My transplant is cancelled too

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My transplant is cancelled too

Postby nycpetit » Tue Jul 13, 2004 3:26 pm

I can't even really write it all out right now..but my treatment at that center was never something i was comfortable with..but at the end of the day..it became a situation where neither party was comfortable it seemed with going forward with the surgery

it's my responsibility to find another place to go to...so now I am slave to the phone and trying to find another unit that could operate on me quickly..problem is no place has an opening...and so it's possible while I could easily have avoided dialysis..that I may end up having to do it to because i can't get a surgery date elsewhere

let me just tell you that the healthcare system in this country stinks
nycpetit
 
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transplant cancelled ;(

Postby Elaine » Tue Jul 13, 2004 6:44 pm

Sooo sorry to hear u news Natalie- sadly life full of ups n downs :cry:
Do hope that wont be too long til u can be 'sorted' would be nice to have pre-emptive transplant rather than having to go onto dialyis first :?

But if it comes to it im sure u will cope until your time comes. :wink:

Good luck to u Natalie my daughter is waiting to go bak on transx waiting list soon hopefully shes been on dialyis 19mnths now :shock: and aslo wishes she could be 'sorted' too. You know we are all thinking of you.....

best wishes Elaine UK :wink: :lol: :roll:
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Re: My transplant is cancelled too

Postby LadySycamore » Tue Jul 13, 2004 9:11 pm

nycpetit wrote:I can't even really write it all out right now..but my treatment at that center was never something i was comfortable with..but at the end of the day..it became a situation where neither party was comfortable it seemed with going forward with the surgery

it's my responsibility to find another place to go to...so now I am slave to the phone and trying to find another unit that could operate on me quickly..problem is no place has an opening...and so it's possible while I could easily have avoided dialysis..that I may end up having to do it to because i can't get a surgery date elsewhere

let me just tell you that the healthcare system in this country stinks


You are not kidding. Between people not able to even afford health insurance to the companies cutting costs (and the patient suffering for it), it's crazy. I told my Mom last week that it's amazing what you learn about the industry when you actually need it.

My state renal insurance has cut some costs, and that means it limits them on what they are willing to cover, medicine-wise. For instance, I have to take Renagel for high Phosphorus. In the beginning, the only thing the ins. company needed was a copy of my labs, and the doctor could prescribe as much as I needed. NOW, they will only cover up to 6 tabs a day (two with each meal). I take more than that per day, and they will no longer accept labwork or a doctor's authorization to obtain more. So now, I have to rely on the doctor getting samples from the Renagel rep, and supplement it with PhosLo, which I am not too comfortable with (because my calcium is high also), and I think the PhosLo slightly aggrevate symptoms of neuropathy (which is quite annoying to have).

Soooo, I understand a bit of what you are going through. In Addition, I no longer like my neph team because of a variety of reasons, especially the PD nurse. At first, there were 2 of them. One has recently started a nursing service, so her presence is limited now and the one that is left is a piece of work. I don't like the way he takes bloodwork (sometimes he winds up poking me twice and I wind up with such a bruise on my arm), and now he's swamped dealing with 6 new PD patients and seems to be overwhelmed with work. That, IMO, is not good. He's already forgotten a few things that he was supposed to take care of for me, so now I have to put up with that. *sighs*

Anyway, I'm going to see if I can switch my medical team to a hospital unit (like I was in the very beginning). I only switched from that because at the time, I wanted to go to a place that was closer to home. Now, I need quality care as opposed to location.
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Postby Anne in Va » Tue Jul 13, 2004 9:20 pm

So sorry to learn about your transplant being cancelled. I know from experience how disappointing that is. However I do think it is extremely important you have a good transplant center and responsive doctors you are comfortable with. Surgery is only the beginning. Excellent aftercare is vital to a successful transplant. In the long run this may be a blessing and I pray you will find just the right center for you and your donors needs.

Thinking of you, Anne
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http://www.huhosp.org/transplant/staff.htm

Postby Bruno » Wed Jul 14, 2004 12:49 pm

if your insurance will pay for it ....(mine would not, i have mamsi hmo)

howard university transplant center is able to do the surgery within 3 weeks! the doctor's name is callender and he has been doing this for 30 years now.

good luck and post the results :?
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