10 Year Anniversary

[StormCl0ud]

A few weeks ago I realized this is the ten-year anniversary of when I started dialysis. I started in August of 2013 in the days after I had a knee surgery. I was 14 years old. I'm now 24 years old. In the time since I started dialysis I started and finished high school, started and finished college, had a kidney transplant, lost a kidney transplant, transitioned from a pediatric nephrologist to an adult nephrologist. I can feel the weight these ten years have put on my current health. I'm in the evaluation process to get another kidney transplant, but due to my two failed transplants, (I had a failed transplant before I started dialysis), I have antibodies to 98% of kidneys. It will likely take years to find a kidney transplant that matches even though I'm at the front of the list. I'm in a bad place. I'm overly concerned about my health. I'm concerned that these ten years of ESRD have poisoned my life. I always thought that I would beat this disease. That it would just be a small part of my childhood. That I would go on to live a healthy and successful life. I never imagined this disease would follow me into adulthood. I feel it's impact in my life now more than ever and for the first time I don't see a future where my 20s are not dominated by this disease.

[Jayhawker]

My heart goes out to you. You’re a kidney warrior! My father had CKD his entire life as well. I’m 69 years old now so you can imagine how long ago it was for him. Available treatments have changed considerably (and for the better) since he battled CKD.

As I think back, I have vivid memories of growing up with a father who had CKD. He was a music teacher. He loved music and teaching! He also had a small band that played for dances on the weekends. When he graduated from college he had the opportunity to play trumpet with the Stan Kenton Band, a big band that played jazz somewhat like the Glenn Miller Band. Dad played with the Stan Kenton Band until he met and married my mom. He then began teaching music so he and mom could live in one place and raise a family.

Dad worked for 40 years all while battling CKD experiencing declining renal function. He and my mom were a formidable team who managed dad’s CKD effectively with help from his medical team. I remember many accommodations we, as a family made, to support dad. Of course there were dietary accommodations. Mom nearly always had 3 vegetable options at dinner, for instance. Two of the three conformed to dad’s low potassium diet requirements. The other was a healthy higher potassium option for the rest of us. Dad always took a “Power Nap” when he got home from work. He had pretty severe anemia. We would play outside or quietly inside while he napped. We had family game nights. He loved playing ping pong. We had numerous ping ping tournaments throughout my childhood.

This was our normal, my normal growing up. As a child I learned from my father how to live well with a serious, chronic medical condition.

I share this with you in the hope that it will encourage you. All our life paths are unique and quite likely very different than we had imagined when we were younger. Will CKD effect the trajectory of your life? I would suspect it will at least in some ways. But a different life path is not a worse or poor life path; it’s merely different.

When I was first diagnosed with CKD, I had a serious conversation with my nephrologist. I told him what mattered to me. I’m a university professor and researcher. I described the job to him and then asked him if there was any reason why CKD, even with dialysis, would preclude me from achieving my professional goals. He said absolutely not. Now, 13 years and a kidney transplant later, I can say that he was right. I’ve continued to teach, research, write and run federal grants, and speak at international professional conferences. And, I’ve done all of this as a single person who lives alone. My dad showed me the way! My medical team works with me to provide needed medical support. I’m the only one who can limit myself. Once I wrapped my brain around that, I never looked back and contrived ways to accomplish my professional goals while taking care of my health and attending the myriad of labs and medical appointments.

So, what do you want to do with your life? Marry? Have a family? Have a professional career? All of these? (I’ve run into a news reporter on dialysis who travels the world covering news events!!!) You’ve already accomplished so much! You said you finished college. I just attended commencement ceremonies on my campus last weekend🙂 What was your major? It’s time to set career and life goals. Share them with your medical team. Then, start working toward them.

Well, I don’t know if this has helped. You’re in my thoughts. Please keep posting.

Jayhawker

[Bassetmommer]

Storm, You are true Warrior and example of how bravado and guts can make a difference. I am sure, as we all do, there are times when it all gets to be too much. We are here for you to lift you up and get you going again.

Life paths are a funny thing. Some of them really have pot holes in them. And there are those who allow those holes to swallow them up. They cannot get out. But you can, and have already. You will again.

What a scarry and wonderful age to be. The whole world is in front of you. Yes, it is a difficult journey, but EVERYONE has some baggage. What did you take in College? Whatever your dream was then when you started College, make that your life plan and live it fully.

Think about becoming an Ambassador for one of the Kidney groups like the NKF or AAKP. Using your voice to make changes and support others in their struggles is very fulfilling and we need young adults like you to step up.

I wish you all the best.

[Beachgirl32]

you been through a lot so young. You are a warrior . We never know what god plans for us are and. There always new medical things going on so we never know what the future may hold. I know I was told I will be a hard match cause of my high antibodies my are in the 80 s not as high as your but I did talk to someone on here they had antibodies of 100 and they got a match so as they told me don’t think it can’t happen there always hope . I wish you well.

[jodaer]

You're a true warrior woman. My heart goes out to you. Sending lots of healing energy and hugs your way.

[LeesKees_NJ]

Storm,

Please try to stay strong. I know that is easier said than done some days. I know how stuff like this can get in your head - you start dwelling on how it could've been different. Try and stay positive, don't let this milestone shake you. You are so young and have accomplished so much even with all your kidney issues. It certainly tells me how awesome you are and how incredibly strong you are.

The antibody situation sucks, I'm not gonna lie. But I'm right there with you at 99%. I know my wait time on the list will be triple the normal time. But I'm 61, I don't have as much time. I actually have daughters your age, one whom I unfortunately handed down thru DNA the same kidney disease (polycystic) that I am suffering from. Talk about feeling awful about things...I was really hard when we found out not to let that get in my head and mess with me. I still feel terrible guilt but I can't let it paralyze me. I still have life left to live. You do too! You have so much yet to experience. Don't let this milestone paralyze you. You're doing so well. Don't stop, you got this!

[Jayhawker in reply to LeesKees_NJ]

LeesKees_NJ

I’d imagine your daughter would be the first to tell you not to spend a second feeling guilty. In many ways, growing up with you has likely given her invaluable tools or strategies she can use as she battles CKD. Regardless, there are many things in life that are just not within our control. Medical issues fall into that category.

I think most of us who participate in this forum experience more than our share of guilt. Those with diabetic CKD may feel guilty about not managing a diabetic condition well. It can be similar for those with hypertension-related CKD.

I think it’s time for all of us to enter a “No Guilt Zone.” (like no passing zones on highways…) As we live in the no guilt zone we choose not to look back; not to flog ourselves for prior actions; and not to think about what ifs. Instead, we acknowledge that we are where we are. We start where we are and move forward working with our medical teams and the support of our families and friends to do our best to live good lives with CKD.

No Guilt Zone ahead🙂

Jayhawker

youtu.be/5pBjopDymts(Not working as expected?)

[RhenDutchess123 in reply to Jayhawker]

No more guilt!...Very well said Jayhawker !

[JustPeachy85]

hi i was reading your post and its weird our stories sound almost the same. right own to the leg surgery part. i guess its nice to know i am not the only one being so effected by this disease . i am always looking to talk to ppl going through the same thing.

[cs65 NKF Ambassador]

Wow, StormClOud, I think you need to talk to Lori Hartwell, the founder of Renal Support Network. She has been through many of the same things as you, only her journey with ESRD began at the age of 2 when she was one of the first dialysis patients. She is in her 50s now and has had four transplants and many stints with dialysis throughout her life, but is one of the most hopeful, inspirational people you could ever meet! Her website is rsnhope.org and I know she would love to hear from you! She knows all about the antibodies issue because she's been through it. At her network she has started everything from an annual Renal Prom for young people like you, a support group online as well as exercise groups, arts and crafts group, a nutrition group and a wealth of podcasts on many topics. Please get in touch with her, you won't regret it! Take care and know that we all support you!

[Jayhawker in reply to cs65]

I have found Lori to be very inspirational! Great suggestion👍

Jayhawker

[MToQ]

Hi Storm,

I am very sorry that you are going thru this. Many of us on this board have been there, myself included. It would be crazy to have lived with this disease for so long and not feel depressed by it now and again. I hope you don't make many of the mistakes that I did and go thru it alone . You are on this board, so already ahead of me, when I was in your position. I hope you have wonderful friends and family that are there to support you. Not all of us did/do. I wish I joined an online support group when I was on dialysis so I wasn't doing it alone and feeling so lonely. You can find your people here!

I find that therapy helps. If you don't have a therapist, please ask your team to give you some referrals. In person group therapy might be worthwhile as well. Don't stress alone. Stress is SO detrimental to our health.

I am a 10%-er, like you. As you know, basically, higher antibody levels than 90% of other people. I had a PRA of 98%-99% for years and when I was transplanted, I was at 100% with 0% kidney function left. Plus I had a hard blood type to match. I was on PD for about 5 yrs when I got the call. I was listed at 2 different hospitals. At one, I was told 9+ yrs. With my specific stats, it was the shortest wait time out of all the transplant hospitals in the country.

I got the call and so will YOU! I thought I would still be waiting but it happened and it worked. They are pairing younger donors with younger recipients. There is hope.

I can't imagine what it must have been like for you being so young and having been thru so much. But like others have said...you are a BRAVE WARRIOR! Your current feeling are valid and you will work thru them. Something good, positive, even wonderful, will happen soon and life will get better.

Try to watch or read something something that will make you smile, better yet laugh, at least once a day. A silly joke book, a funny podcast, watch a comedy. After a while, it will get easier.

It's been 5 yrs since I received my transplant. These days, I get to spend loads of time with my young child. Something I never thought I would be able to do.

Hang in there. So many of us are here for you. Keep reaching out and sharing.

Sending you lots of positive healing energy and warm hugs.