First Trip to CT

My folks just dropped Caroline off at my house after spending a week up at Jen's in Connecticut. This was their first trip since the transplant. The Hughes family was going through some serious Duni and Grammy Squirt withdrawal. Marc probably missed them the most as he is in love with my mom's cooking - she can make anything GFCF and taste awesome. She made him a chocolate cheesecake, spicy shrimp roumalade, barbecue spare ribs and all his other favorites. He was in heaven. Duni got to go to tons of basketball, hockey and gymnastics, so he was happy as a clam as well.

Duni, Jen, Matthew and Caroline took a side trip to Naubuc School on Thursday to visit all the teachers and friends who have been so amazingly supportive through this whole transplant. According to Jen, our two little ones (both 5 now), loved Naubuc and caused as much trouble as we used to:) Caroline's favorite part was the art room - just like her mommy's!

I think my folks will be going back to CT sometime in June. My dad wants to see the 5th graders - they were on some field trip on Thurs and he missed them. So they will swing by here again in a few weeks, grab Caroline and head back up to CT. That whole crew is hilarious when they get together.

I'm assuming my parents will need a few days rest to recover from the week, but I'm sure Duni will be out mowing the lawn this afternoon and back on the golf course ASAP. His 2 month post-transplant mark is coming up next week. That is a big milestone apparently. He will drop a lot of his meds at that appointment (anti-virals, anti-bacterials, antacids, BPs, etc...) and just stick with the anti-rejection meds for the long term.

Busy Weekend!

My folks came up here this past Thursday and Friday to watch my kids while I was out in South Dakota and Nebraska speaking at a few conferences. My dad looks GREAT!! He seriously looks 15 years younger - it is amazing. He is so strong and healthy that we've jokingly dubbed him the Lance Armstrong of kidney transplants. Not only is he back - but he is better than he was before he even got sick.

When we first started our crazy special diets and nutritional programs, he reluctantly went along with it all. Now he is a willing and eager participant because not only does he feel amazing, but his team of doctors are in shock at how quickly and smoothly his recovery has gone. He firmly believes it is due to all the hard work he put into his health before the surgery - so he is not about to stop now, he's got decades to go:)

My dad called me this afternoon after a special package arrived at their house. It was a huge box stuffed with gifts from the teachers and staff at Naubuc School. You guys are fantastic. I'll be honest and say that not everyone in his life has stood by him during the past few months - some were hurt and even offended that he never told anyone what was going on (as if it was any body's business but his own), but he now knows without a doubt who truly loves him. The hundreds of you who continue to show him that love and support make Jen, my mom and I overjoyed and, if you can believe it, speechless.

My folks are going to swing back through here on Sunday to pick up my daughter Caroline and head up to CT for a week. My parents are going through serious Hughes children withdrawal. Duni told me that he was definitely going to stop by Naubuc to say hello to everyone and show off his 9 inch scar - he is so proud. Feel free to email them this week if you want to make sure your around to say hi - squirtandbob@comcast.net

The Hazards of Spring for a Transplant Patient

My dad went into the doctor the other day to discover that his creatinine levels had gone up a bit. They had to increase his immunosuppressants due to the increased rejection risk. I spent all day trying to figure out what would make his creatinie levels go up. The docs, of course, said it was normal and everything was just adjusting. That, of course, was not a satisfactory answer for me.

At first, I though it was due to his increased exposure to people, and therefore, viruses, which can trigger a rejection due to his complete immunosuppression (from the meds). But he is on such powerful anti-virals, that a little cold or flu virus would have no impact on him. Similarly, he is on high doses on anti-bacterials and anti-fungals for the same reason and effect.

Then, as I was driving around northern Virginia, a familiar smell hit me like a ton of bricks, and I knew exactly what why my dad’s creatinine had gone up. I immediately called my mom and asked if my dad had been working on the lawn. She yelled over to my dad, and sure enough, last week, he spread fertilizer, weed killer and lime as well as digging up holes for flowers and trees (you know how much Duni loves working on his lawn:) The smell I detected in the air was fertilizer and weed-killer – you know that smell…it overpowers the air the first few weekends of April, as homeowners around the country prepare their lawns for the summer. And it is extremely toxic – especially to immunosuppressed individuals.

There are a handful of drugs on the market that suppress the immune system to prevent various health issues – including organ rejection post-transplant. Other conditions that use these drugs are auto-immune disorders, cancer, and inflammatory conditions. The categories of these drugs are: steroids, corticosteroids and chemo-therapy. Some common names include: Prednisone, Cell-Cept, Albuteral, Ellidel, and Remicaid.

If you or anyone you know is taking any type of immunosuppressants, please warn them about the risks of environmental toxins. A person with suppressed immunity is extremely vulnerable to the negative effects of common environmental toxins found in everyday items such as processed foods (FD&C colors, artificial sweeteners, and preservatives), commercial cleaning supplies used in the home, schools and businesses, common personal care products and pesticides, herbicides and fertilizers. An immunosuppressed body is virtually defenseless against these toxins and extra care in avoiding them is a key component to recovery and permanent remission.

Nothing infuriates me more than watching a post-chemo / post-transplant patient sent off into the world without any information about their susceptibility to these harmful toxins that can and will trigger a reoccurrence, relapse or rejection if the proper steps are not taken to prevent or defend against them.