I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kristina on November 09, 2021, 09:56:27 AM
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Hello kidney-transplant-anti-rejection-medication-receivers,
I would like to know, how other kidney-transplantees receive their anti-rejection-medication? Do they receive it straight from the transplant-clinic at every visit or is it delivered to their home, or do they receive their medication at their local pharmacists, or their local doctor GP?
My transplant-medications are supposed to “get delivered” to my home and it is sometimes getting extremely complicated, in fact, sometimes I almost feel as if I need at least a PHD to be able and follow these complicated instructions and I sometimes also feel lost to understand “the system” as such.
For example: my anti-rejection-medication is being prescribed at “my” transplant clinic at every visit. The prescription then goes to Northampton (over 67 miles away) and from there it has to be re-assured again (by telephone/e-mail etc) from my transplant-hospital to be delivered from Northampton to me and then my anti-rejection-medications are eventually being delivered from Northampton to me and yes, as you may have guessed already, it seems extremely complicated and very difficult to understand and even more difficult to work...
For example, I have been waiting for the last four weeks for my anti-rejection-medication to be delivered and this situation keeps me rather tense at all times and it certainly keeps me guessing and “on my toes”…
Isn’t life complicated sometimes? :(
I wonder how “things” about their anti-rejection-medication happen with other kidney-transplant-people? I mean, when you have to wait for your anti-rejection-medication to arrive for such a long time and with such complications, without any certainty etc., and without any re-assurance of arrival in time etc. a heart-attack as a “little extra” for the transplant-patient is not the unimaginable, is it? :'(
I also would like to know, how many weeks of medication have you left before the next anti-rejection prescription/delivery?
Many thanks again from Kristina. :grouphug;
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My prescriptions are prescribed by my nephrologist at his private practice (but he works for the center as well). Those go to the pharmacy of my choice. I continue working with the pharmacy that my prescriptions were sent to originally - when you get out of the hospital initially you would get your prescriptions at the center, dropped off by that pharmacy, later they moved it to the pharmacy location (same) that's in the bottom of the building. Pre COVID I continued to use that location and pick it myself, during covid they started shipping them to me. I have some slip ups where I forget to re-order or don't judge what I have left and I have to let them know I need it soon, otherwise usually we touch base in advance and get my order setup about a week out. I pay more to stay with that pharmacy as my insurance wants me to go to their own online option - but I prefer the high touch offering at this pharmacy and am happy to pay about $15 extra per month to stay with this one.
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My transplant clinic is about 2 hours away, in another state, so I make use of their mail order pharmacy.
Each month, I get a call from the mail order pharmacy, telling me it is time for the three anti-rejection meds I take to be refilled. They ask me how many days left of meds I have. My answer is usually "one week". They verify my three meds, my name, my address, and my insurance coverage.
Usually the following day, I get an email from them saying that my meds have been sent via UPS, and I get a tracking number. They are delivered within 3 days of the initial phone call.
I've never had problems getting my meds except for two months ago when UPS mislabeled the package. That's a whole 'nuther story, but it worked out in the end.
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Many thanks for your kind thoughts, Iolaire and MooseMom and I do appreciate it very much.
I shall now try to find some logical help in order to find a positive way forward with this meanwhile 3-year-old-problem of mine to receive my medication without too much unnecessary "noise" and less hassle about it. ::)
Perhaps all this affects me so badly right now, because everything at "that particular place" seems to be destined to go wrong for me and my usual calm and collected logical thinking seems to be battling with people who seem to be engulfed "up to their ears" in "protocol" (whatever that may mean) and sometimes, like today I just feel exhausted, tired of "them" and totally exasperated... and I certainly wish to be at another place, where logical thinking still might be appreciated ... ::)
I honestly fail to understand why "some people" make such tiny simple little things in life so unnecessary complicated in such a confusing way, that after a little while no-one knows anymore where they stand and/or what's actually going on ...
Many thanks again, Iolaire and MooseMom and it becomes pretty obvious to me, that, in order to keep my sanity, I urgently have to apply for some assistance ... ::)
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Why on earth do your prescriptions go through Northampton, Kristina? Does your transplant hospital not have their own pharmacy? Apparently not!
Now, I do take other medications that are prescribed by my GP, like a bp med and a statin. I took those before my tx. My local pharmacy is Walgreens (which now owns Boots), which has many locations throughout the country (like Boots). Walgreens has a home delivery mail order service that is based in Arizona, and I use that service for my non-tx meds. I manage all of my meds from Walgreens online; when a prescription is about to expire, Walgreens will communicate with my GP and request a new script. Do you think there is a way to go through Boots to get your anti-rejection meds? (I could use Walgreens' mail order service for my anti-rejection meds if I wanted to, but I prefer using my tx hospital's mail order service.) Or, is there a Boots near enough to you that you could just drop by and pick them up?
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Oh goodness kristina, I am just dumbfounded at the complications you encounter at every turn!
I simply pick up my transplant meds from my local pharmacy around the block. I prefer to get my refills completed by the transplant center so they send me off with a paper script, I drop it off at the pharmacy, and then just pick them up whenever I need to. (And in the case I am dummy and forget to ask, my local nephrologist can approve a refill.)(* I go to the tx clinic 2x per year).
It's not even that complicated for my husband's new medication that is a biologic (some kind of monoclonal antibody) that comes from a pharmacy out of town. When he has his dose, he rings them to say, "Hey, I had my dose." The customer service people will ring and say that he is due for his next dose on X date, shall we send it by FedEx for the X date?" Sure enough, on that date, we get a FedEx delivery with kilos of ice packs for one syringe! Easy peasy.
Not sure why your meds have to take le grand tour to reach you!
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Yes, Kristina the roundabout way you're getting your meds seems incredibly inefficient. I'm sure there's reasons that this is so but that doesn't mean they are good reasons. I hope you have some options because to wait so long for anti-rejection meds is anxiety provoking, or it would be for me. I am still using the specialty pharmacy my transplant hospital uses. They are spectacular. They call me every month to arrange to ship my meds to me. I'm about 2 hours away from NYC. It's not the sticks but sometimes it seems like it. For about 5 years they used UPS and that was no problem. They switched to FedEx for awhile but FedEx sometimes has trouble finding my house, so that wasn't great. About a year ago they switched to some kind of Med taxi service. My pharmacy takes care of all my refills on my anti-rejection meds and deals directly with the clinic. Over the years (I'm 7+ years post transplant) I have accumulated a reassuring cache of my meds. Then they dropped my tac from 1.5 mg to 1. I was afraid my .5 mg caps would expire so I used them up by taking 2 of them to make up 1 mg. This wasn't my best idea because 6 months later the doc switched me back to 1.5 mg and there was a frantic back and forth on the part of my specialty pharmacy to get me the .5 mg caps. Also, I ended up with an even bigger cushion of 1 mg tac caps. Even though I am always over thinking everything, the thinking isn't always that great.
I hope you will be able to improve this situation. Best of luck.