Lainiepop 6 years today!

[lainiepop]

Hi guys am really sorry for the silence over the last year. I’ve had a few blips where last may I had a stomach bug and it affected my tacti levels and creative me it rose to 107. It didn’t recover much but thankfully didn’t get worse has been stable and 3 months ago I had my tac dose upped again. Had kidney app today and told creatinine 100 and tac 6.2 they are super happy and said congrats 6 years today. Me and dad hasn’t even realised it was actually today! He is doing really well. My son will be 11 in October and is going going through a rude moody lazy preteen stage 🙈. My daughter will be 7 soon and is at dance studio nearly every night if the week now she’s added singing to the schedule and soon will be there 4 hours every Saturday for rehearsal til their show in July. I’ve been doing adult tap there too and live it but did not want to be in the show 😂. So instead I’m helping backstage one night but that’s going to be crazy with 8 girls to sort and help change. Elena has about 8 costumes 😂. Then right after dance show we are getting off to LA for our month long road trip!  Will encorporate Palm Springs Death Valley Grand Canyon Vegas Lake Tahoe Yosemite and San Francisco. Not necessarily in that order my geography’s not great 😂. Concerned how I’ll cope with the heat any tips from USA peeps?! And do I need to be concerned about the tacro  and the heat?! My son has taken great pleasure in telling how I will die in Death Valley and in Yosemite we have to lock our food outside so bears won’t come in 🐻 😳
I will try be more regular on here now we’ve went so busy as have sold our house currently in temporary rental and finally exchanged on our purchase last week so 3 weeks til we move in ! Xxx

[Marilee]

Hi Lainiepop! I'm new here but just wanted to say "Congratulations" on six years with your 'new' kidney, and blessings to your dad for giving you these wonderful years with your children.

I used to live near L.A. and currently call Albuquerque, NM home, and wanted to confirm that July and August in Southwest USA can be VERY hot and dry, so be sure to have lots of water for everybody on hand, make sure your car is in great condition (don't want to get stranded in the desert), the Air Conditioning works, and keep an eye on the weather forecasts for places like Death Valley https://www.nps.gov/deva/planyourvisit/weather.htm (it'll be averaging about 115 degrees F every day that time of year). Palm Springs is not quite as hot (averaging about 105 degrees each day). Most folks that I know who visit Death Valley do it in the early spring to see the amazing wildflowers in bloom.

You've got some fabulous places on your itinerary and should have a fine time (Tahoe, Yosemite, San Francisco will all be much cooler than the two deserts).

[MooseMom]

How quickly time flies, right?  Oh, I am so thrilled for you!  Congratulations on a wonderful 6 years.  I know you've had some ups and downs, but you're here and you are healthy.  There's no better way to commemorate such a great occasion than embarking on a thrilling road trip.

I hate the heat and wish I had some good suggestions on how to deal with it better while on tac.  I don't think you need to be concerned as long as you keep well hydrated, wear sunscreen and a hat.  Don't go for extended hikes in Death Valley in the middle of the day, for one thing!  Remember that lots of people who live in hot climates here in the US have transplants and take tac, so you can be confident.  I'm assuming you are renting a car?  If so, it will have air conditioning.  Use it!

Have fun, and thanks for sharing your tx anniversary with us!

[justagirl2325]

Congrats on your transplantiversary.  Here's to the next six.

[Charlie B53]

I was going to go on about T-stat, belts and hoses but a rental should be newer and in fine shape.  Maybe double check the radiator fill and overflow tank just to be sure.

METAL ice chests with real latches are about the only thing that will slow down a hungry bear.

Camping in bear country some stuff al edibles in a gunny sack, tie it to a rope tossed over a high limb, hanging it 15 to 20 feet or more off the ground out of reach of even a determined bear.

Take lots of pictures!

[LorinnPKD]

That's wonderful news!  Congratulations on six and wishing you many more!

And your road trip sounds amazing! 

[cassandra]

Congratulations Lainiepop!!


   




Love, luck and strength, Cas

[Paul]

Congrats on the 6, sympathy for the problems of last May/since, and deepest sympathy for your son turning into a teenager

[iolaire]

Concerned how I’ll cope with the heat any tips from USA peeps?!

And do I need to be concerned about the tacro  and the heat?!

Try to get hotels with indoor pools so you don't need to be in the heat to supervise the kids (if they are available around there), otherwise make plans that include outdoors activities very early in the morning and indoor activities starting around noon.

Congratulations on the transplant longevity.  I'm still in first year and in February and March I had three trips to the west coast right around lab collection dates. That did cause my Envarsus levels to be lower than normal. After all types of adjustments to the dosage levels it seems to have settled down to about where it was before the trips.

For those trips I decided it was best to move my schedule at the destination and take the pills at the normal local time in each time zone - I still think that is probably best, so as to not be taking the drugs in the very dark of night and mid day - instead of my normal 5 am /5 pm timing.  Also during trips I get a lot more exercise than when I'm at home. I sort of feel like its probably not worth worrying about those levels as they should even out and normalize if I was on longer trips. 

But I would expect if you were to get your labs done mid trip they might be off - so if that worries you it might be good to make plans to get tests and insure that your doctors will know how to interpret the results of US lab levels.

[lainiepop]

Hi guys thanks for all your well wishes and tips. We won’t actually be staying in Death Valley more like driving through it so all I intend to do is get out out air coditioned car for photo and get back in😂. Apparently that’s what what Steves mum did when he went as a kid 😂. Thinking of buying a fridge for the car for the million water bottles. Will carry a fan and water everywhere. When I went to Florida docs just told me to take my tac a couple hours later than normal then a couple hours later again. Said wouldn’t make much difference. I won’t be having bloods drawn there had them done a couple weeks ago and will get them done when I’m back in U.K. 

Found out some more exciting news this week. My daughters dance place are planning to take the junior inter and senior stage troupes (Lena’s youngest in junior at almost 7) to perform in easter hols next year at disney Paris 😮😀. Think I’m more excited that age is! Step aside kids it’s my dream to perform at Disney haha. Will be surreal as we went to Disney Paris 9 months after my kidney transplant and she was about 18months and I was still on steroids then and extremely anxious!!!  Xx

[lulu836]

Death Valley:  HOT          https://www.nps.gov/deva/planyourvisit/index.htm

Grand Canyon:    Crowded      https://www.nps.gov/grca/planyourvisit/index.htm

Please Google each desired destination to know what is important to see and how to get to them.  A GPS unit would help to get around easily especially one with Western US maps.