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?)
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