New here...This is my intro:

[shay_pcb]

Hi! My name is Shannon. I am 19 years old and started PD 8 months ago. I was born with one kidney, and it is covered in scar tissue. The Dr's call it renal dysplasia. I am engaged to the most wonderful guy!! I don't work; I am on disability bc I stayed swollen when I tried to work while on PD. I am in college majoring in accounting. I just started my 2nd semester. I have a lot of other medical problems that may prevent me from having a transplant. And I am currently trying to have a baby, which probably isn't the smartest thing to do right now!! LOL Well, that's me!!!

[Sluff]

Welcome to IHD.

Glad to have you here.

Sluff
Moderator

[goofynina]

HI Shannon,  Welcome to ihatedialysis.com.  I hope you find answers to any questions you may have here and if you dont, please, do not hesitate to ask and anyone of us will be more than happy to help you.  Congratulations on your engagement and please make sure you consult your physician before you get pregnant (if you havent already)  there is always  adoption if that doesnt work out.  Take care of YOU first and it is so awesome that you are still going to school,  keep on keepin' on 

[shay_pcb]

please make sure you consult your physician before you get pregnant (if you havent already)  there is always  adoption if that doesnt work out.

I haven't talked to him yet. He's out of town, but I am going to talk to him as soon as he gets back. I know I should take care of ME first, but if you knew the whole situation, then you would understand...

[angela515]

 

[Rerun]

Shannon, welcome to our site.  Hope you are able someday to have a Transplant.  Women with transplants have successful pregnancies.  When you are carring a baby you need Lots of fluid and plenty of kidney function to support an extra little life.  I would hate to see you lose it on top of everything else.  You need to wait and see if your doctor recommends dialysis and pregnancy.

I may not know the whole story, but I know you are 19 and I'm 45.  I know it takes a lot for a healthy woman to have a healthy normal baby.  When you are on dialysis you can't possibly eat right for one thing.  You can't drink enough for another thing. 

Welcome to our site where you get our thoughts, opinions and the truth.

               

[charee]

  Shannon

[Chicken Little]

    

I'm new to the board too and just about to start on PD.  I've been a type 1 diabetic for almost 26 years.  I got it when I was 18.   I understand your wanting to start a family.  When I was your age it was very important to me as well.  As I got older though I started to realize that in having a child, you always need to act in the best interests of that child and your own wants and needs have to take a backseat.  For me having a disease that makes it difficult to have a healthy pregnancy meant off the bat I was putting the child in jeopardy.  Even if everything went fine with the pregnancy, I could seriously impair my own health and I wouldn't want a child to have to deal with that either.   

Sorry to get so deep on our introduction.  I just wanted to let you know that I understand what you are feeling.        

[Bajanne]

Welcome to our community.  We are glad to have you with us.  You definitely have some serious challenges to deal with.  This community is a good place to talk them through, get some advice and lots of support.  I am looking forward to hearing from you.  Please keep us posted on how things are going with you.  Here's a hug from all of us.

[Joe Paul]

Welcome Shannon, good to have you aboard.

[angieskidney]

Welcome Shannon!

 

You are going to try to have a baby while on PD? There would be no room for the Peritoneal Dialysate when the baby gets to the final trimester.

[froggy]

Shannon I can relate to where your coming from I been in your similar situation. Its not a good idea to get pregnant while your on PD (I know thats not what you want to here) But I've did that and trust me it didn't turn out pretty. You are still young wait for a transplant. Easy to say I know. We will have to chat more. Its nice to have you here I just joined not to long ago. Good luck.

[nextnoel]

Shannon, welcome to the IHD family! 

[Zach]

Welcome to our community!  Looking forward to your posts.   

[BigSky]

Welcome

[anja]

   Shannon!  Glad you joined us!

[shay_pcb]

I know everyone thinks that trying to have a baby on PD is a bad idea, but I'll tell you the whole story so that you all can understand why I want it SO bad.

I have a bloodclot in my leg that starts just above my knee and goes almost to my heart. When I was evaluated for a transplant, they said that the clot was blocking where they usually put a new kidney. They said that they would have to try something that they have never done before, which is hook it up to the vein that drains blood from my intestines. They said that there is a high chance that that vein will clot while it's being clamped off for them to sew the new kidney to it. They said that if it clots, then I could lose the intestine and die.

I have had a lot of problems with clotting, even on a bloodthinner. They tried to get a HEMO access in my arm before I started dialysis, but it clotted 3 times, even while I was taking a blood thinner. So I just have a feeling that if I go through with the transplant, which I am terrified to do, then I won't make it. I want to try to have a baby now, so that if I don't make it, I will have gone through the joy of pregnancy and motherhood, even if just for a short amount of time. That, and I would be leaving a part of me behind for my family. My mom and fiance are behind me on this, and I do plan on talking to my Dr as soon as he gets back into town. I've read the risks and all...I'm just very scared that I won't make it through the transplant. I even thought about not doing the transplant at all. If I did that, then I'd have no choice but to have a baby on PD.

Anyway, that's the whole story. Maybe now you all will understand where I'm coming from.

Shannon

[Sluff]

Sounds like you have given this a lot of consideration and I for one hope things work out for you and the baby.

You can always start another thread about your unique situation. Thanks for sharing your story.

[angela515]

I don't really know what to think. Obviously in the end, it's your body and your choice. However I guess a few concerns I would have is #1, being pregnant while on PD.... how will there be room for the baby AND your fluid to do dialysis? It's not a big concern in the begining... but towards the last trimester, I would be very concerned. #2, I can totally understand wanting to have a baby, but, to jepordize your life to do it? Idunno... plus, if something goes wrong, and you do not make it, but your baby does... how does that help anyone? You aren't around to feel the joy of being a mother, and your baby doesn't get to know it's mother. Adoption seems like a more better choice as far as letting you still feel the joy's of motherhood and not having to worry if any complications to you or your baby will occur.

As for your situation and transplant, I would be scared to. You have a few tough choices ahead of you to make. I wish you the best of luck in whatever you decide. I hope you will do what's best for your health and at the same time be able to feel the joys of being a mother. Either way, it's your choice and i'm sure everyone here will be behind you and here for you if you need us. 

[Sluff]

Shay pcb, I started a new topic for you here to discuss your plans to have a baby while on PD.

Click here; http://ihatedialysis.com/forum/index.php?topic=2294.msg31946#msg31946


If this subject continues in the introduce yourself section, I will lock this thread.

Sluff, Moderator

[jbeany]

Welcome to IHD.  I'm looking forward to hearing more about what you decide.

[mallory]

Welcome, shay_pcb!  I know I've already replied to a lot of your posts, but I do want you to know that you are welcome here and I'm glad you joined.  Keep posting, we really are a great support group! 

[shay_pcb]

I figured since I am "starting over" that I would sort of redo my intro, this time with more detail. Sorry it's so long!!

I am 19 years old and have been on Peritoneal Dialysis for 8 months now. I am engaged to a 40 year old man, and we have been together for 1 year next month. We are very much in love and happy together!! I guess the next thing I tell you is my medical history:

Before I was 7 years old, I had been in 4 comas from hypoglycemia. My mom was charged with neglect, but it wasn't her fault. I was just never hungry. And when I didn't eat, I went into a coma. My mom tried to make me eat, but I would get so upset that I would throw it all up. Nobody could figure out what was wrong with me. Luckily, I eventually grew out of that.

I was healthy for the next few years, except for a mild case of hyperthyroidism, which was controlled by meds. That too went away after a couple of years.

When I was 11, I had a gall stone come out of my gall bladder and get stuck in my bile duct (whatever that is! ) They said it was 3 times bigger than the duct it was in. I found this out bc I was up throwing up one night, but I couldn't stop throwing up. Eventually I was just throwing up mucus and I was in IMMENSE pain, so my mom brought me to the ER. They gave me something to keep me from throwing up and gave me fluids bc I was dehydrated and pain med. I ended up staying in the hospital for a week and getting my first surgery. I had the gall stone removed by a camera thing down my throat and my gall bladder removed laproscopically (sp?). What sux the most is that the week I was in the hospital was the week of Christmas '98. So I had Christmas in the hospital in pain and all. This is when the doctors discovered that I only had one kidney and that it was only working at about 65% at the time. I also had an ulcer in my esophagus from all the vomiting, and my thyroid was messed up again, so back to all the meds. My thyroid got better again after a year or so on the meds, so I stopped them again.

A few more years went by without any major problems. Just colds that make me dehydrate, so I go to the hospital to "refuel". So I think I'm getting another cold. I'm running a fever, have a sore throat, etc, etc, but it's not going away like the others. This one is WAY worse. I get puss on my tonsils and begin to vomit. My mom brings me to the ER, and my pulse is 140+ and my BP is 200+/140+ so I get admitted to the ICU for 4 days. I was having a Thyroid Storm. I ended up on all kinds of meds for my heart and thyroid and they said that my kidney got a lot worse, so that's when I got my nephrologist. I ended up getting Radio-Iodine Therapy to shut my thyroid down completely, since it was so out-of-whack. Now I am on a thyroid replacement hormone for the rest of my life.

Then on my first day of 11th grade exactly 2 weeks after my thyroid storm, I go to school and have this pain in my left butt cheek! (I know it sounds funny!! lol) I figure it's just a sore muscle or something and don't worry about it. The next day (a Friday) I go to school with the same pain, but it gradually got worse as the day progressed. By the end of the day, I couldn't walk at all and my leg was VERY swollen and turning purple. I told my bus driver and he dropped me and my sister off on the road we lived on rather than a few roads down where our bus stop was. When I got off the bus, it hurt too bad to walk to my house, so we got a neighbor, complete strangers to us at the time, to drive us home. They let us in the back of their pick up and drove us home. I went in and put my leg up on a bunch of pillows and fell asleep. I always fall asleep when I'm in pain or sick! By the time my mom got home, my leg wasn't swollen anymore, so she figured it was just a muscle pain. I tried to tell her different and that I needed to go to the ER, but mom knows best, right?? WRONG!! The next day, I got up and took a shower, but my leg had swollen up again, and this time I notice veins bulging out. I almost pass out in the shower and call my mom and sister in there. My mom sees my leg and freaks out and finally brings me to the ER, while my sister helps me get dressed. It was a huge DVT (Deep Vein Thrombosis AKA blood clot) in the main artery of my left leg. I was in the hospital for 10 days this time and couldn't go to school, so I did home-bound schooling where the teacher comes to me once a week. I still graduated early and with college credits, so don't feel sorry for me!! lol

Last, but not least, my kidney problem. I found out from my nephrologist in May of 2005, right before my graduation, that I was getting really close to dialysis and he wanted me to go get evaluated for a kidney transplant at the Mayo Clinic in Jacksonville, FL. I went, and they tried to send me to counseling, but the counselor I went to said that I didn't need it, so they ran in circles for a while! lol So my doctor decided to go ahead and put in a graft or fistula or whatever for me to start hemo. They put it in, and a month later it clotted. They put in another one in my lower arm, and it clotted 2 weeks later. They unclotted it, and it didn't even last a day before it clotted again. So they decide to do PD instead and put the catheter in my stomach. My left arm is unusable now for BP or blood work, and it is very scarred and ugly. 

April of '06 I went to a check-up ultrasound on my blood clot. They said that it had grown A LOT over the 2 or so years that I have had it, and that I wasn't getting hardly any blood flow to my leg, so they admitted me in the hospital. They tried to put a filter in to keep it from my heart, but there was too much clotting for them to do anything. While I was in the hospital this time for 2 weeks, they externalized the catheter and started dialyzing me immediately. Everything happen all at once. Now it's been 8 months and here I am!!

I was evaluated for a transplant again, this time at Shands in Gainesville, FL. Their worry is that they don't have a place to put the new kidney bc of the huge blood clot that goes almost to my heart. They sent me a letter saying that they would have to hook it up to the vein that drains blood from my intestines and that the vein could clot while they are sewing the kidney to it and I would lose my intestines and probably die. Since I have had SO much trouble with clotting, I am convinced that getting a transplant will kill me. I am going to try it anyway, bc I see it as my only chance at a somewhat normal life.

Okay...a little more and I am finished. I am in college studying to be an accountant, and I want to have a baby REALLY bad. Don't ask me why, bc I really don't know. I just have very strong instincts, I suppose, that tell me that it's time, even though I know it's probably not a very good idea right now.

So that's me. Better intro than before, right?? lol Laterz~~

[boxman55]

I truely hope all your dreams come true. Welcome

[Sluff]

Welcome to IHD Shay.

You have had plenty of hospital experience for such a young person. I hope that between you and your doctors that you make the right choices regarding a transplant. Transplant don't always work. I'm sure your doctor and transplant team would not let you get a transplant if they didn't think you would make it. But then again all surgeries can be dangerous.

Well good luck in your choices

Sluff, Moderator