Hey readers!
So from my last post, you learned that I have entered Stage 5 Kidney Disease...AKA, End Stage Renal Failure. At this stage my only chance at survival is a kidney transplant. Luckily, I've had a few selfless, wonderful people step forward and offer to donate for me...and it turns out, I have a match in my best friend! But this isn't what I'm here to talk about...I'm here to tell you that I have FINALLY recieved a YES from a doctor!!!
Gasp...I know, right?!
Well, I saw my kidney doctor yesterday and we got on the topic of babies and my ability to be a biological momma. My transplant could occur within the next couple of months, which then will start the countdown to when I can meet with my transplant surgeons and kidney specialists and discuss my progress. If all looks good, they can adjust my anti-rejection medication and we can start trying for our own babies...that I would carry!! This can happen as early as NEXT YEAR!!! We could potentially be expecting our own biological baby NEXT YEAR!!!!! I'm sorry to keep shouting but...I COULD BE A PREGNANT LADY NEXT YEAR!!! A dream, a want, a desire, a wish, a hope, an ambition I've strived towards my whole life...to be a momma! Now, I can actually, hopefully, experience pregnancy. The good and the bad...the joy and the pain...the miracle so many take for granted that I will cherish forever. I can't wait to finally get that news that says "okay, you can start trying now!". AHH!! That's still a far way away and still only a possibility, not guaranteed, however, it wasn't a no! We are so excited that we even have the potential to be biological parents...but first, a transplant!
Friday, July 15, 2016
Wednesday, June 22, 2016
Health update..
Hey everyone. I know a lot of you have been reading these posts as updates on our baby journey... updates on the road to surrogacy or adoption. This isn't one of those posts. This post is an update on me in general and my health.
About an hour ago I received a call from the hospital I am getting my kidney transplant through. The call stated they had a potential kidney match for me and had to ask several questions. After I gave the answers, she took my them to the transplant surgeon who spoke with my kidney doctor. After some deliberation, they found this potential kidney wasn't a good enough match for me. This call initially sent me into a whirlwind of emotions...I had no idea how to feel. I was shocked, scared, excited, happy, sad, stressed, terrified...all emotions possible.
Allen and I even joked this week that since I'm across the country, (we are currently in Texas for a wedding), I was going to get this exact call. I wasn't expecting a call like this for at least a couple more years, but apparently I'm on their radar because I'm young, have failure symptoms, and am in the range of dialysis but currently not on it. Allen and I stared at each other with wide open mouths and cried together after I got off of the phone. Then I called my family and cried with all of them as well. This event has opened my eyes to the realization that we need to be ready for anything at any time. Now we prep by deep cleaning our house so it is safe for me if I were to get this call again soon. Thanks for reading and any positive vibes and prayers you could spare and send my way would be greatly appreciated.
About an hour ago I received a call from the hospital I am getting my kidney transplant through. The call stated they had a potential kidney match for me and had to ask several questions. After I gave the answers, she took my them to the transplant surgeon who spoke with my kidney doctor. After some deliberation, they found this potential kidney wasn't a good enough match for me. This call initially sent me into a whirlwind of emotions...I had no idea how to feel. I was shocked, scared, excited, happy, sad, stressed, terrified...all emotions possible.
Allen and I even joked this week that since I'm across the country, (we are currently in Texas for a wedding), I was going to get this exact call. I wasn't expecting a call like this for at least a couple more years, but apparently I'm on their radar because I'm young, have failure symptoms, and am in the range of dialysis but currently not on it. Allen and I stared at each other with wide open mouths and cried together after I got off of the phone. Then I called my family and cried with all of them as well. This event has opened my eyes to the realization that we need to be ready for anything at any time. Now we prep by deep cleaning our house so it is safe for me if I were to get this call again soon. Thanks for reading and any positive vibes and prayers you could spare and send my way would be greatly appreciated.
Friday, January 29, 2016
Thoughts of the future
Maybe it's just the emotional show I just watched which involved a surrogate mother or the video clip I just saw of a dad FAINTING at his baby's gender reveal party because he was so overjoyed that he was finally getting a son after 4 daughters...but I'm a wreck today! A happy wreck, don't be sad, I'm crying happy tears.
No these tears aren't for these people, they're for me and my husband. They're for me imagining us in those shoes. Imagining my husband being so overjoyed when I get to tell him a baby is coming our way. Of him being so excited to learn he will be having a son or daughter. Of us getting this amazing miracle in our lives to stress us the HELL out but to have it all worth it. This is a short and sweet post, but at least it's a good one.
I can't wait for that moment of seeing our baby for the first time. I have a million fears but I know none will be there at that moment. That blissful, time-stopping moment of seeing OUR babies face for the very first time. Holding our baby, hearing our baby and our baby seeing us. I've thought of a thousand different ways I want our first moment to be, but I think I'll never be able to actually plan it. It will just happen how it needs to happen, whether we are surrounded by everyone, or have just an intimate few moments just the three of us. Who knows. All I know is that it will be probably one of the happiest moments of my life and just thinking about it is bringing smiling tears to my eyes as I type. I can't wait for this moment, but I know it will happen when it NEEDS to. If it's this year or next, amazing, if it's not, then it's not. But it WILL happen.
I love my husband so much and can't wait to meet our family someday.
No these tears aren't for these people, they're for me and my husband. They're for me imagining us in those shoes. Imagining my husband being so overjoyed when I get to tell him a baby is coming our way. Of him being so excited to learn he will be having a son or daughter. Of us getting this amazing miracle in our lives to stress us the HELL out but to have it all worth it. This is a short and sweet post, but at least it's a good one.
I can't wait for that moment of seeing our baby for the first time. I have a million fears but I know none will be there at that moment. That blissful, time-stopping moment of seeing OUR babies face for the very first time. Holding our baby, hearing our baby and our baby seeing us. I've thought of a thousand different ways I want our first moment to be, but I think I'll never be able to actually plan it. It will just happen how it needs to happen, whether we are surrounded by everyone, or have just an intimate few moments just the three of us. Who knows. All I know is that it will be probably one of the happiest moments of my life and just thinking about it is bringing smiling tears to my eyes as I type. I can't wait for this moment, but I know it will happen when it NEEDS to. If it's this year or next, amazing, if it's not, then it's not. But it WILL happen.
I love my husband so much and can't wait to meet our family someday.
Tuesday, January 5, 2016
Positivity is Key
You know, after years and years of a chronic illness, we sort of get used to the snide comments and the rude remarks by people who don't believe we are suffering because we don't "look sick." I expect that from strangers, acquaintances and even some friends because they just don't understand. One place I don't usually expect it is a specialists office. Especially the specialists office that is monitoring your chronic illness. For me, it was not only that today, but also Henry Ford itself.
I recently have started feeling a decline in my health and positive attitude. I have started feeling very weak and my legs and feet have started showing serious signs of fluid retention. You know that feeling when you're so cold that you shiver and your back tenses up, then your back just cramps up and feels so painful until you can get inside to thaw out? Well imagine that all over your body, including your jaw, and not being able to ease the pain. My whole body is starting to cramp up, weaken and make me feel like total poop, but people can't see that feeling, so they just look at me with the look of "oh come on, move you lazy crap. You're young, you don't look sick, so stop walking so slow. I know you're faking it."
I'm not faking it.
I was mistaken as what this feeling was. I thought it was fatigue until I realized that it was weakness. I have a hard time doing my hair right now because I feel like my arms are going to fall off. I can't lay comfortably because my back and neck are cramped up. Chewing is a chore because my jaw is so tired. Walking and standing can only last for 10 minutes or so before I start to slow down or lean or crave to sit. Last night...I almost asked for help with my bra clasps because I was struggling big time. I'm not ready to become dependent yet. I am only 29. I don't want to have to have someone to help me lift things, do my hair or unhook my bra because my body doesn't have the strength for it.
My husband and I had a small tear session last night. He encouraged me to let it all out, just cry, because sometimes it makes you feel better. I couldn't let it out, and I'm not sure why. I let several tears fall with no problem but for some reason my body was choking it back causing my throat to hurt. I wanted to cry. I wanted to sob but my body wouldn't let me. My husband just held me close and silently wiped away a few of his own tears while he planted several soft kisses on my face and head. Goodness I love that man.
Now for the fluid retention. Everyone can get it from standing or sitting for too long, but for kidney patients, it just keeps coming back. So far I've had fluid retention on my legs, feet and hands every day since New Years day. My skin on my legs starts to form OVER my socks, leaving a gross inflated leg and crazy sock lines. My toes are squishing together and with someone who has long, skinny, boney toes like mine that all have a gap between them, this is a weird feeling. My feet are swelling and the best way to describe the feeling is like someone over-inflated my feet, and walking on them is so painful.
So to get to why I'm mainly writing this today is because my kidney doctor wanted to be safe and draw more blood to make sure my kidneys aren't dropping below "safe" levels. He's a wonderful doctor and I couldn't be more grateful for everything he does for me. He gave me his cell phone number because my blood pressure gets insanely high from time to time and he likes to keep track of me and my health. I texted him letting him know how I've been feeling, and though we recently changed up some blood pressure medication, which he said could possibly be a reason for me feeling this way, he still wants to take a look at my levels. So he sends me into his office today to get labs drawn and there's one nurse there who I love. She never hurts me when she draws my blood and is always so spunky and happy. Until today. She kept giving looks (of course never looking at me with these looks, but at my arm and the needle) like "you're wasting my time." She also had that tone in her voice and the smile on her face that screamed "I'm really trying to pretend you're not bothering me but I'm very irritated you're here and I'd rather you leave now." Oh, I will mention now that I get my blood drawn every month to keep a fresh sample in the transplant department for Henry Ford so they can possibly find me a match. Brilliant idea, I thought, was to bring those tubes with me (I have them at home) so I can only get poked once this month and not twice. I asked the nurse if she wouldn't mind drawing that one too and I'll take it to the Henry Ford lab near me to process. Her answer: "Uhhh...yeah I guess we will do that too!" She draws my blood, I apologize the whole time to see if she will lighten up and when she was done, she just walked out of the room so I called after her "Sorry to be a pain in the butt!" And she called back "Not at all!" (fake chipper voice).
So I take my blood (the Henry Ford Transplant blood sample) to the lab near me and told them all I have to do is drop it off. The front desk lady, usually pretty snotty, gave a rude laugh and said "well who drew it?" I told her and she said "but don't you usually get it drawn here?" and I answered "Yes, but I figured it'd be easier to get it all done at once rather than getting poked twice." Then she responds "and they told you to bring it here?" (with a look that to me is screaming "you're a moron") So I said "no, but I always get my labs done here, I was passing it on the way home and thought it'd be easier to just drop it off instead of mail it. (insert her looking at me like I'm an idiot, so I add) I can just go back to my car and put it in the mailing envelope and drop it off at UPS is you want. If that's easier for you guys." Then she said "no, sign in, they'll call you shortly." So I wait, they call me back and I tell them what I'm doing. The lady in the back was sweet (she's the one who usually draws my blood) until she didn't see paperwork with it. Then she gets a bit of an attitude and says "They didn't give you papers?" and I said "No, this is usually all that comes with the kits that you draw every month." then she asks me to repeat my name and DOB and said "Okay, thanks." then walks away.
Do I leave? Do I stay? I left. They had my name and DOB, I didn't want to be in that negative atmosphere anymore.
All I'm asking, from my friends and family at this point is this: PLEASE be the positivity in my life. I look to you guys for a shoulder to cry on and I don't want to hear "It's going to be alright." I just want someone to say "Hey, I'm here for you. Call me or text me when you need an ear, and I'll be here." We don't know that it's going to be alright so saying that, though I know you mean well, actually kind of hurts. I'm in pain, I feel sick. My body is starting to give up, I'm not alright. I just want you to be a soft smile, a warm embrace, a fun distraction (movies, games, girls nights, poker nights, fun nights) and there for me when I need someone to help me dry my tears. Thank you all for reading this insanely long post, but I needed to let it out.
I recently have started feeling a decline in my health and positive attitude. I have started feeling very weak and my legs and feet have started showing serious signs of fluid retention. You know that feeling when you're so cold that you shiver and your back tenses up, then your back just cramps up and feels so painful until you can get inside to thaw out? Well imagine that all over your body, including your jaw, and not being able to ease the pain. My whole body is starting to cramp up, weaken and make me feel like total poop, but people can't see that feeling, so they just look at me with the look of "oh come on, move you lazy crap. You're young, you don't look sick, so stop walking so slow. I know you're faking it."
I'm not faking it.
I was mistaken as what this feeling was. I thought it was fatigue until I realized that it was weakness. I have a hard time doing my hair right now because I feel like my arms are going to fall off. I can't lay comfortably because my back and neck are cramped up. Chewing is a chore because my jaw is so tired. Walking and standing can only last for 10 minutes or so before I start to slow down or lean or crave to sit. Last night...I almost asked for help with my bra clasps because I was struggling big time. I'm not ready to become dependent yet. I am only 29. I don't want to have to have someone to help me lift things, do my hair or unhook my bra because my body doesn't have the strength for it.
My husband and I had a small tear session last night. He encouraged me to let it all out, just cry, because sometimes it makes you feel better. I couldn't let it out, and I'm not sure why. I let several tears fall with no problem but for some reason my body was choking it back causing my throat to hurt. I wanted to cry. I wanted to sob but my body wouldn't let me. My husband just held me close and silently wiped away a few of his own tears while he planted several soft kisses on my face and head. Goodness I love that man.
Now for the fluid retention. Everyone can get it from standing or sitting for too long, but for kidney patients, it just keeps coming back. So far I've had fluid retention on my legs, feet and hands every day since New Years day. My skin on my legs starts to form OVER my socks, leaving a gross inflated leg and crazy sock lines. My toes are squishing together and with someone who has long, skinny, boney toes like mine that all have a gap between them, this is a weird feeling. My feet are swelling and the best way to describe the feeling is like someone over-inflated my feet, and walking on them is so painful.
So to get to why I'm mainly writing this today is because my kidney doctor wanted to be safe and draw more blood to make sure my kidneys aren't dropping below "safe" levels. He's a wonderful doctor and I couldn't be more grateful for everything he does for me. He gave me his cell phone number because my blood pressure gets insanely high from time to time and he likes to keep track of me and my health. I texted him letting him know how I've been feeling, and though we recently changed up some blood pressure medication, which he said could possibly be a reason for me feeling this way, he still wants to take a look at my levels. So he sends me into his office today to get labs drawn and there's one nurse there who I love. She never hurts me when she draws my blood and is always so spunky and happy. Until today. She kept giving looks (of course never looking at me with these looks, but at my arm and the needle) like "you're wasting my time." She also had that tone in her voice and the smile on her face that screamed "I'm really trying to pretend you're not bothering me but I'm very irritated you're here and I'd rather you leave now." Oh, I will mention now that I get my blood drawn every month to keep a fresh sample in the transplant department for Henry Ford so they can possibly find me a match. Brilliant idea, I thought, was to bring those tubes with me (I have them at home) so I can only get poked once this month and not twice. I asked the nurse if she wouldn't mind drawing that one too and I'll take it to the Henry Ford lab near me to process. Her answer: "Uhhh...yeah I guess we will do that too!" She draws my blood, I apologize the whole time to see if she will lighten up and when she was done, she just walked out of the room so I called after her "Sorry to be a pain in the butt!" And she called back "Not at all!" (fake chipper voice).
So I take my blood (the Henry Ford Transplant blood sample) to the lab near me and told them all I have to do is drop it off. The front desk lady, usually pretty snotty, gave a rude laugh and said "well who drew it?" I told her and she said "but don't you usually get it drawn here?" and I answered "Yes, but I figured it'd be easier to get it all done at once rather than getting poked twice." Then she responds "and they told you to bring it here?" (with a look that to me is screaming "you're a moron") So I said "no, but I always get my labs done here, I was passing it on the way home and thought it'd be easier to just drop it off instead of mail it. (insert her looking at me like I'm an idiot, so I add) I can just go back to my car and put it in the mailing envelope and drop it off at UPS is you want. If that's easier for you guys." Then she said "no, sign in, they'll call you shortly." So I wait, they call me back and I tell them what I'm doing. The lady in the back was sweet (she's the one who usually draws my blood) until she didn't see paperwork with it. Then she gets a bit of an attitude and says "They didn't give you papers?" and I said "No, this is usually all that comes with the kits that you draw every month." then she asks me to repeat my name and DOB and said "Okay, thanks." then walks away.
Do I leave? Do I stay? I left. They had my name and DOB, I didn't want to be in that negative atmosphere anymore.
All I'm asking, from my friends and family at this point is this: PLEASE be the positivity in my life. I look to you guys for a shoulder to cry on and I don't want to hear "It's going to be alright." I just want someone to say "Hey, I'm here for you. Call me or text me when you need an ear, and I'll be here." We don't know that it's going to be alright so saying that, though I know you mean well, actually kind of hurts. I'm in pain, I feel sick. My body is starting to give up, I'm not alright. I just want you to be a soft smile, a warm embrace, a fun distraction (movies, games, girls nights, poker nights, fun nights) and there for me when I need someone to help me dry my tears. Thank you all for reading this insanely long post, but I needed to let it out.
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