Update! (Cancer, dialysis & bypass)

[MPK0706]

75 year old male turning 76 in early July. Started HD dialysis January 2019. Left kidney renal cell carcinoma (3.5 cm) removed by cryogenic ablation in Mid-March. I am now cancer free!!

Successful Quadruple bypass on April 17; now I think I am ready for my July 11th kidney transplant evaluation!

2019 has been nothing but hospitals, surgery and rehab! I give testimony to the power of prayer and the belief that The Lord is with you. I am feeling better every day and doing well on HD! I’ll update after July 11th! God bless!!

[Jayhawker]

Such an encouraging post! Thanks for sharing. I’m finding your post particularly helpful this morning.

I finally saw my new nephrologist yesterday morning. It was an excellent appointment. I’m very pleased and relieved to have shifted to him. In short, he does agree that PD Dialysis is the way to go for me. I’m thrilled with that! He is also adding EPO injections to my anemia treatment plan. Hopefully I won’t be sleeping 12-14 hours a day with this change. And finally, he’s going to start me on an actual potassium binder. That will allow me to eat more potassium daily. I’ve only been able to eat about 1200-1400 mg of potassium a day for several years. I’m looking forward to eating more vegetables!

However, he is also referring me in for transplant eligibility testing. I was somewhat surprised by my reaction to that last night. I think because I’m so exhausted from trying to manage all of this by myself, I found myself wondering if I even wanted to go through more testing.

So, your post is quite an inspiration for me🐶 You’ve clearly been through much more than I have—if you can do this, I certainly can too. And, of course, if I would happen to be one of the lucky ones who qualifies for a transplant; well, what an incredible gift!! So I need to gather myself and arrive for the testing hoping for the best while preparing for any inevitability.

Again, THANK YOU soo much for your post! It couldn’t have come at a better time for me🐶

Marj

[MPK0706 in reply to Jayhawker]

Hi Marj! I understand completely how you feel! When those kind of days confront me I just think how lucky I am to be alive; even with all the problems! I think of all those who love me and want me to improve. I look forward to tomorrow as a challenge and make every day the first day of the rest of my life! I avoid complaining and only think of the positive; even if I have to search for those experiences! Michael

[Jayhawker in reply to MPK0706]

Michael, I do believe that attitude is very important. My dad had chronic kidney disease. He lived with it for over 40 years. His attitude was incredible; positive with a great sense of humor. I know what he’d be saying to me if he was still living. From him I learned, as a child while growing up, how to live well with one or more serious chronic medical conditions. So he’d be telling me to get in for testing; I won’t loose anything if I don’t qualify and look what I gain if I do qualify 😊

I’m not sure how soon the testing will occur for me but I’m hoping it will be fairly soon, ie, within 4-6 weeks or only slightly longer. The hospital where I’ll have this done and the transplant, should I qualify, has one of the shortest wait times for donor kidneys in the nation. So this should move along fairly quickly for me.

I’m sending nothing but good thoughts in your direction! I truly hope you qualify and will receive a donor kidney.

Marj

[mhawk123]

I am so glad you are feeling blessed! Strive forward to the next phase....

[KidneyCoach NKF Ambassador]

Congratulations. I hope your evaluation goes well. Did your nephrologist make your appointment or did you self refer? I ask because most centers want you to be cancer free 3-5 years prior to listing. Also they'll want to do a cardiac clearance as well. Best Wishes.

[MPK0706]

Thanks for the comments! The actual call to the transplant center was self-referred, however, thoracic surgeon, cardiologist, nephrologist and primary all encouraged me to start the process; they did not make the actual call. As far as the RCC is concerned, the interventional radiologist confirmed that the tumor was completely removed and that she would certify that with the transplant team. Also, my cardiologist will give cardiac clearance but he wants to know from the transplant team if they need any further testing; stress test, etc. After all, it was a quadruple bypass! I am trying to do all that is possible to be approved for listing. I will keep you informed after July 11th!!

[MPK0706 in reply to MPK0706]

Hi.. updates!!!

We spent all morning on July 11th with the kidney transplant team! I wanted you to know that pending many medical tests they feel that I would meet the criteria to be placed on the transplant list. If all tests meet their criteria then they will schedule me to be placed on the waiting list until a live donor is found or a kidney becomes available! We were especially pleased because they said that my age (76) would not prevent me from being placed on the list!! We will keep you informed! Thanks for all your prayers!

[Jayhawker in reply to MPK0706]

This is truly good news! Wishing you good test results!!

Jayhawker

[MPK0706 in reply to Jayhawker]

Still waiting for all test results! 28 tubes of blood. Stress test. X-ray. Echo. CatScan. More tests on the way! Will keep you informed!

[Jayhawker in reply to MPK0706]

Wow, you’re a trooper!

I begin transplant eligibility testing in about 9 days; I start the process on Wednesday, July 31st.

I’m still not on dialysis. I’m truly expecting to be put on it pretty much any day now. How are you feeling on HD dialysis?

Marj

[MPK0706 in reply to Jayhawker]

HD is my preferred dialysis. I started January 23, 2019. When working toward TRANSPLANT eligibility being on dialysis actually works in your favor. One of the first questions they will ask is whether or not you are on dialysis. The initial interview is very challenging as they drew 28 tubes of blood, did a complete social history and will give you a list of tests to complete! Following the completion of all your medical tests the TRANSPLANT team schedules a “Board of Review” to decide whether or not you are eligible to be placed on the list. If placed on the list then the wait begins! Let me know how your appointment goes in 9 days!!! Be patient as the process is tedious; but worth it!!

[Jayhawker in reply to MPK0706]

Well, hopefully they will provide some actual patient education while I’m there all day going through tests on the 31st. I’ve certainly got a lot of questions.

If I’m understanding all this correctly, which may easily not be the case, they will count all the time my eGFR has been below 20 toward the wait listing time. (But, again, I could easily be wrong about this.) I’ve been in renal failure since the beginning of January 2017. That’s 2 years and 7 months.

It is definitely odd that I’m still not on dialysis. However, without real fluid retention and with my electrolytes in check I’m still essentially hanging in there...

My BUN has finally elevated to 73 though. So dialysis may not be far off now. I’m planning to start with PD dialysis. Hopefully I’ll find that I feel well on it and will function fairly well.

I see the nurse practitioner at my nephrologist’s office for my next visit on September 9th. I’ll see what she thinks at that appointment.

Jayhawker

[MPK0706 in reply to Jayhawker]

Great plan! I was advised that, after being placed on THE LIST they would count back to first day of dialysis

[MPK0706 in reply to Jayhawker]

HD is challenging at times but, actually, I feel great! If my body retains too much fluid then the procedure removes that fluid and sometimes makes me feel weak. I recover pretty quickly!

[Bunkin]

God is always there to see you through 😀

[Bunkin]

Thank you fir your encouraging post! Continued prayers 😊😊😊