I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
March 29, 2024, 06:44:46 AM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Introduction
| |-+  Introduce Yourself
| | |-+  Re-intro and worst possible news
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Re-intro and worst possible news  (Read 4996 times)
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« on: July 23, 2017, 02:05:30 PM »

Hello everyone. I am a PKD patient and joined this forum in 2010 when my Neph at the time convinced me that I was declining quickly and to get a fistula, which I did. Subsequently I did not decline as predicted and went on to work full time for 2 more years before fatigue made that impossible, although I still didn't need dialysis. So I stopped thinking about it and stopped visiting this forum.

Now my GFR is still 11 but I developed a large mass and they are assuming it is cancer and I was informed that the kidney has to come out. If that wasn't enough fun, I was told that I would definitely be on D after that so they should also remove the other one! I should add I'm in the transplant program, listed for just over a year but stuck in "Status 7" for various reasons.

To put it mildly, I am freaking out. I have no family to help me, not even any close friends in the city where it will be done, 100 miles from where I actually live (a very rural area). I was told it would be difficult and I would be in the hospital for possibly a week and then have to go to nursing/rehab until I was able to care for myself. I also have to start D before the surgery to "get in good shape." After the surgery, assuming I survive, I will have to find a place to live during the week for dialysis sessions and go home on weekends. I had originally wanted to do NxStage at home but I no longer have a willing partner.

My mental state swings from optimistic, "I can do this" to "my life is over and I'd be better off checking out before this all gets going." I'm more concerned about the double nephrectomy than about having to do dialysis. I've already visited the clinic where I will be going and told them I wanted to self-cannulate with buttonholes and they seemed happy to hear that. All but one of the patients I saw there looked like zombies, which didn't help.

Most of the descriptions about the surgery I've been able to find were on cancer.org, where many people say they had to have ribs removed, etc., some recovered quickly, others not so much, and none of them were double nephrectomies. If anyone here can give some helpful words I would appreciate it greatly. The doctor said there would be social services getting in touch with me about all this but they haven't yet, as this was just put in motion a few days ago. The surgery is scheduled for late October, with dialysis to start "about 2 weeks" before.

Thanks.
Logged
kickingandscreaming
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2268


« Reply #1 on: July 23, 2017, 05:34:57 PM »

So sorry you're going through all this.  I have no words of wisdom for you, but am wondering why you aren't considering doing peritoneal dialysis which is something you can do on your own.  I know it is discouraged with PKD, but I recently read that it's doable. https://www.karger.com/Article/FullText/431083

I wish you good luck.
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
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #2 on: July 23, 2017, 06:29:41 PM »

PD was my original goal when I first found out about my PKD, but I subsequently had an abdominal surgery and they say I can't do it. My sister used it for years until her heart finally gave out.
Logged
PrimeTimer
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2401


« Reply #3 on: July 23, 2017, 06:39:16 PM »

Don't know if this will help you any but here's a link to the American Cancer Society's "Hope Lodge". They help people with a place to stay during treatment. You might also find other info on their website useful. Good luck. Keep posting. As you know, many people come on this site and might have walked the same path as you are. Someone is bound to be able to offer good advice and answer your questions. Sorry you are going thru this. Try to remain hopeful and use it as a source of strength. Anger can also be good (yes, that is what I said) if it's used in a positive way.

https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge.html


Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #4 on: July 23, 2017, 06:58:26 PM »

I have a place like that tentatively set up for the time on dialysis before the operation. Not one on that list but similar, not free but very minimal cost.
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #5 on: July 24, 2017, 02:25:03 PM »

Wait a minute.  Your doctors are "assuming" the mass is cancer?  They are proposing that you go through tough surgery/ies based upon an assumption?
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."
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!

« Reply #6 on: July 25, 2017, 04:13:25 AM »

A friend of mine had kidney cancer and had a double nephrectomy and did well.  They got it all so she didn't have to have any chemo or radiation follow-up.  She started dialysis in center and then moved to Nx-stage at home.  She does have a wonderful husband that helped her but I know a few people that do it at home by themselves.  She waited the 5 years to be cancer free and has had her new kidney for more than a year and doing GREAT.

You can do this - One Day At A Time.  God Bless.

Keep us posted.

 :thumbup;
Logged

smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 484


LMSW

« Reply #7 on: July 25, 2017, 07:58:27 AM »

I am so sorry you are going through this.  However, I do think you can do it.  Just keep pressing forward and take one challenge at a time.  Try not to think about the next step, just focus on where you are at now.  Reach out to us hear and feel free to vent about all this when it feels overwhelming.  I can promise, however, that there is life on dialysis.  There are things worth living for.  Hopefully, transplant will be right around the corner for you!
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #8 on: July 25, 2017, 12:52:44 PM »

MooseMom: I know, right??!! Unfortunately it's not as simple as that. At this point it kinda doesn't matter whether it's cancer or not, I have run out of room in my gut. Originally I was told when I got a transplant they'd leave the old kidneys in and that there would be room lower down. My cysts have grown so aggressively over the last couple of years, I was told (by the tx surgeon personally) 6 months ago after my last MRI that I no longer had room, which didn't bother me as I knew often there was at least a partial nephrectomy done in some PKD patients getting transplanted. But since that time (6 months ago) I have this baseball size lump below the belt, with nausea and vomiting, and constant pain/awareness of the mass. And I already look like I'm 9 months pregnant. Something has to be done, and they don't do partials on people with garbage for kidneys. In the bad old days when my mother was alive (the 60's) they went in and carved off the cysts. The first time they told her it would last 10 years, it lasted 5. The second time it lasted 1 year, and the third time she never woke up. I have near-full access to my medical records including radiology and I'm pretty sure my team would not be recommending this if there was some less aggressive management. The transplant process will simply not go forward until this is dealt with. They are very rigid in their requirements but then again they do have a very good outcome stats.

Rerun: Thanks for that. I'll need to focus on positive stories to get through this. In my heart of hearts I don't believe it's cancer, but the thing they're looking at is 4cm and very recent. I'll be mad as hell if I go through all this and then they want me to do chemo!

Smartcookie: Thank you for the kind words of encouragement!
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #9 on: July 25, 2017, 01:44:47 PM »

Thanks for that explanation, LoneHighway.  I'm thinking, however, that if it IS cancer, you would not be listed until you've seen 5 years of being cancer free.  I understand your medical team might want those kidneys of yours out before you'd be eligible for tx (as it seems there would be no room for a new kidney!), but it does matter whether or not the mysterious mass is malignant or benign, right?  Or am I missing something here?
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."
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #10 on: July 25, 2017, 03:06:58 PM »

It does matter, but what difference does it make right now? Even if it was confirmed they wouldn't do anything about it other than what they're planning, unless of course I was so far gone they sent me to hospice. They've already said they won't do a biopsy because it's too dangerous and again, won't affect what they're planning.
Logged
cassandra
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #11 on: July 25, 2017, 04:38:46 PM »

Hi LoneHighway I had a double (bilateral) nephrectomy when I was 18. It's a big operation, they took mine out through the front. Have they told you how they plan to do it? It's a long time ago, methods might have changed.
However, I refused heparin (as that had caused a brain hemorrhage with me before that) so I had to walk so not to get dvt again. And I could (with the help of my sister). So just saying: it's painful, but than there's painkillers. And it's less painfull than a bad peritonitis. And you'll have some wound drains of course.
And if you use vitamin E oil on the scar (when it's closed) you'll hardly notice it after 35 years or so.

Of course you can do it, cos you must.

Lots of love, luck and strength, 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
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #12 on: July 25, 2017, 05:53:58 PM »

Thank you cassandra for sharing your story. They are planning a midline (down the middle front) incision, i.e. "split from stem to stern" as they used to say. I'll be loaded up on the heparin because I'm on coumadin for previous DVTs to that's a risk they won't want to take.
Logged
cassandra
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #13 on: July 26, 2017, 01:22:26 AM »

Thank you cassandra for sharing your story. They are planning a midline (down the middle front) incision, i.e. "split from stem to stern" as they used to say. I'll be loaded up on the heparin because I'm on coumadin for previous DVTs to that's a risk they won't want to take.

That sounds similar, and I'm glad they never used that term to me. No wonder you're apprehensive. My scar starts just under my breasts to just above my pubic bone.
Have you got a date yet?
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
Michelle2016
Full Member
***
Offline Offline

Posts: 112

« Reply #14 on: July 26, 2017, 09:21:14 AM »

I know someone who had a tumor. Doctor thought it was cancer. After the surgery, they found out it was not cancer.

Good luck.
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #15 on: July 26, 2017, 10:33:32 AM »

It does matter, but what difference does it make right now? Even if it was confirmed they wouldn't do anything about it other than what they're planning, unless of course I was so far gone they sent me to hospice. They've already said they won't do a biopsy because it's too dangerous and again, won't affect what they're planning.

I understand that it wouldn't necessarily change the current plans, rather, I was thinking it might change what would come next.  A cancer diagnosis would change your transplant status, I would think.

Anyway, please do keep us informed about what is going on.  I am really sorry that such a surgery seems to be in your future.  We here at IHD will do all we can to support you!
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."
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #16 on: July 28, 2017, 12:42:36 PM »

Thanks MooseMom. I did look into what effect a cancer diagnosis would have and apparently that varies quite a bit depending on the center you're going to. I just had a superficial melanoma removed, still have the stitches in fact, and the pathology said it was completely excised. This had no effect on my transplant listing. However I did ask my transplant coordinator what efffect this latest kidney development would have and she said "It depends on the staging," which I took to mean if it was well contained it would have no impact on my transplant listing.

On a brighter note, I met yesterday with the operator of a local cancer care hospitality house and they said I can stay there both before and after the surgery, as long as it takes until I am on my feet and can make my own arrangements. That's a great relief having that problem solved.
Logged
SuperHuman
Newbie
*
Offline Offline

Gender: Male
Posts: 19


Hello, nice to meet you!

« Reply #17 on: July 31, 2017, 11:50:36 PM »

Hello LoneHighway, yes you definitely could use some Social Services about now! Don't worry, they will come! In the meantime you should think about trying to make yourself as healthy as possible! Diet changes, lifestyle changes, whatever it takes! If you really want to stick around, then you can do it! Don't let those Zombie looking patients get you down! My whole unit currently looks like Zombies! You don't need a caregiver to help you on home-hemo Dialysis, it's possible to do it alone. I've been on it at least four times now, several years each time, and most of those times did it alone. But, if you don't feel comfortable doing it alone, then they should be able to provide you a caregiver! Hang in there, think of this as just another challenge, what else do we have to do on this Earth anyhow! Stay strong!
Logged

"With Science, Technology,..and a little will power! anything is possible"
LoneHighway
Jr. Member
**
Offline Offline

Gender: Male
Posts: 65


OTR Trucker, Off-Grid in New Mexico

« Reply #18 on: August 01, 2017, 05:11:33 PM »

Thanks for the encouragement. I met with my kidney nurse yesterday and she gave me the impression that home hemo by myself might be possible. This would be news to me because in the past they were pretty adamant against it. This is something I'll be looking into closely. My main worry right now is the double nephrectomy. I'm having trouble getting my head around that concept and how people survive it.
Logged
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!