I couldn't walk to much. Recently, I am so happy to find out that swimming and hot spa are very good for me to exercises and relax. I go to gym three times a week at least. It saves my life.

Take care.

[Michael Murphy]

One of the first things I did when I was told dialysis was to have surgery to install a fistula.  During the next six months my vascular surgeon had a angioplasty done on my fistula to improve flow.  So during the time I was waiting for a symptom my fistula was maturing.  When I did start it was in great shape.  Now many people ignore clear signs it's time to start and wait till its a medical emergency.  That's crazy.  In my case when I ate a great lunch and it ended up in the garbage can.  A small symptom but a symptom never the less.  Started next week funny how I hadn't noticed I was beginning to feel a little fatigued and so I actually felt better after starting.  So I actually had a gentle start, no cath, no hospital, and no fistula issues.  So my advise is 3 fold, have a fistula installed at first hint of dialysis ( this does not preclude PD but provides a backup if you have PD problems), don't obsess about your numbers and try to plot when you are going to start let your body tell you, and finally be realistic when you feel sick its time to start.  I go About 18 hours a week, that still leaves me 150 hours a week to have a life.  Good Luck remember Dialysis ain't fun but it sure beats being dead.

[Simon Dog]

Nightwalker - did the docs find a problem with your veins (weakness, to small, etc.).  It is atypical to start with a graft since they tend not to last as long as fistulas.

[nightwalker]

Hey Folks- Thanks for the replies- So I had my PTFE graft installed day before Thanksgiving. They performed a brachia-cephallic connection. Biracial artery to my Cephalic vein. I've got a couple nice scars to right next to my upper bicep, lateral from my armpit, with a straight-line graft connecting to the cephalic vein right above my arm crease. Pretty good thrill and the bruit is a trip... One week after surgery my forearm started to blow up like a balloon with a massive amount of fluid/blood, and there is still pain and swelling all the way down into my hand and flexors/extension tendons. Dr. is telling me this swelling can last up to 6 weeks WTF? He never told me that before the surgery. LOL, not really laughing. Has anyone here had swelling and fluid buildup in their forearm after a similar surgery. I think a vein or something was disturbed during the surgery, but I can feel my hand OK and the numbness/ tingling  is just moderate so I don't think its the beginning of steal hand. Can't find many answers to what might of happened during surgery. I want my arm back!

cheers, 

nw

[cassandra]

Was an Ultra Sound scan made?

Love, luck and strength, Cas

[nightwalker]

Was an Ultra Sound scan made?

Love, luck and strength, Cas

hey Cas, yes, actually, I was in excruciating much pain and the arm was so inflamed a week after surgery I ended going into the ER to have it looked at as I thought there may me an infection or some sort of a pseudo-embolism or deep vein thrombosis. They did an Ultrasound, but I feel like maybe the technician only looked at the upper half of my arm but I'm not really sure. Definitely swelling tonight, but it's getting much better thankfully.  @Simondog The Neph actually suggested a graft given the access heals faster. I think my arm was OK for fistula but the graft was more immediate I suppose.  My mother is a good donor candidate so the thought process was to get the graft installed and hope there is a miracle waiting for me. I find out next Friday if UCLA gives it a green light. Maybe transplant before getting stuck with a needle in the chair. Who knows what this roller-coaster we call life has planned .