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.

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.

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. 

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.

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. 

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.

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. 

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...

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).

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.  

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.