I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kitkatz on July 20, 2006, 09:54:40 PM
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Well I went to the nephrologist today. He is going to write the letter to the transplant people and then off I go to Loma lInda. Let's see what happens next here. The tranplant coordinator said she would get a fax from them before paper work, then she will let me know. I feel pretty good about it. Now we wait.
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Are you Kaiser Kitkatz?
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Yes Kaiser here
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is Kaiser better than Davita? I heard bad things so far about Davita if you don't have private insurance. Which company is the best one to do dialysis through in the United States? I am still Canadian so I wouldn't know and have no way to find out firsthand. :-[
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Kitkatz...it might be neat to compare notes with you. You also have the option of being double or triple listed at UCSD San Diego and UCLA Los Angeles. That is a good strategy to follow for a quicker transplant. I was originally listed at UCLA but got double listed at UCSD which is where the transplant occured. I have a great team at the Panorama City facility. The TX coordinator and my nephrologist there are the BEST. KTX 11/8/2001 and working great.
Angie...Kaiser is an HMO, although they have a dialysis facility or two they are not a major provider....they will however get you a very nice transplant in southern California.
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That is what they tell me. They will not double list you in the same area. UCLA and Loma Linda will not double list me as I will be considered to be on their combined list. In order to be double listed I would have to go outside of the area and go through all kinds of rigamarole to do it with another hospital. I think I will just wait patiently and let this come to me when it does.
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Angie...best dialysis company? It would be impossible to say because there are so many. I think the larger chain companies might be on the lower end of the scale but that is just a gut feeling not based on fact. The unit I used to go to was part of a smaller chain owned by Innovative Dialysis. It is a first rate unit which I didn't realize until I had visited a couple of places in Hawaii and Las Vegas that compared to my unit were pretty ugly. They took good care of me until the magic call came and it was dialysis no more. The absolute best dialysis facility I ever used was in a small town in Germany. The quality of care there was far superior to anything else I ever experienced. Meals and drinks were provided by the unit for all patients while on treatment...pretty cool huh. Looking out the window and seeing the real castle the one at Disneyland was based on didn't hurt either. Hope that helps.
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Kitkatz...after the original listing at UCLA the double listing at UCSD was a breeze. I did not have to go there for an evaluation because they accepted the UCLA data for that purpose. They sent me a year's supply of blood vials and prepaid envelopes for monthly blood work. I would just take those to the unit where the blood would be drawn, paperwork completed, and the monthly sample mailed off. I had never met any of the medical staff in San Diego when the call came. If you wanted you should be able to double list with UCSD as it should be out of your local area. Is D. S. your transplant coordinator?
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Email me and we can talk about this double listing.
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Is double listing only an American thing?
Angie...best dialysis company? It would be impossible to say because there are so many. I think the larger chain companies might be on the lower end of the scale but that is just a gut feeling not based on fact. The unit I used to go to was part of a smaller chain owned by Innovative Dialysis. It is a first rate unit which I didn't realize until I had visited a couple of places in Hawaii and Las Vegas that compared to my unit were pretty ugly. They took good care of me until the magic call came and it was dialysis no more. The absolute best dialysis facility I ever used was in a small town in Germany. The quality of care there was far superior to anything else I ever experienced. Meals and drinks were provided by the unit for all patients while on treatment...pretty cool huh. Looking out the window and seeing the real castle the one at Disneyland was based on didn't hurt either. Hope that helps.
I just wanted an idea and yes that did help thanks :)
basically I want to know what units people have had the best service with since I can't exactly go over the border and see for myself just yet.
hmm... maybe I should make a new post for this?? But where?
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I HAVE BEEN APPROVED! They are sending my paperwork to Loma Linda, as we speak, to the transplant unit and I should be hearing from them soon. Kaiser team approved me and we are moving on with the process. The transplant coordinator says I will have to see pulmonary department for TB treatment for nine months to be sure I do not have TB becasue I have been exposed to it according to the positive TB test I had. Hurray! This moves at a snails speed, so every step forward is good.
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congrats kat!
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I HAVE BEEN APPROVED! They are sending my paperwork to Loma Linda, as we speak, to the transplant unit and I should be hearing from them soon. Kaiser team approved me and we are moving on with the process. The transplant coordinator says I will have to see pulmonary department for TB treatment for nine months to be sure I do not have TB becasue I have been exposed to it according to the positive TB test I had. Hurray! This moves at a snails speed, so every step forward is good.
Congrats about being approved!!!!!!!!!!!!!! I know what you mean that it moves at a snails speed. I began to get on the transplant list mid June and was finally put as active on the list beginning of August. It may only be two months but it sure does feel long....
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An update: I heard from the transplant coordinator a few days ago. All I have to to do is See the Urologist to make sure the urostomy is all working okay and then off to transplant list I should go if all is okay. I am waiting for the appointment from Loma Linda. Hurry the hell up, people! I hate waiting. One step closer to transplant time.
My sister and I talked about ti and she is willing to be checked out as a donor. I was worried about her sick leave and such but she says she has saved enough that she would be paid through the recovery period. Cool, huh. There is love there I think. Once I am on the list she can call in for testing.
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Best of luck! :beer1;
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An update: I heard from the transplant coordinator a few days ago. All I have to to do is See the Urologist to make sure the urostomy is all working okay and then off to transplant list I should go if all is okay. I am waiting for the appointment from Loma Linda. Hurry the hell up, people! I hate waiting. One step closer to transplant time.
My sister and I talked about ti and she is willing to be checked out as a donor. I was worried about her sick leave and such but she says she has saved enough that she would be paid through the recovery period. Cool, huh. There is love there I think. Once I am on the list she can call in for testing.
Great news, Kit. Your sister loves you, to be sure. I am very happy for you.
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That's great! :)
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Good Luck Kit, and remember, we are here for you :grouphug;
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The continuing saga....
I have an appointment with Loma Linda Urology, as part of my transplant work up, scheduled for December 4, 2006, at 2:30p.m.
I have only been waiting for it for two months. But the bozos put it on a dialysis day. It figures! So I had to figure out how to do dialysis and still make the appointment. I am going to do dialysis Mon, Wed. and Saturday of the week before. Then have dialysis Tues., Wed. and Friday of the next week after the appointment. The shit I have to do to make these damned appointments. :banghead;
But one step closer to that coveted spot on the transplant list!!! :wine;
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Ya I am usually told that certain appointments are ONLY one certain days. I get frustrated and tell them "did you know my dialyisis is on certain days too??" :banghead;
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Good Luck , you have a great sister hope all goes well. :2thumbsup;
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Good luck to you Kitkatz! I've got my first transplant interview on the 6th. I've found the only way to get through this is to not look at the big picture, but the small ones. One deadline at a time. Like right now all I see is my surgery next week. After that I will find the next deadline to look at. I can't look at it like this could take 7 years or I would go craaaaaazy :urcrazy; :urcrazy;
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I also have dental clearance for transplant. Mailed that off to the coordinator today. That only took a month of hell to get it done. Four wisdom teeth pulled and had the roots of my teeth cleaned. They did one half of the mouth and pulled two wisdom teeth one week, then did the other half and pulled the rest the next week. Why did I do it so close together? Because I knew I would not go back unless it was done quickly. The hygienist was happy with me when I went back for the one month check up! I will keep up the clean mouth policy from now on. Do NOT want to do that again!
One step closer to transplant listing!
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... One step closer to transplant listing!
:2thumbsup;
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Ya I am usually told that certain appointments are ONLY one certain days. I get frustrated and tell them "did you know my dialyisis is on certain days too??" :banghead;
LOL this should occur to them ::) - but you made arrangements, just jump through their hoops and hopefully you will get on the list soon.
BTW, how wonderful of your sister to offer!
DeLana :grouphug;
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Congratulations kitkatz! Hope all goes well for you.
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Okay, so I went to the urology appointment today. :banghead; This doctor made my hair stand on end. :banghead; He was just a barrel of laughs today...NOT! I got home so frustrated I did not know whether to laugh or cry, so I took 2 benadryl, an Excedrin, and an antibiotic, had some soup and went to bed for three hours! The meds were for the sinus allergy that has crept up because of the 65 mph Santa Ana winds we have been having. The dust and debris kicked up by the winds is just too much fun...NOT!
So anyway they send me home with paperwork. But noone knows who I am supposed to give the paperwork to at Kaiser. Does it go to the doc or the transplant coordinator? And who is going to do all the testing this doctor wants done, Kaiser or Loma Linda. Oh crap!!! :banghead; So the doctor tells me that he wants to run new tests on the kidneys and bladder. A loopogram, a cystogram,and a pelvic scan, plus various bladder tests to see if it still works or not. I am just thrilled to death. :banghead; He wants to check out the bladder which has not been hooked up insdie for 31 years since urostomy surgery at the age of 12. He says it is easier to hook up to the existing bladder with the new kidney than the sigmoid conduit I have. Well shit! If the bladder was good why the hell did they stop using it 31 years ago? Dummy! I am pissed at having more tests and more intrusive tests done to me. *sigh* :banghead;
And then he informs me that I should know I am a prime candidate for cancer of the sigmoid colon attached to the urostomy! Well crap! Thanks doc. :banghead; :banghead; :banghead;If I have cancer anywhere in me, DO NOT TELL ME about it. Kidney failure has been enough of a f**King challenge. :banghead; :banghead; So he wants to check that out.
So I leave the docs almost in tears today, frustrated because they want more tests which means more time off of work with no sick leave anymore. More time waiting while they do tests and screw around. Kaiser will probably run the tests, but will the Loma Linda doc get the answers he needs?? I am to fax the paperwork to the transplant coordinator at Kaiser tomorrow and she will set up appointments. *sigh* :banghead; Stay tuned!
For those of you who have chatted with me in the chat rooms lately, thanks for the support. I am going to run screaming into a field. I am pissed and upset and don't know if I want to do all this testing with the possibility of being told no to transplant. Do I give this quest up? I told the doc I felt like the picture of the head bouncing against a wall today. :banghead; :banghead; :banghead; :banghead;
For those of you who have no idea what a urostomy is....
http://www.ostomyok.org/whatis.shtml
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That just plain SUCKS! all I can say is to just hang in there kitkatz, it has to get better sooner or later.
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:banghead; :banghead; :banghead; :banghead; :banghead; :banghead;
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Kit, if you have posted this before, just say so and I'll look for it. But, what happened at age 12 that you had to have a urostomy? My gosh, that is a huge deal in itself. ???
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KitKatz, we are here for you even with bad news you will make it through okay. You WILL adapt! It will all be ok! You have gone this far! You are a FIGHTER!! Girl we are HERE for YOU!! :grouphug;
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What a kick in the pants! But keep on keepin' on - you're a strong character, and that'll work in your favor.
:grouphug;
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Awww, your a very strong woman kit, were here for you, keep us posted! :grouphug;
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Hang in there - we're here for you! :grouphug;
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Maybe it should be the doc's head banging against that wall. ;D Hang in there.
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Kit, when the going gets tough, the tough get going girlfriend, now get your ass in gear and take those tests, the only things we regret in life are the risks that we dont take!!! You have us ALL here behind you and besides you all the way. Girlfriend, after all this i think you deserve some DelTaco Fries, i am sure they will make you feel a little better, at least i hope they would. And here is a Hug from all of us :grouphug; Hang in there woman and you USE THAT BIG FREAKEN STICK OF YOURS,
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You are 1/2 of a dynamic super hero duo and I know you will make the right decision for you. Whatever decision you make know that we are with you. Hang in there Katz. :grouphug;
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Thanks guys. I was really upset last night and today. I am going to have to wrap my head around a few things and am trying to do it slowly so I do not explode the brain.
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Kit, if you have posted this before, just say so and I'll look for it. But, what happened at age 12 that you had to have a urostomy? My gosh, that is a huge deal in itself. ???
Okay Rerun here are the answers to your burning questions.
I had reflux as a kid from the age of two to the age of 12. I had 2 Y-V plasty surgeries on the bladder to correct the situation, however neither of them worked. One at the age of 2, the other at the age of 10. I was running such virulent infections in the bladder and kidneys they decided to do the urostomy surgery when I was 12. The antibiotics we were up to were injectables and nothing was working on me. So surgery it was. So here Is it 31 years later and the doc says let's look at your bladder. Well, hell if it did not work 31 years ago, what is it gonna do now? Butthead doctors! I have been really lucky with the ursotomy type of surgery they did at that young age. I have not had any real bad medical problems related to the urostomy. Seems those docs did a good job. The doc yesterday asked me where it was done and by what doctors and I whipped out names and places very quickly. Emory University in Atlanta, GA by Dr. Parrot and Dr. Woodard. I was surprised I remembered it. Sometimes I can barely remember my own name. I am going to ask my mother what really happened and see if they jive with my memories. :banghead; :banghead; :banghead; My head is getting tired of being banged against that wall!
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Ya my mom remembers more about my care as a child as well so it is always good to check with her. But you remember a lot and that is good! :thumbup; Sometimes the docs are such buttheads and don't listen enough to us as patients who've been with ourselves every day of our lives! lol Docs seem to like to see first hand themselves incase you are wrong. I hate how they are like that .. but I guess they just want to be safe than sorry.