Hi all. My name is Amanda and here is my story. I was born in 1990 and all seemed well until I fell very sick. Here is my story. In 1992 I ended up needing a kidney transplant from my mother due to interstitial nephritis. My Kidneys were not functioning properly and my mom got tested for compatibility. She ended up being a 5/6 which was good news! Parents are typically about a 3/6. The local hospital we had been staying at couldn’t handle the transplant in 1992 and sent us to Children’s Mercy West in Kansas City. I was their first transplant on a baby. The human body really is quite fascinating! As an adult, my mother’s kidney was adult sized and I was a small, petite and sickly two year old. After being transplanted into my body her kidney shrank back down and then regrew again through all of it’s stages with me. We were told it would work for approximately three years. Medicines were pretty harsh and Prograf and Cellcept weren’t around. It ended up working for 16 years because I am half made of kryptonite and plain awesome. Jokes! Note: they attempted to actually do this surgery three times. One time they opened her up, I sneezed and they called it off. Third time was the charm. Anyways, it worked 16 years.

That put me summertime, right before my senior year it failed. My dad and mom decided my dad would be my donor so my two elder siblings didn’t have to be tested nor worry about donating a kidney. That man and idol half killed himself to donate his kidney to me. They put him through a million tests. One was blood sugars. He knew he was diabetic but also knew I had to have a kidney. At the hospital they gave him a sugary drink and then he had to drink it there and come back in an hour to test his levels. This was for his safety to donate which wasn’t his priority. After drinking the drink he left the hospital and stuck his fingers down his throat and forced himself to purge the “drink”.. literally popped a blood vessel in his eye. It was snowing heavily out so he walked six miles and started shoveling random driveways around the hospital for an hour to make sure he would pass. He did. Also lost about thirty pounds that the doctors said he would need to lose to donate. He wasn’t obese or anything but slightly heavier than the “average” on their charts. They had checked if we were a match and we were a 3/6.. typical parental match with zero antibodies. They scheduled a date for the transplant and we drove down the night before to check in and stay the night. 6AM came early and I hadn’t eaten in forever but hey, I was gaining a healthy kidney. The nurse came in and said that she had to draw both our blood samples one last time before surgery. We had done it already like ten times over the last six months so wasn’t a big deal. The nurse said it was just to double check that I have no antibodies against him. I asked what were the chances that I would develop them overnight.. she said in the 25 years she had been there she had never seen it.

Well, you guessed it. I had developed antibodies against my dad overnight since they had taken our blood the night before and he could no longer donate. It meant I would reject his kidney and it simply was no longer an option. Not often had I seen my dad cry but that was one of them. I did too. My high school friends had decorated the house for me to come home too so my mom quickly sent them a text and they ran over and undecorated the house. This meant my siblings would have to be tested. I will never forget the night before my college freshman brother’s lab draw. We spent most of the evening pacing the kitchen and living room floor. He asked me probably 100 plus questions about what it would be like. Genuinely terrified of something I did once a month my whole life and weekly during certain spurts. Take this in your pocket to remind yourself that just because someone’s fear may be silly or insignificant to you does not make their problem any less real or scary to them. Always show comfort and understanding the way you want it when you feel scared. Life hurdles simply are not a competition. My sister tested from Florida where she lived with her husband, she was five years older than myself. I went with my brother and he survived his testing bravely. The results showed I had antibodies against my brother but not my sister. They were both a 6/6 in match but my brother’s would be rejected. That meant my sister was the lucky winner. She graciously donated her kidney to me and I still have it to this day at 29 years old. It is quite the trooper.

Now. Why you are really here. It started in the 8th grade. I had started my period but I did not know it. Over the course of six months I was in excruciating pain, constantly throwing up and my general health was spiraling downward. Finally after six months they saw my uterus was absolutely huge and swollen with six months of period blood. They life watched me due to the poisoning and toxic shock I was ill with. At Children’s Mercy I met the witch of a woman female gyno doctor. She believed that I had a thick hymen. They put me under anesthesia and when I woke my whole family was crying. I did not have a thick hymen, I had vaginal agenesis. We did not know this because naturally I wasn’t sexually active at that age and the outer appearance of my vagina looked completely normal. There were two surgeons in the US that either could or would be able to do my surgery.. maybe because my previous health issues. I am not sure. We traveled to the one and she turned me down. She had done the surgery once before on an 18 year old female who then committed suicide because the physical therapy required was too much. She would not do it on an eight grader, I wouldn’t be mature enough to handle it. Despite having to grow up much earlier in life from my other health issues. We went and saw doctor two.

He was one of the sweetest and most respectful doctors I had ever met. He agreed to do the surgery and advised that I not tell anyone what I was going through. He said in eighth grade your best friend today may not be tomorrow and that kids could make my life complete hell over something like this. I listened. I didn’t tell a soul. My vagina was almost entirely solid. He ordered dilators that I would have to use to stretch the skin up and open inside the vaginal canal. He asked if I was ready and said no one would be able to do it for me or make me do it. He said that if I ever wanted to eventually have my own children I would have to do this. I absolutely have always dreamed of being a mother and so I did it. Twenty minutes, twice daily for five years. They were so incredibly painful that there aren’t really any words. It was like putting a plug into an outlet with no holes because the dilators had to be bigger than what fit as to stretch the canal. Interesting fact. I had to buy an exercise bicycle because the angle of the seat would help me closely create the natural angle of a woman’s vagina. All a lot to think about secretly as an 8th grader. I did my “sticks”, I preferred to call them sticks, for two years until I was a sophomore. At that point I had stretched the vagina canal skin up and open enough that they could do the surgery. They opened it and lay the skin at the top of the vagina like a natural vaginal canal.

I sat up in bed after surgery and blood gushed out of me. It was insane. It sounded like when you turn your bathtub faucet on to fill the tub. So much blood. Black and smelling of death. The six months of period blood from two years prior could finally exit. I was so stoked to have my period like all my friends. I worked damn hard to be able to use those tampons. My mom and I went out and bought practically every brand of tampon and pad there was.. plum giddy. I had to continue to do the dilators for three years further so it wouldn’t close back down. Still twenty minutes, twice daily. The longest 40 minutes a day of those five years. I remember my junior year and there was this handsome fella I had my eye on. We started dating and I could tell hands were getting adventurous. I am not sure what normally goes through one’s mind then. I was thinking. Oh my goodness!!! I hope it works, I hope it works, I hope it works. Will it feel different? Will he notice? Will it hurt? Well I was his first finger to vagina experience so what the hell I was worried about.. I don’t really know. He wouldn’t have known if I was different. It did indeed work. Not on the orgasmic scale but it was a tunnel and fingers could enter and I was so fucking proud. Can you imagine if I had listened to the first surgeon and waited until 18 or older? That make out session would have turned incredibly awkward on a whole other level.

Fast forward to 2010.. aged 20.

I am dating guy that was mentioned above after we separated when he went off to college and I had a year of high school left. I just moved to be in the same town as him and signed to start cosmetology school in four weeks. We took an eight day vacation to Disney and universal. I was hurting in my abdomen and throwing up randomly. Maybe like twice a day. Not constantly but something felt off. At the end of each day I would throw up and my feet were SO incredibly swollen that clear liquid was leaking out my toe nail beds. I knew I had chronic pain from adhesions from many surgeries and the many meds I took made me nauseous many times than not. Plus I was so focused on making sure my main squeeze was having the vacation of his life. I was determined not to let me be what ruined it for us. We get home and I go to my routine kidney appointment. He pushes on my abdomen and tells me I am not going home. When I would lay flat my stomach was uneven. The right side was raised higher than the left. After surgery they ended up removing a nine pound tumor that had engulfed my ovary. I had no clue I was basically full term pregnant. I will admit Reddit. This one got me. Knocked me down into a dark place. They had removed my left ovary a few years prior due to being damaged from the six months of period blood that had been sitting in my uterus and Fallopian tubes. This meant that I had done those horrible sticks for five years, hand built my own vagina, all so I could have my own kids one day. After a routine appt and a four hour surgery it was just gone. Ended up being ovarian cancer and am all clear and fine today.

Current life: I have been with said man above for 10 years, married since 2012. We are foster parents to an amazing girl we got at three weeks old. We were wrote and asked to adopt this little girl by an entire extended family. From May 2018 until March 2019 we thought we were adopting this little girl. A bio relative has changed their mind after foster daughter living with us 18 months. Now we find ourselves in and out of court battling for her. Won’t give any details of the case or share pictures of kiddo. Only time will tell what path we go forward on. One thing is for certain. My husband is a lucky man, after all, he has a one of a kind, hand made vagina. 😉🤷🏼‍♀️😜

Abdominal Scars and tumor picture: RIP my bellybutton. Viewer Discretion AMA!

TL;DR Had two kidney transplants, vaginal agenesis and ovarian cancer.

Edit** I did tell my first person of the vaginal agenesis when I went to college. Not sure how to explain disappearing everyday twenty minutes, twice a day to a roommate. Just seemed easier to tell the truth and she was a person I trusted dearly. Been a best friend since the third grade. Started with telling her.

Edit 2) During the two years before they opened the canal, what happened with the blood and my period? Duh. Great question. The doctors believed that if I did depo provera, a birth control shot, every month that I would no longer have a period. The shot was normally given every three months. I went every month because it was critical that I wasn’t ovulating. The doctors also believed that while stopping the blood from continuing and with the shot would allow the blood to re-absorb back into my body basically. This didn’t work. That was discovered after the sophomore surgery when I sat up and the blood that had been there two years came out. My health suffered greatly and my coloring was sickly during those two years. I have no idea how I lived with it in my uterus chillin that long.

My Proof and my imgur! This link below Abdominal Scars and tumor picture: RIP my bellybutton. Viewer Discretion AMA!

Edit 3**** today is August 6th and we had court today regarding our foster daughter. I decided to make an instagram account to keep everyone updated! If you wish to follow the journey with us. My Instagram is https://www.instagram.com/fosteredwithlovee/?hl=en

Comments: 485 • Responses: 58  • Date: 

thergoat1516 karma

...reading that was an absolute roller coaster! I’m sorry you had to go through all that from such a young age, but way to power through it all!

Questions and clarifications:

When you say you were “full-term pregnant,” you’re simply referring to the amount that the tumor was pressing against the inside of your midsection, right?

How would you say these experiences have changed your perspective on medicine as a person? Do you trust doctors, or do you tend to get second opinions?

Do you feel your view on sex/sexuality has been shaped by the experience? Is sex “normal” for you, today?

What was the treatment to survive with that much stagnant blood stuck inside you between finding out about it and the surgery?

Any major bucket list items you feel like tackling (or have tackled) now that you’ve overcome such an enormous challenge?

AmandaKathleen812 karma

1) Full term pregnant, yes just the nine pound size factor! Bigger than a lot of babies! Ha!

2) Oddly enough, it makes you realize the importance of medicine. Really, a good doctor that you trust and respects you can make all the difference.

3) Sex has been shaped by this absolutely. Sex was normal and great for many years, then I noticed that I couldn’t be on top any longer. This eventually continued to hurt more gradually as my vaginal canal was closing back down. They said it could happen over time. Just something I will have to go in and have them look at. Currently sex is incredibly painful about half the time or more. I have a very patient husband to ride along through the ups and downs. I don’t think my sexuality changed much due to these experiences.. just realized how much importance is placed on sex to have a normal relationship one day. More than anything I believe I have a very unhealthy drive or need to be a mother. I would say more so than average. Not sure if this was due to the doctor and adults using, “if you ever want to be a mother one day..” do this. Sex wasn’t a driving factor to motivate me because that didn’t occur until college for me. So each day I woke up saying, you know you want to be a mother one day and have kids.. go get on the bike and do your sticks. Unhealthily I focused from 8th grade on being a mother every single day. I feel that is partly why it knocked the wind out of me so badly when they ended up removing my ovaries.

4) The doctors believed that if I did depo provera, a birth control shot, every month that I would no longer have a period. The shot was normally given every three months. I went every month because it was critical that I wasn’t ovulating. The doctors also believed that while stopping the blood from continuing and the shot would allow the blood to re-absorb back into my body basically. This didn’t work. That was discovered after the sophomore surgery when I sat up and the blood that had been there two years came out. My health suffered greatly and my coloring was sickly during those two years. I have no idea how I lived with it in my uterus chillin that long.

5) I just still sadly want to be a mom. One day perhaps! I enjoy animals to the max. Very intuitive and sensitive to feelings and emotions.. perhaps from spending loads of time developing in and out of hospitals. Mostly life is too short and if there is something nagging on your shoulders. Find a correction for it and enjoy the time we get healthy and happy. I will also say, take college seriously. Even if you get cancer just finish it. I left one semester shy of just my associates before enrolling in cosmetology. Still one of my biggest regrets. Should have buckled down or went back after.

cafe-aulait795 karma

You are a mother to the little kid that you've been caring for and are fighting for. That is not an inferior family.

AmandaKathleen664 karma

When this comment reduces me to tears it reminds me all too much the wait to have her and how much she matters to me now! Ooof! Very kind of you. We are all she has ever know as family.

alurkerwhomannedup75 karma

Hi! I work in foster care and just want to say thank you. After all you’ve been through, knowing you sacrifice your time and resources for this girl is amazing. You and your hubby are her mom and dad. And I hope you become forever mom and forever dad. Thank you for doing this AMA!

AmandaKathleen78 karma

Thank you very much! That is very interesting because our foster workers turned on us in a hot second once a bio option popped up. Interesting to see one supportive of the foster parents. The work you do is equally important and tough! Thanks for the kind words!

IPeeFreely0161 karma

The most powerful thing - to me, at least, in this post, were the “don’t know” scars that you labeled. You’re stronger than I.

AmandaKathleen49 karma

Yeah I have always had those ones since at least before five.. do not remember the exact surgery they came from. I know more about my health from my older years of course! I hear you though! That’s when you’ve had too many surgeries.

mongooseoflove54 karma

If your vagina is starting to close down again, why don’t they have you doing the “sticks” again?

AmandaKathleen102 karma

Honestly because I haven’t told or been to that doctor. Mostly because I am scared of precisely this ^ 😳

sarahbotts84 karma

Do it before it gets worse!

AmandaKathleen84 karma

I need too. Put it off for about two years already! Time to just do it!

AreYouHappyNowAndrew89 karma

I just got my first set of dialators today. I could not imagine having to do this as an eighth grader. You and your sticks are going to be inspiring me when I have to use mine.

AmandaKathleen52 karma

Best of luck! You can do it! The glass were better than the plastic for a list of reasons.

Zer_0455 karma

My comment was deleted for not asking a question, so I’ll put it this way:

Will you continue to kick ass? Are you aware that you are inspirational? Do you know that we support you fighting for your child? Will you accept a compliment from another mom, that you are so pretty? Thank you for sharing.

AmandaKathleen214 karma

It is very special to hear my journey is inspiring to others.

Thank you for such kind words. :)

Further, fighting biological family for a child has caused quite the controversy around us. They shouldn’t have asked us to adopt for such a long time. Our role changed from foster towards adoption resource at that moment. Then they showed zero interest until way late.

tossawayforeasons45 karma

40 year old guy here. I was just lamenting how hard my life's been and now seeing a new perspective of hardship. I don't often read whole long posts like this, but I read your whole story here and a lot of your replies.

I'm sorry life is hard. It's some real shit, and just when you get a handle on the previous shit, new shit happens. Over and over.

Your story is brutally honest and you have a warrior-poet spirit to be able to recount it all with the attitude you have. I scrolled down and was taken back at how young and full of life you look.

I'll try a little harder. If you can do it, so can I.

AmandaKathleen30 karma

“I'm sorry life is hard. It's some real shit, and just when you get a handle on the previous shit, new shit happens. Over and over.”

This though! 😂

Thank you for your reply. It warmed my heart very much with pride and a little extra pep in my step tonight. Funnily enough that is kind of why I added the photo at the end. So many people meet me and say your lying, you don’t look sick.. always a good reminder of you never know what people are going through when you pass them on the street. Treat them kind as much as possible, who knows how much they needed it. 🤷🏼‍♀️

Deal. We can do it together.

adventuretime6 karma

I just to want to add to this and say that you are awesome. I wish you and your family the best.

AmandaKathleen3 karma

Thank you 😊

greffedufois279 karma

Hi Amanda!

I have a very similar story to yours, at least involving weird illness and transplant at a young age. I was also born in 1990! I had a 7lb tumor removed from my liver at 16 and also have a road map abdomen. My aunt was my living liver donor at 19.

How's your current kidney doing? Are you still on prograf or are you on rapamune/myfortic? (I only have experience in liver, hopefully you're still not stuck on Prednisone!)

If you ever want to talk with a fellow lady who's gone through very similar issues (and is currently dealing with ovarian cysts and all that crap) feel free to PM me. I think we could be friends!

AmandaKathleen183 karma

Absolutely we will have to connect! Still am on the Cellcept and Prograf, well the generic for them. Mycophenolate and Tacrolimus. I was on prednisone from 1992 until 2008. Wayyy too long! Not on it anymore! So please forgive me, what is a living liver donor? Where they transplant partial possibly so you both live?

survivorbae135 karma

I was born with a semi-imperforate hymen. Luckily it was perforate enough to let my period blood out so it didn’t build up, but the hole couldn’t even fit a q-tip. Pretty much knew I had it for awhile, but wasn’t comfortable to have it diagnosed until I was 21. After the surgery I could finally wear tampons! I didn’t know a solid vagina was a thing. But reading what you went though with the dilators, I’m so glad I didn’t have it. Sounds so painful, and I know at your age I wouldn’t have been mature or motivated enough to do it daily. Props to you for doing that!

My question is: out of everything you’ve been through, what was the most painful experience? And also, what did the room smell like when all that old period blood came out?

AmandaKathleen177 karma

Very interesting! I remember writing Oprah when I was sixteen after seeing that lady with two vaginas go on! Haha. She never called. Thanks Oprah. Out of everything pain wise would be the tumor removal. It was up under my rib cage, reached in back to my spine, and down to almost my pelvic bone. Plus it just angered adhesions from past surgeries. Mentally it was also the hardest. I also didn’t realize when I woke up and ate breakfast that morning that after a four hour surgery I would wake up not just baron but in menopause like a middle aged lady at 20. Hot flashes are no joke. The smell.. kind of sour. I just remember the nurse standing next to my bedside to help me sit up for the first time after surgery, that sound of the blood rushing out, the nurse leaping backwards, and the awkward minute it took us all to figure out what had ruined the bed. Literally it was like dark dark almost black. My skin tone looks sickly looking back during those two years living with it in me.

JanetYellensFuckboy50 karma

Now I'm angry at Oprah on your behalf.

AmandaKathleen108 karma

Excellent. The uprising has begun.

Dootietree109 karma

and here I am with occasional seasons of health anxiety, but not real health issues (that I know of). I torment myself about what I would do, how I would react, what about my family?..etc I'm sorry you had to go through all that, you sound like an incredibly strong woman.

AmandaKathleen90 karma

Truly. You just kind of do it. When you feel low and are like f this. The sunrises the next day and you just kinda have no choice but to rinse and repeat until it’s over. I bet you would shock yourself with what you could go through! Thank you though.

Pandalite60 karma

Did they check you for any genetic disorders? For example MRKH syndrome? (Blind vaginal pouch plus kidney problems)

AmandaKathleen58 karma

I honestly am unsure if they have and lean more towards have not. They did tell me that often kidney issues and female anatomy issues can go hand in hand. I will have to ask my parents if they recall me ever being tested!

GrandmaSlappy17 karma

Were you ever concerned about passing along these issues to a child?

AmandaKathleen28 karma

I wasn’t because they had always put it to me that they were birth defects and never hinted at it being anything genetic. I am still unsure if they ever tested me for anything genetic wise though which makes me irresponsible to just trust what I’d been told. Probably would have just had babies based on what they’d told me and not proof so much. Even now they still say basically just bad luck. Interesting perspectives.

EL490056 karma

Are you involved with any organizations to raise awareness about any of the things you went through?

Really blown away by your story though. You’re an incredibly strong person & should be proud of all you’ve survived.

AmandaKathleen61 karma

I am not! Would love to be though. I used to go to Kidney Camp when I was younger.. not sure the real name of the camp. Then growing up each year in elementary my mom would have a day where she gave our story of what it was at that point.. just kidneys. She would have me show my scars and it was always hugely mortifying! Now with age, meh, I’m friggin alive. I’ll take it.

JanetYellensFuckboy9 karma

She forced you to show your scars, as a child? Or am I misreading that?

AmandaKathleen11 karma

Yeah not really misreading.. I mean she knew it wasn’t my favorite thing by any means! Would I have been kicked for refusing, no, but it was definitely pressured! My classmates enjoyed it though! 😑

and_you_are_no_lady44 karma

I don't know if you're still answering, is there any speculation at all that the monthly depo shots rather than every third month (you said you had to do it more often to make sure you didn't get your period) may have had something to do with developing the tumor?

AmandaKathleen59 karma

There very much is yes. A few doctors have hinted my cancer later was probably caused by the harsh medications from the first transplant for 16 years and various other shots and medicines. Not to mention Cat scans, xrays and MRIs.

Nadelkissen41 karma

Hi there! Thank you for sharing this with us.

How does your body form antibodies? Do they know why your body just made some against your dad's kidney? How do they test it? All of that is so crazy to me.

I was also born in '90. I've had a hysterectomy now, because my uterus liked to make 'art projects' and attach itself to my other organs through endometriosis, the worst of which was my large intestine. I'm glad that you had doctors that knew what they were doing, and that you found the second doctor to help you with the dilators. I had to use them myself and I know how painful they are. I was also sorry to see that you're experiencing painful sex again. It's about the same rate of success for me now. I hope it gets better for you!

AmandaKathleen36 karma

https://www.kidney.org/atoz/content/Antibodies-and-Transplantation

That has all the in depth detail on antibodies that you could ever wish to know! I have a unicornuate uterus. Basically malformed and smaller. So if I ever got pregnant, hypothetically, chances are I wouldn’t have been able to carry full term. They left it in though! Since the ovaries are missing and I don’t have my period now it doesn’t cause me any issue. Sorry to hear you had to go through that. If you don’t mind me asking. Can you orgasm from the G-Spot? I can only from the C spot. I often wonder if this has to do with my abnormalities at birth and having to make one with dilators.

LorenzOhhhh30 karma

A SOLID VAGINA!?

Tamsen_lock59 karma

I initially read it like “solid” as in cool and awesome. I was thinking, “wow, that’s great that she loves her vagina despite the other health problems.” Oops.

AmandaKathleen20 karma

Hahaha this made me chuckle! I wish!

AllofaSuddenStory39 karma

Aka "Barbie doll"

AmandaKathleen55 karma

Damn it. Why did I never think of this.

FriendlyDespot4 karma

I know, dude. Brag about it.

AmandaKathleen6 karma

😂😂

Nergaal30 karma

Do you ever think that if you had been born like a decade earlier, you might not have been alive today - because medical procedures might not have been available?

AmandaKathleen30 karma

Absolutely! And while watching the walking dead or JOKING about running off to Mexico with our foster we know I’d die just from lack of the monthly medications alone. That or they follow my dad each month to the jungle where he hands them over to me 😂😉

MikeTheAmalgamator27 karma

You said you had to do the sticks for two years before having the surgery and finally releasing that six months of period blood build up but wouldn’t it have built up for the two years you were waiting? Or did they do something to allow you to have regular periods in that time?

AmandaKathleen35 karma

Yes! I should have mentioned that!

Here is what happened during those two years before I had a well, “proper opening”.

The doctors believed that if I did depo provera, a birth control shot, every month that I would no longer have a period. The shot was normally given every three months. I went every month because it was critical that I wasn’t ovulating. The doctors also believed that while stopping the blood from continuing and the shot would allow the blood to re-absorb back into my body basically. This didn’t work. That was discovered after the sophomore surgery when I sat up and the blood that had been there two years came out. My health suffered greatly and my coloring was sickly during those two years.

seal_raider26 karma

Holy guacamole this is a heck of a story.

I am glad that you found some docs who were the right fit. My son and wife have issues and I have learned how critical it is to have someone who is sensitive and caring when the world is crashing down.

Since I have to ask a question, how awkward was it telling your husband “so, um, you know my ‘hey nanny nanny?’ of course you do. Well, it has a story to it. No, really, charts, graphs, etc.”

For some reason I imagine it must have been hilarious. Also awkward and serious. But oh so hilarious at the same time.

AmandaKathleen47 karma

I lead into the conversation with asking if he noticed anything different about it 😂😂

His face fell with hella confusion. I am laughing remembering it! He gave a slow noooo. Probably like crap, I just got an STD. I don’t remember the exact conversation but I remember he was curious. Making a comment he needed to inspect it more and it seemed perfect to him. 😅🤷🏼‍♀️

dontakelife4granted19 karma

Your scars are beautiful! They tell your story, as difficult as it is. You sound like you are still a positive person given all the difficulties you've faced at your young age. How did you keep going when the days were very hard?

I hope that you are able adopt all the babies you want in your life. You are a special person and deserve to spread your love.

AmandaKathleen34 karma

Thank you, very kind. We had a rule that we would take five minutes and cry it out and then we had to move on and figure a way to get out on the other side of things. So many times I wanted to slap my mother when she’d say we’ll take your five minutes, cry it out together and move on... admittedly we all didn’t know the best way to handle each new life changing blow. Sometimes that got hard to hear when it felt at times perhaps easier for them to rebound than the person that spent all those years doing it. They always had good intentions though. We also had another rule that we wouldn’t lie to each other. One stay as a young kiddo my mom said do this last poke and you’re done for the night. Promise. I did it and they came in 10 minutes later to shove something down my nose into my stomach while awake with out anything to calm a child. I felt so betrayed by her all evening. So immature when she didn’t know there was another test. It did teach us that we are better a team and we threw it all out there from then on. Just worked best that way. I don’t want to have 10 more shots and IVs coming my way and think maybe I’m done after this one. I just want to know. Suck it up kid. I hope to adopt as well someday. It would help if they didn’t charge an arm and a kidney to adopt though! Especially when I don’t have an extra to give!

dontakelife4granted15 karma

I feel like your mom did what she did for both you and your family's survival. By allowing 5 minutes to cry, then move on, she didn't let any of you (especially you) fall into an unending horror of depression. I think you all should be commended for your strength and fortitude.

What about a go-fund-me to raise funds to help you adopt? Given your story and your history along with the gajjillions of kids up for adoption around the world that there would be many that would help you make that dream a reality. Good luck to you! Please post again with updates!

AmandaKathleen7 karma

I think she absolutely did! Don’t want to think about how helpless it would be to watch your child going through this. I don’t think anyone racked with medical and adoption fees would ever say no for a go-fund-me! 😅☺️

Thank you! I will have to update!

r7-arr19 karma

How do you keep yourself sane? This is insane. Totally crazy. You're a testament to survival and persistence. I wish you all the riches and happiness in the world.

AmandaKathleen14 karma

Thank you very much. There have been a slight few insane felt days but over all family and friends, fur family included help leaps and bounds! One hard side effect is it does become hard at times when you feel nauseated or pains here and there not to go overboard and think you instantly have another nine pound tumor. Time helps the most. I do feel like time does heal many wounds.

Sasha_Fire15 karma

First of all, WOW. That's a hell of a life story.

Do you know why there aren't more doctors available and trained on the surgery for the solid vagina issue you dealt with? I hope you guys get the adoption, it's a really tough process when biological family steps in and I hope they stop standing your way when you'll clearly create a wonderful home for her.

AmandaKathleen13 karma

I come from a small town of about 13,000. Not insanely small and not big. If I got the simple chicken pox or flu they wouldn’t touch me. They’d send me to Children’s Mercy West a few hours away each time. So I think part of it may be my health combo makes them uncomfortable. Otherwise I am not positive. We were told this by a practicing doctor after the failed thick hymen surgery about what our options were. I never googled to check that the doctor was correct in the two options. I like to think my parents hopefully did! We have told the foster child’s family they are more than welcome in her life. 🤷🏼‍♀️

vegketoer14 karma

What was the financial impact of all the medical attention you needed growing up on your family? United States is not the best country when it comes to insurance and financial coverage for health. Are you or your family in major debt or has the community stepped in to cover some bills?

AmandaKathleen18 karma

With helicopter rides, ambulance rides, surgeries and medicines the expenses are major. Luckily the large hospital is happy just paying what you can and plans vs the smaller hospitals and clinics hunt us down for every penny almost immediately before turning you over to collectors. They both had very good jobs and are not living in last debt from this. When I was two my community did do a fundraiser to help my parents out! The worst is mostly just the medications monthly that remain for life! Insurance helps with a lot of it. The rest we just have to deal with.

WitchesTurnMeOn14 karma

From what I gather from this I can only assume that you are an amazing person. One that has been given the chance of life many times over and still pushed through! My girlfriends mother has been diagnosed with two failing kidneys (literally out of the blue at age 50) never drinks, smokes and eats well. She is traveling to India in two days to get her transplant. They say that she will need to be there for a month. Is this a normal time frame? What information do you have about the healing process that could only come from someone who has done it and maybe not a doctor? Thank you so much for your story and your willingness to answer questions!

AmandaKathleen16 karma

I would actually say that is not a typical length of stay. For myself the told me two weeks max estimate and it would have only been one week when I was physically ready. They had to keep me an extra week to get my prograf levels where they wanted them. In 1992 I stayed three months but for 2019 that seems long. I didn’t go all the way to India however! Best of luck to her. Tell her to have a pillow to hold to her abdomen whenever she needs to sneeze or cough. Feels like you are going to pop open. Doesn’t matter your age or how in shape you are, immediately after a surgery, for whatever reason, your stamina goes to zero. Just stairs make you tired and little things at first. This is probably not advised but the first two weeks I had to sleep on my stomach in the hospital bed. Helped the pain to have a tad of pressure. I went to ICU for a few days after per the normal protocol. Woke up and it had been two days since the surgery. Weird feeling.

Iamnumber666614 karma

My (M53)kidneys are slowly failing due to diabetes. I have a stable diet, but have had 3 infections in the past year that have hammered my kidneys hard. I am currently on the line between stage 3/4 of renal failure.

My doctors still want to try to control the failure with diet and pills. I do have a large number of people who are willing to be tested to give a kidney....thankfully.

How long were you on dialysis until you got a kidney? Did your dad develop issues with his kidneys due to diabetes? Does your family line have a propensity for kidney/vaginal issues? Are those dialysis holes permanent? Did you do dialysis at home?

Thanks for answering!

AmandaKathleen13 karma

So far my dad has not had kidney issues due to diabetes. My mother also had diabetes and she also hasn’t had kidney issues. I was on dialysis about a year the first transplant and the second one I didn’t have to do any dialysis. They just swapped the new kidney out for the bad one. I was still doing varsity cheer practice everyday and school. Along with other activities right before the second transplant. Went in to check my creatinine before the surgery and it was just under 9. Like 8.7. The doctors had no idea how I was standing much less living life normally! After the transplant in 2007 my creatinine was 1.3.. then went down and stays around .8-.9 currently. No other family issues with their kidneys or vaginas yet! The holes are permanent. At least for me. Been there since 1992.

staroceanx13 karma

What an inspiring story to show most of us that our lives ain’t so bad. I truly admire your dedication to life and your family’s selflessness sacrifice to donate their kidneys. Even though you were dealt a bad hand at birth, you were given such a wonderful family. The families I see nowadays are either ignoring each other or fighting for inheritance.

Regarding your vaginal condition, it’s a shame you can’t have your own kids, but you are solving another issue by adopting a child in need, you should be very proud! Your story about your junior year in high school with that boy is honestly quite funny.

I have one question, even though you are given a kidney, you still need dialysis on a weekly level ? Does this mean your sister is now on dialysis as well ?

AmandaKathleen9 karma

Good question. Actually the donors of kidney transplant lives do not change in any fashion besides the scar and short hospital stay. My sister was out in three days. I only did dialysis about a year of my life before the transplant in 1992. I didn’t do it at all for the 2007 transplant. They literally just swapped my Mom’s old kidney out for my sister’s new kidney. I do take meds daily but do not have to do any sort of dialysis. Dialysis is only when your kidney function is incredibly low for an extended period and you don’t have a donor lined out. Normally those on waiting lists.

AutoModerator11 karma

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AmandaKathleen66 karma

Nice try bot.. I see what you did there. You need a picture to prove the vaginal agenesis part am I right? 😜😅

wizzwizz425 karma

A doctor's note would probably do, if you don't want to send nudes to a glorified spambot.

AmandaKathleen24 karma

I didn’t know they really meant it! They removed the post until I could prove proof! Oops 😬😅 At least the mod was very kind.

annonymausi11 karma

How are your parents and sister doing?

AmandaKathleen13 karma

They are doing great! Luckily they haven’t had any kidney issues! Mom and dad are still married. Brother still would opt out of needles unless needed too, sister is married for like 10 years and has two children 9 and 8.

trollcitybandit8 karma

What exactly do you mean by 'solid vagina'?

AmandaKathleen17 karma

Well trollcitybandit,

I was born and normally as a baby the middle of the vaginal canal dissolves. Mine never formed. Had to manually create one to have any sort of hope of a period or normal sex life and reproduction in my life.

trollcitybandit5 karma

Yeah sorry if that seemed like a weird question but since you mentioned it in the title I figured it was worth asking.

AmandaKathleen6 karma

Not a weird question! Just wasn’t sure with the username... 😂😂👍

ZandaClaws8 karma

vaginal agenesis is actually somehow connected with kidney issues, if i remember correctly. I read something about it a few years ago while researching kidney cancer for my friends dad.

very moving story and you are a impressive, strong woman! best of luck to you and your husband in court and please keep ilus updated on your situation. I live for happy ends and I'm certain you'll have one very soon

One question I always wonder about while reading stories like this. What kept you going?

AmandaKathleen8 karma

The hard fact that life just kept going.. even if you ever felt like you were over it. Life just flys by and you have no choice but to pull your pants up and get it done. Supportive family, friends and fur babies makes a huge difference. My pets literally pulled me from many dark places that who knows what would have reached me those nights they were what did. Plus if you spent so much of your life fighting.. don’t you want to see what you were fighting so hard for. What is going to be my life that is so fabulous all this lead there? Hopefully something!

aunt-poison7 karma

OP, I'm confused by the part of the story about your dad. Why did he try to vomit up the sugary drink?

AmandaKathleen18 karma

Because they purposely give a sugary drink and if you are diabetic your sugars will be very high after the hour. If you aren’t they will be normal. So he purged as much as he could of the drink as not to spike his blood sugars. Then walked six miles in the snow and shoveled random driveways. Activities help lower blood sugars. The two combined he was praying were enough to pass the test. Cheat the test if you will. It was and he passed. If he hadn’t then they wouldn’t have allowed him to donate. In the end he couldn’t anyways because of my body developing antibodies. I do think it was important to play out how it did and he can’t blame himself for a sibling having to be the donor in the end. That would be a hard thing to make a child do for another.

esqualatch127 karma

How does one fix an adult size kidney into a baby?

AmandaKathleen17 karma

Right! You could see it sitting right center in the middle of my stomach. An adult sized kidney. It then shrank down and regrew again with me. Mostly I believe because it is LIKE a muscle. My toddler body wasn’t using it the same way as my adult mother had been so it shrank and then regrew in size as I got older and needed it to keep up. Someone may know more about how or why that happened the way it did! That’s my best guess.

Edit** forgot like

panemera7 karma

This is a science question maybe—how come they couldn’t proceed with the kidney surgery when you sneezed?

AmandaKathleen18 karma

Everyone freaked out that I may be sick or have an infection. Can’t have a compromised immune system before a transplant. Especially a baby in 1992. Uncharted waters at the time.

summerbirthday6 karma

That was difficult to read... your endurance is absolutely stunning. I can’t imagine all of the pain, exhaustion, and other trauma you’ve powered through. You’re metal as fuck.

A question, in case you’re still here... you’ve fought so hard for your life, what is an occasion in the future that you are most looking forward to right now that you can’t wait to relish and celebrate?

AmandaKathleen6 karma

September 2019. Our court battles over our foster should end and either way, life can start moving on.

Besides her I am excited to continue renovating our new home! See what you envision come to life!

KBCme6 karma

If you had to do the 'stick' therapy before having the vaginal reconstructive surgery, how did you get the initial opening to start the dilation therapy? Was there an initial procedure to create an opening and then the follow up to do the reconstruction?

AmandaKathleen9 karma

So there was maybe an 1/8th of an inch indent where it was supposed to be. So the first dilator was half an inch tall and I just started from there! It was weird sitting on a bicycle twice a day but you can’t actually use it during the stretching session. I should’ve had amazing calves! No initial procedure. It was interesting to me to give an 8th grader these sticks and a bike and say okay go build a vagina. The angle my canal lays at is slightly off but not much. I was close!

thro111926 karma

Hi OP, you kick major ass! My question is: i understand that you’ve wanted children for so long, and that you’ve formed an emotional connection to the baby. But don’t you think the grandparents of the child also have a right to the kid? How is this case proceeding?

(I would never have asked this question but have recently read ‘Little fires everywhere’ and it bothers me that a child can be separated from their biological family even when they are wanted)

AmandaKathleen10 karma

Yes we have thought about it from both sides! I do think you don’t ask a family to adopt for almost a year before changing your mind. I also think waiting 18 months knowing about the child from the beginning leaves a lot of sympathy to be desired their way from us. We do understand! We welcome them in her life and wish they would be happy being the grandparents. Not what they want anymore though. Can’t talk about any details as the case is open.

Death_Connoisseur6 karma

Your kidney disease....is it a genetic trait that is past down from your parents?

Like could your fetus have been scanned while in the womb for such a horrible kidney disease?

AmandaKathleen5 karma

That’s a good question! It doesn’t seem genetic. On the scan part though I never considered it. In 1992.. let me think. Although I was born in 1990 and didn’t get sick until two years later. Maybe only if it was genetic and I don’t think they could do that in 1990. Ya know an interesting question to ask my parents, if they had known before would they have aborted? I am sure glad they didn’t but wonder what they’d say. I think I know what they’d say now but at the time...?

gdubrocks5 karma

Is there some way to prepare for kidney donation?

If the doctors thought it would last you three years, why wasn't one ready when you were 18?

Similarly when the next one starts failing do you have to reach out to another sibling?

AmandaKathleen14 karma

The one I have will fail similarly. I don’t have anymore siblings. We had tossed the idea around about what if/when. My parents always wanted my dad next but we didn’t do the lab testing to see until the time came. Never considered why or if we should have done it sooner. Although since I didn’t develop antibodies until literally in the hospital overnight before the surgery we would have lived thinking he’d be the donor. Maybe he would have lived his life a tad differently to be ready to donate. Hard to live that way when you just don’t know when. I also feel that my parents never allowing me to live like I was sick or different made me who I am today. Actually now when this fails I will have a harder path to a donor. Over 18 year olds get placed bottom of the waiting list. My husband has said he would be tested to be a potential match if the time ever came. Hope he is a match because he is probably the only option I have currently! Maybe a few friends might! With the old one lasting sixteen years on outdated meds and technology.. I am hoping this one keeps chugging for a while! I also read about the new 3D printed kidneys being transplanted. Never know what the future holds!

grangicon5 karma

Is that a picture of your tumor ovary? Why is it also named Amanda?

AmandaKathleen8 karma

Hahaha the patient first name and then I crossed off the second name for reddit. Yes though. That is her in all her 9lb glory.

3slyfox4 karma

I'm glad you were able to make it through all of this and I wish you luck on that foster care case.

With all these medical procedures and medicines, it must have cost a lot. How did you manage this?

AmandaKathleen9 karma

This was a huge set back. Each month my meds cost about $2,000. I have three helicopter transports, even more ambulances and surgeries. Realistically I would be paying on this forever. Except. The bills under 18 went to my parents name. Most of my big surgeries were on those bills. Secondly, the big name hospital that I went to for the majority were not as money needy as the small hospitals and clinics. They do not hunt us down whatsoever for outstanding bills. The other hospitals, unfortunately do. We just make it work. It is hard because monthly we could have a new bomb tv or something that is real and stays around.. vs a group of pills I swallow every twelve hours. My husband has good insurance now at career age, but that only helps, doesn’t cover everything. Still thankful for it!

dadudeodoom3 karma

Hey! Thanks a lot for this post. You are an inspiration. I was just a tad bit curious if you have ever met anyone who might be able to really truly understand and relate to you and what you've been through? It seems like your case might be a bit unique.

AmandaKathleen8 karma

I haven’t yet but I did once see a girl on Oprah that was born with two vaginas and for some reason the younger me felt connected to her. Put us together and we’d fix each other haha. The doctors did have me sign some waivers to use my medical history in learning books because it was quite unique and one of a kind! I think mostly once you add it all together.. individually each thing is abnormal but all together just a cluster f*ck.

redditproha2 karma

I just want you to know you’re awesome and you’ve got a great sense of humor. I’ve been going through anxiety and resulting autonomic issues for about 10 years and it’s been very painful and dark. I can’t imagine going through what you have. Kudos.

How have you been able to mentally cope?

AmandaKathleen7 karma

Taking it day by day and making a point to find the positives. No matter how small they may be. If you simply can’t wait to get your hair cut Friday.. it comes and you did it. Another day or few days forward. After a while you’ve made it a month, then two, then half a year. Just keep going. The second your mind isn’t just briefly dark but overrun with darkness every little life hurdle gets immensely harder to overcome or even care if you do. Mental strength is even more important than physical. Truly the best thing to help the medicine go down. Positivity.

THETJRAT2 karma

You’re obviously super human, I think it really puts into perspective how hard some people’s lives are, And not to take anything for granted

My question is,

What’s something that pushes you to continue?

Is it that because these things have happened, you have to fight?

Is it like a tv show you’re watching that you have to continue,

What’s the big and trivial things that make you think I’ve got to keep going for/ because of that ?

AmandaKathleen8 karma

Family. It really is amazing not only how far their support can take you but on the opposite end, the fear of failing them. Parental disappointment fear never goes away at any age I guess! That pushes me to continue as well as I am like, so many IVs, lab draws, and surgeries that to roll over now just isn’t me. Who knows how close to the end goal you are ever but what if you fought for 8 of the 10 obstacles to just say I quit. I have to know what is next. What did I do all this fighting for? A huge part is that because they happened you have to just do it. If I want to stick around to enjoy the good things in life that means equally I have to face and deal with the bad to see the good. Doesn’t mean ever day is easy or hard but it does mean more days than not you have to kick yourself in the butt to not just exist but keep moving on and up. The trivial thing would be my pets. In particular one cat especially is just my little baby. He is old and big and not a baby but to me he still thinks he is and I let him. One night after they had removed my ovary(2nd one with tumor), and I was crying in the bottom of my shower as to not wake my guy in the room. The shower was off and my cat jumps in and curls up with me. I remember thinking that I had to make it work. He would rather lay on the shower floor comforting me than in bed with him. That our pets loved my partner but let’s face it, I was their person and I felt heart broken about suddenly or ever just disappearing and leaving them with him alone. Not able to ask any questions or get comforted as to where I went. I thought how selfish and unfair to them. Seriously. That’s what worked that night and many many. Whatever it is, if it makes another day forward it worked! Big thing now would be my foster daughter obviously. Husband and family. We also bought a house less than a year ago and I can’t wait to see the potential unfolded. Honestly anything! Life is so much better when you see it through spongebob’s eyes than squidward’s. 😂👌

DishsoapOnASponge2 karma

You formed antibodies against your dad's kidney overnight?? How on Earth does that happen? Also you are awesome... That foster child is so fortunate.

AmandaKathleen3 karma

I am not even sure but it made for one really really bad day. Turned out to be for the best probably.. if only as controlling humans we would learn to just trust the process. Meh. I still won’t! She is a dolly.

AquaKiwiPrime2 karma

Amanda, beautiful determination and story. Very touching. My question is; During all this and dealing with the pain, what was the one thing or things, that got you through it all?

AmandaKathleen6 karma

Honestly, silly.. but my pets. Family and friends yes but if something happened they would understand and be able to get answers. Feeling like if I just gave up and left my pets suddenly without any way to ever get a conclusion or answers would be so mean and selfish for all the endless support and love they offered me. They make amazing companions in life. They always seem to know when you are down and come around just to be there.

tuigger2 karma

Is IVF out of the question?

AmandaKathleen13 karma

Yes an no. I don’t have ovaries. I begged. I mean begged the nurses and doctors to freeze the ovary they had removed. When they were ready to send me home I was bawling and my husband asked why. I remember telling him as soon as I step foot out of this hospital my ovary is gone. I am the only one who cares or voice for it. Sadly they didn’t care and the truth is had I been prepared before surgery and had in place a team to take and freeze my ovary the couldn’t have. It was sick and inside a nine pound cancer tumor somewhere. We would need someone else’s eggs and then my husbands sperm. Then it would have to be a surrogate. We went through a website at one point to hire a surrogate. The surrogate alone was 220,000 dollars usd. If you have a habitable womb hop on that business. To carry personally, I would have to stop my transplant meds for nine months and kill my kidney. Not meant to be in my cards. Took me way too long to accept that. On the other hand, I was open to IVF with another’s eggs where my husband was not. He feels like he doesn’t want to have a child with anyone that isn’t me. That leaves us to adoption. Still about $35,000-45,000. Which is sad that they put families through that but it still is at least a legal option for children less families. One day! I keep the faith. Have too.

AmandaKathleen1 karma

Further, fighting biological family for a child has caused quite the controversy around us. They shouldn’t have asked us to adopt for such a long time. Our role changed from foster towards adoption resource at that moment. Then they showed zero interest until way late.

JMile691 karma

WTF did I just look at?

AmandaKathleen3 karma

Hahaha. Someone on Imgur wrote “way to go Frankenstein girl!” Gave me a good chuckle!