Kidney transplant

[239227]

My husband received a kidney transplant from a deceased donor last month. He is doing well. Hopefully it will continue that way.

[Jayhawker]

Wishing your husband a good recovery! You and he will now start the process of learning about anti-rejection meds and so forth. I found it to be a fairly steep learning curve at first; a little overwhelming. But it gets easier to navigate everything over time.

Jayhawker

[239227 in reply to Jayhawker]

It's true it is definitely overwhelming. Hopefully it will get easier.

[Jayhawker in reply to 239227]

It will get easier. Of all crazy things, it’s been grappling with my prescription medication insurance that has been the most time consuming. For several months I’d find myself having to spend close to 4 hours a month on the phone with the specialty medication pharmacy. Everything is mail delivery for the specialty meds (the anti-rejection meds and an injection I’ve had to start self-administering due to low white blood cell counts). It was frustrating and exhausting. To this day I still spend at least 2 hours a month on the phone with them. Ugh!!!

But you’ll g et this figured out. It’s truly such a blessing to have a working kidney!

Jayhawker

[Denise-80 in reply to Jayhawker]

Oh wow, same here! I was at 45 - 60 mins every single month on the phone for years just trying to fill prescriptions. It’s crazy! They are the same meds each month! Last year, my insurance changed to Walgreens Alliance Rx as the mail order pharmacy, which allows online filling of speciality meds. Now it takes 2 mins tops.

[Jayhawker in reply to Denise-80]

Yeah, when I retire I’ll likely be able to find a prescription Med insurance carrier that will allow me to work with Walgreens Specialty Pharmacy. But my work prescription insurance is through CVS. They only allow us to use CVS pharmacies. Ugh!!

Jayhawker

[Darlenia in reply to Jayhawker]

CVS was terrible for my hubby's prescriptions. After two frustrating (dangerous) months, we switched to another local pharmacy. It takes care of all prescriptions except for Envarsus because supply chain issues popped up with that one. Our transplant center specialty pharmacy came through for us at the last minute for that one; our transplant center routinely fills it now. Interestingly, Walgreens specialty pharmacies can also work with "durable goods" prescriptions. For example, if one winds up wearing a Libre or Dexcom glucose reporting system, Walgreens may be able to work with that. But my hubby found the big diabetes "durable goods" online insurance companies are far better with communication, processing and supply. We just wished we had known all this in advance. Live and learn, right? Thankfully, we're very grateful that our insurance plans cover our meds, we pay very little out-of-pocket.

[Jayhawker in reply to Darlenia]

I have never been so frustrated nor had such difficulty working with any insurance (and their mandatory pharmacy) as I have been with CVS Specialty. And, yes, the first 2 months post transplant were absolutely dangerous! I’ve actually reported them to my state health insurance board and our state insurance commissioner with the hope that they will select a different insurance company for prescription meds for state employees next year. I’m also researching right now to find out who to report them to to try to get some outside oversight. There has to be some regulatory agency for these pharmacies. I’ve documented everything!

I live in Kansas. Kathleen Sebelius is the former secretary of Health etc with the federal government. She set our healthcare health insurance system in place in Kansas. This was well enough regarded to result in her appointment as the US Secretary of Health… I know her and am just about ready to contact her. This isn’t just for me, it’s for everyone! Honestly, enough is enough!!!

It’s frustrating. It’s stressful. It’s extremely time consuming. But most importantly, it’s dangerous!

Jayhawker

[AENEASavc in reply to Denise-80]

I found mail order cvs silver script to be an unbearable hassle. I switched to my local pharmacy and have no problems getting my messages. I hope you were able to solve your issue.

[Mandelin in reply to Denise-80]

I had to go through Walgeeen Alloance for mine and I was on the phone every day with them. I almost didn’t get my meds on time. They wouldn’t fill them until 4 days before they were due. I stopped and use GoodRx at my local pharmacies now. I don’t go through my insurance.

[Denise-80]

I’m glad to hear your husband is doing well. I had my 9 year anniversary just last month. My donor was deceased as well. You will find this site very helpful.

[239227]

Thank you. Congratulations on your 9 year anniversary!

[Seanthesheep]

Congratulations. Life begins again. I am almost three years post transplant. 72 years old and feeling great. I am fortunate to live in the UK so NHS deal with meds. Don’t need all that admin stress when you are trying to get your life going again .Good luck.

Sean

[239227 in reply to Seanthesheep]

Thank you. Glad to hear you are doing well. You are lucky to live in the u.k. In Canada our private insurance pays part of it and the remainder we have to claim through a program called trillium.

[Frida2013]

Congratulations, good health and good wishes to your husband.

Reading these replies I feel so fortunate to live in the UK as regards to medication, our NHS isn’t perfect at the moment though I can honestly say I never have any problems but I collect my meds from a pharmacy each month and tacrolimus delivered to my home as and when needed no payment required .

Again, very good health for your husband’s future.

[239227 in reply to Frida2013]

Thank you. You are fortunate to have a great medical system.