NEW GFR POST TRANSPLANT

[TaffyTwoshoes27]

I was wondering how quickly after transplant the GFR starts showing some normalcy. From my blood test I had yesterday, thursday, I received the results and I was shocked to learn that the day of the surgery, my GFR was down to 8. So after the transplant on January 25th, my GFR is now 57! I am just elated!

I am feeling a bit better as each day passes. At least my edema has finally been controlled somewhat. I thought I saw my ankles this morning but there is a bit of water on them now. I need to put my feet up again. My appetite has gotten better, and I was able to get enough phosphorus in me to make my labs better yesterday so that they decided I don't need something called K-Phos (allegedly NOT covered by Medicare), another medication, as the Phos is coming up quite nicely. As we dialysis patients understand, it is instilled in us to watch our phosphorus like a hawk, so it is a new sensation to eat foods with abandon that have a lot of phosphorus in them!

I get tired towards the late afternoon and have been resting. I'm looking forward to this Saturday and Sunday when I have no appointments. Oh, I take that back, I have to speak to the Occupational Therapist on Sunday. I have a Physical Therapy appointment today, but that is done in my home.

[mandpat]

Excellent news!! So happy to hear how your progress is coming along. Stay strong each and every day.

[RhenDutchess123]

So happy to hear you keep feeling better...and a GFR of 57 !!!...Blessings !

[Darlenia]

Hi! You'll likely get a lot more feedback on your question if you post your questions on the Kidney Transplant forum. (You're currently on the Dialysis page.) Your GFR is good - GFR with one kidney is about half of what it is with two fully functioning kidneys. Your team is probably focusing a lot of attention on your creatinine numbers as they fine tune your medications - tacrolimus, prednisone and more to keep rejection at bay. Stay the course. Eventually many of your appointments will go away and your the days will be all yours to enjoy!

[TaffyTwoshoes27 in reply to Darlenia]

You are correct. When I first posted that I got the transplant, I intended to post it on all three of my groups: kidney disease, kidney dialysis and kidney transplant. I thought it would let me choose the forums on which I posted, but now I seem to be stuck on the kidney transplant group. I'll try to see what I can do about that. Yes, they are focusing on my creatinine. But I was curious how quickly my GFR went up after the transplant. Prior to dialysis, I was fighting so hard to keep it above 15. I was just curious.

[WYOAnne NKF Ambassador]

My lab does not calculate my GFR. Whenever I have them done, lab just reports >60.So, I would think 57 is great!

Everyday will be better than the day before!

Remember to report any issues or problems to your transplant team. "Nip" it in the bud, so to speak.

Take care...

[TaffyTwoshoes27 in reply to WYOAnne]

I wasn't sure that they would even do the gfr, but I looked at the labs pretty closely and found that they did. I think they can be calculated by the BUN and creatinine numbers and that calculation is in Google.

I was putting my pill pack together for the first time on my own last night. My week starts on Saturdays. I was very surprised about how Walgreens, the pharmacy associated with the hospital and actually in the hospital, was about my calling them to let them know that the list I go by had a different dosage on two of the medications compared to what the label on the bottle indicated. The customer service person at the Walgreens pharmacy was more interested in laying blame on whose fault that was then giving me a straight answer about what to do! It was crazy. I had asked early in the conversation to speak to a pharmacist and she wouldn't transfer me.

After that Walgreens conversation, I called the after hours number although it was only about 4:15. My transplant coordinator was gone for the day as he gets there quite early in the mornings and the pharmacist assigned to me with the hospital was gone for the day as well. I called the after hours number and was shocked at that response. All that woman did is transfer me to my Transplant coordinator's extension to leave a voice message! I thought they would be a little more alarmed than that taking into consideration that the medication is so important.

[WYOAnne NKF Ambassador in reply to TaffyTwoshoes27]

Make sure you let your transplant coordinator know! There is no coordinator on call? What about speaking with a nurse on the transplant floor?The problem is it's the weekend, but I would think there is someone that could help with this very important matter!!!

I would also ask to speak with the pharmacy manager at Walgreen's... I would also report how "helpful" the pharmacy tech was. To me this would be soooooo UNACCEPTABLE!!

You are so RIGHT...these meds are vital to maintaining your transplant. This is even more important since this is so soon after your transplant.

[TaffyTwoshoes27 in reply to WYOAnne]

I agree with your perception of the Walgreens' clerk. I did ask for a supervisor. I did ask for a pharmacist. She seemed more intent on determining BLAME than actually telling me what they have done in the past when these situations come up.

She said that the hospital gives them the instructions of what to put on the label and she can't help it if they change their dosage amount. Duh!

I've already had three changes in the Prograf alone. I guess it's just a mentality of the whole system. I ended up making my conversation with her quite short at the end and just said thank you and hung up didn't give her a chance to say anything more. Then while I'm trying to leave messages for my transplant coordinator and the pharmacist that works for the hospital, she tried to call back three times. I didn't take the calls. I don't need more stress in my life.

Please believe me when I say I am NOT the type to hold back on getting to the top rung of whoever I need to talk to. At my follow-up appointment Monday, somebody's going to give me an explanation of why this is the way it is and why there is really no one to talk to at 4:15 on a Friday. I worked for lawyers the majority of my career and I KNOW how to use my words! LOL. 😉

[WYOAnne NKF Ambassador]

How far away is the transplant center from where you live? I would even consider driving there?Go in person with your meds and your list of doses to Walgreens?

[TaffyTwoshoes27 in reply to WYOAnne]

I'm actually not allowed to drive yet. It is about a 30 mi round trip. It's not a bad drive, but my support person is a horrible driver. I'm not really good riding with other people already, but she is a nervous Nelly. So on Friday, I arranged to have rides with the Humana transportation contractor for the next four appointments back to the hospital. I think my transplant partner didn't care for my circumventing her, but she makes me feel so unsafe as a passenger that I just had to do it.I have been a single person taking care of myself for the vast majority of my life. I was divorced at 21 yrs old and although I had dates and so forth, I was never close to getting married again. I simply take care of myself and I've gotten used to that lifestyle.

[WYOAnne NKF Ambassador]

Sounds like you know what you are doing. If there is one thing I have learned thru my whole kidney journey - is you HAVE TO BE YOUR OWN ADVOCATE! In other words - STAND UP FOR YOURSELF!Take care and let me how it all finally works out.

[TaffyTwoshoes27 in reply to WYOAnne]

I realized pretty early in life (I left the home on my own when I was 17 years old and got an apartment). I never have any issues with being my own best advocate. One of the lawyers I worked with for many years handled medical malpractice cases AGAINST doctors and hospitals (Plaintiffs' work.). Boy that's an eye opener. I watch my back in that industry like a hawk. You can't imagine the things I've seen.

[OperationKidney]

It can take some time to see a new, higher GFR. It also depends on the donor's kidney health. I'm elated for you that it has climbed so much already and I hope it gets even better so you can have more energy and feel more like yourself again! With a higher GFR often comes less edema also, and they pump you full of fluids in the hospital to flush the new kidney so the swelling can take some time to go away. Sending you all the best wishes for your recovery 💚

[TaffyTwoshoes27 in reply to OperationKidney]

Thanks for your good wishes. The edema has gotten better the last 2 Days. In fact, I can even see my ankles again! That's a painful little side effect of getting a kidney for sure, but I think if that's the worst, then I can endure it. I was warned by someone that it can go down from what it went up to, so although I hope it will continue to rise, I am quite satisfied with 57.

[OperationKidney in reply to TaffyTwoshoes27]

Yes, don't be alarmed if you see it start to decline. It can fluctuate a lot in the first several months following transplant based on medication dosages and other factors. I'm so glad you're on the other side of this!!

[cs65 NKF Ambassador]

Sometimes the different doses of medication is something you can resolve by talking to the transplant nurse or the transplant pharmacy liaison, if they have one. For example, I was given Envarsus 1 mg and the instructions on the bottle were to take 5 tablets. My dose kept changing after my transplant and the transplant nurse would call after my bloodwork to tell me to only take 4 tablets each day instead of the 5 listed on the bottle, etc. They never changed the instructions on the bottle until all my refills were used up. I just kept track in my transplant meds section of the notebook they gave me as to when the dose changed and what is was now. I guess I was lucky that my transplant hospital had their own pharmacy and my transplant nurses and pharmacy liaison were always on the ball! I also knew if there were no changes to assume it was the same dose until the next appointment. Now after a year after transplant, I still sometimes have a dose change, but my appointments now are every two months. Things will settle down, but I remember right after my transplant I was up and down emotionally and tuckered out by all the things I had to remember to do every day. The appointments, the meds and all the measuring will drop off as you reach each milestone at one month, three months, six months and a year!

[TaffyTwoshoes27 in reply to cs65]

I was simply shocked that they gave us an emergency phone number to call and this is what transpired: I talked to the night nurse person and since it was not really closing time (the instruction book indicated 4:30 pm is the "after hours" not 4:15, all she did was transfer me back to my transplant nurse or coordinator (who I knew to be gone for the day) and allow me to leave a message. That was it. And since the pharmacy that's inside the hospital, Walgreens, was only trying to make an excuse for why the dosage information contradicted each other, I got no help there either. The pamphlet or book that was created by the Hospital's Nephrologists plainly indicates "if you have a problem with prescription drugs, you have to call the after-hours number and get a resolution." I got no resolution and I've only been home a week and this was the first time I was filling my pill packs on my own. It just doesn't make sense to me to put so much emphasis on the medication, rightfully so, and then have no one return my call about which document: the dosage on the pill bottle or the one typed on a sheet that they handed me, is correct.It sort of disappointed me how I received no resolution!

[cs65 NKF Ambassador]

Did you try calling that number and ask to speak with the on call nephrologist? They have to have one, who should call you back. Hopefully you've got this all resolved since it's now Tuesday. I hope you took your pills. Take care, we're on your side!