I left from NC on my way to MD Sunday morning. As I was leaving, Eric was picking up a trailer to fill with his stuff to move to CO, so leaving basically sucked. The drive was without incident and full of cry-singing.
In the evening I had to hook up to my machine pretty early in order to disconnect early enough to get to my appointment on time in the morning. I found the UMD transplant review process to be very different from the one at Duke. We (my mom and I) stayed in one waiting room most of the time, and we were called back by various professionals who gave us a talk, asked a few questions, and sent us back into the waiting room. Duke's information packet was specific about bringing a caregiver, and it had a map of where to park and how to get there. I only knew where to go at UMD because I asked the lady over the phone (who was super helpful), and my mom happens to work for the hospital.
There was a lot of waiting, and it was really cold. I didn't have to re-do the chest x-ray or the EKG, but they did draw some blood (though not nearly as much). They did not get all the labs from Duke while I was there, but I gave them my transplant coordinator's contact info, so they could get it all from her.
The people I met with said the same stuff the Duke people did, except that I also met with a cardiologist who wants me to gain 3 pounds before the surgery. I also met with a dietitian (which I did not at Duke) who promised that if my surgery is scheduled ahead of time I can call her a few days before and she will ensure that I have tasty food when I get out of surgery. That's pretty cool.
UMD also said that I can get the surgery there, and after a month or so, when I am healing well, they can transfer my case to Duke so I can finish my follow-up appointments here. The surgeon seemed ready to stick a kidney in me right there! He said he thought we could get it done next month!
That sounds great, but complicated with school and such, so I think we are going to shoot for November... Assuming donor stuff works out.
Donor stuff: UMD gave me a few huge packets for potential donors to fill out then send back to them for review. The packets, and more info can be found here: http://umm.edu/programs/transplant/services/kidney/living-donor/evaluation
My parents are still intent upon donating a kidney to me, but the surgeon stressed the benefit of receiving a kidney from someone closer to my own age (the kidney would be more likely to last longer). So for those who expressed interest in being tested, follow the link above, complete the packet, and fax or mail it to the UMD transplant center for review.
Also- I need to get started on raising money if I intend to do this transplant soon as the financial coordinator suggests I have $5,000 at the very least.
So, ,that's the gist of it. Finally getting somewhere with this transplant mess, but it still feels so far away. I am still not ready to believe that things are actually going to move forward in November, but I hope they do!
Wednesday, July 23, 2014
Wednesday, July 16, 2014
First review
Last Monday I did my kt/v (this means I have to pee in a bucket all day, then capture the liquid that is pumped from my machine that night). I had to take a break from work during the day so I could come home and pee because ew. Then everything had to sit in my car the next day until I left work to get my labs done and drop the liquids off- it was an especially hot NC afternoon. I was actually surprised to find that my care did not stink after this.
Friday was the appointment at Duke University hospital. I hooked up to my machine early Thursday night so I could get my 9 hours in before an early morning. We got there early, but of course I forgot my phone, so Eric went home to get it while I waited to check in. After checking in (at 7:50) along side a group of 5 other people requesting transplants and their caregivers, I waited about 20 minutes for them to call me back to draw blood- a lot of blood. I think it was 15 vials. Then they had me wait some more. I talked to a guy named Josè who seemed like some kind of organizer. He had a clip board and was walking around making sure people got where they needed to go. Then they took my vitals (not sure why they didn't do this before drawing blood, but ok). I went to another clinic and got a chest x-ray... They gave me little stickers with metal nipples to put on my own nipples. I still don't know the purpose of these nipple protectors. I was wearing a loose shirt over top, so it wasn't a modesty thing. Just metal nipple stickers.
Then I got an EKG, and by the time we got out of there, José was looking for us because we were late for the 'class' where they tell us all about transplant. I knew most of the things they said, and a lot of it did not apply to me since I don't have any other conditions. The main points were about having 2 caregivers and at least one person with you 24/7 the first week you are out of the hospital after transplant, dialysis keeps you alive but it isn't good for your body, the longer you are on dialysis the harder it is for a transplant kidney to work correctly, after you get a transplant you have to take a ton of meds with crappy side effects for the life of the kidney, etc.
We filled out paperwork, and I signed the form stating that I was willing to take a 'high risk' kidney. Duke has a program where they harvest organs that some programs don't. These are the organs of someone who was a man who had sex with men, used IV drugs in the past 5 years, or any list of factors that could increase the likelihood that they have HIV, or HEP B or C. While they test for these things, sometimes these diseases are in the blood stream but have not developed enough inside the body for a person to test positive yet. Even though the likelihood of these people having an infection that does not show up in testing is very low, they are considered high risk donors. So you sign a form that says you are willing to take that risk (it is minimal), and this could allow you to get a kidney up to 3 years faster (average at Duke is currently 5 years).
They served lunch, which was chicken salad sandwiches, apples and a cookie. I figured lunch would not include a protein-rich vegetarian option, so I ate the apples and cookie, and I drank the protein drink I brought with me (I have to have a lot of protein in my diet since the machine filters it out at night).
Then we were led to an exam room where we sat the next 2 hours while a parade of professionals came through. First we talked to a social worker who asked Eric a bunch of questions. She will also be talking to my mom over the phone since I told her my mom will be my primary caregiver. Then she sent Eric out of the room to ask me all the same questions she asked him (do you smoke/drink, etc) and then she told me a story about why I should let people give me a kidney. She said she doesn't understand why people are uncomfortable asking for a kidney donation (really? Cuz I think that's obvious), but even so, she made me feel better about it. She also gave me a phone number to give out to everyone and said that I should just put the number out there. If a person decides to call the number they can talk about/get tested to see if they can give me a kidney (or give a kidney to anyone).
So- to those interested, the number is 919-613-7777
This is if I decided to get the kidney at Duke. I am sure UMD will give me a number for the same purpose.
I talked to a finance person who said I should have at least $5,000 saved for transplant recovery needs (I have a long way to go on that front). Then I talked to Dr. Collins- the awesome surgeon who put in my PD catheter- about what transplant surgery and recovery are like. I also talked to Dr. Ellis, a Nephrologist, about the surgery and recovery. By the way- recovery includes 25 appointments over the year after transplant. 6 weeks without too much activity, and close monitoring to look for any issues with the kidney, the medications, surgical complications, etc.
Then we made an appointment for me to get an echocardiogram in a month, and that was the whole day. There was a lot of waiting, but everyone was very friendly and patient. I am not excited to go do the same thing at UMD, but my transplant coordinator says she can send the paperwork to them so that maybe I don't have to get my blood drawn, do the metal nipple chest x-ray, or an EKG over again.
Friday was the appointment at Duke University hospital. I hooked up to my machine early Thursday night so I could get my 9 hours in before an early morning. We got there early, but of course I forgot my phone, so Eric went home to get it while I waited to check in. After checking in (at 7:50) along side a group of 5 other people requesting transplants and their caregivers, I waited about 20 minutes for them to call me back to draw blood- a lot of blood. I think it was 15 vials. Then they had me wait some more. I talked to a guy named Josè who seemed like some kind of organizer. He had a clip board and was walking around making sure people got where they needed to go. Then they took my vitals (not sure why they didn't do this before drawing blood, but ok). I went to another clinic and got a chest x-ray... They gave me little stickers with metal nipples to put on my own nipples. I still don't know the purpose of these nipple protectors. I was wearing a loose shirt over top, so it wasn't a modesty thing. Just metal nipple stickers.
Then I got an EKG, and by the time we got out of there, José was looking for us because we were late for the 'class' where they tell us all about transplant. I knew most of the things they said, and a lot of it did not apply to me since I don't have any other conditions. The main points were about having 2 caregivers and at least one person with you 24/7 the first week you are out of the hospital after transplant, dialysis keeps you alive but it isn't good for your body, the longer you are on dialysis the harder it is for a transplant kidney to work correctly, after you get a transplant you have to take a ton of meds with crappy side effects for the life of the kidney, etc.
We filled out paperwork, and I signed the form stating that I was willing to take a 'high risk' kidney. Duke has a program where they harvest organs that some programs don't. These are the organs of someone who was a man who had sex with men, used IV drugs in the past 5 years, or any list of factors that could increase the likelihood that they have HIV, or HEP B or C. While they test for these things, sometimes these diseases are in the blood stream but have not developed enough inside the body for a person to test positive yet. Even though the likelihood of these people having an infection that does not show up in testing is very low, they are considered high risk donors. So you sign a form that says you are willing to take that risk (it is minimal), and this could allow you to get a kidney up to 3 years faster (average at Duke is currently 5 years).
They served lunch, which was chicken salad sandwiches, apples and a cookie. I figured lunch would not include a protein-rich vegetarian option, so I ate the apples and cookie, and I drank the protein drink I brought with me (I have to have a lot of protein in my diet since the machine filters it out at night).
Then we were led to an exam room where we sat the next 2 hours while a parade of professionals came through. First we talked to a social worker who asked Eric a bunch of questions. She will also be talking to my mom over the phone since I told her my mom will be my primary caregiver. Then she sent Eric out of the room to ask me all the same questions she asked him (do you smoke/drink, etc) and then she told me a story about why I should let people give me a kidney. She said she doesn't understand why people are uncomfortable asking for a kidney donation (really? Cuz I think that's obvious), but even so, she made me feel better about it. She also gave me a phone number to give out to everyone and said that I should just put the number out there. If a person decides to call the number they can talk about/get tested to see if they can give me a kidney (or give a kidney to anyone).
So- to those interested, the number is 919-613-7777
This is if I decided to get the kidney at Duke. I am sure UMD will give me a number for the same purpose.
I talked to a finance person who said I should have at least $5,000 saved for transplant recovery needs (I have a long way to go on that front). Then I talked to Dr. Collins- the awesome surgeon who put in my PD catheter- about what transplant surgery and recovery are like. I also talked to Dr. Ellis, a Nephrologist, about the surgery and recovery. By the way- recovery includes 25 appointments over the year after transplant. 6 weeks without too much activity, and close monitoring to look for any issues with the kidney, the medications, surgical complications, etc.
Then we made an appointment for me to get an echocardiogram in a month, and that was the whole day. There was a lot of waiting, but everyone was very friendly and patient. I am not excited to go do the same thing at UMD, but my transplant coordinator says she can send the paperwork to them so that maybe I don't have to get my blood drawn, do the metal nipple chest x-ray, or an EKG over again.
Saturday, July 5, 2014
Transplant progress
I apologize for not posting for awhile, but there has not really been any news until recently. A few months ago, I had issues with my insurance company and decided to switch to Medigap BCBS. After a million hours on the phone (mostly dealing with changing, then ending my Obamacare plan), I was able to activate my Medigap coverage. After that I had to wait for Duke University Hospital to re-review my referral for transplant and find an appointment time for me.
In the meantime, I also talked to University of MD hospital about transplant review. In the next two weeks, I will be poked, prodded and quizzed by a team of doctors at each of the two hospitals. My appointment at Duke is July 11th, and the one in MD is on July 21st. Each of these takes an entire day and all that I know at this point is that I need to bring someone with me so I can demonstrate I have support (and a caregiver after the transplant surgery), and that I need to be prepared to be at the hospital all day. I think they do both physical and psychological tests to make sure transplant is the best option. This is also when I will get information about how to enlist altruistic donors.
I'm waiting on the packets which should come through the mail any day. I'm assuming there will be endless paperwork involved. I feel like everything is taking forever, but my doctor said that's how things go when you are on dialysis- everything moves really slowly. Even if I receive a kidney from a family member, the whole process is likely to take more than a year from the initial appointment for review. In fact, It will take at least 60 days after each appointment for me to get onto any lists.
I rarely have news, and it's hard for people to understand that this process takes forever. I will do my best to post updates here when there is news, but in the meantime, I am settling into the dialysis lifestyle. It's going to be a long ride.
I generally feel healthy, although maybe a little more tired than before my kidneys stopped working, but this has not kept me from staying active. The main frustration is food- I miss ice cream, pizza, salt and vinegar chips, and all of the amazing things that can be done with cheese. Sometimes it's a pain to schedule my life around the 9 hours I have to hook up to my machine each night, but the bright side to that is that I always get my rest and it helps to remind me to slow down when I starts to over-schedule myself.
I'm so glad that I am on PD because I get to travel/go away for short weekend trips, and I am planning my first plane ride with my equipment for next month- a hiking trip in Colorado with Eric and my parents. I arranged ahead of time to have all of my liquids sent to the places we are staying, and I will bring my machine and other supplies with me on the plane. Apparently, medical supplies are allowed to be carried on- we'll see how fun it is to lug that machine through the airport.
At this point I have still not attempted swimming. Next week we are going to the beach though, so I am getting a waterproof tegiderm dressing to keep my port/tube dry. I'm feeling a little apprehensive about the whole bathing suit situation though. I feel like I am too young to wear a one piece bathing suit, but in a bikini, it will be obvious that there is a tube sticking out of my belly. I read an article about a model who posed with her ostomy bag and, it sounds lame, but it made me feel a little better. http://www.people.com/article/bethany-townsend-bikini-colostomy-bag-crohns-disease-inspiring-viral
When it was posted on facebook a bunch of other people responded with photos of themselves with their ostomy bags. Even though I don't have an ostomy bag, I have a similar situation, and I feel like these people are being really brave by showing the world that their illness is nothing to hide. I'm not sure if I'm ready for that just yet, but I think I will be soon. I am thinking of maybe even 'outing' myself on facebook because right now only my family, coworkers, and a few of my closest friends know about what is going on. I don't want the extra attention though- plus, I feel like I talk about 'how I'm feeling' all the time as it is.
Speaking of- I think that's about enough of that for now. I will try my best to post after the first appointment to share what it was like/what hoops I get to jump through next (flaming ones?)
In the meantime, I also talked to University of MD hospital about transplant review. In the next two weeks, I will be poked, prodded and quizzed by a team of doctors at each of the two hospitals. My appointment at Duke is July 11th, and the one in MD is on July 21st. Each of these takes an entire day and all that I know at this point is that I need to bring someone with me so I can demonstrate I have support (and a caregiver after the transplant surgery), and that I need to be prepared to be at the hospital all day. I think they do both physical and psychological tests to make sure transplant is the best option. This is also when I will get information about how to enlist altruistic donors.
I'm waiting on the packets which should come through the mail any day. I'm assuming there will be endless paperwork involved. I feel like everything is taking forever, but my doctor said that's how things go when you are on dialysis- everything moves really slowly. Even if I receive a kidney from a family member, the whole process is likely to take more than a year from the initial appointment for review. In fact, It will take at least 60 days after each appointment for me to get onto any lists.
I rarely have news, and it's hard for people to understand that this process takes forever. I will do my best to post updates here when there is news, but in the meantime, I am settling into the dialysis lifestyle. It's going to be a long ride.
I generally feel healthy, although maybe a little more tired than before my kidneys stopped working, but this has not kept me from staying active. The main frustration is food- I miss ice cream, pizza, salt and vinegar chips, and all of the amazing things that can be done with cheese. Sometimes it's a pain to schedule my life around the 9 hours I have to hook up to my machine each night, but the bright side to that is that I always get my rest and it helps to remind me to slow down when I starts to over-schedule myself.
I'm so glad that I am on PD because I get to travel/go away for short weekend trips, and I am planning my first plane ride with my equipment for next month- a hiking trip in Colorado with Eric and my parents. I arranged ahead of time to have all of my liquids sent to the places we are staying, and I will bring my machine and other supplies with me on the plane. Apparently, medical supplies are allowed to be carried on- we'll see how fun it is to lug that machine through the airport.
At this point I have still not attempted swimming. Next week we are going to the beach though, so I am getting a waterproof tegiderm dressing to keep my port/tube dry. I'm feeling a little apprehensive about the whole bathing suit situation though. I feel like I am too young to wear a one piece bathing suit, but in a bikini, it will be obvious that there is a tube sticking out of my belly. I read an article about a model who posed with her ostomy bag and, it sounds lame, but it made me feel a little better. http://www.people.com/article/bethany-townsend-bikini-colostomy-bag-crohns-disease-inspiring-viral
When it was posted on facebook a bunch of other people responded with photos of themselves with their ostomy bags. Even though I don't have an ostomy bag, I have a similar situation, and I feel like these people are being really brave by showing the world that their illness is nothing to hide. I'm not sure if I'm ready for that just yet, but I think I will be soon. I am thinking of maybe even 'outing' myself on facebook because right now only my family, coworkers, and a few of my closest friends know about what is going on. I don't want the extra attention though- plus, I feel like I talk about 'how I'm feeling' all the time as it is.
Speaking of- I think that's about enough of that for now. I will try my best to post after the first appointment to share what it was like/what hoops I get to jump through next (flaming ones?)
Tuesday, December 31, 2013
PD training has begun!
I started training yesterday, and I should be done next Thursday. I really like using Peritoneal Dialysis so far and I have noticed a huge upswing in my energy even in just 2 days! I am really excited about getting this process started, and I can't wait to be able to control dialysis myself, in my own house, overnight!
There is not much to say about this except that I am happy to be feeling so energized, and I'm actually about to go work out for the first time in awhile (I really can't wait to stop feeling so weak, frail, and helpless all the time).
Also, my hands are going to be super dry and raw forever since I have to wash them so intensely and so frequently from now on, but I guess that means I will finally be using all of those lotions that I have accumulated through holiday presents over the years.
There is not much to say about this except that I am happy to be feeling so energized, and I'm actually about to go work out for the first time in awhile (I really can't wait to stop feeling so weak, frail, and helpless all the time).
Also, my hands are going to be super dry and raw forever since I have to wash them so intensely and so frequently from now on, but I guess that means I will finally be using all of those lotions that I have accumulated through holiday presents over the years.
What about a transplant?
I think this is the most common question I hear from people who are curious about my progress, so I will go ahead and put the information here.
I don't have insurance until January 1st, and you can't get moving in the direction of transplant until you have insurance in place. This is primarily because the drugs you need to take for the rest of your life after a transplant are super expensive ($1,500/month expensive), so they don't want to give away a kidney to someone who can't afford the meds to maintain it.
My "Obamacare" insurance starts January 1st (tomorrow), but I'm not exactly sure yet what that covers. We will figure this out as we go along. I have a wonderful social worker who is helping me with all of these things. Also- on January 6th, I have an appointment to officially apply for Medicare. I am hoping that it begins shortly after that since what I am really leaning on for my bills is the hope that Medicare will apply retroactively for me.
So I am currently nowhere as far as transplants go, but I will be moving in that direction soon. Also, as much as I appreciate the heartfelt offers, I'm not really looking for people to offer their kidneys to me at this point. My family will be tested when we are ready, and we will go from there. I'll be sure to keep up with posting though so people can have an idea of where I am in the process.
I don't have insurance until January 1st, and you can't get moving in the direction of transplant until you have insurance in place. This is primarily because the drugs you need to take for the rest of your life after a transplant are super expensive ($1,500/month expensive), so they don't want to give away a kidney to someone who can't afford the meds to maintain it.
My "Obamacare" insurance starts January 1st (tomorrow), but I'm not exactly sure yet what that covers. We will figure this out as we go along. I have a wonderful social worker who is helping me with all of these things. Also- on January 6th, I have an appointment to officially apply for Medicare. I am hoping that it begins shortly after that since what I am really leaning on for my bills is the hope that Medicare will apply retroactively for me.
So I am currently nowhere as far as transplants go, but I will be moving in that direction soon. Also, as much as I appreciate the heartfelt offers, I'm not really looking for people to offer their kidneys to me at this point. My family will be tested when we are ready, and we will go from there. I'll be sure to keep up with posting though so people can have an idea of where I am in the process.
Wednesday, December 18, 2013
PD port
Monday I had a procedure to insert my Peritoneal Dialysis port. This one is in my stomach, and it is only one plastic tube instead of two. It will allow me to do dialysis overnight at home. The current count of tubes running out of my body is now up to 3. Hopefully my PD port will heal soon though, and I will be able to get rid of the Hemodialysis port in my chest- which is still making bras really complicated for me.
For the PD port on Monday, they cut 2 small holes in my stomach- one that is going to heal completely and was just used to guide the tube into my peritoneal cavity, and the other through which the plastic tube exits my body. The procedure went really well, and I was sent home shortly after. Right now I am still hobbling around though because those two holes went through my abdominal muscles, and (as I now know for a fact) those muscles are used for EVERYTHING. It has only been two days, but I do feel an improvement. I keep tricking myself into thinking things are not that big of a deal, so I need to cancel some plans I made this week thinking 'Oh, they're just going to slide a plastic tube into me. I will be just fine to drive and wait tables and run a marathon in two days.' I think right now the hardest thing for me is to realize that all these things are really doing a number on my body- and that's okay- I just have to be prepared to do nothing for a little longer.
Eric pointed out last night that this is the last surgery until transplant- so I won't have to feel better then immediately get cut into again this time. That's a good feeling...Then I remembered that they will have to take the hemodialysis catheter out and that will be another procedure. I am really almost there though, and I will keep on sitting here in a haze of painkillers until I can move.
For the PD port on Monday, they cut 2 small holes in my stomach- one that is going to heal completely and was just used to guide the tube into my peritoneal cavity, and the other through which the plastic tube exits my body. The procedure went really well, and I was sent home shortly after. Right now I am still hobbling around though because those two holes went through my abdominal muscles, and (as I now know for a fact) those muscles are used for EVERYTHING. It has only been two days, but I do feel an improvement. I keep tricking myself into thinking things are not that big of a deal, so I need to cancel some plans I made this week thinking 'Oh, they're just going to slide a plastic tube into me. I will be just fine to drive and wait tables and run a marathon in two days.' I think right now the hardest thing for me is to realize that all these things are really doing a number on my body- and that's okay- I just have to be prepared to do nothing for a little longer.
Eric pointed out last night that this is the last surgery until transplant- so I won't have to feel better then immediately get cut into again this time. That's a good feeling...Then I remembered that they will have to take the hemodialysis catheter out and that will be another procedure. I am really almost there though, and I will keep on sitting here in a haze of painkillers until I can move.
Monday, December 9, 2013
So what can I eat?
While I was in the hospital, I had a nutritionist to talk to about every meal. Now that I'm home, it is really hard to figure out what I can eat. The list seems long, but when I walk through the grocery store it seems like everything that I enjoy is off limits. I'm pretty sure that going out to eat, or going to a friend's place for dinner are both pretty much out of the question for awhile. The renal diet is really complicated and seems to make no sense. Fortunately, I have a little experience in paying extra attention to my food because I was vegan in college. I'm at least able to apply those skills, but I will be spending a lot more time thinking about, cooking, and procuring food than I have in a long time.
Not eating meat adds an extra layer of complexity to this diet since I feel like all I can eat is bread, meat, and limited selection of fruits and vegetables. Lately, I have had a lot of portabella mushrooms and egg salad sandwiches, but I think stir fry might make it into the mix this week. I'm hoping to find some way to make a sort of lasagna since I can have noodles and ricotta cheese, but that concept is still in the making. DaVita's website has been a helpful guide though: http://www.vcuhealth.org/upload/docs/Transplant/renal_diet.pdf#page=25&zoom=auto,0,0
Beyond that- I moved to Southpoint to be close to my dialysis center, and to be in a place that would be easier to keep clean. We're still unpacking, but we have the important things-heat and internet! It's weird to live in an apartment complex where there is so much going on all the time, but I think I'll get used to it. The dog and cat sure have settled in nicely, making this a much easier transition.
I'm still amazed at how helpful my doctor has been. He has really been more like a case manager- setting up appointments for me with other specialists and finding me a chair at a dialysis center. He coordinated with my hospital in Florida to help me get home. Dr. Middleton has really been incredible.
I'm headed back to unpacking, but I just wanted to add an update since it had been awhile, and my situation is finally calming down. I'm starting to figure out what this new normal is going to be like- I think.
Not eating meat adds an extra layer of complexity to this diet since I feel like all I can eat is bread, meat, and limited selection of fruits and vegetables. Lately, I have had a lot of portabella mushrooms and egg salad sandwiches, but I think stir fry might make it into the mix this week. I'm hoping to find some way to make a sort of lasagna since I can have noodles and ricotta cheese, but that concept is still in the making. DaVita's website has been a helpful guide though: http://www.vcuhealth.org/upload/docs/Transplant/renal_diet.pdf#page=25&zoom=auto,0,0
Beyond that- I moved to Southpoint to be close to my dialysis center, and to be in a place that would be easier to keep clean. We're still unpacking, but we have the important things-heat and internet! It's weird to live in an apartment complex where there is so much going on all the time, but I think I'll get used to it. The dog and cat sure have settled in nicely, making this a much easier transition.
I'm still amazed at how helpful my doctor has been. He has really been more like a case manager- setting up appointments for me with other specialists and finding me a chair at a dialysis center. He coordinated with my hospital in Florida to help me get home. Dr. Middleton has really been incredible.
I'm headed back to unpacking, but I just wanted to add an update since it had been awhile, and my situation is finally calming down. I'm starting to figure out what this new normal is going to be like- I think.
Tuesday, December 3, 2013
Home!
I got to wash my hair for the first time in a week! It feels good to be clean and at home. Bathing is going to be a challenge though- since I can't get my catheter wet and it is hanging out of my chest. Fortunately, Eric got me a detachable shower head so I can have better control of the water.
We got my medicines from the pharmacy today- super expensive- hopefully I can get on Medicaid soon because everything is so expensive.
I have tomorrow to relax and get a few things together (especially my menu), then Thursday I am going to do dialysis. Right now I am doing hemodialysis which is where they take blood out of my body, clean it, and cycle it back in. This has to be done at a clinic which I will need to attend 3 days a week. Eventually, I might move on to paratenial dialysis which I can do at home while I sleep. The port for that takes 6 weeks to install though, and I'm hoping to be approved to a transplant soon.
So this will be my first x-mas in NC seeing as I can't travel away from my dialysis center. I'm pretty disappointed about missing out on my family and friends, but at least I won't be stuck in stressful holiday traffic.
We got my medicines from the pharmacy today- super expensive- hopefully I can get on Medicaid soon because everything is so expensive.
I have tomorrow to relax and get a few things together (especially my menu), then Thursday I am going to do dialysis. Right now I am doing hemodialysis which is where they take blood out of my body, clean it, and cycle it back in. This has to be done at a clinic which I will need to attend 3 days a week. Eventually, I might move on to paratenial dialysis which I can do at home while I sleep. The port for that takes 6 weeks to install though, and I'm hoping to be approved to a transplant soon.
So this will be my first x-mas in NC seeing as I can't travel away from my dialysis center. I'm pretty disappointed about missing out on my family and friends, but at least I won't be stuck in stressful holiday traffic.
Tunneled catheter
Yesterday I got a more permanent catheter inside my chest. It's pretty painful, but it should heal soon. I'm on dialysis right now, then I can collect my things (and tons of meds) and go home! I can't wait to get out of here, and I am so excited to see my puppy dog! I have a lot of work to do once I get home- I still have 2 final papers to write for class, but first I need to sanitize my dirty old house as much as I can because the last thing I can handle right now is an infection. I think we will look at new places tomorrow, which means I will have to start packing too.
I have to be on a special diet to prevent too many toxins in my blood- low salt, potassium, phosphates, and protein. I have had a few lovely friends offer to bring me food, but I'm not even sure what I'm allowed to eat right now. We are hoping to get hooked up with a nutritionist at Duke to help me plan out meals.
I really can't wait to wash my hair. I can't shower because of this catheter, but as soon as I get home, I am figuring out a way to wash this rat's nest on top of my head! I will have to talk to the Dr. soon about all the meds I will need to start taking. In the meantime, I'm going to lay back down because that is the best way to make this tube in my chest hurt less.
I have to be on a special diet to prevent too many toxins in my blood- low salt, potassium, phosphates, and protein. I have had a few lovely friends offer to bring me food, but I'm not even sure what I'm allowed to eat right now. We are hoping to get hooked up with a nutritionist at Duke to help me plan out meals.
I really can't wait to wash my hair. I can't shower because of this catheter, but as soon as I get home, I am figuring out a way to wash this rat's nest on top of my head! I will have to talk to the Dr. soon about all the meds I will need to start taking. In the meantime, I'm going to lay back down because that is the best way to make this tube in my chest hurt less.
Monday, December 2, 2013
Finally- I travel plans
The new catheter is in my chest now. It's pretty sore, but they are keeping me comfortable. I have to stay in Florida again tonight, but my mom made flight arrangements for tomorrow evening. In the morning I will do another round of dialysis, then I can get on a plane to home! I don't have to take a helicopter, and I don't have to be an inpatient again in Durham. I will have to go to Duke for dialysis on Thursday, and my mom is staying with me for a few more days so we can figure out MA, and get settled.
Eric just left, so when he gets home he is going to do some cleaning to help make sure my port doesn't get infected. We have also picked out a few places to live, so he is going to start checking them out so we can move to a cleaner/newer place as soon as possible.
I am really excited to see Xuxa, and finally be in my own house!
Things are going to be pretty tough for awhile, but I am so lucky to have everyone taking such good care of me. My mom has been here since Tuesday- she flew in as soon as possible. Eric has been awesome, and so supportive. Both of my jobs have been really understanding. I even have friends already offering to help me move. Now I just have to figure out the plan going forward. Oh yeah- and those two final papers that are due for school! On the bright side- I get to learn a lot about medical social work, and how to help clients who are stuck in the hospital without insurance.
Eric just left, so when he gets home he is going to do some cleaning to help make sure my port doesn't get infected. We have also picked out a few places to live, so he is going to start checking them out so we can move to a cleaner/newer place as soon as possible.
I am really excited to see Xuxa, and finally be in my own house!
Things are going to be pretty tough for awhile, but I am so lucky to have everyone taking such good care of me. My mom has been here since Tuesday- she flew in as soon as possible. Eric has been awesome, and so supportive. Both of my jobs have been really understanding. I even have friends already offering to help me move. Now I just have to figure out the plan going forward. Oh yeah- and those two final papers that are due for school! On the bright side- I get to learn a lot about medical social work, and how to help clients who are stuck in the hospital without insurance.
Waiting...
They told me they would come get me between 9:30 and 10, but then they came back and said between 12 and 1. I haven't been able to eat because they will use anesthesia to install my 'more comfortable' catheter. So mostly I'm hungry and getting impatient. No one has said anything about me going home today, so I'm a little discouraged on that topic.
Eric is going home today- he has to go to work tomorrow morning, and hopefully start looking for new places to live. We're trying to find a cleaner place because our house is old and impossible to keep clean. Since I'll have a port that I need to keep sterile, it just won't work for us to stay where we are. There is just so much to do, but I'm not allowed to do anything. It's starting to drive me mad. I'm doing my best not to be irritable- it isn't anyone's fault- but I'm really sick of being here. I'm definitely sick of being sick. I am not the kind of person who likes to be taken care of, and it is getting old having to tell a nurse that I am fine every 30 minutes.
I really can't wait to go home...
Eric is going home today- he has to go to work tomorrow morning, and hopefully start looking for new places to live. We're trying to find a cleaner place because our house is old and impossible to keep clean. Since I'll have a port that I need to keep sterile, it just won't work for us to stay where we are. There is just so much to do, but I'm not allowed to do anything. It's starting to drive me mad. I'm doing my best not to be irritable- it isn't anyone's fault- but I'm really sick of being here. I'm definitely sick of being sick. I am not the kind of person who likes to be taken care of, and it is getting old having to tell a nurse that I am fine every 30 minutes.
I really can't wait to go home...
Stop poking me!
It's Monday morning now (I have been in the hospital for a week). I have received at least 17 needle sticks- more if you include the numbing needles for my biopsy and catheter...I really hate needles.
After I was here a few days, they did a biopsy of my kidney (Friday). The results were rushed, so we received them Saturday evening. The sample had been sent out for analysis to a lab in Alabama. Dr. Rose called us Saturday with the news. My kidneys are 60-80% fibrosis (scarred up), which means that it is highly unlikely they will start functioning enough to filter my blood again. I do not have a secondary issues, at least. The cause of my kidney failure is just my IGA Nephropathy increasing in unheard of strides (yup, I'm always a freak of nature- a fascination of medical science). Ultimately this means I will be on dialysis until I can get a kidney transplant-not the news I was hoping for, but at least there isn't a larger system-wide issue. Apparently I am healthy aside from my kidneys.
I did more dialysis on Saturday, and we started to talk about going home to NC again. I have been getting tired of feeling generally fine, but not allowed to leave the hospital. I might have to do a hospital transfer (they take me to NC on a helicopter). This makes me crazy because a- I don't want to get into a helicopter, and b- I FEEL FINE! I just want to take a plane home- to my house. I can go to Duke for dialysis, but I want to go home. I'm learning that there are administrative issues with this, and that I will need to be an inpatient at Duke at least briefly in order to gain assistance applying for MA.
I've been told that I will get to leave today, but we still have to coordinate with Dr. Middleton- my Dr. at Duke- to make sure there is space for me there. I still don't know if I can take the plane or if I will be stuck on a helicopter. I have a sneaking suspicion that they won't let me go home today, but I guess I'll have to wait and see. No one seems to know what's going on right now. One nurse came in and took my blood sugar- another poke- but I don't know why. It has been normal, and I'm not diabetic so what's with the useless extra needle sticks!?
Right now I'm waiting for them to take me to a surgical room to put in a more permanent catheter because the one in my neck is only temporary (and it's starting to really irritate me).
After I was here a few days, they did a biopsy of my kidney (Friday). The results were rushed, so we received them Saturday evening. The sample had been sent out for analysis to a lab in Alabama. Dr. Rose called us Saturday with the news. My kidneys are 60-80% fibrosis (scarred up), which means that it is highly unlikely they will start functioning enough to filter my blood again. I do not have a secondary issues, at least. The cause of my kidney failure is just my IGA Nephropathy increasing in unheard of strides (yup, I'm always a freak of nature- a fascination of medical science). Ultimately this means I will be on dialysis until I can get a kidney transplant-not the news I was hoping for, but at least there isn't a larger system-wide issue. Apparently I am healthy aside from my kidneys.
I did more dialysis on Saturday, and we started to talk about going home to NC again. I have been getting tired of feeling generally fine, but not allowed to leave the hospital. I might have to do a hospital transfer (they take me to NC on a helicopter). This makes me crazy because a- I don't want to get into a helicopter, and b- I FEEL FINE! I just want to take a plane home- to my house. I can go to Duke for dialysis, but I want to go home. I'm learning that there are administrative issues with this, and that I will need to be an inpatient at Duke at least briefly in order to gain assistance applying for MA.
I've been told that I will get to leave today, but we still have to coordinate with Dr. Middleton- my Dr. at Duke- to make sure there is space for me there. I still don't know if I can take the plane or if I will be stuck on a helicopter. I have a sneaking suspicion that they won't let me go home today, but I guess I'll have to wait and see. No one seems to know what's going on right now. One nurse came in and took my blood sugar- another poke- but I don't know why. It has been normal, and I'm not diabetic so what's with the useless extra needle sticks!?
Right now I'm waiting for them to take me to a surgical room to put in a more permanent catheter because the one in my neck is only temporary (and it's starting to really irritate me).
Sunday, December 1, 2013
Hospital admission
After the chest x-ray, I eventually headed to dialysis. While I was there (feeling awful- intense headache, struggling to breathe), I think I slept. I was moved to a private room in the hospital since they determined that I would be here awhile. I was assigned a general physician Dr. Patel, and a Nephrologist, Dr. Rose.
The hospital in Tampa allows visitors to stay 24/7, so when my mom arrived, she set up shop on a couch in my room. For the first two days in the hospital, I was in a lot of pain. I kept getting painful shots in my belly- to avoid blood clots, and to increase my red blood cell count. My headache was excruciating and Tylenol didn't seem to put a dent in it. I was nauseous a lot- I think from the hydrothorazine (?) they were giving me to reduce my obscenely high blood pressure. After 4 administrations of this pill, I was finally able to convince them to give me an alternative because it was making me sick- and with such little appetite, I was dry heaving.
When I first entered the hospital, my creatnine was a 10.4 (this is supposed to be 1 in a normal person), after my first round of dialysis, it went down to 6. The next day it was back up to 8- so the dr. explained that my kidneys aren't filtering like they are supposed to, and I will probably need to be on dialysis every other day. Due to my low blood count, I was given a transfusion, and this increased my energy. For the first time since coming to the hospital, I was feeling like a person again! I had spent two days in a miserable fog, so this was a welcome change.
Dr. Rose stated that she wanted to do a biopsy because the speed with which my kidneys crashed was very uncommon. She wanted to see if there was a secondary reason that caused this. I was really hesitant to agree to a biopsy since I had very painful internal bleeding when I got a biopsy done two years ago at Duke. I was finally feeling better too, so it was hard to agree to a procedure that I knew would make me feel crappy again, but she emphasized the importance of understanding why my kidneys were acting this way.
In the meantime- I spoke briefly with someone from financial aid, who got my information and helped me to apply for charity- since I do not have health insurance at all, and I am not even receiving treatment in my state of residence. A case manager also stopped by to briefly discuss coordinating a transfer so that I could go to Duke- the hospital close to my home.
The hospital in Tampa allows visitors to stay 24/7, so when my mom arrived, she set up shop on a couch in my room. For the first two days in the hospital, I was in a lot of pain. I kept getting painful shots in my belly- to avoid blood clots, and to increase my red blood cell count. My headache was excruciating and Tylenol didn't seem to put a dent in it. I was nauseous a lot- I think from the hydrothorazine (?) they were giving me to reduce my obscenely high blood pressure. After 4 administrations of this pill, I was finally able to convince them to give me an alternative because it was making me sick- and with such little appetite, I was dry heaving.
When I first entered the hospital, my creatnine was a 10.4 (this is supposed to be 1 in a normal person), after my first round of dialysis, it went down to 6. The next day it was back up to 8- so the dr. explained that my kidneys aren't filtering like they are supposed to, and I will probably need to be on dialysis every other day. Due to my low blood count, I was given a transfusion, and this increased my energy. For the first time since coming to the hospital, I was feeling like a person again! I had spent two days in a miserable fog, so this was a welcome change.
Dr. Rose stated that she wanted to do a biopsy because the speed with which my kidneys crashed was very uncommon. She wanted to see if there was a secondary reason that caused this. I was really hesitant to agree to a biopsy since I had very painful internal bleeding when I got a biopsy done two years ago at Duke. I was finally feeling better too, so it was hard to agree to a procedure that I knew would make me feel crappy again, but she emphasized the importance of understanding why my kidneys were acting this way.
In the meantime- I spoke briefly with someone from financial aid, who got my information and helped me to apply for charity- since I do not have health insurance at all, and I am not even receiving treatment in my state of residence. A case manager also stopped by to briefly discuss coordinating a transfer so that I could go to Duke- the hospital close to my home.
I can't breathe
For about two weeks, I was often short of breath. I couldn't sleep because I could not breathe laying down. Eventually, I found a way to sleep with several pillows propping me up. I would become short of breath when walking uphill- I'm overall in good health, so this was new for me. Since I don't have a lot of money, and I don't have health insurance, I was determined to deal with this issue until January when my 'Obamacare' plan began. It didn't seem to be getting any worse, so I thought I could handle sleeping sitting up for a month and a half in order to avoid massive medical bills (especially since I have to pay tuition for school).
Apparently my body had other plans. Thanksgiving was approaching, and my partner and I flew to Florida to visit his family for the holiday. We arrived on Monday evening and had some time to relax before going to bed. At 4am I woke up having trouble breathing- I was sitting up at this point, so I didn't know what to do. When I breathed in, my lungs made a crackling sound, and it was hard to get enough air. I was getting scared, but the last thing I wanted to do was wake up his parents and head to the ER in Florida. So I waited to see if breathing would get easier- it didn't, and Eric suggested we go to the hospital. I reluctantly agreed, and he woke his parents; his dad drove me to the ER while he followed in another vehicle.
When I walked into the ER, I was very short of breath. No one was in the waiting room, and I was helped rather quickly. I told them that I have IGA Nephropathy and a heart murmer, and they put me on oxygen. My blood pressure was very high (over 200), so they gave me hydro-something to decrease it. I got a chest x-ray, and they took blood. I was told that my kidneys were not working properly and they needed to prepare me for dialysis. Everything happened so fast that I don't really remember the order of things. Mostly I remember asking how long it would be until I could breathe again. I was panicking, so they gave me some Ativan through IV.
Eric asked a few times whether he should call my mom. After the ER doctor told me I would be here awhile, I agreed to let him call. My mom left work and got on a plane as soon as possible. It seemed really fast, but everything was still so fuzzy at that point. They inserted a catheter into my neck- a very uncomfortable experience. Shortly after this, I had my first dialysis treatment. I had an excruciating headache, and felt pretty nauseous, but I was glad that I was finally able to breathe, and I could sleep laying down. I spent a lot of time sleeping then- it felt so miserable to be awake anyway. I was only allowed to take Tylenol for my headache, so I was sleeping as much as possible to avoid the pain.
Apparently my body had other plans. Thanksgiving was approaching, and my partner and I flew to Florida to visit his family for the holiday. We arrived on Monday evening and had some time to relax before going to bed. At 4am I woke up having trouble breathing- I was sitting up at this point, so I didn't know what to do. When I breathed in, my lungs made a crackling sound, and it was hard to get enough air. I was getting scared, but the last thing I wanted to do was wake up his parents and head to the ER in Florida. So I waited to see if breathing would get easier- it didn't, and Eric suggested we go to the hospital. I reluctantly agreed, and he woke his parents; his dad drove me to the ER while he followed in another vehicle.
When I walked into the ER, I was very short of breath. No one was in the waiting room, and I was helped rather quickly. I told them that I have IGA Nephropathy and a heart murmer, and they put me on oxygen. My blood pressure was very high (over 200), so they gave me hydro-something to decrease it. I got a chest x-ray, and they took blood. I was told that my kidneys were not working properly and they needed to prepare me for dialysis. Everything happened so fast that I don't really remember the order of things. Mostly I remember asking how long it would be until I could breathe again. I was panicking, so they gave me some Ativan through IV.
Eric asked a few times whether he should call my mom. After the ER doctor told me I would be here awhile, I agreed to let him call. My mom left work and got on a plane as soon as possible. It seemed really fast, but everything was still so fuzzy at that point. They inserted a catheter into my neck- a very uncomfortable experience. Shortly after this, I had my first dialysis treatment. I had an excruciating headache, and felt pretty nauseous, but I was glad that I was finally able to breathe, and I could sleep laying down. I spent a lot of time sleeping then- it felt so miserable to be awake anyway. I was only allowed to take Tylenol for my headache, so I was sleeping as much as possible to avoid the pain.
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