I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Dualref on May 24, 2016, 02:36:15 AM
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My name is Allen, aka Dualref. I am a 64 year old male (long time divorced) that came down with something called RPF (Retroperitonital Fiibrosis) in 1994 after an automobile accident. Let me start by explaining what RPF is for those of you who don't know.
RPF is a very rare disease that starts out by turning your insides (the peritoneum) into a concrete like substance. How it starts is still not clear, but it's becoming more and more common all the time. When I came down with it I was considered one of only 5 people in the who US with it. Now there are hundreds with it. Some doctors think that's it's caused by some medications, some think it just happens spontaneously. In my case I had this automobile accident (I was sitting in bumper to bumper traffic and was hit from behind at a high speed) and the car accident caused an internal abdominal hemmorrage.
I was taken to the hospital, the doctors wanted to perform a CT scan to check for hemorrhage, but I had an HMO for insurance at the time and they declined the CT scan. The doctor SHOULD have told me to pay for it myself, but he didn't and just let it go. In the meantime I had this hemmoraging going on. After a few days the bleeding stopped, and the RPF set it. Scar tissue started forming in my abdomen. And wouldn't stop. A few months later my blood pressure shot way up. The doctors kept telling me my problems were all in my head. Finally the vomiting started and I couldn't hold anything down and I started losing weight very quickly.
Finally a few of my friends said I need to see other doctors not in my HMO plan and see what's going on. So I saw a GP who did a CT scan and immediately put me in the hospital. He said both of my kidneys were blown up like balloons and the internal pressure is killing them. Later that afternoon a urologist had be in surgery and released over a gallon of trapped urine (hydronephrorisis). He said the right kidney was pretty much destroyed but I have about 80% of the left kidney left. What had caused this was that the RPF had gotten a hold of the ureters that lead from the kidneys to the bladder and crushed them down, preventing proper flow of urine. So he put in plastic tubes (stents) in the ureters to prevent this from happening again. Blood pressure came back down and I had to go in and have the stents changed every three months via outpatient surgery. This was in 1994.
In 1996, the urologist explained that the stent surgery is only a "temporary" treatment for what is wrong with me and sent me in for a "peritonital resection" which means going in and digging the ureters out of the RPF mass. This 12 hour long surgery worked, for about three years until the RPF came back again. So in 2000 we went back t o stents again. This time with the advancements in stent design I can go with only one stent change per year.
I was then hooked up with a nephrologist because nothing more could be done for me and all you do is monitor your blood work on a monthly basis and watch for any changes. Some of the nephrologists I had were ok, some were quite terrible. They only told you what they wanted you to know and wouldn't offer any advice. I finally found one in 2004 I could work with.
So I was averaging a Creatine of 2.2-2.8 with a bun of 40-60 until last year. Then the creatine started jumping up. 3.0, 3.5, 4.3, 5.5, 6.8. The BUN stayed at about 79. Acids were up and my postassium climbed to 5.8-6.0, my phosphates climbed to 8.3. The EFGR is 8 mL/min/1.73m2.
Last October my nephrologist said I need to have a fistula put in. We'd do that the first week of December. Two days before that surgery I had to cancel it, I had come down with the flu. The nephrologist said to go ahead with the fistula surgery anyway. Even while I am going through the flu with a COPD complication? When I said no, the crap really hit the fan. The surgeon said he put a "cardiac hold" on my so I couldn't have the surgery and when I feel better we would get around to it. I was then referred to a cardiologist for an examination. The cardiologist said I have "pulmonary hypertension" which is dangerous and needs to be treated before the fistula is placed. The nephrologist told me to just come back when i get the clearance from the cardiologist.
So in March of this year I had the fistula placement.
The fistula placement turned into one of the biggest medical disasters I have ever had. Everything was so haphazard and sloppy. The doctors instructions sent me to the wrong hospital, the surgery was scheduled for 8:00am and didn't start til 4:40pm. I had a bad omen about the entire thing. Then in the middle of the surgery I wake up to hear the doctor calling for more Lasix and Eppi. When I woke up I felt like I had been run over by a Mack truck. I was dry heavng all over the place for three hours after the surgery. Nobody could do anything for me. The doctors said I have to not only wake up NOW but they wanted me to walk around the room immediately after surgery. Now I have had over 20 stent replacements since 1994 and general anesthesia usually works well for me. Not in this case. The next week I still couldn't swallow anything my throat hurt so bad, my left arm was swollen and hurt like hell. We are now 5 weeks after this surgery and I still have not recovered any strength. I visited with the surgeon and he assured me that the surgery went well and without incident and he has no idea where I am getting these ideas from!
I saw my general practitioner and he thought something definitely went on during my surgery, but nobody is talking. Next week I am seeing a new nephroloigst. After this last incident I don't think my current nephrologist has my best interests at heart.
The strange thing is even though I have these bad blood readings I don't have any symptoms of needing dialysis. No water weigh gain, no edema anywhere, no nausea, etc. BP is around 135/78 with a HR of about 65.
My nephrologist has me on blocking meds like Velphoro and Fosrenol and Calcium Acetate. But these really destroy my stomach and digestive tract.
I'm also on something called Veltassa for potassium. BTW, just for the record I am not a diabetic.
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Welcome. I hope you are able to enjoy the your pre dialysis days despite the hell you already went through. Dialysis is a serious lifestyle change but for many its quite manageable.
My nephrologist always told me that I'll know when its time for dialysis, that the lab work is only an insight and everyone's body is different and he was right. In my case I started having odd feeling legs, maybe restlessness at night that was causing me problems sleeping. Then when I was in the hospital for an ulcer and highly anemic after having internal bleeding the decision was made to put me on dialysis.
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Oh, DualRef. Words fail me. You have been through the ringer on a whirlwind tour of the Medical-Industrial Complex! I hope things lighten up for you soon. After what you've been through, dialysis might not be such a big deal. I hope this forum can give you the support you need to get through the next stage. Best of luck to you.
K&S
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Welcome to the site Dualref
:welcomesign;
And I'm sorryyou had to go through such an ordeal.
Love, Cas
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One of the reasons I am thinking about changing nephrologists is that it seems like her attitude has changed. Instead of being helpful, all I hear from her now is "You're going on dialysis, like it or not." She said I knew this day was coming for the past 20 years and now deal with it.
One of the other things that bothered me about her is that there has been virtually no nutritional guidance. No potassium, no phosphorus, etc. What foods have these? Most everything, you figure it out for yourself. And finally she said that most people enjoy their dialysis experience. Think of it as a country club like setting. You'll make new friends and best of all dialysis cures all kidney problems! No more chemical imbalances, no more worrying about your bloodwork, etc. What a croc, huh?
I have had days where I have gone into the grocery store to find something to eat and realized that everything in the store is off limits.
And finally I asked her for a handicap parking tag for my car which would make my life easier with my back and her response? "When you have an ambulance coming to your house to take you to the local dialysis center for dialysis treatment I'll consider giving you a handicap tag." Biotch.
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One of the other things that bothered me about her is that there has been virtually no nutritional guidance. No potassium, no phosphorus, etc. What foods have these?
Do your labs show that you need to control your nutrition? She might not be promoting that because you are not ready for it? My nephrologist said I didn't need to limit my diet prior to dialysis, other than telling me to not overload on protein and salt. Even now 2.5 years in with some residual kidney function I really only need to worry about phosphorus and that is controlled well via binders.
But that being said prior to dialysis seems like a good time to get a nephrologist you are comfortable with. Do you know that certain nephrologist work certain dialysis centers? If you are looking for a new nephrologist make sure you pick one that works in the dialysis centers you want to be placed. (For example if I was to transfer to a center near my work I'd need to get a new nephrologist because my group only works in Northern VA and not DC, and I have a different nephrologist front the same practice than the guy I saw for seven years prior to dialysis because that guy only works T, Thursday and Saturday, not M, W, F.)
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Acids were up and my postassium climbed to 5.8-6.0, my phosphates climbed to 8.3. The EFGR is 8 mL/min/1.73m2.
Get rid of the the nephrologist! Sounds like a duzy.
Your numbers are definitely off kilter and in serious ways. Nephrologists, like most other doctors of the western medicine persuasion have zilch knowledge of nutrition. At most they hand you a sheet with a list of foods you can and cannot eat. Not very helpful. She should at least refer you to a renal dietition or to a good, well trained wholistic nutritionist for guidance. I've been studying nutrition on my own for the last 40 years, so I didn't need much guidance, but if I had, my doctor would be the LAST place i would go for it.
Here are a couple of useful websites that give you the breakdown of most foods when it comes to potassium and phoshphorus (as well as everything else). I keep these two bookmarked and am always looking stuff up. http://nutritiondata.self.com https://ndb.nal.usda.gov/ndb/search
Here are some collections of renal recipes for starters:
https://www.davita.com/recipes/
http://www.nwkidney.org/living-with-kidney-disease/recipes/
https://www.kidney.org/sites/default/files/docs/kidney_cookbook_lr.pdf
https://www.aakp.org/community/esrd-recipes.html
https://www.freseniuskidneycare.com/eating-well
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Welcome, Welcome, you are here on IHD. We are so glad you found us.
You will learn a lot here. I learned a lot reading your intro. I have not heard of RPF before. Very Interesting. I wonder if it is in our water. Lead.
Welcome, Rerun-Admin. :welcomesign;
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And I am glad to have found you all as well! Thanks for those nutrition links, they will come in very handy.
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Good move changing nephrologist, it pays to go to one you like since you will be seeing a lot of this doctor. The lab numbers are intesting but the nephrologist is paid to worry about them, how you feel is what is important, your last nephroligist is crazy, you will be able to tell the doctor when you are feeling symptoms. I will also state when my labs got bad enough and my doctor said it was time he had me speak to the nurse practitioner and from her I was given great advise on a diet change that kept me off dialysis for several more years so sound diet advise will hep. Check with your insurance you maybe entitled to a visit with a renal dietician. If you do research remember you pre dialysis diet will and should be completely different than your post dialysis diet. While dialysis is not that bad pré dialysis days are better. Make the most of them. It's not good that you have to join but it's better to share the dialysis lifeboat with the people who join here. So welcome.
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The strange thing about my last nephrologist is that she was my nephrologist for the past 18 years! What happened? All was well until ObamaCare came out. Then she changed. For example, she used to prescribe hydroxyzine for itching. After Obamacare came out she said that she could no longer supply it. She said she could be thrown in jail if she does! So see your GP for that. She pulled the same thing with my Demedex diuretic. She said since it's not a kidney med she can't prescribe it anymore. Now hold your horses here, missy. I don't have Obamacare, I have a regular PPO insurance policy. This situation got so bad I started to refer to her as "Dr. No".
She'd go on about how much money she had to spend to take Obamacare, she had to upgrade her computers, worry about what patients get what treatments, etc. Then after this surgery I had I realized that she had absolutely no interest in my care and that basically she's being a hard ass about everything.
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I use my nephrologist as my GP at the medical group I use the Nephroligists work as GPs for a few patients mostly pre dialysis people.