I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: YLGuy on July 15, 2009, 03:26:39 PM
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I have a question. My kidneys failed at the end of March. I was in the hospital for 17 days and was seen in the hospital by a nephrologist group. The visits basically were 1 of the doctors from the group stopping in each day to say hi for less than 1 minute. Mid April I began in center HD. The doctors would come through about once a week and talk with me maybe 15-30 seconds. I have horrible insomnia and my blood pressure is all over the place and I wanted to talk with a doctor at length. I also have 4-5 people who want to be tested to see if they are a match. I was told that I needed an appointment in office before I can speak to a transplant center. The nephrologist group told me that the first appointment I can get is August 31st. Again, I have never been seen in office. Is this normal??? I called my dialysis center and asked them if there were any other nephrologists that serviced their center. They gave me the name of 1 other office. I called them and they can see me...in 2 weeks. I would just like some input from others who have been at this longer than me.
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I hardly ever see my nephrologist. he pops in to the center every week or so, says hello and do you need anything, then he's gone. I did not wait for them to contact the transplant center, as it is separate from their office. Where do you live? I'm sure that you can find a center near you. I am going to New York Presbyterian in Manhattan, they have an excellent rep. Good luck with your search!
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I'd say get a new one. My neph put me in the hospital for cath and fistula surgery and a week of dialysis. He was at the OR and in my room twice that day and daily afterwards. He father was there (neph) daily also as was the surgeon. Jeez...that's awful. Today the father insisted that I start transplant proceeding whatever it is. Oh one of them visits my center each week and talks to you as long as you want to talk. I'd repeat, get a new one. This is serious stuff.
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You're in SoCal, right Marc?
I saw my CA nephrologist once a month. He was magnificent. I still miss him. If you were closer to Long Beach, I would suggest you contact that man right now.
My experience with SoCal doctors, hospitals, everything is that the waits are ridiculous. Two weeks to wait for a nephrologist seems pretty good to me.
Who told you that you needed to see a nephrologist in-office before speaking to a transplant center? By "speak with" do you mean inquiring about an appointment, or going for an eval? SoCal hospitals were absolute red-tape, procrastinating nightmares, and I contacted four, was evaluated at two. I cannot stress enough that you should choose your center wisely, and get them to schedule an appointment now, because chances are it will be months away. In the LA area, I waited 3-4 months for my appointment at both centers. San Diego would have seen me quite quickly, but by that point, I was all evalled out!
Can't help with what is normal on dialysis - I'm not there yet! Sorry, I feel like I asked more questions than I answered.
Good luck to you! :flower;
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I don't ever remember my daughter ever being inside her nephrologist's office. He came once a week to the unit and stopped by each patient to discuss whatever.
Depending on the situation she was generally told to go to her general Dr. If it was related to her dialysis issues such as low red blood count, lab values not in normal range etc. he would decide what to do.
When Sarah was hospitalized we had the same experience...the Dr.s on rounds would only be there a short period of time. I always requested all of Sarah's blood values each morning so at least I could have some idea what was going on before they did rounds but then you have to sit and wait for them to do rounds. Never knew for sure what time they would show up. I remember it was always a waiting game. Hurry up and do this and then wait..... Every once in awhile you would get a wonderful Dr. who would actually sit down and discuss the issues with you.
I found you can contact a transplant center yourself about getting an appointment set up for an evaluation. All them years I thought the nephrologist's had to refer you. My goal was to get Sarah on the waiting list in each region of the U.S. , but I just started to late on this to help Sarah.
You have to stand up for yourself. Do research on the internet...be informed.
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Never be afraid to fire your doctor. Always try to find an integrative alternative doctor. If a doctor doesn't know anything about natural holistic treatments as well as standard western med he's not the best doctor by far.
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When I was hospitalized and discovered my kidneys had failed in March of '07, the nephrologist first visited me after I had spent the night (I got in late) and spent a couple minutes telling me what they've found and hadn't found, and what the possibilities were, then went on about his business elsewhere. I think I saw him again the next day briefly.
After the hospital, I got a call from him with biopsy results (or lack thereof) and we set up an appointment for about a week later. I should mention that I was in the Santa Barbara area, and getting in to see a doctor seemed less impacted than in the LA area. After that, I had scheduled appointments about every two or three weeks. I hadn't started anything with a dialysis center at that point.
When I moved back to the LA area for half a year to have a surgery, I had to make appointments with another nephrologist. I was referred, and made appointments, and they were all almost a month in advance. The one time I missed an appointment because my car self-destructed, it was rescheduled for 3 or 4 weeks later.
When I started visiting the dialysis center (back in Santa Barbara) after having my PD cath placed, I went in at least every week to see the nurse, and sometimes saw the nephrologist for a couple minutes if we were there at the same time.
Now I'm back in the LA area again, and nephrologist appointments are always 4 weeks or more in advance, but every month I see the nephrologist for a good long appointment at the dialysis center, along with the PD nurse, another nurse, the dietician, the social worker, and anyone else who wants to talk to me. But I don't know how it is for the hemo patients.
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I suggested once we have a care plan meeting, where all the people involved in Sarah's care would sit down and discuss issues related to her care. They said they don't do that. We do that at the nursing home I work at and it is a very good idea.
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I love this website. I really appreciate the responses as I don't have anyone to discuss this with. BTW, I live in the OC, not LA. I was told that I should choose between UCI medical Center, Western Medical Center and St Joseph's. What I have read, St. Joseph's seems to be the best. The added benefit is that I am Catholic. If any of you have additional info on transplant centers I would greatly appreciate that as well.
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When I was diagnosed with ESRD in 1990, I always saw my Nephrologist on a regular basis. As I got closer to dialysis, I was in the office every 4 - 6 weeks. Then, when I started dialysis in 2006, all of a sudden I never saw my nephrologist. I was only having dialysis on Tues and Fri, and it was the late shift, so my schedule was "off" from everyone else in the unit and I seemed to always get "missed". I think in the 8 months that I was on dialysis I saw a nephrologist half a dozen times - and it was some guy I didn't know; I was just some name on a chart. I did not like this at all; I had a long standing relationship with the Drs and staff at my neph's office and almost felt abandoned. I finally called and made an appointment with my neph and was told once a patient starts dialysis they no longer typically require regular office visits. I think it may have something to do with Medicare. Anyway, I explained that I was not able to see a Dr regularly at the center and my doctor left the door open to call any time I had questions or concerns. I still didn't like not seeing my doctor on a regular basis and instead seeing some random doctor for 1 minute once or twice a month (IF I happened to be awake!)
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My neph comes to the center once a week and answers any and all questions and spends as much time needed to satisfy my inquiring mind. When I was referred to my Neph and he diagnosed me with ESRD my creatinine level was 3.9 and I would see him every six weeks and sooner once I reached the 7.0 level and started dialysis I only saw him at the clinic. My first visit with him lasted over an hour as he explained everything to me ( heck, I started looking at the clock after awhile).
My neph gave me the address to the transplant clinic in my area and I contacted them and set up an appointment.
-Mark-
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Marc, I am here in
Albuquerque, NM. and I'm still waiting for over three years to get on the transplant list. My Nerph. comes in the center to see me and all he says is get on the transplant list. everytime he sees me once a month. I know exactly what he's going to say and how long he will be staying to talk. He only stays 3-4 minutes at the most. I've called the transplant center here at both hosiptals and the transplant cord. are all on vacation for a month. I just don't understand if they want you to get on the transplant list than they should be available to talk with you about it. This is like they want you to do the dialysis for the rest of you life because they lose out on the financial cost of you getting a transplant.
Hang in there,
Rivy
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I am totally dismayed by some of the responses. I do PD and see my neph once a month. Even when I had to go on hemo for 6 months and she was one of the doctors who rounded at the clinic, she still saw me twice in the office. Every time I see her I get as much time as I want or need. She answers all my questions. When I said I was interested in a transplant, she referred me to the transplant coordinator, who gave me a list of all the tests I would need and has monitored me ever since. You can say what you want about Kaiser, but it sure works for me!
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We see our neph at least once a month. He is a part of the dialysis center that we use.
My husband's former neph (pre-dialysis) is part of the same group, but once dialysis started we were transferred to the new guy.
Aleta
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This is awful... I wish my nephs were available to everyone who wanted them. First meeting was with Father O and he talked for an hour or so and asked me a zillion questions. Unfortunately (and fortunately) due to his heart attack I transfered to Son 0 and he is always on time for appointments, always stays as long as I want (sometimes I asked so many questions, he says "Ok, three more questions and I've got to go." But he doesn't go.
I see one of the two of them (thank god father 0 is well now) every Monday (or at least once a week if not always on Monday). Both have talked to me a registering for transplant and asked the social worker at the center to help prepared the paper work. Father 0 is on the board of the transplant center and assures me that my age will not work against me. (I'm still not sure if I want it). Son 0 was one of the four people that I credit for getting me on dialysis.
No, I don't want their kidneys! (wrong thread)
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Well, I don't remember ever meeting my nephrologist. I may have 8 months ago when my kidneys first failed but I was too sick to remember. I see one or more of his minions once a month or so in the dialysis center. They see me for 5 minutes, ask the same four or five questions then hurry off to bill my insurance $300 or more. I am always amazed when you guys write that your neph prescribed you this or that. My nephs would prescribe me a band aid if I chopped my leg off.
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Bub, waht city do you live in. Everyone needs a neph that you trust and can depend on. This is isn't right.
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We see our neph once a month, unless there is something serious going on. I would really find a neph that is able to see you as needed (at least once a month). kidney failure is such a serious thing - and being able to discuss things with your neph is so important.
take care!
TJ
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I am in Tulsa, Ok. I love my dialysis center. They have a great staff, helpful and caring ---- just not very happy with the lack of attention from the doctors. I dont feel mistreated just ignored. And sadly I feel much the same way about my personal care physician who would not recognize me if he met me on the street.
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August 31st is a little long for my liking unless this doctor came highly recommended by another doctor I trusted. But two weeks seems very reasonable for a New Patient visit with a Specialist - very reasonable.
Most Specialists will schedule maybe one New Patient every hour because they take longer than Follow-Ups.
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At risk of being accused of being a "homer", I have to offer the other side. My neph gave not only me, but my family, tons of time. He explained my situation, overcame a significant level of deniel (not mine -- I was well aware that something was definately wrong) and offred valuable guidance. After I left the hospital, I was provided his phone number and the offer to call anytime. When I did, he returned my call promptly. During our conversations, he always left me with the impression that i was the only priority he faced.
I know in light of your very negative experience this may not be very helpful especially since my neph is in Canada but with all the poor performances that we all experience -- don't get me started on the dialysis staff that felt it was too much hassle to do the blood tests for my transplant surgery -- it is nice when one "super star" that puts the patient first.
I shall echo the advice of others, get a new neph.
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Sharon's Neph has been a godsend for us, If she is not doing to well, and an office visit monthly is not a wise choice, He will call us and ask what time she will be on the machine, he then drives out to our house (next city) and do a complete workup, will stay as long as we have questions. If she is feeling better and we have a monthly Nurse visit to make, he has us call his office and let them know what day it is and no matter what he will fit her in so we can accomplish both visits on the same day. Any new drugs that are prescribed usually come with a bag full of "samples", that really helps because often enough the drug might cause problems, but we are not out a lot of money for the initial fill........
Tom
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Wow... i've never had this kind of problem and definitely don't think you stand should for it! When I was on hemo my Dr. came around every week and i could ask her whatever I wanted and take as long as I want. Now that I'm on PD, I see my Dr. every month and my nurse every 2 weeks. I can see my nurse anytime I want and if there is something wrong the Dr. will make a special visit to the clinic for me... they've never been unreachable. I'm sorry that's been your experience :(
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I switched doctors. The new doctor came by on Friday during my HD and spoke with me for awhile. I have a in office appointment on Thursday of this week and he gave me his cell phone number in case I ever had any questions. :clap; :yahoo; :thumbup;
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Great news, Marc!
Have you picked a transplant hospital and scheduled an eval yet? Your new nephrologist sounds like a keeper! :cheer:
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I was told by my social worker on Friday that the doctor sent my information to St Joseph's hospital. My social worker is funny. She comes and talks with me for a long time. The only thing she wants to do is pick my brain about her mortgage. (I have my California DRE license and worked in the mortgage industry for too many years)
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My nephrologist comes to the clinic every Tuesday , he talks to me like I am an idiot. I have been diagnosed 39 years now in the kidney area.Yesterday he comes in and I ask him to lower my heparin cus when I bleed it is like water. He refused to and he pointed to my bottle of home aid ice tea and said it coke. Gee I know better than to bring coke in there. There is a guy on dialysis that is in isolation that brings a 20 oz Pepsi or coke in and drinks it while on the machine. I was in a good mood till my nephrologist came in. Oh the biggest laugh I got was last week they said my TRANSPLANTED KIDNEY which I rejected at one time was 60 % is more than likely gonna start again cus my creatine is 3.7 this month and when I was in the hospital it was 2.3.If the TRANSPLANTED KIDNEY is gonna work again isn't the creatine going the wrong way. Besides I been off my anti rejection drugs since September. I am at the point when they say stuff like that I smile and nod my head and think yeah right. :stressed;
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:clap; :2thumbsup;
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Glad to hear you got things straight. My neph at my center has been great. The other doctor who comes for other patients doesn't look like he gives a rip. He comes by and may say hello to them and typically doesn't even ask if they need anything. I feel bad for them because most of his patients are elderly and don't really say anything. I have seen the techs go grab him and bring him back to the patient and tell him what is going on with them.
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The old neph made his sweep this morning. I watched him do his 10 seconds with each patient. Then he grabbed my file and walked over to me. I looked at him and reminded him that I had switched doctors as he was too busy to see me. He agreed that his office was booked and moved on. Kinda weird.
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My neph group comes into the clinic weekly. I could not ask for a better group they are truly caring and always have time for "us"
We have a lady in the clinic daily who is our transplant coordinator. I guess I am pretty lucky by some of the post I have read.
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I have a question. My kidneys failed at the end of March. I was in the hospital for 17 days and was seen in the hospital by a nephrologist group. The visits basically were 1 of the doctors from the group stopping in each day to say hi for less than 1 minute. Mid April I began in center HD. The doctors would come through about once a week and talk with me maybe 15-30 seconds. I have horrible insomnia and my blood pressure is all over the place and I wanted to talk with a doctor at length. I also have 4-5 people who want to be tested to see if they are a match. I was told that I needed an appointment in office before I can speak to a transplant center. The nephrologist group told me that the first appointment I can get is August 31st. Again, I have never been seen in office. Is this normal??? I called my dialysis center and asked them if there were any other nephrologists that serviced their center. They gave me the name of 1 other office. I called them and they can see me...in 2 weeks. I would just like some input from others who have been at this longer than me.
When Jenna was on dialysis she saw a nephrologist in the clinic (not at a hospital, it was an independent center.) There was no referral or communication at the center regarding a transplant. (And looking back, it seems like the dialysis unit was not motivated to lose a paying patient, so they really weren't in the business of supporting any move toward getting a kidney for Jenna.)
When we went for a transplant evaluation she met with a transplant team which was at the hospital and comprised of a social worker, surgeon, nephrologist, transplant coordinator, insurance coordinator and psychologist. Each step of the way through this process was initiated by us. No referrals were required. She was listed at 3 centers in 3 different procurement areas when a living donor came forward from Ohio and was approved.
If I were you I would contact the local transplant hospital to get approved. They can then begin looking at your living donors. Good luck!
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My nephrologist has a good thing going: He is also williing to be my Primary Care Physician. Which is OK by me; nephrologists have to know internal medicine anyway.
So I ask him about all kinds of health issues, not just kidney related. Once, i asked him to put on his Primary Care hat and I asked about what I thought was something totally unrelated to my kidney disease, but he said that it was related to my kidney disease. So I asked him if he would write me a referral to himself. ;D
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So I asked him if he would write me a referral to himself. ;D
:rofl;
Some day it will come to that!