Polycystic Kidney Disease

Hi, my name is MsTPitts.

#MightyTogether #FabryDisease #PolycysticKidneyDisease

Hi, my name is bryan2023. I'm here because

#MightyTogether #Anxiety #Depression #PTSD #ADHD #ReflexSympatheticDystrophySyndrome #PolycysticKidneyDisease

Hi, my name is Mike1958. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #PTSD also end stage liver disease , polycystic kidney disease , chronic pancreatitis , osteoporosis and beaten by cops for videoing

I have been in so much pain since January. We don't have health insurance. I have been coping until this last Wednesday.
I was admitted to the hospital through emergency.
I had a cyst the size of a grapefruit and a dead ovary removed.
I also have polycystic kidney disease. My kidney function was at 10% yesterday. They are holding me in the hospital until they determine if my kidneys have failed.
I can't afford the hospital. I can't afford treatment for end stage kidney disease. I am trying so hard to be strong but and I just going to die? I am 56.
#ChronicIllness #Pkd #Surgery #whats next

I have just had my 2 year post op scan to see if I am still in remission, so thought I would share some of my story with you in case it helps.

My family has #PolycysticKidneyDisease running in the family. It starts to display symptoms in the late 20s, but both my mum and her brother knew around age 18-21. For me and my cousins, there was a 50/50 chance that we would inherit it, so I started investigations not long after my 24th birthday. I had a mass in my right kidney, which they removed through open surgery. In the year after, I was cleared of PCKD but diagnosed with a renal #Cancer linked to Birt-Hogg-Dube Syndrome, and genetic sequencing to confirm both of those. I am also on the Chronic Kidney list as I have one happily functioning kidney left.

One thing they never told me was to have someone with you at every appointment. After my ultrasound, I was asked to have a CT scan, then went to get results after that. I had a friend working at the same hospital who I knew would be around, so we decided it probably wasn’t necessary to have my husband there as well. Just getting the news you’re not expecting is hard to carry on from. I remember trying to keep it together when the consultant was talking about options, but that didn’t really sink in. Coming out of the room, a nurse asked if I was alright and I just broke down on her. Having my friend come over and help me going through that realisation that they think it may be cancer was a great help, but trying to remember everything at home was then quite difficult and emotional. Even the small appointments are worth having an extra pair of ears as it can help reassure you at home that you heard and interpreted everything correctly.

Getting my staples out also was so much better with someone there. Thankfully I had another friend who was adamant that she would drive me round the corner for my appointment, and I was so glad. My wound did not heal well, which was evident when the nurse went to get the senior nurse, who then went to get a GP. Having my friend there just stopped the panic setting in and gave me a distraction.It was the same when they told me I had Birt-Hogg-Dube Syndrome. I went in all ready to write stuff down, but then because they were asking me questions too, I then had to go back and research the gaps at home. I am now a pro at doing this, but only because there isn’t much change in information shared now.

It’s not always in your head. Whilst I was in hospital, I started getting really bad hot flushes and sweating profusely. So much so that I needed my own fan day and night. A couple of days later a doctor comes to see me and one of his theories was that it was due to psychological distress. I know that #MentalHealth and physical health have a cross over point, but the amount of medication I was on was the main cause. There have been times where I have felt like something was just in my head, only to find out that it’s not. My surgery meant cutting my right side open, taking my whole kidney out and making sure that nothing else was there in the surrounding tissue. Since then I have had so much more trouble with my back and side, and it was only being told how much weaker I had become in my back that made me realise it wasn’t just me being silly.I managed to get to the physio about 18 months later due to some painful episodes with my back, and I am slowly getting stronger. No one told me that this may need to happen though.

Any sort of invasive surgery like I had changes your body so much than expected. I now have a lovely long scar which starts just under my shoulder blade, and curves down towards the front. Instead of curving in at my waist, like my other side does, it sort of goes outwards – losing the hourglass outline I used to vaguely have. Sometimes my husband will hug me and it feels so weird that I jump – I am still not used to touching my scar area. I have another one from over 10 years ago that I am ok with now, so maybe in my 30s I’ll be ok with this one.

As a young adult with cancer, no one tells you how overlooked you are as a demographic. I feel really lucky that they got it all out in 1 surgery and I didn’t need to have any other treatment. It almost feels weird to say that I am “in remission” and “a survivor” because my story is so different to others out there. I was the youngest in my ward and I had no extra support outside my friends and family. It’s only afterwards that I have found other young adults who have had or are going through treatment through social media. There are lots of great charities for children and awareness raising for older adults, but I find it hard to know where to look as someone in my mid twenties. I know I am not alone, but I don’t feel like I fit into the stars and pink sweatbands of other groups.

It has been a bonus though sometimes. During my master’s degree, using the “ card” gave me a bit extra breathing room with deadlines, especially around the time of my 1 year scan. I feel less bad about needing to sit down on the tram on the days when I need it. Drugs appear to stay in my system longer, so when I was on Diazepam for my back, I got an extra day of pain relief (and also the fuzzy head, but sweet pain relief!). It may not be a bonus all the time, but it was then. I’ve also learned to be kinder to myself and be more intuitive with when I can do more or need to do less.

Before all this though, I had no symptoms that would make me suspect there was something wrong. No sudden weight loss, my immune system felt stronger than ever, no fatigue or lumps etc. I probably never would have gotten checked out if it wasn’t for my family history of PCKD. Just shows how important it is to have a smear, check your poo, don’t leave suspicious lumps too long. If you’re in the midst of , don’t be afraid to ask for help and make sure you get all the support you need afterwards too.

And the frickin app freezes on you and all your text and thoughts disappear. From the screen but not your mind but your to tired and to exhausted, physically as well as emotionally to write it down again. Loads of love and hugs to all of you! ♥️♥️♥️#CheckInWithMe #ChronicPain #PolycysticKidneyDisease #ChronicFatigueSyndrome #Depression #Anxiety #Selfharm #Selfcare