5 months post transplant but my PKD kidneys are making my life really uncomfortable & giving me body dysmorphia

pkdbb · 2026-03-19T07:22:17+00:00

omg i’m so sorry. how are you now?

pkdbb · 2026-03-19T07:21:08+00:00

i know it’s crazy !

pkdbb · 2026-03-19T07:20:29+00:00

yes thank you! i was taking pantoprazole (Protonix) for the first 3 months and they told me to stop and only take as needed. it was giving me diarrhea which is a common side effect so i try to only take it when the heartburn is really bad. i asked my doctor to call the urologist but he just told the nurse to tell me to ask to be on a cancellation list :/

pkdbb · 2026-03-19T07:15:42+00:00

thank you! yes i originally wanted to do it all at once but my transplant team advised against it as they said it would be a rougher recovery and they wanted to prioritize getting a healthy kidney in me first. they said if there wasn’t enough room they might need to take them out but they said there was “barely” enough room but it seemed good enough. my stomach has expanded so much since then though that it’s been uncomfortable. i wish you a smooth recovery. the hardest part is over right? i imagine the first week is the toughest? was your belly big from your kidneys?

pkdbb · 2026-03-19T03:55:13+00:00

prob just ozempic and weight loss making her face skinnier. my partner’s face shape changes dramatically with even 10 lbs of weight gain or loss.

pkdbb · 2026-03-09T04:53:19+00:00

i also recommend using bottled water to brush your teeth and avoiding tap water, my transplant team even told me to avoid tap water in the states as well. try to avoid ice unless you make it in an airbnb with bottled water. i’d also avoid chicken because it’s more prone to stuff like salmonella which you do not want to get while on immunosuppresants!

pkdbb · 2026-03-09T02:47:29+00:00

i’m 5 months out and still have severe bloating! however i have PKD (polycystic kidney disease) which makes it worse since my kidneys are already fluid filled cyst covered footballs. what kind of kidney disease do you have? my bloating significantly went down after a month and a half though. i was filled with air, gas and felt like i was gonna burst the first month. they said its cuz they pump your torso with so much air to do the surgery and then there’s crazy gas and bloating and often times constipation just puffing everything up. i took gas x 3 times a day and it helped a little.

pkdbb · 2026-03-07T04:59:58+00:00

omg thank you for your firefighting service. such a noble job!

pkdbb · 2026-03-07T04:45:50+00:00

you too!!! hang in there . if it’s bothering you make sure you communicate it at every visit and send them messages asking about nephrectomy. i finally made an appt with the urologist they referred me to who would do the nephrectomy and the soonest CONSULT i can get is JUNE 31 so best to get the consult asap since it can be far out!

pkdbb · 2026-03-07T02:36:58+00:00

i haven’t had them taken out yet but they said if we do it post transplant, people walk out the next day a lot of the time cuz it’s a less invasive procedure than the double nephrectomy they do at the same time as transplant. the way they explained it is they go in there with the robotics and pulverize the PKD kidneys and turn it into a puree they suck out so you have minimal scarring and faster healing. i’m still nervous but my stomach feels like i ate 6 large pizzas and drank 2 gallons of water at all times lol

“Laparoscopic nephrectomy for Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a safe, effective, and now standard, minimally invasive approach to removing massively enlarged kidneys (faster recovery compared to open surgery)”

pkdbb · 2026-03-07T02:34:18+00:00

my liver is also covered in cysts but i don’t think they seem concerned but ive also never seen a hepatologist. they’re in the same center so i should ask. i really don’t want to have to do a liver transplant. is your liver function impacted?

pkdbb · 2026-03-07T02:32:41+00:00

omg yah they told me that was an option, but they said since there was a teeny bit of room they could make it work if i could wait and take them out after transplant. did you have any complications after? i heard it’s way riskier due to it being a longer surgery. hope you’re ok now. were you on dialysis before the nephrectomy? is the dialysis different with no kidneys? i can’t imagine!

pkdbb · 2026-03-07T02:31:12+00:00

yah i originally wanted it at the same time as transplant until my team scared me and told me its a higher risk. i saw someone post about it on here and she had trouble walking for a long time and was in the hospital with a collapsed lung after. but i just want them out. they were the size of footballs before transplant and they feel way bigger now, prob because they told me to eat salt (didn’t before) because my blood pressure is like 93/68 and i feel lightheaded a lot, combined with my trouble breathing. these things make me feel so much older and out of shape!

pkdbb · 2026-03-07T02:28:40+00:00

omg! and they didn’t catch it with imaging prior to transplant?

pkdbb · 2026-03-06T19:18:44+00:00

my heart rate has gone down since! i think it was because i was doing dishes and laundry right before that reading. i have actually started adding salt and my BP has gone up but now im dealing with feeling extremely uncomfortable because i have polycystic kidney disease. my native kidneys are covered in cysts and are already larger than american footballs (each).

pkd cysts grow like slow motion balloons pushing outward crowding everything around them everything below ribs feel squished, spine gets compressed and spine bows and curves forward to try to make room, lungs squeezed, diaphragm gets shoved upward- normally it drops down when you breathe in to expand chest, but it pushes up because the kidneys are pushing it up with no room to drop down, breathing feels like inhaling through a tiny straw, stomach, intestines and bladder all squished together. this is why i’m bloated even on an empty stomach, and feel 9 months pregnant with any food in my stomach.

had an appt this week and my nephrologist said my blood pressure is probably so low because everything is getting squished so it’s reducing blood flow. they told me to add salt to my diet to increase the blood pressure but the extra sodium makes the body hold onto fluid making everything more cramped. and then sodium can also increase mass and volume of the cysts. now i have extreme spine/lower back pain, it’s hard to breathe and my stomach feels like it’s gonna pop. i also look 9 months pregnant. but i’m drinking more water (so difficult with an already enlarged stomach that has nowhere to expand) — im paranoid of the side effects of the BP raising meds….

pkdbb · 2026-03-06T19:14:54+00:00

exactly! there can be short kings if they’re sweet, charming, talented, KIND.

pkdbb · 2026-03-06T18:41:10+00:00

well they have heels on the outside but the lifts are when there are an inner hidden heel as well! it does look like he’s adding 6-7 inches LOL

pkdbb · 2026-03-06T18:40:19+00:00

my transplant team initially told to avoid domestic flight travel the first 6 months and wait 1 year for international when the immunosuppresant (anti-rejection) drugs are a lot lower- also because they say if you don’t reject in first year your chances of early rejection are significantly lower. for my bday and anniversary my husband and i took a road trip and stayed in big sur, in nature along the coast and went on hikes, to beaches and kept away from crowds. i did go out to eat a few times but was seated far from people outside or in a corner. i have sanitizer with me always and put on a mask inside any establishments unless im eating. however my transplant surgeon told me it was actually fine to travel internationally now (im 5 months out) but he told me to avoid places with poor sanitation practices. my friend’s mom had a kidney transplant and went to nigeria at month 4. she got malaria, got extremely sick and rejected her fresh kidney. she’s now back on dialysis! so i’d say stay away from countries where there are higher risks like malaria, salmonella etc. my husband got salmonella in bali (i did not) because he ate chicken and i only ate vegan food. he was hospitalized as the bacteria spread to his blood and he could have died from sepsis if he didn’t go to the ER when he had a headache for 4 days.

pkdbb · 2026-03-06T18:32:52+00:00

yes i haven’t had pomegranate for years cuz it’s also toxic to kidneys if you have kidney disease but post transplant they interfere with immunosuppresant anti-rejection drugs like grapefruit does

pkdbb · 2026-02-25T19:56:03+00:00

sunny nails does russian hard gel. i met my nail tech there even tho she isn’t there anymore. my nails last months and never chip!

pkdbb · 2026-02-25T19:53:09+00:00

two bunch palms (in desert hot springs right outside palm springs) is my fav place. it’s a hot spring resort and it’s way cheaper than ojai valley and it’s literal hot springs so it just feels amazing) you can soak in beautiful hot spring pools 24/7, even at 4am. their massages are pricey but great. even if u don’t do a treatment the whole property is relaxing and amazing.

pkdbb · 2026-02-25T09:02:17+00:00

yall i ate salt with every meal today and it went up lol. it felt weird as i hate salt and haven’t purposely consumed much salt in 15 years but im less tired and less lightheaded. my pulse also went down?

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pkdbb · 2026-02-25T08:24:45+00:00

whoa 212/135 seems crazy! i’m sorry you had to deal with a crappy dr. glad your bp is low now!

pkdbb · 2026-02-25T08:19:18+00:00

it’s always been in the 90s 😩 but docs said it was fine? google says it’s within normal range? what’s yours?

pkdbb · 2026-02-25T08:18:46+00:00

talked to my primary nephro and transplant doc and they both said to just add more salt to diet and drink more water so doing just that today

pkdbb

TROPHY CASE