Just saying hello

[4Evergrateful2God]

Good morning. I have just joined and wanted to say hello and let you all know how appreciative I am that there is a forum for kidney transplant recipients.

[Seanthesheep]

Welcome 👍🏼

[LavenderRabbit]

Welcome

[WYOAnne NKF Ambassador]

We are all here for you! When did you have your transplant?

I am almost 24 years out.

[4Evergrateful2God in reply to WYOAnne]

I apologize for the delayed response, WYOAnne. I’m not sure if I received notification to see when I get a message . I was transplanted last year, March 10, 2022.

I’m impressed with your kidney’s longevity. I’m always looking for the secret. Please share.

[WYOAnne NKF Ambassador in reply to 4Evergrateful2God]

The best advice I can give you, is to be your own advocate! You know your body better than anyone, so if something isn't quite right let the doctors know. For me at first, I got the "eye rolling" routine from doctors until they realized I knew what I was talking about. Sometimes I think they thought I was a hypochondriac.

I had pain over my transplant scar when I was about 5 years out. Dr. ordered CT scan and couldn't find anything. More time passed and pain was still there. Dr ordered another CT, but this time he actually looking at the films. Radiologists had missed it, but there it was...I had an incisional hernia. I needed surgery. No problems now.

About 20 years out I was having pain in my L forearm. It's where there was an AV Graft for dialysis. Nephrologist said he never had anyone have problems with it. Was sent to a Neurologist and found that the nerve was being blocked by scar tissue causing the pain and swelling. So Graft was removed.

Guess what I am telling you is that listen to your body. I have had a wonderful life since my transplant. Just had labs done last week and my creatinine was 0.7 and my eGFR is 88.

[Okralove]

👍

[Aloha49]

Well, I had my kidney transplant almost one year ago. It has been an interesting year. I reacted to the anesthesia with some delirium, and ended up with waist scar tissue from the peritoneal catheter being pulled out. The scar tissue has been painful to this day but getting PT which has helped and walking helps. I am so grateful for my kidney and to all the doctors who helped me, and nurses and friends who made meals for me. The recovery lasted 4-6 months for me and I am still recovering a bit with some pain. And I live in gratitude. Life brings ups and downs even in the middle of a needed surgery.

I have to say that I came to the point living alone that the anxiety and depression became a lot and I had to seek help with medication. I am feeling better with these meds too, another journey. I don't hear much about bouts of anxiety and depression following a transplant but I certainly experienced these. I am 74 yo so maybe my experience was difficult because of my age.

I am grateful as this donor and her kidney saved my life. What a gift!!! I hope your journey is a smooth one and filled with joy and comfort and peace. BB

[4Evergrateful2God]

Thank you for reaching out to me BB. I’m 42 and I received my kidney transplant from a deceased donor last year. I was doing well until I started having pancreatitis, which was caused by the doctors, not resuming me on my prednisone (which I’ve been taking for over 2 decades), so I kind of went into a pancreatic-prednisone-withdrawal attack, and it was very painful. But other than that I didn’t have any complications with the kidney at all. Because I have some other underlying issues those are rearing its ugly head but thank God it’s not affecting the kidney right now and I hope it won’t in the future. So I too have a lot to be grateful for. I give God thanks and praise for life every single day, because no day is promised it’s a gift.

I know that it’s a struggle, especially with transitioning into the responsibilities of having a new kidney. I also went through a bout of depression, and I did not refuse the counseling services of the transplant center. I saw her for a few months until I kind of felt that I was OK . I was assured that if I ever needed more support, she is there. I can always resume my sessions. Maybe you can find out if that resource is available at your transplant center. Always know that you’re not alone even though you may be alone in the house. As transplant recipients we are better off sticking together because it’s a new journey and we can learn from each other. Keep: positive, exercising, eating well and healthy. Because out of 92,000 persons waiting for a kidney transplant, you received one. You Are Blessed! (kidneyfund.org/kidney-donat....

All the best! MM

[Jayhawker in reply to 4Evergrateful2God]

Welcome!

I’m 70 years old as of this past August. I received my donor kidney in mid Bovember last year. I’m about 10 1/2 months post transplant now. Like you, I live alone which has made recovery a bit more challenging.

I have had issues with my right foot throughout my life; it was turned inward at birth and required therapy. I couldn’t count the numbers of sprains and strained ligaments I’ve had in that foot over my lifetime. Anyway, I, again, fell about 3 days before my transplant. I didn’t think much about it at the time as this is so common with that foot. I thought it was just another sprain or strain.

They did the transplant surgery 3 days after my fall. While there have been some challenges with the kidney (I was CMV- with a CMV+ donor so I’m grappling with low WBC counts and CMV right now…), by far the greater challenge has been my right foot. It’s been very difficult to walk on it. I’m using a walker but it’s still a challenge. My podiatrist has confirmed that it is beyond treatment. Physical therapy won’t help. Neither will surgery. The tendons are “done” in her words. Plus my high arches are a further issue apparently.

So, I’ve been fitted for a permanent brace for that foot and orthotics for both feet. I go back to the brace specialist tomorrow. I’m truly hoping this gets me back up and walking securely. Anything that will stabilize that foot should have me walking again. Frankly, I’ll be thrilled even though I won’t have full function of that foot.

Meanwhile, my kidney continues to do well inspite of the CMV. I just had my once a week labs again today. I’ll get the CMV data by Friday. Hoping and praying it comes in within Target range again. If so that will be the fourth week in a row without antiviral meds and CMV in target range. So far we’ve only see it stay in range without meds for 2 consecutive weeks. Any good thoughts you can each send my way I’d appreciate🙂

I’ve had numerous challenging side effects with both Valcyte (antiviral med) and Neupogen (elevates WBC count). I haven’t had to administer Neupogen since July 29, 2023. My labs from today showed a WBC count of 6.16 so I won’t need to inject Neupogen for at least another week. That’s a win! However, I won’t get my CMV data until Fri morning. So I won’t know until then whether they’ll put me back on Valcyte. Of course I’m hoping that won’t be necessary.

So, like many others, I’m finding this first year post transplant to be a bit of a roller coaster ride. And, yes, it’s challenging to manage all of this living alone. Stress has become a constant companion. I meditate. I listen to soothing and inspiring music. I work out on my recumbent elliptical machine. And I remind my dog, Izzy (a little Shih Tzu), that it’s her job to keep me calm. Oh, I’m also a major football fan! Go Chiefs!! So, I watch a lot of football. Really, anything to try to keep me from dwelling on all of this. Basketball will start soon. I’m a major University of Kansas basketball fan so will be focused on that by the r Ed bc of November.

Well, again, welcome to the forum. We’re going to get through our first year post transplant and look back on all of this saying it was 💯 worth it. We’ve been given precious gifts. We’re so very fortunate.

Jayhawker

[Darlenia in reply to Jayhawker]

Hi Jayhawker. It's a great that you're getting your foot stabilized. I don't know if I mentioned this before, but my hubby wound up falling after his transplant. His blood thinner created a brain bleed that required brain surgery. So if you're on a blood thinner, it can quickly lead to issues. His neurologist later told his team to stop prescribing the thinners. So, if you're on a thinner, be particularly careful. We want our "family" here to stick around for a very long time!

[Jayhawker in reply to Darlenia]

Darlenia, I’m not on blood thinners or any blood pressure medication at all. This fall happened before the transplant. Frankly, this ankle has been problematic throughout my life. It was turned inward when I was born. They had my mom do what must have been very crude physical therapy all those decades ago. Anyway, the podiatrist said she was surprised I’d been able to walk on it without a brace all these decades… The oldness is here 😑

Jayhawker

[Darlenia in reply to Jayhawker]

Lordy, my hubby and I feel our age too. We just gotta pick ourselves up and keep on truckin'. You're doing great in that regard.

[4Evergrateful2God]

Thank you for sharing your story Jayhawker. I had high CMV levels at one point but it disappeared after a few weeks on the Valcyte. I have read that vitamin D3 helps CMV. Do you know your vitamin D levels? Vitamin D is important for immunity. If you don’t know your levels, you should ask your doctor for the 25-hydroxy vitamin D lab test . Also ask your doctor about getting sunshine or vitamin D supplements to maintain /improve your vitamin D levels. By God’s grace you will-we will say it was worth it!

PS. I am curious. Have you ever thought about getting a second opinion in regards to your right leg? I wish you all the best on that journey as well.

[Jayhawker in reply to 4Evergrateful2God]

I’ve had two rounds of Valcyte which pulls CMV down but it then comes back in 2-3 weeks after they discontinue Valcyte. I’m currently awaiting labs from this past Wednesday now. This is the week we may see CMV on the rise again if it follows the established pattern. Frankly, if it does follow this pattern there is nothing more they can do with my anti-rejection medication protocol. It’s pretty tense at my house right now.

Jayhawker

[Jayhawker in reply to Jayhawker]

My CMV results just came in. It’s back again. This is not going well at all.

Jayhawker

[Darlenia in reply to Jayhawker]

Ugh.....noooooo! I think there was a gentlemen on this site who also struggled with CMV and eventually had infusions? for it? I hope he pops up to share his journey. We all care about you.