An Update from Jooles

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jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

An Update from Jooles

Post by jooles »

Well, it's been a long time since I have posted (although I try to read posts regularly). I'm nearly approaching the one year mark of PD - results seem fairly stable so I guess it's doing its job. No developments on the transplant front. I haven't heard from the Living Donor Coordinator at all since she told me that initial tests showed my cousin was a match. However, my cousin has also gone very quiet on the subject, so I guess it's not to be. Like most of us, I just patiently wait for The Call again. On a positive note, I have just returned from ten days in Lake Garda with my family camping (mobile home, so nor the real thing!) I was feeling anxious about Baxter delivery given the recent hiccups they've had, but I have to say they were amazing. A travel pack arrived ten days before departure with emergency contact info and nearest PD unit etc; transformer arrived as scheduled the day before, and on arrival at campsite there was relief all round as all my bags had been delivered promptly. We drove down so that I could transport the machine and all other supplies and stopped over in Freiburg. My PD nurse had given me an Extraneal bag to put in over night which saved me from having to unpack machine. Within half an hour of arriving at campsite, the machine was all set up and worked perfectly all week. It was so liberating to feel that I could travel and it was also a precious week with all the kids (probably our last family holiday for a while). I wasn't brave enough to swim even though I had been supplied with extra sticky Activity Pouches - didn't want to risk getting an infection and spoiling the holiday for all. So for anyone thinking of it but nervous, I'd so go for it!
In the meantime, I am enjoying the last few weeks of School holidays - then it's back to a new term. I hope all of you are well enough and hope that your new kidney is behaving Cathy!
Best wishes
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: An Update from Jooles

Post by SKM23435 »

Jooles,
lovely to hear from you. I followed your trials and tribulations last year with interest knowing I had the same to come. I'm about 10 months behind you in our "renal journey".
It's great to hear about your holiday. It inspires confidence. I'm just at the stage of plucking up courage to spend a night away from home in this country.

Enjoy the rest of the holidays.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Do it Sue! It's so liberating to get away and 'hook up' somewhere else! If I'm only away for one night I tend to take manuals and the bag warmer and just do a bag early evening and again in the morning. For the time being that does me. If it's longer than one night then I don't skip and take the machine. I always take a couple of spare and sturdy hangers so that I can suspend bags from hooks in the room etc! You get quite nifty at rearranging the furniture to suit!
Glad to know it's going ok for you too.
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: An Update from Jooles

Post by Dixie1 »

Hi Jooles

Great to hear from you! I was wondering how you were getting on! Just wanted to say I am so pleased that you managed to get away and have a holiday. It sounds like it all went really smoothly, so that's great! Re the transplant - I am really sorry that this has gone a bit quiet. That must be very disappointing for you.

Hope you get some good weather to see out the remainder of y our holidays! :)
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: An Update from Jooles

Post by MandyV »

So glad you went and enjoyed your holiday - I bet there is no stopping you now! I remember being very apprehensive for my first trip away (week 2 of PD and a work trip to Moscow in October - rather chilly), but once you have done it, it all becomes old hat.
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Lovely to hear from you Dixie and Mandy!
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: An Update from Jooles

Post by MandyA »

Hi Jooles,

So pleased to read on Grey's thread that you have had a transplant recently.

I hope things are progressing well.

My new kidney was also a bit sleepy to start with, but I now have an eGFR of 25%, and being free from dialysis transforms your life, doesn't it?

Best wishes,
MandyA
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Hi Mandy
Thanks for your good wishes. It's early days and I'm finding the clinic visits nerve-wracking. Creatinine only came down by a couple of points yesterday and there's protein in my urine. The question is whether that is from my own kidneys or whether the FSGS is transferring to new kidney.. Beginning of a very different journey but I feel so blessed.
Lovely to hear from you and hope all is well in your world!
Jooles s
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: An Update from Jooles

Post by AmandaClare »

Jooles, really glad to hear you got the call.

Hope you continue to make good progress, crossing my fingers for you. x
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Thanks Amanda. Hope you are keeping well.
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: An Update from Jooles

Post by Dixie1 »

Wow Jooles! You had a transplant! Fantastic news. Hope you are doing well. :)
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Thanks Dixie!
I keep saying those words to myself - still can't quite believe it. It's been a little rocky and last week I was re-admitted for a couple of days as my progress nose-dived and I became extremely breathless with heart palpitations. After lots of tests (lungs, heart, CMV), we now think it was the new BP drug I started on the Monday. By Wednesday i could hardly walk. Much much better this week and due to have PD catheter out on Tuesday. The early weeks seem to be all about getting the various drug levels correct and fine-tuning.
Here's wishing everyone out there good luck in receiving 'the call' soon!

Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: An Update from Jooles

Post by Grey »

man I am envious young Joules. I am still waiting for the date to be reset. On top of that I have a new cancer growth on my leg just below where they removed the last. Hope that does not effect the op...just cannot wait.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: An Update from Jooles

Post by Tibbs »

jooles wrote:Thanks Dixie!
I keep saying those words to myself - still can't quite believe it. It's been a little rocky and last week I was re-admitted for a couple of days as my progress nose-dived and I became extremely breathless with heart palpitations. After lots of tests (lungs, heart, CMV), we now think it was the new BP drug I started on the Monday. By Wednesday i could hardly walk. Much much better this week and due to have PD catheter out on Tuesday. The early weeks seem to be all about getting the various drug levels correct and fine-tuning.
Here's wishing everyone out there good luck in receiving 'the call' soon!

Jooles
Which BP drug?

I've been on a couple that really messed me up.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: An Update from Jooles

Post by jooles »

Tibbs
it was Doxazosin. they replaced it with Bisoprolol and have told me to mention Doxazosin if asked whether I have allergies. I have since heard iother patients in clinic say they have had adverse reactions too.

Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
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