6 month transplant anniversary!!! Whoo hoo

[Jayhawker]

Today is the 6-month anniversary of my kidney transplant. All continues to go very well with the exception of low white blood cell count. This has improved some but still comes in between 3.0 and 3.75 with 4.0 being the bottom of the normal range. Inspite of my low WBC count and pulling of bactrim 7 months early as well as valcyte 1 month early, I’ve had no infections. So I’m staying infection-free with mask wearing and lots of hand washing, etc.

I have an appointment at the transplant center tomorrow. My goal at this appointment is to find out what their short and long term goals are for this my low WBC count as well as what I can expect with ongoing treatment, etc.

Otherwise everything looks great. My creatinine is consistently coming n between .89 and .98 giving me a GFR ranging from 61-65 or a little higher. Electrolytes are all in the normal range. The mild anemia I had pre-transplant is still hanging around. I’m taking SlowFR for that. And my hyperparathyroid condition, which predates the transplant, is still hanging around as well; although, my calcium and phosphorous levels remain in the normal range. There is a surgery that can be done to resolve this issue permanently if needed.

Thankfully, no return of the GI issues that flared up last April (pre-transplant). So after dithering endlessly about problems the anti-rejection meds would cause my supposedly already compromised GI track, absolutely nothing. Of course I’m thrilled about this albeit puzzled. The endocrinologist I’ve seen for transplant-related type II issues believes that they misdiagnosed the GI track issue last spring. Who knows… regardless, no problems at all!

I turn 70 Aug 3rd. I honestly wondered if I was too old for a transplant. My body is telling me that I apparently wasn’t too old after all…

Jayhawker

[drmind]

Lots of good news. Thanks for sharing and keeping us up-to-date.

[CKD2-4]

Congratulations on your kidney anniversary! Wishing you many more healthy years!

[Jayhawker in reply to CKD2-4]

I realize I’m just getting started but have been told by my transplant team that 6 months is a major milestone. 12 months is too, of course.

Jayhawker

[GlitterGrlz]

This is Really Great News! God Bless You with a Long Happy Healthy life! Please keep sharing your updates with Kidney transplant!!!

[Darlenia]

Great summary! If you're taking a small dose of prednisone, I suspect it may be helping with your GI tract. Prednisone is often used to combat serious flares of all sorts - gastritis, colitis, etc. It allows for healing to happen, but it's not a cure. When used appropriately, it's a great drug. Keep on, keeping on Jayhawker! I think you're well on your way to have a very good life!

[Beachgirl32]

So glad you are doing well with transplant . You give other hope like me I will be 67 this month and sometimes wonder if I’m too old. Reading your post gives me hope and joy for you.

[WYOAnne NKF Ambassador]

Congratulations on 6 months!! YES...it is a major milestone. Please know too, that it takes your body awhile to get "used" to your immunosuppressants. My white count was all over the place. The transplant center reduced my dose at the one year mark, and seems all was better. I am not diabetic and am living well now at over 23+ years since my transplant. I have been blessed with a fantastic kidney and continue to have a creatinine of 0.9.

Take care and LIVE this life you have been given.

[Jayhawker in reply to WYOAnne]

Yes, they did mention that the WBC count tends to calm down as patients move through the second half of the first year post transplant. I’m certainly hoping that will be my experience. They’ve pulled me off 2 meds to try to elevate my WBC. Apparently I won’t restart either. One is valcyte. The other is bactrim. They have again decreased the dose of Myfortic to try to increase my WBC count. I’ll now only take 180mg in the morning and evening. I asked the doctor if that places me at higher risk for rejection. She said that I’m at very low risk gif rejection. I’m not sure where that data comes from—regardless, I take that as good news overall. Also the hyperparathyroid condition has resolved so I’m off that medication as of today. I’d been told that should resolve with the new kidney but would take some time.

So, everything considered, this seems to be going well. I’m masking and hand washing consistently. This is always important but I suspect more so for me with no bactrim med and my low WBC count. But other than that I’m definitely getting out more and will continue to increase outings now that the semester is over on campus.

Jayhawker

[horsie63 in reply to Jayhawker]

wonderful news

[Herkidney]

congratulations on your 6 month anniversary!! So glad that you are doing well. 🎉

[Hidden]

Congratulations, Jayhawker, on all the positive news! I had low WBC in February and received two injections, called G-CSF. I wish you continued success and great health!☺

[Jayhawker in reply to Hidden]

Can you share a little more about the injections you’ve been on for low WBC count? Is Ben pain ne of the side effects associated with the injections you received?

[Hidden in reply to Jayhawker]

Hi Jayhawker! Although bone pain is listed as a possible side effect I did not experience any pain or any other side effect. I received 2 shots in total 4 days apart. These were enough to increase WBC production and to restore it to normal levels. WBC has been fine since. It was likely that WBC went down due to CMV in my case. ☺

[Jayhawker in reply to Hidden]

Thanks for sharing this.

Jayhawker

[AENEASavc]

congratulations. Thank you for your update. I also have low white blood count. My hematologist put me on neupogen injections 2 x per week. They have raised my white blood count although I still have to be extremely careful. Check with your transplant team about treatment options. I admire your positive outlook.

[AENEASavc]

this is Aeneas again. I am 79. Received the Gift of Life one year and nine months ago at age 77.

[Jayhawker in reply to AENEASavc]

Amazing! How wonderful!!!

[LeslieK]

Great post! Wonderful news about your transplant. I actually had a living donor transplant 2 weeks ago at Ohio State. Lost 35 pounds of swelling and I feel good. I felt better right away. My gfr went from 3 to 50. The transplant is doing very well thankfully. It’s hard to think of how crappy I felt for 3 years with kidney failure and 18 months on home PD dialysis.

Did you have a lot of staple surgical site drainage? Like a bulge then leaking clear fluid that needs to be drained?

Also, does the Tacro or any of your rejection meds make you nauseous? I am all the time.

I also itch like crazy. Not sure what med that causes that.

Your creatinine is very good that’s awesome.

Did you have a uterine stent ?

I have so many questions and it would be nice to have someone that’s been through it already to confirm their symptoms or experience. Thank you.

[Jamok in reply to LeslieK]

Hi Leslie, Congratulations on your transplant! I had my transplant almost 10 weeks ago. I did not experience drainage at the surgical site. What does your transplant team say about this? I’m not experiencing nausea only lower GI soreness and bladder pressure. I itched too until they stopped the prednisone at 1 week out but I have a steroid allergy so that makes sense. I did have a uretal stent that was removed at 3 and 1/2 weeks. I really built that up in my head preparing for a painful experience but it was a piece of cake and I was able to watch the procedure on camera which was pretty amazing. ( I did take a pain pill leftover from recovery prior to the procedure.) The six week mark was a turning point for me and by 8 weeks I was starting to feel more like myself again. I’m learning that recovery is an individual process. I run concerns past my transplant team and check in with this group for sage advice and reassurance as well and that helps me. Happy to share my experience any time! Praying for your continued recovery.

[Jayhawker in reply to LeslieK]

Yes, I had a stint. No problems with removal and no pain meds for that. I had JT tubes to drain fluid around my transplant site for about 2 months after the transplant. No leakage from the incision site at any point. I don’t remember any itching. About 6 weeks post transplant they had gradually lowered my prednisone to the low maintenance dose I’ll be on for the duration of the kidney I think, I supposedly have IBS too but have only had one flare up in my life. No problems with intestinal tract and the meds.

Jayhawker

[LeslieK in reply to LeslieK]

Thank you for such a well written post in response to my questions. I am also building that stent removal up in my head thinking please no the Foley was a mess. That’s good to hear it was quick and easy.

I can imagine your emotions on your donor. I believe if may help the family with their immense grief. What a tough decision to make.

You have a wonderful angel kidney donor that will change your life and probably last a very long time. You are connected to her now and I’m sure you will think of her daily. If you have faith- she’s listening too.

The Tacro is horrible I have so many side effects. My team will hopefully adjust it on Tuesday. The itching has calmed- may have been the Oxy.

Your site seems like it’s healing well. They said clear fluid is normal but it drains 24/7. And the CNP drained it for me too. It’s gnarly looking and makes me nervous. Taking the good with the bad. Please keep in touch

Leslie

[Jayhawker in reply to LeslieK]

I did experience some side effects to meds over the first 3-4 weeks: hand tremors, speech difficulties (almost a stuttering speech fluency), and real difficulty sleeping. My BP ran quite low for the first 6-8 weeks post transplant too. All of this resolved over those initial weeks though.

Frankly, given the meds we’re suddenly taking and the high dosages of them, it is only natural that our bodies need time to adjust. However, through all of that my renal panel data was good and extremely stable. I knew I just needed to give my body time to adjust to the meds and expected that I’d then be feeling pretty good.

It wasn’t long before the incision was healed and the JT tubes were removed. Than the stint shortly thereafter. By that point my odd speech fluency issue had resolved and my hand tremors were nearly gone. I began sleeping through the night.

I have to say that I was just so thrilled to have a working kidney and to have managed to receive a transplant before I was placed on dialysis that I didn’t feel any stress about the recovery process itself. The medical team at the hospital was amazing! It was clear that they were extremely competent. The nurses methodically provided patient education during every visit to my room. The doctors did the same. I have no doubt yours will too. Mine had me ready to go home and take care of myself a few days after the surgery. But that was a Saturday so I was in the hospital until Monday simply because they don’t dismiss patients over the weekend. So the last 48 hours I was in the hospital they had me taking care of myself independently including setting up my meds etc. They provided oversight—I think they have to do that legally—but I was definitely taking care of myself independently. I had 💯 confidence that I’d be able to take care of myself when I got home. Of course, I had help at home for the first several weeks just to be safe. (I live alone so had a few friends take turns coming to stay with me. I also used an in-home care group that helps people get back on their feet following major surgery set up as a backup for additional help as headed. That turned out to be a good thing as I received my transplant a week before Thanksgiving. So, my friends had just flown to visit family for the holidays right before I received the call for my kidney. I used the in-home group when I first got home until my friends returned from visiting their families for Thanksgiving.)

Jayhawker

[Jamok]

How wonderful to hear! Thanks for sharing as this is encouraging. I’ve noticed my white blood cells are suddenly tanking as well. Still normal but low normal. In a few weeks they will test my kidney to make sure it does not have a subtle rejection going on and then hopefully they can lower my meds a bit. Unfortunately, I do still struggling a bit with my stomach, but I had IBS for years prior to my transplant and it seems the medication has exacerbated it plus the surgeon put my kidney on the left side where I have a diverticulosis in my colon. I think the fact that he had to move everything around is irritating it. Hopefully all will settle down. Glad to hear of your success thus far!

[LBatl]

Congratulations on your 6 month anniversary. I also had low WBC; however, 2 injections and I was good. You will be fine as well. Enjoy your gift!

[JEanes55]

Wow Jayhawker! You’ve come a long ways!! I remember when you were on the waiting list! You’ve had so many suggestions for me when I had a problem. I am so happy for you now that you’ve gotten a kidney. And there’s hope for so many others that are near your age too! I’m hopeful myself and inspired by you. Hang in there! You’re so blessed!!

[Jephron]

How long were u on list

[Jayhawker in reply to Jephron]

I was placed on the list Jan 10, 2020. COVID hit in March of 2020 causing shutdowns, etc. that may have lengthened my waitlist time some.

The transplant center initially told me I’d be actively waitlisted for between 2 and 2.5 years—a guesstimate on their part. I received my kidney Nov 16, 2022. So, I was waitlisted for 2 years and 10 months (approximately). However, I was moved from active to inactive status for 5 months due to an IBS flare up. So, in reality I was actively waitlisted for close to 2.5 years. But, again, COVID seems to have created longer wait times at least in my part of the US. It’s likely that without COVUD I’d have received a deceased donor kidney in 2 years or slightly less time. I live in the Midwest where we have some of the shortest wait times for deceased donor kidneys.

Jayhawker

[AndrewT]

Dear Jayhawker,

Great News and I wouldn't 'worry', too much, about the slightly low 'Blood Count', Great news regarding your Gastro Tract too. Is Seventy 'Too Old', for Transplant? You ask.... Obviously NOT! Keep Well,

Very Best Wishes

AndrewT