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    • #34264
      Jen Cueva
      Keymaster

      Summer is around the corner. Schools will be out soon, and the weather will warm up.

      Last week, my husband, Manny, and I had a beach day. We planned accordingly, with extra water for hydration, sunscreen, and a sunhat. Don’t forget that many medications cause sensitivity to the sun.

      What’s your best advice for sun protection as you enjoy the longer daylight hours?

    • #34269
      Colleen Steele
      Keymaster

      This is an important topic @jenc. Cullen has to be super careful. His transplant medications make his skin extremely sensitive to the sun and susceptible to skin cancer. Adding to the concern is the fact that skin cancer can be hereditary and both of my parents have struggled with it.

      Cullen’s transplant doctors have requested he be checked for skin cancer by a dermatologist at least once a year. I think we will make that a goal this summer.

    • #34274
      Jen Cueva
      Keymaster

      Hi @colleensteele, I think it’s a great idea that Cullen will have his skin checks done with a family history of skin cancer. What about you? Have you had any done? It sounds like it should be something to add to your medical calendar. Having this done each summer is a perfect time since the sun is out, and most are spending more time outdoors.

      I haven’t had a skin check yet, but I know others. @cdvol3gmail-com, didn’t you have this recently? @tervo, does your dermatologist do a complete skin check when you go in for a visit?

      Many of our medications cause sun sensitivity. Y’all use skin protection when you’re outdoors.

      • #34280
        Carol Volckmann
        Participant

        Hey Jen and Colleen, appointments with dermatologist in a couple of weeks. It is so important these days with adverse reactions from our meds and all those years growing up sailing, swimming not using any protection and worse yet, sitting out in the sun forever on purpose wearing baby oil!!! YIKES!

        I have had 2 melanomas and Dick has had more than a dozen non-melanomas chopped out.

        Really glad to hear Collen is going to be checked out. Isn’t your time Colleen?

        Great reality check Jen, thanks 😊.

        • #34281
          Colleen Steele
          Keymaster

          @cdvol3gmail-com I hear you! We’ve had a lot of fun in the sun, especially in our youth, haven’t we. I practically grew up at the Jersey shore and so did my mom. My mom’s dermatologist told her that her skin cancer started developing in her youth but didn’t present until she was an adult, and I guess that is the case for many. Scary to think about.

          Oh my goodness, do you know what I did in the 80’s? I slathered myself with baby oil and iodine to lay out in the sun. If I could go back in time and slap myself I would!

          Because Cullen has so many “important” doctors he needs routine clinic visits with, we have found ourselves procrastinating on making a dermatologist appointment. Thank you @jenc for reminding us that the dermatologist is also very important!

        • #34283
          Carol Volckmann
          Participant

          I grew up in RI then spent years in the Caribbean ⛵  sailing – no protection! We are paying for it now!

          Both Dick and I see the dermatologist every 6 months. Lessons learned for the next generation.

          Hope all checks out for Cullen!

        • #34287
          Colleen Steele
          Keymaster

          @cdvol3gmail-com I’m sorry you are both paying for it now but thank God you have the sense to keep up with the dermatologist. My mom has gone a number of times convinced the doctor wouldn’t find any concerns but he had. For peace of mind it’s good to keep up the appointments. I hope you get the all clear during your next visit!

        • #34295
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com and @colleensteele, Oh my! I thought I was the only teen here that that baby oil or baby oil and iodine combo lie in the sun for hours! Eeekkk

          That’s certainly on my list to get to, but my new PCP has a ton of other priority tests ahead of this, so once I get those caught up, I need to add this to mine. Making this annual check-up on our skin during the summer will be an excellent way to remember to schedule it.

          I can imagine sailing around the world with no sunscreen didn’t pay off either. Hugs and prayers that you and Dick both have a positive appointment this month. However, that sailboat trip sounds fantastic! You all were fortunate to have such adventurous lives! I remind KK, our daughter, to travel and adventure now, and she takes that advice. Funny, I told her this weekend, “some advice you may never hear bit that you took and ran with, LOL.”

          I hope you both enjoyed a lovely Mother’s Day weekend!

          Please let us know how Cullen’s labs and appointments go, Colleen. Also, @cdvol3gmail-com, updates after your appointments,

        • #34309
          Colleen Steele
          Keymaster

          @jenc Cullen’s labs came back with no problems. His transplant med levels are where they need to be and his nephrology labs came back with no issue too. He admits he hasn’t been drinking as much water as he should so he was surprised his creatinine was stable. Next is an in-clinic appointment with lung transplant at the end of the month.

          I thought I would add something funny/not-funny in line with the baby oil and iodine.

          I had natural auburn hair in my youth which changed into a chestnut brown as I got older. But when I was 13 I wanted to be blonde so bad! So that summer, in addition to lathering my skin with baby oil and iodine, I sprayed (soaked) my hair in Sun-In (do you remember that stuff from the 80’s) and sometimes mixed it with peroxide or lemon juice.

          It worked! My hair was a pretty sandy blonde BUT by Christmas it turned orange! When my mom started to notice I remember she screeched, “What did you do!!!” I had to cut my long hair very short so it could recover.

          That cured me of my desire to be blonde. I’ve stuck with the color God has given me every since.

          Anyway, not PH related but worth a good laugh.

        • #34317
          Carol Volckmann
          Participant

          So happy 😊  Cullen’s labs were go to go! Hope it all goes as well eith transplant team coming up!

          Sun-in!! I loved your story! I also used it and I am a blond! I just wanted to be a lighter blond! And … my hair turned orange 🍊! Oh how we do learn- thanks Colleen for your sense of humor – we all need to laugh and laugh at ourselves

           

           

           

        • #34326
          Jen Cueva
          Keymaster

          LOL @cdvol3gmail-com, yes, we all wanted the opposite of what we had. I bet your hair was already a beachy blonde, my friend. Mine was dark, and I wanted those natural-looking sun glowing highlights they showed on the commercials back then.

          Did a friend suggest it to y’all, or was it something you found yourself? I admit I have been under peer pressure from a friend as we thought it would be fun and beautiful.

          Have a lovely week, ladies. Thanks for the laughs, @colleensteele. Prayers continue as Cullen seems on the transplant team later this month.

        • #34325
          Jen Cueva
          Keymaster

          Hi @colleensteele, I’m so happy that Cullen’s labs returned stable for both his kidneys and transplant med levels. Do I need to start texting him to drink water? Manny gets a constant reminder to drink water, and I asked how much water he drank that day at work, LOL. My mom is also one I remind as she and my dad are both not too good at staying hydrated with water.

          I guess I’m the water gal, LOL.

          OMG, KK and I were just talking about Sun-In yesterday. As I mentioned, my hair was too dark for summer. She says they still sell it, but I haven’t seen it not looked for it.

          I snuck in some Sun-In and used a bottle or two as a teen, and my parents didn’t know until my hair started changing colors. At first, I told a flat-out lie and said it was because I was in the sun so much. I forgot to mention that time about the help of Sun-in. Mine did also turn a red tinge but not organe. I finally told them and stop using it. I’m sorry you had to cut yours after turning it orange. It sounds like you already had that sun bleach blonde look. We all want what we don’t have, especially growing up in our teens, right? Too funny.

    • #34335
      Colleen Steele
      Keymaster

      @jenc he is usually so good about his water intake but I think that Statistics class distracted him. It’s over now and he is back to drinking water like he should. LOL!

      • #34355
        Jen Cueva
        Keymaster

        Yay, for that Statistics class being done, and Cullen tackled it! So he can focus on drinking his water again. That’s important and hopefully will help offer him some relief.

        I need to be cautious with water by drinking enough but not too much with my fluid restriction. This was always challenging for me in Texas, so hopefully, I’ll find a better balance here in SD this summer.

    • #34358
      Colleen Steele
      Keymaster

      @jenc I remember all to well the complicated balance Cullen tried to maintain when he had PH. Drinking enough water but not to much is challenging, especially because some PH days are worse than others, so how much is too much?

    • #34371
      Jen Cueva
      Keymaster

      Hi @colleensteele, funny that you ask that question. How much is too much?

      My previous kidney doctor said water versus overall fluids and allowed so much that way. The new nephrology team is back on top, adding all liquids together. I reminded them that taking medications 4-5 times per day; I need water to wash those pills down. Currently, they suggest 2 liters of total liquids; this becomes challenging when I want a glass of wine, soup, ice cream, etc.

      Did you mention Cullen was on a fluid restriction at times, too?

      Maintaining this balance is undoubtedly always a challenge.

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