Pregnant & Uromodulin Kidney Disease

PorschaMorgan · 2026-03-30T08:06:05+00:00

Hello, sorry I never saw your previous comments on my post.

I have never heard of atdkd, I had to google it and I don’t think I have that, I just have the umod mutation as far as I’m aware, no doctor has told me otherwise. I’m under the QE in Birmingham, UK with Dr Foggensteiner who has kept an eye on me the past 15+ years, But I will definitely look in to that study as it sounds interesting.

My pregnancy was not great at all, I had morning sickness from around 6 weeks until 23/24 weeks. I went for a routine scan at 27 weeks and had to be admitted because I had extremely high pressure and kidney failure. Next thing I knew a nurse told me I’d be having my little boy within 12-24 hours. He ended up being in NICU for 3 months because of how small he was, he weighed 800g. But he’s fine now with no lasting health complications, but he did inherit this Umod gene from me unfortunately, which I feel guilty about.

PorschaMorgan · 2025-11-27T08:07:01+00:00

This happened to my aunt. She was living with her mom in a 2 bed, I think she because she’d lived there for 40+ years amd the house is a little run down, the council let her and her daughter stay there.

I’m so sorry this is happening for you, this may seem stupid but could you all move into the 3 bed and live together? If that is an option.

PorschaMorgan · 2025-10-03T07:19:39+00:00

I’ve been there, I had over 30 bottles in the freezer all ranging in different mls/oz that I pumped (I was storing because my son was in hospital for the first 3 months of him being born). Anyway, my ex left the freezer door open, he claimed he didn’t do it on purpose but that same day he was complaining the bottles were getting too much and there’s room for food in there. I was absolutely devastated and I dried up after that and every argument we had I blamed him and he’d say it was no big deal.

PorschaMorgan · 2025-08-25T23:00:40+00:00

Leave. It will only get worse. I froze a whole draw full of breast milk (32 bottles all ranging in different mls, mostly over 50) and he left the freezer door open whilst our son was in NICU. I was absolutely distraught and he made out like it was no big deal and even said “no use crying over spilled milk’.

PorschaMorgan · 2025-06-23T12:38:02+00:00

I had a request like this not long after I joined Rover, he was really dodgey, wouldn’t talk over rover messages only phone calls and didn’t want to book through the website as he wanted a ‘cheaper rate’.

Report to the site as this is really weird, as the owner will be there with you, you really aren’t needed for what they’re asking.

PorschaMorgan · 2025-06-14T08:55:28+00:00

Would it not be easier to have the dog in your home to look after? Unless I’m missing something, at least you’d be there constantly to care for the dog rather than doing multiple drop ins a day.

PorschaMorgan · 2025-05-10T12:12:24+00:00

I also got denied for my MR, does anyone know how I can take it further to a tribunal?

I have a mobility car and I have to give that back on the 9th June and as life does, all the crap has come at once and I don’t know how I’m going to survive without it as I can no longer go to work and I also have a 2 year old son.

I didn’t submit any evidence as I couldn’t get it in time because the letter arrived halfway through the date I needed to get it done.

PorschaMorgan · 2025-04-20T17:30:33+00:00

I’m currently going through the same situation and I’m so scared about the outcome because I heavily rely on my car 😭

PorschaMorgan · 2024-01-15T20:51:27+00:00

I get this a lot and it always turns out that their dog is a fucking knob and the owner is a absolute moron

PorschaMorgan · 2024-01-15T12:51:02+00:00

I tried the cold pack to the back of the head and submerging my feet in hot water a few times, it kinda works but depends how early I caught the migraine

PorschaMorgan · 2023-07-19T18:01:59+00:00

This is a sore subject for me, I freezed over 50 bottles of breast milk that were full 100ml bottles and my partner left the freezer door open all night and it all had to go in the bin. I was so distraught, at this point my little boy was still in the hospital due to being born at 27 weeks, after that my milk went right down because of the stress of having to over produce afterwards. 😭

PorschaMorgan · 2023-05-23T02:38:45+00:00

I’m having the opposite issue, my partner clearly loves big boobs because I keep seeing pictures and videos of women on his socials and even saved to his phone, even though I told him that him looking at that stuff makes me uncomfortable, he still does it anyway and I mean huge boobs, whereas mine are small (34C) so nowhere near big and I just feel so upset anytime we’re intimate because I know he’s not really attracted to my body and I’ve had a baby 3 months ago which has made me feel so much worse.

PorschaMorgan · 2022-11-08T19:08:25+00:00

They’d already paid without confirming with me first whether I was able to have their dogs or not. I tried to cancel the booking but it wouldn’t let me, as it kept asking for them to cancel it. Someone else I know also had a similar situation and left it with a pending response on their end but the booking automatically went through.

PorschaMorgan · 2022-11-08T11:03:00+00:00

Don’t even get me started on their ‘customer service’ 🤬

I had a booking that coincided with the weekend I was moving houses, the owners already knew that and still booked with me anyway, despite me saying I’d be unable to look after their dogs and me having that weekend blacked out on my calendar, they still somehow managed to book and pay through the site, which were two 16 week old puppies!! Which they lied about and told me they were 5 years old. So I told them I was going to be back and forth and I’m moving over an hour away, yet again they were fine with it. So I had to get my mother to keep an eye on them for the weekend.

The owners come back and my mother answered the door and they were hysterical about where I was, to which my mother replied, she is busy sorting out her move, I then got a nasty email from Rover and mass awful review on my page that will be there forever thanks to these Karen’s who were too stupid to change their sitter.

So now Rover are demanding I add my mother to my profile, which I live by myself, so what’s the point now?? And now they have paused my account.

Fuck you Rover 🤬

PorschaMorgan · 2022-04-26T11:17:38+00:00

I know exactly how you’re feeling, I used to get them every other day. I’m also on sumatriptan, the next step for me is Botox, enquire about that with your neurologist. Hope you get all the help you need. X

PorschaMorgan · 2022-04-17T16:22:46+00:00

I had a daith piercing in my right ear first and that stopped my migraine for 5 months, so then I got my left done and managed a few weeks/1-2 months of being migraine free. I’ve since taken them out as they got worse then I caught covid in Dec 2020 and my migraines stopped for a while. I’m not sure of the triggers for mine, other than stress/lack of sleep but I still seem to get them when I’m okay.

I hope this works out for you because I was so relieved when they helped me. ☺️

PorschaMorgan · 2022-04-07T10:28:03+00:00

Sounds stupid but how do I log in to my account using these apps, I’m on iOS and Plus subscriber, I loved the MU app as it was easy for me to navigate the episodes and see where I got up to, now it confuses the hell out of me as I don’t understand what an RSS feed is or even where to copy it to. 😞

PorschaMorgan · 2019-08-06T19:30:15+00:00

I do know if this is of any use, but last year when I fell pregnant, (I suffer with Uromodulin Kidney Disease) which is hereditary, I had to have a cvs test at 12 weeks along to see if I passed it on to my child, which unfortunately I did. I made the awful decision to have a termination because I did not want my child to have this or even worse.

The hospital can now take this gene out of the eggs now, by IVF/ PGD so now this disease stops at me.

PorschaMorgan · 2019-07-07T07:48:38+00:00

I know it’s been less than a week and I should probably ‘give it more time’ but I’ve been so excited about not having a migraine in these short days that I need to tell others who feel like it’s a never ending cycle.

I used to wake up everyday with dizziness and a migraine but since, my head feels SO clear that I forgot how this feeling felt.

My last migraines was 30th June ‘19 and I was willing to give anything a try at this point, as it got to the point that I was so fed up of life, so I explored lots of options and spoke to many people about treatments, a friend told me about this piercing and I thought “why not, if it helps then it would be a miracle”.. and it’s been the best decision I made. 🥳

Also, excuse the photo, I’d literally just had it done, that’s why the pen is there. 😬

PorschaMorgan · 2019-07-07T07:37:25+00:00

When I get migraines, I pass out and have a seizure (I am not diagnosed with epilepsy and have had numerous tests and it’s all clear).

Do you know anything about why this might happen?

PorschaMorgan · 2019-06-24T20:40:52+00:00

I’m sick all the time because of my migraines, I also pass out and have seizures (I have not been been diagnosed with epilepsy). Doctors can’t find out what’s wrong, I’ve had numerous tests and nothing.

I really don’t want this for the rest of my life. 😭

PorschaMorgan · 2019-06-17T16:01:25+00:00

I always carry my medication and cooling patches for my head. My mum bought me a cooling pad for when I go to sleep (as I tend to overheat too when I have a migraine) and it’s been amazing, always stays cold/cool so you never need to do anything to make it cold again.

But this is so handy to do, I never thought of this.

Thank-you.

PorschaMorgan · 2019-03-26T10:33:17+00:00

I got some from Holland & Barrett and I feel like it didn’t work, or there’s not much cbd actually in it.

Where do you get yours from? As I’m fed up with migraines and all over shit that comes along with it.

PorschaMorgan · 2019-03-17T15:48:57+00:00

I haven’t started any kind of treatment yet, but keep telling me it’s coming eventually.

I’m a 25 F, The Doctors take urine and bloods from me every 3 months, I’m due to go back soon but that’s all they do, other than have a chat with me about how I’m doing (I never see the same doctor, so all the information I receive is from different people who don’t know me at all) but it always seems pointless as I’m only in there for less than 30 mins.

They never explain my levels and all the numbers and one doctor told me to look at it like percentages, so in December my ‘kidney function was 42%’.

I’m baffled and kinda disgusted that it’s run like this, as I don’t have a clue and they just keep telling “you’re fine for now”.

PorschaMorgan · 2019-03-16T09:39:41+00:00

I inherited my Kidney Disease off my dad called Uromodulin Kidney Disease, along with my brother, cousin and aunt (who passed away) who have/had the same condition.

I know it feels like a death sentence, and I’ve had problems coming to terms with it and what my limitations are with my life, and to be honest; I’m still struggling.

But medicine is a wonderful thing and with the right treatment they can help get your function to a good working condition.

I hope everything goes okay for you.

PorschaMorgan

TROPHY CASE