kidneys-versary

[MartyVA]

Happy Kidney-versary! Today is the third anniversary of my life changing kidney transplant. I was blessed with a receive an anonymously donated healthy kidney. I was three months away from aging out the program at my transplant center when I got the call. I couldn’t believe this was happening to me.

The day after the transplant I woke and immediately knew my life had changed. I knew my job was to protect and keeps the gift I had received healthy and safe. I immediately said a prayer and thanked the person for their unselfish sacrifice and vowed to pray for then and never forget what they had done for me. I wrote to that person but never received a response. To this day my thoughts and prayers are with the donor.

The kidney continues to work beautifully. My numbers continue to be consistently stable and I continue to do my part to ensure things work as expected. I exercise regularly, follow my renal diet, and for the most part listen to my care team. However, despite my best efforts I have had small setback.

About a year ago I started feeling a little nauseous at various times during the day. Long story short, I was able to link the nausea to times when I was hungry. As soon as I ate the nausea would go away.

I mentioned to my transplant coordinator and we tried adjusting my meds but no change. In fact things got worse for awhile. I also saw my gastroenterologist and we also tried things, but nothing helped. Finally, I requested a colonoscopy and endoscopy just to make sure there were no issues internally. My father died from stomach cancer at age 56.

The colonoscopy was clean. The endoscopy did not find any issues with my stomach. They did find an inflamed area in my esophagus. It was Adenocarcinoma, cancer of the lower third of the esophagus. A second endoscopy with ultrasound failed to find the cancer and a pet scan also did not show cancer anywhere.

The oncology team in my hometown referred me to Johns Hopkins (JH) cancer center in Baltimore where I have been since Feb. 6. It was confirmed at JH that there is a small area in my esophagus that needs treatment. Fortunately, it was found early so surgery will not be required. I was referred to JH because if surgery was required, I need to be at a facility that had both a transplant team and a thoracic surgeon.

Other than the nausea I have not felt sick at anytime. I feel fine, except for the days following the chemo. If it hadn’t been for that feeling of nausea who knows what would’ve happened long term. BTW the feeling of nausea had nothing to do with the cancer.

I’ve been in Baltimore since Feb. 6. I’m scheduled to leave on March 17. I will receive radiation five days a week for a total of twenty eight treatments. The radiation sessions are only fifteen minutes long. I have had no symptoms or reactions to the radiation treatments

I also receive weekly chemo treatments. Each chemo session is two and a half hours long. I receive four pre chemo meds to prevent reactions to the two chemo meds cocktail I receive. It takes about two days to comedown from the chemo meds. Reactions to the chemo are mostly fatigue, joint pain and mild a stomach ache.

Thanks to the American Cancer Society (ACS) my wife and I are staying at an ACS Hope Lodge in Baltimore. Cancer patients at the many cancer treatment centers around the country are eligible to stay at ACS locations for free.

Please pay attention to your body. Our bodies are always telling us something. My apologies for the lengthy message.

[LisaSnow]

Thank you for sharing your story and the reminder to be diligent. Great news that cancer was caught early! I wish you a speedy recovery.

[Eyak1971]

May you and your wife be blessed with many more years together. Time is something we often rush, but each moment is a time for a miracle. Sharing those miracles gives others hope that theirs may be around the corner. Unplanned and unexpected.

[MartyVA in reply to Eyak1971]

Exactly why sharing our stories is so important. Never give up, there’s always hope.

[PuggyWuggy]

I am sorry you are going through so much right now! I am happy that you listened to our body and persisted in finding out what was going on. You were able to catch it earl and thus have given yourself the opportunity to bat it. You are strong and you are blessed. You can do this! Happy transplant anniversary!🥰

[MartyVA in reply to PuggyWuggy]

Thank you so much for your response. I’m looking forward to many more years of celebrating my transplant. Hopefully, my story will give others hope and the inspiration to never give up.

[wonderingjen]

Congrats to you for your healthy kidney and treating the cancer! So much to celebrate. Happy kidneyversary! 😊

[MartyVA in reply to wonderingjen]

Thank you. So much to celebrate!

[wonderingjen in reply to MartyVA]

👍😊

[LavenderRabbit]

Great story! I’m so glad that you got a kidney and that you found the cancer early.

I have a question about your story. You wrote:

“I was three months away from aging out the program at my transplant center”.

I have never heard of this. Were they going to throw you out because of your age?

[MartyVA in reply to LavenderRabbit]

Initially I was told that there was not age limitations. As long as I continued to take care of myself and followed their instructions I would continue to be on the waitlist. I was scheduled to meet with the surgeon who would perform my transplant. During that meeting the surgeon mentioned that there was a change in policy and an age limit had been implemented. I was seventy four and eight months at the time of the meeting. I had my transplant three months short of my seventy fifth birthday. I haven’t heard anything further on limitations.

[LavenderRabbit in reply to MartyVA]

Oh. I thought the age limit was for dialysis.

[MartyVA in reply to LavenderRabbit]

No, my mom was in her when she started dialysis.

[GardnerADK]

Glad you are someone listening to your body and pushed to get tests and I'm sorry the cancer was located. The John Hopkins hosp is a top notch hosp to be in though. My spouse had his transplant age 59 over 6 yrs ago and his cancer was 34 yrs before his kidney transplant, so his cancer journey was different than yours. I wish you all the best to take care of yourself.

[MartyVA in reply to GardnerADK]

Thank you. Johns Hopkins’ cancer center is an amazing facility. Every person we’ve interacted with has been very attentive, willing to listen and ensure I completely understand what the plans are and what’s expected of me. Calls and messages are returned immediately. What a difference from my experiences with my local medical team.

[GardnerADK]

Glad you are having a positive caring for your health experience. Continue to heal there and at home.

[MartyVA in reply to GardnerADK]

Thank you. Hopefully, once home the recovery should go smoothly.

[Darlenia]

You're inspirational, Marty! Keep rounding up on the issues that come your way. With your resourcefulness and positive attitude, my husband and I are sure you'll have many good years ahead of you. Please let us know how things turn out for you. Not only is this very educational for everyone possibly facing radiation and chemo treatments down the road, we truly care about you. Hugs!

[MartyVA in reply to Darlenia]

Hi Darlenia. Thanks for your encouragement and support. My wife and I are looking at getting through this and onto the rest of our journey together. Once we complete my treatments, I will provide an update on how things went for me. I understand that it could take three plus months before the doctors will be able to determine how successful my treatments have been. This has been quite a learning experience for us. There are people here who have been fighting cancer or multiple cancers for years. The attitude and positivity here is amazing. I couldn’t ask to be in a better place. Thanks again. Hi to Hubby.

[littlelinda50]

What an amazing story! I am so glad you are so in tune with your body! I have anal cancer and I am the one that found it. My PCP said it was a thrombosis hemorrhoid which it was not. When the tumor burst I knew something was wrong actually I knew from day one! I am now getting a new PCP because all she had to do was talk to my transplant team and they would of said it needed biopsies to make sure it's not cancer. I did 2 sessions of 96 hours of chemo which almost killed me and 30 sessions of radiation. My last PET scan showed very good results and if my May scan is totally clear I am cancer free. My only advice for you is Aquaphor your skin where you are getting radiation. I still have radiation burns on my bottom but doing good. Hugs and so proud you listened to your body!

[MartyVA in reply to littlelinda50]

So happy to hear that you are doing so well. Having my treatments here, John’s Hopkins has been a real eye opener. I live in a town/city that had some real issues with healthcare. We have to be custodians of our own healthcare. We may not be able to solve the problems but we must pay attention to what our bodies are telling us. I won’t fight with a healthcare provider but I do ask a lot of questions. I can’t afford financially or time wise to experiment with possible solutions. I now find that an hour or two drive to see a recognized specialist is worth every mile driven. With the introduction of telehealth I find more and specialist are willing to use it as a tool. Where my local healthcare provider would rather have sit in their offices for an hour or more for a fifteen minute visit and maybe no solution until next time.

Thank you for response and keep doing what’s best for you. Find the best healthcare provider in your area. You’ll know when you’ve found one. Develop that special relationship and you never have to wonder if you are getting the best care possible for you.

[littlelinda50 in reply to MartyVA]

I am on the hunt for a new PCP and hopefully they will do what they say. I just know I have to be on top of things and always be willing to push when it's needed. My health insurance wants to give me a care coordinator but all they ever do is try and make appointments that don't fit my schedule or that are not needed. For some reason they think that since I am 53 and have all these health issues I can't make appointments myself or figure out how to take my medicine correctly. I didn't know 53 was old! LoL

[rabbit75]

💛