(Topic ID: 235002)

Wanted to share my story

By Patnukem

1 year ago

Topic Stats

  • 20 posts
  • 18 Pinsiders participating
  • Latest reply 1 year ago by Patnukem
  • No one calls this topic a favorite


#1 1 year ago


I wanted to share how my past year has gone. A few years back I started suffering mild symptoms of an illness and for two years doctors would dismiss it. Last year I was sent to specialists and during a visit to my Immunologist/allergist she asked about chest tightness, I had a very mild almost not noticible tightness once in a while and she suggested a chest x-ray. Well they found two large masses in my chest, sitting above my heart and next to my lung. They were worried it was cancer. I then started to visit an oncologist. I had a needle biopsy scheduled and the results were inconclusive. Time for a direct biopsy, we’ll the surgeon decided it might be best just to remove it. In late August I had a full sternectimy and surgery, a 4 hr surgery turned into 11.5 hours because the mass was attached to my lung and tied up in a bunch of nerves. When I woke up I had some numbness, but also had. A chyle leak so I had to have another surgery. I had a nice room in Omaha’s new Buffet Cancer Center so recovery was as peaceful as it could be, at the peak of my visit I had 3 chest tubes, an IV, an epidural, and wires for monitoring, it took a long time to walk and when I did I had to have at least one person helping. I only just turned 35 so I’m fairly young still so it was kind of a shock to have to use so much help. I was diagnosed with a super rare condition called Castleman’s Disease most likely the unicentric version... the better of the two. Typically cured with resection. I found out later part of my and several lympnodes were removed. This disease causes rapid growth of lympnodes, my mass was in fact larger then my heart weighing 1.1 lbs and looks like a turkey leg. Just terrifying to look at. Sadly my voice was mostly lost due to either damage from the lung tube or nerves damaged by mass. I talked with a Batman/Darth Vader type voice, not all that bad if you ask me, but it made it hard for
People to hear me and for me to talk, it also made it hard to keep oxygen in as my left vocal cord is totally paralyzed. I eventually got out of the hospital and was off work for a while, recovering. I had several more doctor visits and got a new oncologist who has experience with Castleman’s who referred me to a dermatologist to check for other issues. One of my symptoms was these painful sores in my mouth and she concluded I had Paraneoplastic Pemphigus (PNP)... another super rare autoimmune disease that accompanies cancer and castleman’s. Sadly the outlook for PNP is usually bad less so in Unicentric castlemans patients, lucky for me. So after being pumped full of prednisone they decided to start me on Rituximab and IVIG. Rituximab is a cancer/autoimmune medicine that targets B cells and kills all of them, this is the cell that is attacking my self
I’m the PNP, so my immune system will go down, one other issue they can’t figure out is my low T cell count. But they also can’t explain why I have not really had that many colds or flu in years maybe one or two occurrences that were not bad at all. The other treatment they started me on is called IVIG it’s a pool of usually thousands of people’s immunoglobins, this seems really creepy to me though it’s extremely safe and have many safeguards to prevent diseases and stuff from transferring. I also had a third surgery where they injected my vocal cord and I, for now, have a somewhat normal voice again!

I just finished the Rituximab and have 11 more IVIG treatments. They are both administered at the infusion clinic.

My pinball hobby has saved me many times though this, I recently bought a building and will be opening an arcade in Omaha this year, and working toward that dream has really kept me going! I will likely do a post in announcements about this soon when I am a little closer to opening, just want to thank everyone on here for sharing information and stories, such a wonderful community! And of course my wonderful girlfriend Nicole who has been supportive thought my recovery and of my pinball hobby.

#2 1 year ago

Thank you for sharing. I'm sure you've had to be stronger than you ever thought you could be. Best wishes to you in your recovery and best of luck in achieving your arcade opening dream!

#3 1 year ago

WOW, your a stronger man than me

#4 1 year ago

Prayers brother ....going threw a bunch of stuff right now. Good luck with your arcade and better with your health.

#5 1 year ago

that sucks
best wishes going forward

#6 1 year ago

Hang in there, man.

#7 1 year ago

Well that sucks. Castleman’s Disease is quite rare but often fully treatable. I hope yours was totally resected and you’re fully recovered from all the related stuff soon!

#8 1 year ago

Stay strong. Hope things get better.

#9 1 year ago

Thank you for the positive thoughts and prayers... It really means a lot! I appreciate everyone taking the time to read this, sometimes it helps just to talk though it.

#10 1 year ago

That's a hell of a thing to go through . Hope you get fully well soon.

#11 1 year ago

You’ve been thru hell. You have mine and everyone else’s prayers for a full recovery.

Sounds like you have great support and a terrific attitude. Looks like Nicole is a keeper!

Good luck with your new arcade. If I’m ever in Omaha I’ll come in and support you.

#12 1 year ago

Nothing can stop you now. Keep moving!

#13 1 year ago

So glad the story is one that is getting better and brighter for you. Wishing you continued improvement and recovery!

#14 1 year ago

Best of luck. I'm not much older than you and have had three heart surgeries, a stroke, and few other crazy things. It definitely makes you aware of your own mortality. Check out the thread I started called Pinside Medical Support (I don't know how to link it).

#15 1 year ago

There’s nothing like a serious illness to give a person a new perspective on life. I have fought stage IV non Hodgkin’s lymphoma three times in the last 16 years and just had a heart attack on January 2nd. No need to go into the long story, but I have learned how to show appreciation to my family and friends for their support and have also learned to seek out and enjoy those things that I like to do instead of working my ass off most of the time. Enjoying things like pinball has helped me to have things to look forward to and has helped me get through the 3.5 years of chemo and 80 or so radiation treatments. It sounds like you have also gained strength from your family and hobby and are channeling it towards your new arcade. Keep your head up and good luck with your future endeavors.

#16 1 year ago

Thanks for sharing and positive vibes for your continueed fight to get past all this and open your place!

I drive through Omaha at least once each year. I will be sure to stop through when it opens.

#17 1 year ago

Sorry to hear one of our pinball brothers is going through such a difficult situation. Don’t stop fighting and hang in there. Focus on those dreams and let them give you strength. If you ever need us, we are always here to listen.

#18 1 year ago

Positive . A lot going on with you. Keep us updated with your journey,,, Would love to come check out your new adventure someday,,, Keep on Truckin ... We are here for you and your family unit.. NicToria.. Peace

#19 1 year ago

Sorry to hear. Keep your spirits up. I'm 43 and I was diagnosed with MS 15 months ago. And I agree, pinball is a great hobby to have. And kept me sane in some pretty shitty times. And got my mind off things. And I'm greatfull to all family and friends and people involved in this hobby.

Getting sick really puts what's important in perspective.
Remember if times get tough, it's not just you that is suffering. You might feel the most pain. But your whole family is with you on this. It's scary for everyone. So Stay strong, and get through this together.

Best wishes

1 month later
#20 1 year ago

I so appreciate you all helping me so much! Just a small update, no lung deterioration detected with my 3 month Follow up, so the medicine might be working so far! Also I am still frantically working on opening my arcade and the project has helped me focus entertaining positively and get over this awful disease. I entered a compition to win a grant from FedEx to help the arcade along don’t feel obligated to vote but it would help me out, sorry for the shameless plug. https://smallbusinessgrant.fedex.com/home/detail/9a892441-c66f-4863-8324-9ed7c1bcbe0e#/gallery/detail/9a892441-c66f-4863-8324-9ed7c1bcbe0e

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