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Author Topic: So what would you do  (Read 60106 times)
Charlie B53
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« Reply #175 on: May 10, 2018, 04:24:44 AM »

Prays sent.

I have to think that maybe there is a Silver Lining to this cloud.  That the venousgram will give the surgeon better information that will enable him to have a better outcome.

Old saying,  "Good things come to those that wait."

Your patience will be rewarded.

We are going through a similar delay with the Wife's head surgery.  It has been MONTHS, but a date has been set for this upcoming Tuesday, FINALLY.

Yesterday the Labs came back saying she has yet another UTI, that surgery MAY BE rescheduled.  Started a newer heavy antibiotic last night.  Fingers crossed she P's clean by Tuesday.
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cassandra
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« Reply #176 on: May 10, 2018, 05:04:34 AM »
O Charlie, thanx for your prayers, and I'm keeping everything crossed that your wife will have her surgery on Tuesday.


   :cuddle;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
KatieV
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« Reply #177 on: May 10, 2018, 06:42:04 AM »
Quote from: cassandra on May 10, 2018, 01:05:06 AM
Update: I'm back, no operation happened. I was Nil By Mouth from 23.00 Tuesday. Scheduled for 08.30 operation. 'Enjoyed' decontemination shower, had talk with anaesthesist, and than: Mr 'rubbish veins' shows up.
TBH I didn't recognize him straight a way. Only when he grabbed my 'still useable fistula arm' which I had completely covered with permanent black marker : NOT THIS ARM. Only when he said with a smile: "so we are making a graft then" did I recognize him. I janked away my precious arm, told him what the plan is. And that I was waiting for 'super' surgeon.
He looked at the arm in waiting of fistula transposition, and said:" did they do a venogram?" No they hadn't. TBH I had asked 'super' surgeon about this, but after all the u.s. Scans I forgot about it, AND I think there won't be a narrowing in that vein as my arm is not swollen at all. The previous (still used) fistula-arm was swollen after day 2 of its creation (with severe narrowing) and still works 20 yrs later.


Anyway, I was sent home, awaiting appointment venogram. It's just 09.00 now, so I'm calling the coordinator.


   :banghead;

Good for you waiting for only the best surgeon! 

I have had the good fortune to have a wonderful surgeon both with his surgery talents and his bedside manner.  I needed major work done to my fistula about a year ago.  I wanted a revision to the fistula (straightening and pulling to the surface).  Based on my scans, he didn't think it would be possible.  He recommended a graft (in same arm) or a fistula in the other arm.  I flat out refused the new fistula, and asked that he try to fix my fistula.  But that I would be okay with a graft if he couldn't fix my fistula.  I woke up to an 18 inch scar up my arm, but my fistula was revised and is lovely!

Hopefully your venogram will give them some good answers!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
kickingandscreaming
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« Reply #178 on: May 10, 2018, 09:09:26 AM »
Quote
I woke up to an 18 inch scar up my arm, but my fistula was revised and is lovely!

That's a first.  Referring to a fistula as "lovely." 
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #179 on: May 10, 2018, 06:17:47 PM »

My initial fistula wouldn't develop well enough.  Repeated angioplasty still couldn't get it to grow.  Revision, bringing it nearer the surface and removing a narrowing and it is working much better.

Scar the length of my left bicep doesn't look bad at all. 

Since I am one of those 'Guys' I wouldn't call it lovely, but not bad.
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MooseMom
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« Reply #180 on: May 11, 2018, 09:00:27 AM »
I'm not liking this particular plot twist, Cass!

Dearie me.  Ugh.

Please let us know when your venogram appointment is, OK?

I can't believe you had to see that awful Mr. Rubbish Veins!  How dare he even approach you at all!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #181 on: July 03, 2018, 02:39:13 AM »
Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion. 
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #182 on: July 03, 2018, 04:14:11 AM »
Quote from: cassandra on July 03, 2018, 02:39:13 AM
Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion.

Hello Cassandra, good luck wishes are coming your way from Kristina and please take great care.
Hope to "see" you soon and all the best wishes again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly
« Reply #183 on: July 03, 2018, 06:20:23 AM »
Thank you Kristina


   :cuddle;
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #184 on: July 03, 2018, 06:43:45 AM »
Obstacle after obstacle. Phooie.  I hope you can finally get this over with--successfully.  Good luck, Cas.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #185 on: July 03, 2018, 07:03:07 AM »
Hope everything goes okay Cassandra! :grouphug;
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My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
MooseMom
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« Reply #186 on: July 03, 2018, 10:25:26 AM »
Quote from: cassandra on July 03, 2018, 02:39:13 AM
Sigh, received info for next surgery trial date for next Friday, to be admitted Thursday.
So bloods were picked up yesterday, and now my Calcium is too low. Tomorrow I'll go into my normal hosp to do a session and get a Calcium infusion.

Wait, what?  By "surgery trial date", do you mean a provisional date?  Does your low calcium mean your date might be postponed again?
Logged
"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #187 on: July 03, 2018, 02:10:00 PM »
Thank you Xplantdad and KaS for the good wishes and MM if the surgeons don't want to touch me, they don't want to touch me. I think it'll be okay this time.


Just a bit annoyed with myself. I posted at least 2 articles about Phosphates and Calcium plunging through the floor when you dialyse more days. And I had to D more days as I could only D for 2 hrs without Tinzaparin after the stomach bleed. And I forgot to increase my Alfacalcidol. Ofcourse I could have been lucky and one of the Learned ones ......, but tomorrow might do the trick.


   :angel;
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #188 on: July 03, 2018, 02:38:30 PM »
Oh, OK, I understand now.

Good luck to you, and thanks so much for keeping us updated!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #189 on: July 03, 2018, 03:40:58 PM »
Quote from: cassandra on July 03, 2018, 02:10:00 PM
Thank you Xplantdad and KaS for the good wishes and MM if the surgeons don't want to touch me, they don't want to touch me. I think it'll be okay this time.


Just a bit annoyed with myself. I posted at least 2 articles about Phosphates and Calcium plunging through the floor when you dialyse more days. And I had to D more days as I could only D for 2 hrs without Tinzaparin after the stomach bleed. And I forgot to increase my Alfacalcidol. Ofcourse I could have been lucky and one of the Learned ones ......, but tomorrow might do the trick.


   :angel;

Hello Cassandra,
I was just reading ... and you mentioned a stomach bleed because of Tinzaparin?
Only 2 hours of Dialysis on more days during the week, so you can avoid taking Tinzaparin? How was it diagnosed? Did the medics tell you that Tinzaparin can cause problems with stomach bleeding? Is there an alternative toTinzaparin?
I feel very sorry for you and I am thinking of you and I do hope you feel better soon. :grouphug;
Please tell us more about it please. I have been taking Tinzaparin for a long while now and recently I have been noticing that there is something developing that's not quite right and I have been wondering whether or not it is connected to my taking Tinzaparin? On the other hand I had no problems with it to start off with until now and I have been wondering, whether it really could be that there is a problem developing with it for me now even though I had no problems with it before?
Many thanks and hopefully you feel better soon and best wishes from Kristina. :grouphug;
« Last Edit: July 03, 2018, 03:43:15 PM by kristina » Logged
Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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« Reply #190 on: July 03, 2018, 04:37:42 PM »
Thank you MM, and Kristina


 
Quote from: kristina on July 03, 2018, 03:40:58 PM
I was just reading ... and you mentioned a stomach bleed because of Tinzaparin?
Only 2 hours of Dialysis on more days during the week, so you can avoid taking Tinzaparin? How was it diagnosed? Did the medics tell you that Tinzaparin can cause problems with stomach bleeding? Is there an alternative to Tinzaparin?



I don't think it's particularly the Tinzaparin causing problems. It's more the fact that: your body will react to your blood being in contact with the plastics constantly, and the use of medicins will cause some changes in your body. One of my bodies weaker parts is my stomach/oesophagus. So ulcers developed. Tinzaparin is necesarry to stop your blood from clotting. Your blood reacts to the plastics and clots.


Some ulcers in my oesophagus started bleeding, and because the Tinzaparin stopped the blood from clotting it became a serious bleed. The wounds would start bleeding again if I were to use Tinzaparin, so I was stopped from using it, so my stomache lining/oesophagus etc could heal. But my blood would clot (even with saline flushing every 30 mins) when dialysing 2,5 hrs, so I shortened my sessions to 2 hours. And increased the amount of days.


Everything has consequences, things need balancing out, it's hit or miss with a lot of things (concerning our bodies and life as a whole I suppose) I was actually surprised when one of my nephrologists said: "I have no idea how this will effect you as you have no kidneys at all". I'm just an experiment, but an experiment still living a life after 34 yrs RRT,.... I'll better be okay after Friday  ;D


Love to all, Cas
« Last Edit: July 03, 2018, 04:39:23 PM by cassandra » Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #191 on: July 04, 2018, 07:25:41 AM »
Many thanks Cassandra for your kind explanation. It is very true when you say, that it is "hit or miss" with many things and it is somehow an experiment and we just have to find our way by trying as best as we can. Unfortunately, sometimes it all becomes just  a little tiring, but it is so good to come here and exchange our experiences. I shall keep an eye on the Tinzaparin and hopefully it won't attack my stomach. I do hope your nephs find a way for you very soon !
Is there an alternative to the Tinzaparin or could the same "thing" happen with other anti-blood-clotters as well?
Many thanks again and best wishes from Kristina and hopefully you are feeling better soon and please let me know how you are going on.  :grouphug;
Logged
Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly
« Reply #192 on: July 04, 2018, 10:33:04 AM »
Hi Kristina, it was the Cinecalcet that caused the stomach/oesophagus problems. I had problems there before as a kid due to chemo and massive amounts of Corticosteroids, hence the weak spots. Tinzaparine just caused the bleeding not to stop as it's a blood thinner.
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cassandra
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When all else fails run in circles, shout loudly
« Reply #193 on: July 04, 2018, 10:43:42 AM »
Now back from D and infusion with Calcium Gluconate. All went well. Adj.Calcium now 2.49 and phosphates even lower at 0.66 so I've just enjoyed a huge yoghurt and Topic chocolate bar without a single Renagel.  :laugh:
I read up on the Calcium Gluconate which apparently lowers Potassium and Magnesium too. Just wondering why I wasn't told to eat some phospate/potassium rich food.
Fair enough, now I'm slightly worried about the amount of Phos I've just eaten.
Continues tomorrow.....
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #194 on: July 04, 2018, 02:16:30 PM »
Quote from: cassandra on July 04, 2018, 10:33:04 AM
Hi Kristina, it was the Cinecalcet that caused the stomach/oesophagus problems. I had problems there before as a kid due to chemo and massive amounts of Corticosteroids, hence the weak spots. Tinzaparine just caused the bleeding not to stop as it's a blood thinner.

Many thanks again Cassandra ! I shall keep a watchful eye on Cinacalcet & Tinzaparin and hopefully my body keeps going (touch wood !!!) until the transplant... whenever that may come along ... I do hope you feel much better and I send you my kind regards from Kristina. :grouphug;
Logged
Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly
« Reply #195 on: July 07, 2018, 08:53:27 AM »
Dear friends I'm just back from hosp. And super surgeon did it again!!!!


  :yahoo;   He couldn't move it to the outside, so it goes from the inside of my elbow to my armpit.


But it works, and I hope to last for a bit longer. And yes 'rubbish veins' surgeon showed up first again, so I made a huge (really huge) scene till super surgeon came. I'll be back, arm is falling off.


Love, Cas
Logged
I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kickingandscreaming
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« Reply #196 on: July 07, 2018, 11:26:16 AM »
So good to hear that you're done with this saga.  Congratulations!  (even tho your arm is falling off).
Logged
Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
cassandra
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When all else fails run in circles, shout loudly
« Reply #197 on: July 08, 2018, 03:47:27 AM »
Thank you KaS


   :cuddle;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #198 on: July 08, 2018, 08:12:21 AM »
What terrific news!  Well done, Super Surgeon.  Rubbish Veins doc is a waste of space.  Good for you for sticking up for yourself!!
Logged
"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #199 on: July 08, 2018, 08:17:59 AM »
Hello Cassandra  and congratulations ! I am so glad for you and hopefully you won't have any problems like this again.
All the best and good-luck-wishes from Kristina. :grouphug;
Logged
Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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