I'm getting more and more impatient by the day. In fact, for a couple of days, I almost forgot entirely about the transplant. Things are moving so slowly now. The hold up seems to be my possible gestational diabetes back in 2000. My doctor wanted to review my pregnancy records. However, my doctors from back then no longer practice (thank goodness) and their records disappeared. My doctor literally couldn't track my medical health any further back than 2004. Finally, this Thursday, my doctor was able to talk to a lady at Newman hospital in Emporia who thought they had my records on microfish. Remember microfish?? She spent most of her Thursday going thru film and printing off page by page anything she could find about me for the transplant center doctors to look at! What a gal!!
Then here is the email I received yesterday regarding what they found in my old records:
Hi Hilary. We discussed your history & lab results this am in our meeting. I explained the story - - Dr. Matt Reed , Dr. John Smith, and Dr. Charles Shield were comfortable with proceeding forward. The group voted that you could be a donor. After the meeting Dr. Mandayam expressed concerns to my manager with this decision. (He was not in the meeting to hear our discussion) He thought we should send you to a diabetes specialist for their opinion. I spoke with him this afternoon and explained the results I was able to find. He asked if we were sending you to a diabetes specialist. I asked why you should go if you never had an elevated glucose. He thinks we should discuss this with the diabetes specialist. I have not received a call back from the KU Med school regarding my message I left yesterday about an appointment. I will page the doctor to discuss your history with him. No appointment with him yet- -hopefully he will give an opinion which agrees with the other physicians to proceed. Mark
Mark Blackmore R.N., B.S.N., C.C.T.C.
Renal Transplant Coordinator
Transplant Institute Via Christi Health
I can't believe the possible gestational diabetes is causing this much havoc! Especially since I passed all the glucose tests with beautiful results that amazed everyone. I fully understand why the doctor is concerned, but everyone else is ready to proceed. Its just this one guy throwing a kink into everything....
So that is where we are. There hasn't been anything exciting to blog about. There hasn't even been anything boring to blog about. There just hasn't been ANYthing to blog about :(
~Hilary
Showing posts with label renal. Show all posts
Showing posts with label renal. Show all posts
Saturday, October 31, 2009
Thursday, October 15, 2009
Get the Show on the Road
Now comes the hardest part of the whole ordeal for me........ waiting.
I'm done with the bloodwork (for the most part). I'm done with the urine collecting. I'm done with the xrays and the IV's and the radiologist and the therapist. I'm done with the social worker and the EKG. I'm done with the phone calls and the coordinating my schedule and the trips to the hospital. Now all I have to do is wait.
For those of you who don't know me very well, I'll fill you in. I'm not a very patient person. I tend to jump into things head first as quickly as possible. Dad used to have a saying - think first, then act. As often as he would tell me that, somehow I have always ALWAYS done everything in my entire life the opposite. I tend to act first and then think about it (after its too late). While I don't claim this as a very good method, I seem to have survived okay this far in life. I have gotten myself into a few messes.....I once sat our row of hedges on fire as a kid because, without thinking first, I was lighting and throwing fireworks into them. My friend and I once decided on our lunch break to go and get our hands pierced in the little fleshy part between our thumb and forefinger (not very convienant for a banker). I have had the cops call my parents in the middle of the night because I was using their vehicle, and without thinking, I parked it in a towzone while I went and partied. I once moved to Kansas City on a whim, without the financial ability to actually succeed up there, and had to move back only three months later. You get the point. I'm not proud of these things, but I'm drawing a picture here....
So yesterday as I was leaving the psychologist office, I was thinking to myself about how we could just have the surgery tomorrow if we wanted. I mean, all the tests are done. Nathanial is healthy now. WHY ARE WE WAITING?!?!?!? Lets get this show on the road already!
I get that its a process. I get that the doctors want to thoroughly go over my medical records before making the final decision. I get that Nathanial should attend one more of his 'advanced kidney recipient' classes. I get it! But at the same time....every day this is put off is another day things have a chance to go wrong. I don't want to be a debbie downer, but one can't help but think of Nathanials health. If he gets a cold, he'll be put in the hospital and it could delay things for weeks! If he gets an infection, same thing. What if I get H1N1 in the meantime!?
Here is the procession of what is left before surgery:
*my medical records have to arrive in the renal department and Dr Shields has to go over them
*Nathanial has to attend one more 'Advanced Renal Transplant' class (scheduled for October 20th)
*Mark, the coordinator, has to schedule a time that the surgeons can meet with Nathanial and I to decide on the actual date of transplant (I was told this meeting probably wouldn't take place until the last week of October-boo!)
Thats it! See how close we are now! OH man! Everybody please pray for Nathanials health between now and then pleeeeeaaaaaaase! In the meantime, I'm going to keep taking my vitamins and exercising everyday. I'm going to use the hand sanitizer and wash my hands everytime I shake someone's hand at work. I'm going to get plenty of rest and I'm going to eat my veggies. Hope that does the trick!
I'm done with the bloodwork (for the most part). I'm done with the urine collecting. I'm done with the xrays and the IV's and the radiologist and the therapist. I'm done with the social worker and the EKG. I'm done with the phone calls and the coordinating my schedule and the trips to the hospital. Now all I have to do is wait.
For those of you who don't know me very well, I'll fill you in. I'm not a very patient person. I tend to jump into things head first as quickly as possible. Dad used to have a saying - think first, then act. As often as he would tell me that, somehow I have always ALWAYS done everything in my entire life the opposite. I tend to act first and then think about it (after its too late). While I don't claim this as a very good method, I seem to have survived okay this far in life. I have gotten myself into a few messes.....I once sat our row of hedges on fire as a kid because, without thinking first, I was lighting and throwing fireworks into them. My friend and I once decided on our lunch break to go and get our hands pierced in the little fleshy part between our thumb and forefinger (not very convienant for a banker). I have had the cops call my parents in the middle of the night because I was using their vehicle, and without thinking, I parked it in a towzone while I went and partied. I once moved to Kansas City on a whim, without the financial ability to actually succeed up there, and had to move back only three months later. You get the point. I'm not proud of these things, but I'm drawing a picture here....
So yesterday as I was leaving the psychologist office, I was thinking to myself about how we could just have the surgery tomorrow if we wanted. I mean, all the tests are done. Nathanial is healthy now. WHY ARE WE WAITING?!?!?!? Lets get this show on the road already!
I get that its a process. I get that the doctors want to thoroughly go over my medical records before making the final decision. I get that Nathanial should attend one more of his 'advanced kidney recipient' classes. I get it! But at the same time....every day this is put off is another day things have a chance to go wrong. I don't want to be a debbie downer, but one can't help but think of Nathanials health. If he gets a cold, he'll be put in the hospital and it could delay things for weeks! If he gets an infection, same thing. What if I get H1N1 in the meantime!?
Here is the procession of what is left before surgery:
*my medical records have to arrive in the renal department and Dr Shields has to go over them
*Nathanial has to attend one more 'Advanced Renal Transplant' class (scheduled for October 20th)
*Mark, the coordinator, has to schedule a time that the surgeons can meet with Nathanial and I to decide on the actual date of transplant (I was told this meeting probably wouldn't take place until the last week of October-boo!)
Thats it! See how close we are now! OH man! Everybody please pray for Nathanials health between now and then pleeeeeaaaaaaase! In the meantime, I'm going to keep taking my vitamins and exercising everyday. I'm going to use the hand sanitizer and wash my hands everytime I shake someone's hand at work. I'm going to get plenty of rest and I'm going to eat my veggies. Hope that does the trick!
Tuesday, October 13, 2009
Processes, Processes.....
Yesterday, I had to get up a little early to start my day. Normally, I wouldn't mind so much, but yesterday was Columbus Day. A glorified holiday in the banking world. Its a day that all the bankers and post office workers get the day off, while the rest of the world works. October is the beginning of a series of these little holidays for those who work in a bank. Making this the perfect time of year to be scheduleing so many tests and trips across town to the hospital.
My appointment yesterday was two-fold. I was to turn in my second round of pee jugs (which also means bloodwork-gag!) and I was to have my visit with the social worker. After my last visit with Mark -the renal donor coordinator- he told me I was down to the last few schedulings. He told me I would meet with the social worker, then the psychologist, then Nathanial and I would meet with the surgeon and the nephrologist to schedule THE day.
I wasn't quite sure I needed to meet with a social worker. Actually, I didn't even know what the social worker's role was. Nathanial told me she was a super sweet lady and I would like her. I honestly haven't met one person that works in the renal department that I haven't liked. But, I'm getting off track now. I had to be in the renal department of the hospital by 8am. Driving there takes about 30 minutes during rush hour plus I had to consider parking and walking through the crazy parking garage and getting to the 6th floor. And anyone who knows me knows I HATE being late to anything. I decided to leave the house around 7:15 which meant the kids were on their own for getting on the bus and getting themselves out the door at the right time. That isn't too much of a big deal for them. They have had to do that several times lately due to all of my testing and appointments. On a side note, the kids haven't complained one single time. They are the best little cheerleaders! They always give me extra kisses and hugs in the morning when they know I am having a day faced with needles. And then the first thing out of their mouths when they get home that evening is always "how did the doctors go?". They are just as excited to have Nathanial better as the rest of the family.
I arrived at the hospital at 8:03 according to my car, but I always have my car clock set ten mintues fast to trick myself into always being early. Drives Geoff crazy!! By the time I got up to the renal office to meet with the social worker it was right on the dot, 8 o'clock. Beth Smith, the social worker, came out to greet me. She was a tiny little brown haired lady that imediately made me feel comfortable. She couldn't find an office for us to meet in so we wandered up and down the hall for a few minutes looking for an open space. All the while, my pee jug was splish-sploshing around in my bag. We found an open office and she told me to make myself comfortable. Basically, her job for the day was to give me a sort of interview to deterimine if I really was willing to be Nathanial's donor for all the right reasons.
She asked me questions about financial issues. She asked me questions about my kids feelings about the surgery. She asked me how Geoff felt. She asked me how long I had thought about doing this. She asked me how my employer was going to handle my leave of absense. She asked me who was my support system and who would take care of me after the transplant. She talked with me about what it was that happened to Nathanial to get him to where he is now. She asked me what I would do if it turned out that the transplant didn't work. All these questions and topics were discussed over the course of about an hour. Apparently she approved of my reasons behind why I am doing this for Nathanial, because at the end of the interview she said when the transplant team met and they asked her for her 'yay' or 'nay'on continuing with the procedure as me being the donor, she was going to give me a resounding 'yay'.
YAY! One more obsticle down!
After visiting with the social worker I was sent to the lab. The lady who works the front desk from the lab now knows me by name. 'Hi Hilary', she greeted as I walked (as slowly as I could) through the door of the lab. I sat my bag down and pulled out my pee jug to walk over and give to her. I was sick and tired of hauling that stupid jug around with me everywhere for the last 24 hours so that was at least a good thing! She had me scribble down my height and weight and what time I started and ended collection. Then I had a seat to wait for the BS. BS= blood sucker.
The idea of me getting blood drawn doesn't panic me as much as it did even a few weeks ago. I'm actually very proud of myself for how brave I was yesterday. The BS came to call me to the back room and my stomach didn't even turn like it normally does. The nurse was a very funny guy this time and cracked a lot of jokes. He was young and energetic and very different than the nurses I'm used to. As he was poking around looking for a good vein I mentioned that I was still bruised from the last time they drew blood. He told me he could use a different vein if I wanted him to, but I declined the offer and told him just to use whatever vein was going to be the easiest for him. He said back to me,'do you really mean that? I can use whatever vein is easiest for me? Because my patients tend to get a little uneasy when I tie this rubber strap around their neck." See what I mean? He was funny! ....and if he thought for a second that he was going to use a neck vein of mine to get blood out of he wasn't just funny....he was CRAZY too!!
The blood drawing went well and I was out of the hospital by 10am to go enjoy the rest of my Columbus Day holiday. My next appointment is with a psychologist tomorrow. I guess they don't want to use mentally unstable people's kidneys?? Either way, she is the last person I will see prior to actually scheduling the transplant!! My kidney is anxiously awaiting his new home!
Until next time~
Hilary
My appointment yesterday was two-fold. I was to turn in my second round of pee jugs (which also means bloodwork-gag!) and I was to have my visit with the social worker. After my last visit with Mark -the renal donor coordinator- he told me I was down to the last few schedulings. He told me I would meet with the social worker, then the psychologist, then Nathanial and I would meet with the surgeon and the nephrologist to schedule THE day.
I wasn't quite sure I needed to meet with a social worker. Actually, I didn't even know what the social worker's role was. Nathanial told me she was a super sweet lady and I would like her. I honestly haven't met one person that works in the renal department that I haven't liked. But, I'm getting off track now. I had to be in the renal department of the hospital by 8am. Driving there takes about 30 minutes during rush hour plus I had to consider parking and walking through the crazy parking garage and getting to the 6th floor. And anyone who knows me knows I HATE being late to anything. I decided to leave the house around 7:15 which meant the kids were on their own for getting on the bus and getting themselves out the door at the right time. That isn't too much of a big deal for them. They have had to do that several times lately due to all of my testing and appointments. On a side note, the kids haven't complained one single time. They are the best little cheerleaders! They always give me extra kisses and hugs in the morning when they know I am having a day faced with needles. And then the first thing out of their mouths when they get home that evening is always "how did the doctors go?". They are just as excited to have Nathanial better as the rest of the family.
I arrived at the hospital at 8:03 according to my car, but I always have my car clock set ten mintues fast to trick myself into always being early. Drives Geoff crazy!! By the time I got up to the renal office to meet with the social worker it was right on the dot, 8 o'clock. Beth Smith, the social worker, came out to greet me. She was a tiny little brown haired lady that imediately made me feel comfortable. She couldn't find an office for us to meet in so we wandered up and down the hall for a few minutes looking for an open space. All the while, my pee jug was splish-sploshing around in my bag. We found an open office and she told me to make myself comfortable. Basically, her job for the day was to give me a sort of interview to deterimine if I really was willing to be Nathanial's donor for all the right reasons.
She asked me questions about financial issues. She asked me questions about my kids feelings about the surgery. She asked me how Geoff felt. She asked me how long I had thought about doing this. She asked me how my employer was going to handle my leave of absense. She asked me who was my support system and who would take care of me after the transplant. She talked with me about what it was that happened to Nathanial to get him to where he is now. She asked me what I would do if it turned out that the transplant didn't work. All these questions and topics were discussed over the course of about an hour. Apparently she approved of my reasons behind why I am doing this for Nathanial, because at the end of the interview she said when the transplant team met and they asked her for her 'yay' or 'nay'on continuing with the procedure as me being the donor, she was going to give me a resounding 'yay'.
YAY! One more obsticle down!
After visiting with the social worker I was sent to the lab. The lady who works the front desk from the lab now knows me by name. 'Hi Hilary', she greeted as I walked (as slowly as I could) through the door of the lab. I sat my bag down and pulled out my pee jug to walk over and give to her. I was sick and tired of hauling that stupid jug around with me everywhere for the last 24 hours so that was at least a good thing! She had me scribble down my height and weight and what time I started and ended collection. Then I had a seat to wait for the BS. BS= blood sucker.
The idea of me getting blood drawn doesn't panic me as much as it did even a few weeks ago. I'm actually very proud of myself for how brave I was yesterday. The BS came to call me to the back room and my stomach didn't even turn like it normally does. The nurse was a very funny guy this time and cracked a lot of jokes. He was young and energetic and very different than the nurses I'm used to. As he was poking around looking for a good vein I mentioned that I was still bruised from the last time they drew blood. He told me he could use a different vein if I wanted him to, but I declined the offer and told him just to use whatever vein was going to be the easiest for him. He said back to me,'do you really mean that? I can use whatever vein is easiest for me? Because my patients tend to get a little uneasy when I tie this rubber strap around their neck." See what I mean? He was funny! ....and if he thought for a second that he was going to use a neck vein of mine to get blood out of he wasn't just funny....he was CRAZY too!!
The blood drawing went well and I was out of the hospital by 10am to go enjoy the rest of my Columbus Day holiday. My next appointment is with a psychologist tomorrow. I guess they don't want to use mentally unstable people's kidneys?? Either way, she is the last person I will see prior to actually scheduling the transplant!! My kidney is anxiously awaiting his new home!
Until next time~
Hilary
Saturday, October 10, 2009
You have died of Dysentary
I'm not going to die of dysentary. I'm much more likely to die of dehydration or hunger. I promised in my last blog that I would write next about the Renal diet. I suppose you could call it a 'diet', I do lose weight. Mostly because I can't eat anything that tastes good.
All people on dialysis have to be on a Renal diet plan, though the extremes of the diet vary greatly from person to person. Basically, if you can't pee, your body fills up with toxins normally urinated out of your body. Dialysis attempts to remove both the toxins and the excess water, but it cannot do it all. So, you are to avoid certain foods that are high in these toxins.
There are LOTS of different toxins out there in LOTS of different food items. Shoot, even things that are good to eat for normal people end up being bad for dialysis people. The biggest toxin, and the one I struggle with the most, is Phosphorus. Phosphorus is found in ALL food. There is no way to avoid it, so I have to take special pills called 'phosphate binders' with every meal or snack.
As I'm eating, I take a chewable phosphate binder that removes the phosphate from the food I ate and turns it immediately into poop. That's right, poop. My body will then discharge the phosphates the next time I go to the bathroom. Which is usually some time in the next five minutes. That is why I can't go out to eat any more. My pills send me to the bathroom usually before I'm even done eating the meal.
There are lots of high phosphate foods. These are the foods I'm not supposed to eat very much of. This hurts, because I LOVE these foods. Here's a short list: Nuts, Beans, Okra, Chocolate, Pancakes, Biscuits, Waffles, etc... Then the big one...dairy products. That's right, all forms of dairy are high in phosphorus. Milk, Cheese, Ice Cream, etc... I LOVE drinking milk. I used to drink it every day. I LOVE ice cream. I used to eat it all the time. Don't even get me started on cheese. Cheese goes with EVERYTHING. Cheese goes ON everything. Cheese goes IN everything. Cheese makes up a major portion of my diet!
There is another toxin I struggle with: Potassium. This is something that's good for normies (what I call normal people). When I was younger, I used to seek out high potassium food and drink because it helped me avoid leg cramps. I used to get HORRIBLE leg cramps, so bananas and milk (that's right, it's high in phosphorus AND potassium), All Sport and other potassium high stuff was a constant in my life. Now, I'm supposed to avoid them.
This makes it MORE difficult to find appropriate food and drink. I LOVE fruit juices, but all forms of citrus are high in potassium. Orange, Grapefruit, Cranberry, etc... And it gets worse. That's right, even worse than having to avoid cheese. There are two food items that are super high in potassium that I love to eat and are in most every dish I eat: Potatoes and Tomatoes. Both these items show up as ingredients in almost every meal I've ever eaten. These are constant staples in my diet. They're cheap, diverse, and we even grow them in our backyard garden!
There is one particular thing I'm supposed to eat LOTS of...protein. Protein helps your body heal, so anyone who is sick or in the hospital is supposed to eat lots of protein to keep their albumin levels high. But, there's a problem. All proteins (that is meat, fish, eggs) are also high in phosphorus. It's a catch 22. Darned if you do, darned if you don't.
So, that's how the Renal diet works. It's incredibly annoying and stops you from eating most stuff that tastes good. I've never gotten a good report on my toxin levels because if one gets low (phosphorus) then the albumin is low too.
Good. Bad. It doesn't matter. I know that the build up of these toxins will end up killing me, but sometimes I just want to eat some cheesey mashed potatoes! :)
Grace and Peace,
-Nat
All people on dialysis have to be on a Renal diet plan, though the extremes of the diet vary greatly from person to person. Basically, if you can't pee, your body fills up with toxins normally urinated out of your body. Dialysis attempts to remove both the toxins and the excess water, but it cannot do it all. So, you are to avoid certain foods that are high in these toxins.
There are LOTS of different toxins out there in LOTS of different food items. Shoot, even things that are good to eat for normal people end up being bad for dialysis people. The biggest toxin, and the one I struggle with the most, is Phosphorus. Phosphorus is found in ALL food. There is no way to avoid it, so I have to take special pills called 'phosphate binders' with every meal or snack.
As I'm eating, I take a chewable phosphate binder that removes the phosphate from the food I ate and turns it immediately into poop. That's right, poop. My body will then discharge the phosphates the next time I go to the bathroom. Which is usually some time in the next five minutes. That is why I can't go out to eat any more. My pills send me to the bathroom usually before I'm even done eating the meal.
There are lots of high phosphate foods. These are the foods I'm not supposed to eat very much of. This hurts, because I LOVE these foods. Here's a short list: Nuts, Beans, Okra, Chocolate, Pancakes, Biscuits, Waffles, etc... Then the big one...dairy products. That's right, all forms of dairy are high in phosphorus. Milk, Cheese, Ice Cream, etc... I LOVE drinking milk. I used to drink it every day. I LOVE ice cream. I used to eat it all the time. Don't even get me started on cheese. Cheese goes with EVERYTHING. Cheese goes ON everything. Cheese goes IN everything. Cheese makes up a major portion of my diet!
There is another toxin I struggle with: Potassium. This is something that's good for normies (what I call normal people). When I was younger, I used to seek out high potassium food and drink because it helped me avoid leg cramps. I used to get HORRIBLE leg cramps, so bananas and milk (that's right, it's high in phosphorus AND potassium), All Sport and other potassium high stuff was a constant in my life. Now, I'm supposed to avoid them.
This makes it MORE difficult to find appropriate food and drink. I LOVE fruit juices, but all forms of citrus are high in potassium. Orange, Grapefruit, Cranberry, etc... And it gets worse. That's right, even worse than having to avoid cheese. There are two food items that are super high in potassium that I love to eat and are in most every dish I eat: Potatoes and Tomatoes. Both these items show up as ingredients in almost every meal I've ever eaten. These are constant staples in my diet. They're cheap, diverse, and we even grow them in our backyard garden!
There is one particular thing I'm supposed to eat LOTS of...protein. Protein helps your body heal, so anyone who is sick or in the hospital is supposed to eat lots of protein to keep their albumin levels high. But, there's a problem. All proteins (that is meat, fish, eggs) are also high in phosphorus. It's a catch 22. Darned if you do, darned if you don't.
So, that's how the Renal diet works. It's incredibly annoying and stops you from eating most stuff that tastes good. I've never gotten a good report on my toxin levels because if one gets low (phosphorus) then the albumin is low too.
Good. Bad. It doesn't matter. I know that the build up of these toxins will end up killing me, but sometimes I just want to eat some cheesey mashed potatoes! :)
Grace and Peace,
-Nat
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