18 Month Post Transplant May 16th

[Jayhawker]

Good afternoon,

I’ll be 18 months post transplant this week on May 16th. As some of you likely recall, I’ve had a pretty tough road due to CMV followed by a T-LGL leukemia diagnosis at the beginning of December 2023.

However, things are looking up. Over the past 2 months I’ve felt and functioned much better. My strength is back. I’m no longer dizzy. While I have been fortunate not to land in the hospital as the CMV raged through my body, I just didn’t feel well. I was incredibly weak. It felt like I had continuous mono with a severe case of the flu. But those days are behind me now.

For the past 2 months I’ve woken up earlier in the morning (about 7am). I’ve had energy and was ready to get up and start the day. I’ve been back to normal as far as cleaning my house and so forth. I just feel well.

I’ll see my regular nephrologist in July for thd first appointment since the transplsnt. Another milestone…

it’s been a long road and one that has not been easy, but given how I’ve felt the past 2 months I believe it has all been worth it. It’s just so good to be consistently feeling well now.

Jayhawker

[drmind]

OMG. This is so good to hear. Congratulations, blessings, good wishes, and everything that is wonderful. I know it was a journey and you rode it well. Thanks for sharing this.

[Bassetmommer]

Yeah, This is great news. I am so glad you are feeling so much better. I hope that you now can enjoy the life you deserve.

[WYOAnne NKF Ambassador]

YES!! I am so glad that things have turned around for you. Now, you can feel well and start living your 2nd chance at life.

I was in the KC area (Odessa) last week for my oldest grandson's high school graduation. Now we have the over 800 miles back to Casper, WY.

Take care and so happy for you!

[Jayhawker in reply to WYOAnne]

That is quite a trek from the KC area to WY. I taught in western Kansas on the Colorado border my first year teaching. It’s pretty desolate and sparsely populated out there. Western Nebraska isn’t a lot better. I’m sure it is worth it to see your oldest grandson graduate though.

Jayhawker

[WYOAnne NKF Ambassador]

Take care my friend!!!

October 15th is my 25th transplant anniversary! Hope you have gotten thru all the problems there are those first couple of years and now can lead your LIFE. Going with family in September to Banff and Jasper. Then in December are doing a Rhine River cruise with Viking. Going with my college roommate & her husband. Cruise from Amsterdam to Basil Switzerland.

Enjoy your transplant and your retirement.

[Jamok in reply to WYOAnne]

Congratulations! Your story is so encouraging to us, fledgling transplant recipients.

[WYOAnne NKF Ambassador in reply to Jamok]

Thank you so much!! I really think that part of the "trick" is always to report any problem or issue to your nephrologist , even if it makes you sound like a hypochondriac. Till I found the right primary and nephrologist that believed in me, had a doctor that rolled his eyes when I complained about something.

Take care of yourself and your kidney!

[RavaSpirit in reply to WYOAnne]

Amazing! I am aching to travel again, especially internationally. Though I am still a fledgling transplant recipient as well. Thank you for sharing your story! How do you approach international travel now as a transplant patient

[WYOAnne NKF Ambassador in reply to RavaSpirit]

I pretty much travel as I did before my transplant. All of my meds are always with me, not in checked baggage. I wash my hands every time I turnaround. My meds - I adjust to whatever the time is to where we travel. So in December we are flying Denver to Amsterdam and taking a Viking cruise down the Rhine visiting Christmas markets. I will take my pm meds on plane and when we land it will be morning in Amsterdam so will take am meds. I flew to Europe with my husband in 2005 and had no issues.

Double check with your nephrologist, but you should have no problems traveling out of the country. Always take a copy of your medication list with you. I have had all of the COVID vaccines. My doctor says the key is to wash your hands frequently.

Happy travels!!

[Jayhawker in reply to WYOAnne]

When I traveled internationally before my transplant I also took letters from my doctors verifying my medication prescriptions and dosages. That was required when flying into the country I visited.

Jayhawker

[RavaSpirit in reply to Jayhawker]

Thanks WYOAnne & Jayhawker ! Outside of medications though, how did you deal with food and water cleanliness and safety? The team I worked with during recovery drilled very hard on the consequences of getting GI related illnesses. That's one of the hurdles I'm not exactly sure how to approach

[Jayhawker in reply to RavaSpirit]

My travel was pre-transplant. At this point I’m still not eating away from my house. I’ll gradually work up to that over the next 6 months or so. I definitely will eat at good quality restaurants though—no chains or fast food. I think a chef with a quality reputation is my best bet on the food safety. However, if I do travel internationally within a year I’ll message ahead to the hotel to let them know about the transplant and food issues. I’ll ask them to have recommendations for restaurants where the chef can assure the food meets the requirements. Of course it’s up to me to order appropriate options. But most restaurants and hotels are willing and able to handle stuff like this. They have immune compromised clients regularly. Of vourse I’ll mask on the plane snd very likely most places I go. (I’m hoping to take a trip to Scotland in the next year.)

Jayhawker

[Jamok]

Oh Jayhawker, this makes me so happy!!

[LavenderRabbit]

I’m so glad you are doing better! You had a rough time of it.

[Darlenia]

This is absolutely wonderful! Sometimes one thinks the worst...and then this happens! You've given a lot of people a lot of hope and optimism. May the good times roll on and on!

[ChristopherW]

Jayhawker, i too had CMV and was close to being moved to intensive care.

When i recovered my Dr said it was known as 40 day fever as it tended to occur 40 days post transplant. He also said that, and they didn't know why, that people who had CMV tended to have long lived kidneys.

Here i am, nearly 43 years post transplant, and my kidney is still going strong!

Hope you get the same luck.

Chris

[Jayhawker in reply to ChristopherW]

Wow! 43 years is incredible!

Jayhawker

[taar]

That is good news! Well done. Keep it up.

[horsie63]

I was wondering how you were doing. I'm so glad things are looking up.

[Parkerbarker]

Well i hope you recovery continues, im still trying to kick the cmv,and even with that horrible forscanet for threes months that almost killed me literally to 2 months on marivibar my number still hovers around 600 in viral load,i have finished the marivibar 2 weeks ago and i tested for the cmv last thursday so waiting for results.I have good days and bad days energy wise but yeah last 22 months sure have sucked since transplant

[Jayhawker in reply to Parkerbarker]

I have wondered how you are doing . I know these viruses are difficilt to get past. The anti-rejection meds only make that worse as our bodies have a compromised immune system so less WBCs to combat the virus. For quite a while my viral load hovered around 500. The good news with it in that range was it was unlikely I would need to be hospitalized. But as I said in my initial post I just didn’t feel well… are your doctors still working to pull your vital load down further or are they satisfied with it in the 600 range?

Jayhawker

[Parkerbarker in reply to Jayhawker]

I have my appt on may 28th with transplant team.They put me on sirolimous as they said some studies show something in it can help fight cmv

[RhenDutchess123]

So happy to hear from you and that you are feeling better...Enjoy !

[GardnerADK]

Thanks for sharing all this Jayhawker and I'm glad to hear you are feeling much better. My spouse had CMV after several prior serious kidney transplant problems including a low grade rejection and for 14 months he was extremely low energy after his transplant Nov2018. I wish you all the best!

[Jayhawker in reply to GardnerADK]

Yes, I remember reading about some of what your spouse experienced. I hope he is feeling well now.

Jayhawker

[RavaSpirit]

Congratulations to reaching this milestone! So glad to hear you are feeling better and enjoying the benefits of this arduous process. Gives me hope as I am pretty early in my transplant journey with it's own set of issues, including CMV.

[Jayhawker in reply to RavaSpirit]

Most don’t have the issues I ran into with CMV. Hopefully you won’t.

Jayhawker

[RavaSpirit in reply to Jayhawker]

Nothing directly with CMV (as far as I know). But still feeling weak at times and now getting new cold sores on my tongue and blisters on my lips that I have never had before. Hoping the doctors can figure out what it is soon.

[Jayhawker in reply to RavaSpirit]

I had sores inside my mouth intermittently with the meds. It calmed down with time for me.

Jayhawker

[Winner76]

I’m so happy for you. You can can start to enjoy life again. Great news !

[Redbone55]

Congratulation coming up on your kidney anniversary. It is always exciting to cross another milestone. Hope that you continuing to have good days and good energy to continue to strive in this journey called life. Many Blessings 🙏to you!