Introduction: I have IgAN

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Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Introduction: I have IgAN

Post by Jason1976 »

Hi all

My name is Jason, I'm 39 this year and I was diagnosed with IgA Nephropathy in 2002 (yes, its been 13 years already!).

My condition was largely stable the past 10 years, with proteinuria ~1.5g/24 hours and no other symptoms apart from fatigue. Honestly, I think I had gotten used to living with IgAN and sometimes even forget I have a CKD apart from the daily dose of medication and 6-monthly followups with my nephrologist. Serum creatinine was around 180-200 ish the past 10+ years.

Things started going downhill about 2 years ago when my creatinine started creeping up to 280 during a routine follow up. That prompted a repeat kidney biopsy about 6+ months ago which came back with 3/10 cells still functioning (correlating to ~30% kidney function). My creatinine 6 months ago was 370 and it was still 370 3 months after that.

Then this week I got the bad news, creatinine is up to 580, GFR is around 10... and all sort of other irregular blood readings, which I've been given meds to correct. Doc has said that if I have a living donor, I should perform transplant within the next 3-4 months, failing which I should expect to need dialysis anytime between now and end Q1 2016. Blood pressure is good (126/78) and I've no symptoms apart from a bit more fatigue of late. I expected it to come, but not this soon, but I'm dealing with it.

Good news is that I've got 2 wonderful sisters, who've outright volunteered to come and be tested. Scheduling that for end first week November and hope one of them's a match. Its a great act of love and self-sacrifice and I'm grateful whatever the outcome of the testing.

Hoping to meet and share experiences with folks here. It sucks but I'm sure I'll pull through.

Cheers
Jason
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Introduction: I have IgAN

Post by SKM23435 »

Hi Jason,

Welcome. It sounds as if you are having a rough time. Your sisters both sound like heros.
I personally have found the support on this forum great and the transplant clinic at the hospital meeting fellow patients invaluable. Even the consultant commented that as a patient you learn more in the waiting room (he always ran late) and on forums like this than you do from him. I'm not entirely sure that's true as regards the finer medical points but as regards the day to day living it certainly is.

Do let us know what happens as regards a possible transplant or dialysis. Ask any questions you think we can help with.
It may seem a lonely journey. I like to think of us all as members of an elite club. Those outside will never fully understand but those in the club do.

Best wishes

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Hi Sue

Thanks for your note!

Ironically, everyone is saying that I'm coping with it remarkably well. I'm not sure if it's because I've kind of expected this the last 13 years, or if maybe the full realisation of what's happening hasn't hit met yet!

i guess what I think about most the last few months is if if I don't get a transplant, then how I will adjust life and work around dialysis. Looking at PD rather than HD, thinking how that will affect my work (I'm in a regional role which involves travel). Likely need to find another job.

Anyway, it's great finding a forum such as this. We all learn together as we progress through our individual journeys. :)

Cheers
Jason
Chris In Trowbridge
Posts: 94
Joined: Fri Jan 03, 2014 10:46 am

Re: Introduction: I have IgAN

Post by Chris In Trowbridge »

Jason, was great that you was able to keep your creatinine at 180-200 the past 10+ years, any ideal why the sudden big drop in the last few years ? had you been ill or bad infection maybe ? hope all goes well for you.
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Hi Chris

Thank you for the well wishes. No idea in why the drop. No lifestyle changes, diet was the same etc. Doc said he sometimes see that happening where the kidneys sustain the load as long as it can then suddenly 'gives up' resulting in a big drop. The biopsy results correlate with the bloodwork on the approximate kidney function. Been steadily dropping since then, low protein diet notwithstanding.

When I was first diagnosed my first neph told me expect around 10 years, and it's been 13, so I guess I see it as 3 extra years. :)
Chris In Trowbridge
Posts: 94
Joined: Fri Jan 03, 2014 10:46 am

Re: Introduction: I have IgAN

Post by Chris In Trowbridge »

Jason, lets hope one of your nice sisters are compatible for you.
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Thanks Chris.

One of them is of the same blood group, so that's at least a start.

Slightly worried the next couple of weeks as I'll be traveling quite a bit on business - nothing worse that to need to go the the emergency room in a foreign country for emergency dialysis! Hope the kidneys hold up until December! :D
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Hi all

I'm a week away from my sisters' appointment with the transplant team.

I've started feeling a bit light headed the past few days, the kind of feeling when you've been sleep deprived for 2-3 days. Is this one of the symptoms that I will need dialysis soon? When I last spoke with the transplant coordinator, she said I could need dialysis anytime now and some of the symptoms she described were swollen feet, nausea, appetite loss.. but didn't mention this.. not sure if it's one of the symptoms or late nights over the weekend. Any thoughts?
MatthewC
Posts: 71
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Introduction: I have IgAN

Post by MatthewC »

Are both your sisters going? Have they not done a tissue type match yet? In my case that test was done separately on three potential donors and then only one went forward for more testing (after a family discussion as to who was the first choice!).

NB The testing can take months so they need to get a move on! See the blog below for lots of info for donors.

Matthew
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Thanks Matthew.

Turns out only one sister is the same blood group as I am, and we are both doing the cross match this week. Wish me luck :)
Chris In Trowbridge
Posts: 94
Joined: Fri Jan 03, 2014 10:46 am

Re: Introduction: I have IgAN

Post by Chris In Trowbridge »

Good luck Jason.
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

THanks Chris

I have a confirmed transplant date for mid-January.. doc says they will fast track me because I've not started dialysis yet, so will need to quickly get all the required tests done. I've got a follow up almost every week from now till the surgery, so I guess I'll be even more familiar with the hospital than I am now.

I've been told that post-surgery, I will need to visit the hospital every 2-3 days for at least 2-3 months, then following that, every 2-3 weeks for 2-3 years.. that seems like a lot of follow up. Is this similar in other countries? The coordinator also mentioned no travel 1 year after surgery, which would complicate things as my job is regional and involves travel. I know not the best time to think about work, but I will need to face up to reality -and soon.
eclair
Posts: 1
Joined: Thu Dec 17, 2015 10:08 pm

Re: Introduction: I have IgAN

Post by eclair »

Hi Jason,

I'm new to this forum and here is the short version of my experience..

I've had a similar experience to you in that I was diagnosed with IgAN when I was 14 (I'm now 35) but it didn't become a problem until I was 24 when my blood pressure went through the roof and as a result I spent 2 weeks in hospital. My kidney function went down to 15% and creatinine was around 200. However my specialist managed to control my blood pressure brilliantly and it stayed stable for another 9 years until I turned 33, around the same time I moved to London in Feb 2012..then it started to decline.
By July 2013 my kidney function dropped to 11% and creatinine rose to around 330 and my new specialist at Bart's London advised me to start thinking about dialysis and transplantation. So I moved back to Melbourne in September where fortunately I had a sister who was willing to donate. I was on PD from October 2013 -February 2014 and the operation took place on Feb 17th 2014. Which went perfectly.

Regarding dialysis, HD ws never really an option for me (which I am very thankful for) as I was considered to be healthy (for a CKD sufferer) and still active. I dialysed overnight and I used to pack my machine with me in the car on the odd occasion when I stayed at other peoples house. They can also send your bags to wherever you are if need be if you do need to travel.

To answer your question about follow ups post transplant. At the Alfred Hospital in Melbourne where I had my transplant, I had to go back every day for a week, then twice a week, then once a week, then once every fortnight then once a month until about month 4 when it was 6 weeks, then once every two months with maybe an extra blood test in between depending on what changes are being made to my medication. It does seem excessive, but for me it was totally worth the inconvenience because I needed to make sure I was doing everything right to make sure it was successful. Especially since it was my sister who gave me her kidney. I also trusted my specialist whole heartedly as he kept me healthy for so long. He also happens to be the Deputy Director of Renal Medicine at the Alfred so I was very lucky to have a very experienced doctor looking after me all this time.
In Feb this year, exactly 1 year after my transplant I left Melbourne for London and I am again back in the care of Barts London and I do bloods every 6weeks- 2 months, again, depending on what changes are being made. From next year, if all is still going well it will be every 3months. Just like it was with just the IgAN for all those years so nothing more than I was already well accustomed to!

I was also advised against travel for the first 12 months post tx. One of the first questions I asked was when can I move back to England. However I think it's all to do with your own circumstances. As my travel involved actually moving across the to the other side of the world, I can only speak from my own personal experience but between week 8 post op and 10 months I had chronic colds and sinus infections and the last thing I wanted to do was be in any confined spaces with people and their germs.These infections only started to clear when my immunosuppressants where reduced towards the end of the 2014. This year I've only had one cold that lasted a couple of weeks even though, since I've been back in England, I have traveled extensively back and forth to Europe for work.
You'll know when you feel ready to go back to work. And you just need to be careful around people who are sick.

Just before my surgery my kf was 5% and creatinine over 900 and now nearly two years post tx my creatinine is 90 and gfr 64.

My advice post tx is to take every day as it comes and not to be too hard on yourself. If you feel like resting then rest. I went from sleeping 20 a day to being wide awake for 20 hours a day wondering what people did with all this awake time. Obviously the high doses of steroids play apart in not being able to sleep. I strongly suggest talking to your doctor about managing the sleeplessness. The manicness you'll feel from the steroids will take some getting used to after years of IgAN fatigue. Exercise helped me with this.
The first few weeks you'll be in recovery from the actually surgery and getting your head around all the meds, then when you're feeling stronger you'll feel like getting out more...then maybe thinking about work.
I also can't stress eating well (cut salt and sugar completely, vegetables are your best friend!), easing back into exercise and drinking loads of water. Because of this I've managed to keep my weight stable despite the initial high doses of prednisolone but did have some pred moon face.

I hope this is helpful. I would of loved to of had someone to talk to pre transplant that had gone through this. My medical team where great but it's just not the same as having someone's advice who has actually experienced it. Also in all these years I don't think I've actually met anyone else with IgAN. So I am more than happy to answer any other questions you might have.

Best wishes
Erin
Jason1976
Posts: 21
Joined: Thu Oct 15, 2015 2:36 pm

Re: Introduction: I have IgAN

Post by Jason1976 »

Hi Erin

Thanks so much for your post! I think it comes at the right time as I'm approaching surgery date and I've been asking myself all the same questions you've just provided some answers to. It's really great to have a community of people who can relate so I'm glad you took the time to post! :)

I'm based in Singapore, and while the cost of care is expensive, we probably have the best medical care in the region. I know I'm in good hands. Having completed most of the pre-surgery work-up, I'm counting down the days to surgery, which is mid-January 2016. Latest blood test this week wasn't too good, showing that my creatinine spiked from 719 last week to 999 this week! However, I feel fine and think maybe it may have to do with the dose of bactrim I took on Friday (I did an allergy screen to confirm a bactrim allergy I thought I had). Doc recommended dialysis but didn't push it when I said I felt perfectly fine, but that I needed to monitor myself closely over the Christmas holidays. Hoping my creatinine drops back down some at next week's blood test...

Strangely enough, I'm actually dreading the thought of dialysis more than the surgery itself. I guess I've been dreading the possibility of dialysis the last 14 years, so even having to undergo dialysis at all scares me. I will need to be dialysed 3 times the week before surgery, but I'm hoping my kidneys last the next 2 weeks until then *fingers crossed*

I don't really know what to expect post-surgery, so your post was good to help manage my expectations a little - I was thinking I would be up and about after 1-2 weeks and probably back at work in a month! Let's see...
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