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Juniah
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« on: March 31, 2017, 01:48:34 AM »

Greetings!

My name is Jeff. Ran across the site while doing some research of some kind online, can't remember what exactly. I'm 29 years old and live in a tiny town on Liberty Bay near Seattle Washington at the moment. I was diagnosed with type 1 diabetes at age 5. At age 25 I suddenly went blind in my right eye. Went to see an eye doctor, who referred me to a more specialized eye doctor who diagnosed diabetic retinopathy. Had surgery on right eye, and several injections and laser surgeries on both eyes. Everything seemed to be going fine until I left my job working for state hatcheries to a private company that raised fish for human consumption. When I switched jobs, there was a lapse in insurance. The greedy insurance company would not allow me to purchase enough medication to last until insurance from new job would kick in, so I was without blood pressure medication for over 3 months. During this time I started having severe nausea episodes that landed me in the hospital for fear of ketoacidosis twice. By this time, I had been promoted to manager at a small hatchery near Snoqualmie. I turned to medical marijuana to help with the nausea I was having almost every day, and it kept me functional, until one of my employees broke into my house that was on the hatchery grounds when I was out shopping, took pictures of my medical marijuana, and sent them to the CEO of our company. This immidiately got me fired, so I was forced to moce back in with my mom (also a medical marijuana user). My mother actually contacted some lawyer group specifically for marijuana lawsuits, and they basically contacted me and begged me to let them represent me in a lawsuit against the company for wrongful termination. I informed them I wasn't interested, if they were that ignorant and unthankful for the ridiculous hours and hard work I was putting in(12-16 hours a day) while being extremely sick (vomitting 3-5 times a week in the mornings), I didn't want anything to do with them anymore. I sent them an e-mail telling them that 90% of their workforce smokes pot for the simple reason of getting high, that I could have sued them for probably several hundred thousand dollars, but decided not to because they just weren't worth my time. After getting insurance, getting a primary care doctor, and then finally getting a referal to a nephrologist, I was informed that I was already in stage 5 kidney failure and probably should have been on dialysis for several months already. They immidiately put a catheter in my chest and made an appointment with a vascular surgeon to put in an AV fistula in my lower arm. They did the fistula surgery in August of 2016, but a couple days later it clotted off. A few weeks later they did a second surger in my upper arm (near my elbow) and put in a successful fistula. We just started using the fistula only for both veinous and arterial needles a few weeks ago, and some time in April we will finally be able to remove the catheter! I'm looking forward to showers and hot tubs again!! In late March I was finally referred to the transplant team at the University of Washington. I am going to attempt to qualify for a pancreas and kidney transplant. I'm sure there is a bunch of stuff I left out, if you have any questions about my specific situation, let me know, I'm very open about myself and my medical conditions  :2thumbsup;
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1992 - Diagnosed with type 1 diabetes
2013 - Diabetic retinopathy (multiple injections, laser surgeries, and one anesthesia surgery)
2015 - switched jobs, insurance laps caused several months of no BP medication
2016 - First fistula surgery in August (clotted off) catheter placed in neck in September to begin dialysis, second fistula surgery in October, catheter to be removed in April 2017
2017 - Started working with transplant team in March
SooMK
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« Reply #1 on: March 31, 2017, 04:47:41 AM »

Welcome Juniah! So sorry to hear another example of unnecessary trauma because healthcare is tied to employment. Hoping you get your transplant and all goes smoothly.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Charlie B53
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« Reply #2 on: March 31, 2017, 05:08:34 AM »


Welcome to IHD.  You've had quite the rocky start but finally getting the Dialysis treatments you need to stay as health as possible.  I hope you have gotten a method to keep the nausea controlled.  Employers are a very Biased lot, not much is going to change until they are forced to.  Huge attorney fees and settlements of court cases may be one of the few methods that people have to force many changes.  PITA that it had to happen to you.

Hope your future is better.

Take Care,

Charlie B53
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iolaire
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« Reply #3 on: March 31, 2017, 05:52:24 AM »

Welcome, I'm from Alaska originally so the Seattle area is very familiar with me (and fishing/hatcheries).  Seattle Children's Hospital got my Lupus under control in the early 1990s.  My bother and his family is in Maple Falls just outside of Bellingham.

I hope you are able to keep your health under control because that seems to help make this dialysis thing bearable.  Also keep in mind unless you get a donor you are in for a fairly long wait for the transplant so getting used to dialysis is a must.
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I travel with my wife as a hobby and am on Dialysis, recent trips include Brussels.  We return to South Africa (Cape Town) in November 2016. I've also visited a few other US DaVita centers and have had good experiences.

I still owe a write-up for Montreal for October 2016.
KarenInWA
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« Reply #4 on: March 31, 2017, 06:09:46 AM »

Welcome to IHD! I had my kidney tx done at UWMC over 5 years ago. I got my kidney from a live donor - a family member donated to me. We are related by marriage.

That is quite the story in regards to your previous job. My mind works a lot differently than yours, though. I would make any employer who did that to me suffer and pay through the nose for discriminating against me. I did not choose my lot in life, I will not be made a victim of it. I have been lucky, though. My job was very accommodating when I was on dialysis and went through transplant.

I look forward to seeing more of your posts here!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
MooseMom
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« Reply #5 on: March 31, 2017, 08:58:19 AM »

Welcome Juniah! So sorry to hear another example of unnecessary trauma because healthcare is tied to employment. Hoping you get your transplant and all goes smoothly.

Exactly.  It's a national disgrace.
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"Empathy is the soul of democracy."  Jeremy Rifkin
MooseMom
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« Reply #6 on: March 31, 2017, 09:00:06 AM »

I'm very glad you've joined our community, and I look forward to many more posts from you.   :2thumbsup;
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kickingandscreaming
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« Reply #7 on: March 31, 2017, 10:12:45 AM »

Welcome, Juniah. I'm sure you'll find a lot of support here.
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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
Juniah
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« Reply #8 on: March 31, 2017, 11:48:32 AM »

Welcome Juniah! So sorry to hear another example of unnecessary trauma because healthcare is tied to employment. Hoping you get your transplant and all goes smoothly.

Thank you so much for the warm welcome, all of you! Although I may have sounded a little like a debbie downer with this last post, I am actually a very positive person in general, and very happy with the way things turned out, I hope I didn't give the wrong impression! It is very unfortunate that healthcare is tied to employment, I have heard many horror stories about this as I've shared my story with others, it's somthing I am hoping will change, but am not holding my breath for :P


Welcome to IHD.  You've had quite the rocky start but finally getting the Dialysis treatments you need to stay as health as possible.  I hope you have gotten a method to keep the nausea controlled.  Employers are a very Biased lot, not much is going to change until they are forced to.  Huge attorney fees and settlements of court cases may be one of the few methods that people have to force many changes.  PITA that it had to happen to you.

Hope your future is better.

Take Care,

Charlie B53

Absolutely! I HATED everything about dialysis when I first started, it made me sick as a dog and super tired, but as they found my dry weight and I continued to go to dialysis every Tues/Thurs/Sat I noticed a huge difference, I am now doing about as well as expected. The nausea is under control now thanks to Prilosec it seems, we will see if it comes up again, it usually happens in cycles (couple weeks of being fine followed by 2-3 days of nausea and vomitting) fingers crossed! Thanks for the warm welcome!

Welcome, I'm from Alaska originally so the Seattle area is very familiar with me (and fishing/hatcheries).  Seattle Children's Hospital got my Lupus under control in the early 1990s.  My bother and his family is in Maple Falls just outside of Bellingham.

I hope you are able to keep your health under control because that seems to help make this dialysis thing bearable.  Also keep in mind unless you get a donor you are in for a fairly long wait for the transplant so getting used to dialysis is a must.

No way! Alaska is an amazing place, I've been there twice, one of them was a very memorable fishing trip with my mom's company. It is so beautiful up there! If I ever get a chance to retire, I've vowed to myself it will either be in Alaska, or New Zealand! Seattle Children's is a FANTASTIC place! That is where we went when I was diagnosed with type 1 diabetes, also in the 90's, I wonder how close together we visited! I am actually lucky in the sense that I am doing a dual transplant of pancreas/kidney, so the wait time is actually only 6 months compared to the 1.5-2.5 year wait for just a kidney transplant. I did have numerous live donors who offered to get tested, but when we spoke with the transplant team they said that there was a much higher success rate when using a pancreas and kidney from the same donor, and of course you can't actually donate a pancreas as a living donor. I'll make sure to keep everyone updated about that though! I have finally gotten used to dialysis. The fatigue is still there, but not nearly as prevelent since they've come up with a decent dry weight for me. Thank you for the warm welcome! Cool to see another Northwest person here, I'm sure there are several, I'm looking forward to meeting them all!

Welcome to IHD! I had my kidney tx done at UWMC over 5 years ago. I got my kidney from a live donor - a family member donated to me. We are related by marriage.

That is quite the story in regards to your previous job. My mind works a lot differently than yours, though. I would make any employer who did that to me suffer and pay through the nose for discriminating against me. I did not choose my lot in life, I will not be made a victim of it. I have been lucky, though. My job was very accommodating when I was on dialysis and went through transplant.

I look forward to seeing more of your posts here!

KarenInWA

What a small world! I hope that kidney works flawlessly for you for many decades!! I was very angry at first, but right when it happened is when all these surgeries and doctors visits started, I was too exhausted to deal with attourneys and to be frank I was afraid of picking up an assault charge if I ever had to meet any of the bosses that made the decision to fire me face to face, haha! NORML really did want to represent my case, but like I said, I didn't have the energy to deal with it at that time, and I just thought it would be better for my own personal life and health to move on and forget about them. I am lucky enough to have an EXTREMELY supportive mother and step-dad (honest-to-God lifesaving people, I love them both to death! Don't know where I would be if it weren't for them!) and once they heard my story they invited me to come stay with them while I got my health back on track. Once they got engaged they actually approached my about furthering my education, so after all this transplant stuff is finished, I am actually planning on going back to college to do what I wanted to do as a child but never had the funds to, to become a veterinarian! Not sure if I will be able to with the imunosuppresants, but I have always been interested in science, so even if I can't become a vet I wouldn't mind being a research scientist, or something of the sort which the 4-year degree on the track to the vet degree supports. Glad your job was so accomidating during your trip through CKD! You sound like a very independant and driven individual, reminds me a lot of my mom! Thanks for your kind words!
« Last Edit: March 31, 2017, 12:07:35 PM by Juniah » Logged

1992 - Diagnosed with type 1 diabetes
2013 - Diabetic retinopathy (multiple injections, laser surgeries, and one anesthesia surgery)
2015 - switched jobs, insurance laps caused several months of no BP medication
2016 - First fistula surgery in August (clotted off) catheter placed in neck in September to begin dialysis, second fistula surgery in October, catheter to be removed in April 2017
2017 - Started working with transplant team in March
Bill Peckham
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WWW
« Reply #9 on: March 31, 2017, 12:13:37 PM »

West Seattle checking in - which unit are you using?


Welcome to IHD
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Juniah
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« Reply #10 on: March 31, 2017, 01:36:34 PM »

West Seattle checking in - which unit are you using?


Welcome to IHD

I am actually in Kitsap county, in a tiny town called Indianola. Of course no one outside of Washington, and few people IN washington know where that is, so I just use Seattle as a reference point. I am currently under the watchful eye of the nurses at Olympic Peninsula Kidney Center. They have a unit in Bremerton, and the one I am using is the one in Poulsbo (20 minute drive from me). In my defense, I can see West Seattle from my back deck!
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1992 - Diagnosed with type 1 diabetes
2013 - Diabetic retinopathy (multiple injections, laser surgeries, and one anesthesia surgery)
2015 - switched jobs, insurance laps caused several months of no BP medication
2016 - First fistula surgery in August (clotted off) catheter placed in neck in September to begin dialysis, second fistula surgery in October, catheter to be removed in April 2017
2017 - Started working with transplant team in March
MooseMom
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« Reply #11 on: March 31, 2017, 03:15:30 PM »

I'm very glad to hear you have such a supportive family.

You sound like a man with a plan, so we are all hoping that you get a transplant soon so that you can start your life over again.

I imagine there would probably be some problem with being a vet while having to take immunosuppressants, but I would suppose that if you took care, you could do it.  It would be interesting to hear what a transplant team would tell you. 
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"Empathy is the soul of democracy."  Jeremy Rifkin
cassandra
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When all else fails run in circles, shout loudly

« Reply #12 on: March 31, 2017, 03:26:40 PM »

Welcome to the site Juniah

   :welcomesign;


Take care, Cas
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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
       still on waitinglist, still ok I think
LorinnPKD
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« Reply #13 on: March 31, 2017, 07:15:29 PM »

Welcome welcome!

Glad to hear that you are feeling better and stronger now that you are on dialysis.  Like you, I was deep into Stage 5 and barfing all the time before I actually started on the machine.  Now at nearly nine months doing hemo, I feel better than I felt 2-3 years ago. Not perfect, by any means, but certainly better.  It's been a pleasant surprise.

Wishing you all sorts of luck as you settle in and pursue the xplant process.
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Juniah
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« Reply #14 on: March 31, 2017, 11:33:28 PM »

I'm very glad to hear you have such a supportive family.

You sound like a man with a plan, so we are all hoping that you get a transplant soon so that you can start your life over again.

I imagine there would probably be some problem with being a vet while having to take immunosuppressants, but I would suppose that if you took care, you could do it.  It would be interesting to hear what a transplant team would tell you.

Family is crucial during hard times, I couldn't imagine going through this without the support of my close friends and family, I am definitely a lucky guy! I'll bring up my career options with the transplant team at my next appointment and be sure to let you all know what I find out.

Welcome to the site Juniah

   :welcomesign;


Take care, Cas

Thank you!

Welcome welcome!

Glad to hear that you are feeling better and stronger now that you are on dialysis.  Like you, I was deep into Stage 5 and barfing all the time before I actually started on the machine.  Now at nearly nine months doing hemo, I feel better than I felt 2-3 years ago. Not perfect, by any means, but certainly better.  It's been a pleasant surprise.

Wishing you all sorts of luck as you settle in and pursue the xplant process.

Crazy isn't it? I remember thinking "Is this it?" 2 months into dialysis, just last week, after being on dialysis for just over 5 months I started gaining a little bit of energy and have been able to return to somewhat normal lifestyle. I have a feeling I'd be much more active were it not for the accoustic neuroma I was diagnosed with a few weeks back that's been causing a little dizziness, but that should be taken care of soon as well! Thank you for the welcome and well-wishes!
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1992 - Diagnosed with type 1 diabetes
2013 - Diabetic retinopathy (multiple injections, laser surgeries, and one anesthesia surgery)
2015 - switched jobs, insurance laps caused several months of no BP medication
2016 - First fistula surgery in August (clotted off) catheter placed in neck in September to begin dialysis, second fistula surgery in October, catheter to be removed in April 2017
2017 - Started working with transplant team in March
PrimeTimer
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« Reply #15 on: April 02, 2017, 07:36:54 PM »

 :welcomesign; Welcome to the ihd family, Juniah! Sorry to be late with this but have enjoyed your posts so far! Keep it up!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Michael Murphy
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« Reply #16 on: April 03, 2017, 12:23:48 AM »

Welcome the next time you are out of medication for any reason contact your doctor nephrologist for kidney meds, endocrinologist for diabetes meds.
Several time during insurance changes  I was having difficulties getting meds and my doctors came through.  The drug companies hand out samples to doctors like it was candy during holloween.  If that fails contact social worker at your clinic they are paid to help you.
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