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Hyper IgM Podcast - Patient Voices - E3 - Ezra Talks to Josh · The Hyper IgM Podcast

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  Hello everyone and welcome to the third episode of the Hyper IGM podcast. In
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  today's episode I have a conversation with a fellow patient Josh. Josh is 16
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  years old, lives in the UK, and has received a stem cell transplant like me.
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  In this episode Josh and I discuss post transplant complications and Hyper IGM's
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  impact on our lives and who we are. Enjoy the episode!
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  Hello everybody and welcome to the third episode of the Hyper IGM podcast. I am
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  your host Ezra Feynman and today I am joined by Josh. How are you today Josh?
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  I'm good. Awesome great to hear. So before we get started just tell us a
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  little bit about yourself. Do you have any hobbies and what do you like to do in your spare time?
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  I'm 16 years old. I'm interested in programming and gaming in my spare time
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  where you can just play games or do some coding. Cool awesome. So for our viewers
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  who don't already know what Hyper IGM syndrome is, Hyper IGM is a 1 in a
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  million rare disease that causes a person's immune system to not function
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  properly. People with Hyper IGM are unable to make antibodies which means
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  that if they get sick they have a hard time fighting off the infection and can
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  get very ill. Hyper IGM patients are also at a higher risk of developing cancer.
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  Without a stem cell transplant life expectancy for a person with Hyper IGM
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  is an average of 30 years old. However some do live into their 40s or 50s. So
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  with that being said Josh do you remember the first time that you've really
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  became aware of Hyper IGM? So obviously you were born with it right? So when do
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  you think you really started understanding like oh this is what I have?
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  So I don't think there's an exact date where I realized how like severe it was
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  and like why I was truly dealing with. I just I think it's just something I've been
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  aware of for as long as I've been alive. So yeah. Yeah I mean it's always been a
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  part of us. So yeah. Interesting. Yeah. I mean for me I don't know if I really like
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  I don't have like a like a you know big moment where I really remembered like
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  figuring out what Hyper IGM was. I feel like as I've grown older my
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  understanding of what it really is has definitely developed a lot which I'm sure
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  it has for you as well. So but other than that yeah I feel like it's definitely
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  always been a part of my life and like I said Hyper IGM is a one million rare
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  disease but besides this podcast have you ever met anybody else with Hyper IGM
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  syndrome? I don't think I have. They're always like talks about meeting other
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  patients of Hyper IGM but I don't think whether like went through with it or like
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  actively like planned it out. It was just like mentioned in passing conversation
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  like we do it one day but you know and definitely went any farther than that. Am I
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  am I your first meeting with someone that also had Hyper IGM? Am I my number
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  one? Yeah I'd say you are. Oh I'm honored I'm honored. So I know that you had a
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  SunSell transplant when you were 21 months old so I doubt you remember
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  anything but is there any at all like or even even like remembering from like
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  pictures is there anything that you've recalled from actually going through it
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  which I don't know interesting to hear if you do. The one thing I remember about
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  hospital is this is a memory that is actually disputed by my parents of like
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  having like blood taken so I don't know came up with syringe and like at this
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  time I just remember like seeing like blood come out like just the syringe
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  being filled with blood. My parents say like it didn't happen but I remember
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  happening so you know. Really that's that's interesting so you think it
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  happened your parents don't that's that's that's crazy. I don't remember much
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  from going through it I remember like some of the fun stuff so speaking of
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  going through transplant so where did you have your transplant? I had my
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  transplant at the Great Woman Street Hospital in London. Okay and so did that
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  make transplant like harder in any way like did you have to like travel there
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  did you have to live like far away from your home? Well London from where I am
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  is it's like a train ride away which is a bit of distance like an hour away by
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  like via commute but I think what happened with the transplant is that
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  there'd be like a rotation like I think they stayed in London for the
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  duration of the transplant there was like a rotation of like one pair and like
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  for example my mom would stay in the hospital for like a week or like a night
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  she's staying like I think like a hotel close by the hospital and it's up
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  between like the hospital and the hotel. Okay yeah so for me I had my transplant
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  at Memorial Sloan Kettering in New York City and we live maybe I think it's
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  about like 30 minutes from New York City so traveling it wasn't like terrible
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  for the majority of my transplant I at least this is what I remember my parents
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  were pretty much with me for the majority of the time both of them I mean I'm
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  sure there was some switching but I mean I don't remember that much from actually
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  being in the hospital to tell you exactly but that's what I remember from
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  mine at least so after you completed treatment what were your lifestyle
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  restrictions post transplant? We didn't let the countryside which was beneficial
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  for me because I have to like be in isolation at time but like when I was
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  allowed to go out I think from what my mom told me she had to put like this
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  like protective screen around my push chair to sort of protect me from the
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  outside world but where I live was very beneficial for my condition because it
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  had more open spaces like open remote spaces and it wasn't like as crowded as
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  cities were. Yeah that's that's that's an interesting point actually yeah I've
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  never even thought about that like that having like differences with location
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  that's interesting yeah for me I definitely remember having to like put
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  on gloves whenever I left the house and stuff like that you know washing my
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  hands every six seconds it's just like stuff like that which has some of its
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  actually carried on to my life now kind of staying on that same line of thought
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  so did you have any significant post transplant complications? Well five years
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  after my transplant when I was six I developed like a tumor in my kidney
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  it's called a renal cell castanoma which is common in men over 50 but extremely
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  rare in children. I was like nose in 2014 last diagnosis they have of like a
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  young child with like renal cell castanoma was 15 years ago at the time so
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  given that I was diagnosed in 2014 the last case would happen in 1999 I think
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  Wow it was detected quite early at stage one so they were able to remove it with
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  surgery they removed some of the lymph nodes just to check it hadn't spread
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  anywhere and I think all of us fifth actually marked the 10 year anniversary
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  of it happening. Oh awesome well congratulations so that must have been
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  incredibly hard for you do you remember more of that than your actual
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  transplant since you were six at the time you were older? Yeah I remember a lot more from that.
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  I think the same day we went to Western Supermerc like a nice day out my mom got
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  a call from the doctors which basically told her like hey we've detected a 4
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  centimetre of hospital in his kidney and it's not a blood clot like we assumed it
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  was we basically had to get there quite quickly so what I remember from that day
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  is when we got home from the beach there was just we were just packing bags
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  packing our bags and setting off again and I remember being like really
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  confused because like for me it was like we got into the house and everyone was
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  leaving again I was like hey where are we going? And then I remember the first thing
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  quite clearly I remember when I got to the hospital like I was in a room like a
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  sort of like chair that was like black like it's all like a dental chair I sat
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  in there and and I was moved to like a wall like a bunch of other kids and it
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  was there I was told I had to have an operation and I didn't think anything I
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  didn't I don't think I like cried anything I just thought oh no like that
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  just I knew what operation meant and I was just like oh no yeah so for me
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  actually I can kind of relate to having some issues post transplant so six
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  months after my second transplant I developed autoantibodies that attacked
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  my red blood cells and platelets and I had to go back into the hospital for
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  another month post transplant which is like the last place I'm sure I wanted
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  to be and I'm sure my parents wanted to be after just spending so much time
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  going through two transplants in the hospital and after I had to be on high
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  those steroids and other medications that delayed my immune system from fully
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  coming back so you know the whole point of having a transplant with hyper IgM is
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  to get a new immune system and mine was delayed coming back even further than
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  you know to begin with with hyper IgM so you know I do actually remember kind of
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  finding out like that my cells were going crazy I do I kind of remember the
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  moment actually that I that I found out I don't remember having any like reaction
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  to I feel like I was just kind of maybe in shock I don't I don't I'm not really
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  sure but I do remember that little that little bit of it and I'm sure again I'm
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  sure that was very hard on you but do you remember anything like positive or
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  like fun that you did either during transplant which is when you were very
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  young or like during that time period with your kidney
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  well my transplants I remember like one Christmas I got like one of the
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  persons I remember getting like Christmas was like a ball of some kind and for my
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  cancer treatment I remember more from that my cancer treatment I stayed at
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  like two hospitals I had a short stay at Bath IUH and I had like the longest
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  stay while I was operated on in Bristol Children's Hospital I remember in Bath IUH
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  my sister got to do this art thing at the hospital and she made these like clay
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  penguins it's either um this is where my memory starts to come through but I think
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  when I was receiving treatments in hospital or like having to stay over
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  night in hospital for the first day where I wasn't operated on I think it was
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  then I got gifted a newer iPad I think it was an iPad 2 I just think it was an iPad
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  that she was an iPad 2 it was definitely what I get that I appreciated a lot
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  because I remember like making like short little videos on it I remember
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  spending a lot of my time in hospital rather like playing a game on my newer
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  iPad or just like watching a video I was really into like storms and tornadoes at
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  the time so that was like 90% of the content I consumed but I remember
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  during my treatment after my surgery there was this kid in the ward with me
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  who had broken his leg really badly and I think I gave him my iPad I remember two
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  things wrong I gave him my iPad so he could watch like Home Loan 4 that's
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  one of the other thing I remember watching Home Loan 4 with Pete I don't know why it
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  was that Home Loan specifically but it's one of the Home Loans I remember the most
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  because I watched it that many times and the second time was because I was really
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  into Minecraft at the time that boy gave me redstone tips but I forgot them all
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  completely because it's been 10 years that's why I mean that was you remember a
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  lot yeah I don't remember anything close to all that but that was very nice of you
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  to give your iPad yeah that was that was awesome and going back to like you're
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  saying how you're watching all those videos and stuff in the in the hospital
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  I remember either not necessarily during it I mean I'm sure I was I mean I know I
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  was during transplant as well but also my frequent checkups post transplant where
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  I had to go back to the hospital just for them to check to make sure everything
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  was still okay I feel like that's where I really got like my my like my liking to
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  like video making and editing and stuff like that which obviously I'm using now
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  with the podcast so I'm kind of combining both of my interests here
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  helping people with Hyper IGM creating awareness for it and also video making
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  which is amazing and so yeah I feel like that kind of I took that away from the
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  hospital I definitely think that without it I wouldn't be as you know into videos
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  maybe and looking back on your Hyper IGM journey do you think that like either
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  being transplanted being in the hospital with Hyper IGM or your cancer
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  treatment has that like made you want to do anything different with your life or
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  affected your life as a whole at all I can't really imagine myself without
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  having a transplant maybe without maybe things would be different if I didn't
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  have like cancer or any sort of like surgery but I was also quite young at
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  age six I think at age six I want to be like the fire minister and now I want to
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  be like a software engineer so that changed I guess yeah I guess so okay I
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  mean obviously it affected both of us because we're on this podcast now
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  spreading awareness for it and trying to help people other people with it or
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  people that know people with it or that's a great silver lining to to Hyper IGM
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  and the tough experiences that we've both been through and although you don't
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  think Hyper IGM has affected you that much do you think it's affected
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  your family more than you maybe or the same or what do you think? I definitely
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  think it's affected my family like it put like tons of stress on my
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  parents like my mom especially and my dad but I think whenever we're talking
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  about it they said the most important part was the fact that they managed to
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  sort of stick together through it like like become stronger as a result of it
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  because as per my mom she mentioned that I like from met a lot of like the
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  parents she spoke to about like having kids with Hyper IGM their family's
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  just completely broke apart so yeah yeah my sister I during my treatment she
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  had to be like sending my to like relatives like cousins because you know
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  she was quite young at the time I was being treated and because they didn't
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  want her to just be in the hospital at the time and like get bored they thought
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  like our relatives could take care of her and she could act like fun that way so
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  yeah but I think it's why she's afraid of hospitals nowadays so you know. Well
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  actually first let me say that I definitely think that I've grown closer
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  to my parents because of transplant because I spent so much time with them
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  and only them it shows that if we've been through that we as a family and we can
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  be through we can go through anything nothing's gonna nothing's gonna stop us
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  right we've conquered it already yeah so also when I see like hospitals or like
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  bad things happening in hospitals on like like a TV show or like in like a
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  book or something I kind of feel like those like scenes always kind of like hit
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  me harder than like I feel they would someone that hasn't lived in the hospital
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  for a big chunk of their lives you know like I feel it and like in the increased
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  like feel like empathy towards the people like on the screen or in the book
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  or something like that which I thought was pretty interesting yeah I get that
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  as well I mean last year I think I had to cancel because I just start it
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  started like late 20s like mid-20s but it just kept me getting worse while I
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  just started like really focused on my health I start to believe that there was
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  always something like happening like any slight pain was immediately something
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  like really severe like I and I like probably showed a quite bad in that
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  year and like when I got like a shot pain on here I thought it was a lung tumor
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  somehow well yeah so and it's because I googled it and it told me that like shot
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  pain around like this area could be sign of like a really rare like type of lung
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  cancer dr. Google is never good yeah my parents like that I'm only my
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  transplant because they searched it up even though the doctor has told them not to and
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  they got told I had like severe combined immune deficiency by dr. Google and
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  they were thrown into a very deep state of despair because they thought I was
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  gonna die yeah yeah it's it's it's a mental health to it's I mean obviously
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  it's physical health right hyperide with no immune system hyper IgM eliminates
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  that bit some men it's mental battle too I mean I would still consider myself not
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  a full but like I still have some I like I'd say that I'm a little bit of a
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  germaphobe now like I don't like being dirty I don't like I said before I wash
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  my hands a lot I just don't I hate being sick being sick is one of my least
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  favorite favorite things like I just hate being sick and I feel like I have like
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  more of a like disdain towards being sick than a regular person would be like
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  oh I just have a cold that I'm like oh like I have a cold like I get like
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  angry about it almost and I just really don't like being sick so yeah with
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  illnesses I've noticed that like well my immune system now clears somehow I went
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  from having basically no immune system to clearing up illnesses faster than
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  literally anyone else my family but it tends to hit me harder like especially
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  with colds it get I get like really ill with like colds like it hits me a lot
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  harder I like sort of stay out of school for a bit but I recover quite quickly
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  hmm I mean I actually I've had that I've I've had both ends of the spectrum I've
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  had being like like my family goes down with something and I just don't get it
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  or I will get it the absolute worst my entire family got covered and I was the
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  only one in my family who didn't get covered and now so I'd obviously our
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  parents know a lot about Hyper IgM and our close family knows everything but I
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  also feel like luckily Hyper IgM doesn't even need to come up like with any of my
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  friends anymore because we've been we don't have it anymore right so which is
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  a good both a good which is a good thing but I choose to bring it up to bring
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  awareness to Hyper IgM and also that's just my story right that's who I am I
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  feel like Hyper IgM is a vital part of who I am as a person so for my close
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  friends to not bring it up I feel like I'm kind of leaving out a part of me you
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  know you feel the same in any way um yeah I I'd say I do I do think Hyper IgM
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  is quite a big part of my life and whenever I meet new people I always
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  mention it and passing to them so I think we are getting ready to wrap it up
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  here are there any closing statements that you have that you want to share
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  with us overall about Hyper IgM but anything about you anything like that
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  I think I'll stop by saying that I was I guess I'm one of the more like
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  interest I don't know if it's interesting is to my word to say it because
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  um with my immune system coming my my parents is quite like my numbers like
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  this is like my like my just my numbers for my immune system they're low but my
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  immune system is still functioning like quite well I guess it's from my point of
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  functions like a lot better than many people in my family so yeah that's just
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  to kind of like not even the doctors know what's going on that's the thing like
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  who on paper it shouldn't be working as well as it does but I have like yearly
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  trips to the hospital to like get blood tests done that's all you have to say
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  for our episode yeah yeah okay awesome thank you so much Josh for coming on
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  here we talked about a lot of things that haven't been talked about on this
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  podcast the mental health side of through Trent going through transplant so
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  thank you so much for all of your insight you've actually made me learn a
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  little more about my own experience knowing someone else has kind of had
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  some similar things to me is awesome to hear so everyone watching be sure to
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  tune in for our next episode and thank you all so much for watching or listening
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  we will see you all in the next episode thank you for listening be sure to
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  follow or subscribe to our podcast rate or like this episode and share it means
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  a lot stay tuned for more