From my last post you know that Dana and I spent all day at the UAMS transplant clinic being evaluated to see if I am a good candidate for a kidney transplant in the future. The day went very smoothly. We listened to the same people talk about things that we heard 18 months ago when we went through this same process and were initially rejected. It was good to hear some of those things again since we had forgotten the details about the insurance and such. We learned the importance of taking care of the new kidney first hand as other couple that was in our evaluation class had already had a kidney transplant 7 years ago and because they didn't watch it as they should have, he lost his kidney and now is back on dialysis and being evaluated for being listed on the recipient list again. The good part of the day is that we didn't have to go through all the tests and procedures that we had to last time since the tests were still valid for only being 18 months in the past. All I had to do was give blood, which I get to do twice a month anyway so what's one more time.
The big news which prompted this post is that I just received my early Christmas present for this year. My phone rang and the caller ID said it was UAMS. The last time I got a call from UAMS it was to tell me that they were rejecting me from the kidney list. This time is different. I am now officially on the UNOS (United Network for Organ Sharing) kidney recipient list!
I now have a future hope beyond dialysis.
Next steps are to start dialysis and wait for a call from the transplant team. It has been a pretty good December for me. My spirits are high and I have a good outlook for the future.
Thanks
for everyone's prayers in our direction. I can tell people are
praying. To be evaluated and then listed the very next day is very
rare.
Stay Tuned ...
Friday, December 21, 2012
Wednesday, December 19, 2012
Check it off …
The last you heard from me I was moaning and whining about
walking slow and not being able to tie my shoes or get in and out of a
chair. Well 12 days later I am up and
going with no issues. I worked from
home the first three days since I was on pain meds and I couldn’t bend enough
to get in the car and putting my seat belt on was painful. My pain is gone and I have finally graduated to
wearing normal pants again, although I still can’t handle putting a belt on
(thank goodness for sweaters). My only
physical complaint is all of the tape that we have to keep ripping off my
belly. I’ll explain that more in a
minute.
Graduation …
So, as of Tuesday afternoon (12/18) Dana and I have
graduated as co-Valedictorians of our dialysis class (the class consisted of
Dana and myself). We exceeded
expectations and graduated 2 days earlier than was scheduled. I have
to give a big shout-out to the staff at the Davita Springhill Home Training
clinic. Nurse Fred and Nurse Jackie took
great care of us and made the process easy to learn and enjoyable. They are both knowledgeable about their
trade and very kind. They have created a
medical clinic like none I have experienced, it is very laid-back and friendly. They genuinely care about all of their
patients and I appreciate that since I will get to visit them twice a month for
the unforeseeable future. I don’t believe in coincidences and I am
thankful that Nurse Fred and his co-workers were our shepherds into this next
phase in our life.
We learned so much in our dialysis training that I don’t
know where to start or if I should even bore you with most of the details. You know I have to share something so here
is a new vocabulary word: ‘Exchange’ = the process of draining dialysis fluid out of
my abdomen and then refilling my abdomen with new fluid so that my body can
continue to diffuse and clean my blood efficiently. Here is another new concept: ‘Wash Hands’, what you think you know what
washing hands means? Next time to wash
your hands set a timer and make sure you keep a good lather going for 2
minutes. Then go do something for about
30 minutes and then come back and wash your hands for another 2 minutes. You don’t realize how long 2 minutes is
until you have to stand at a sink and wash your hands. Another thing we learned is that you need an
extra closet in your house if you are going to start home dialysis.
The picture below is our stack of supplies
that we get each month to keep us in stock for my exchanges.
It’s hard to tell but that’s 20+ boxes of supplies
including: dialysis solutions (three
strengths), IV pole, scale, blood pressure machine, miscellaneous cleaners,
assorted gauzes and all of the dreaded tape.
Speaking of tape I now have a new fear and recurring dream, it starts
with me waking up with sticky tape spread all over my hairy belly. Then someone comes in and decides they want
to see what’s under my tape and proceed to pry it off not so kindly. Oh wait, that’s not a dream that’s what I
have to do each night. The not so kindly
part was the dream, it does hurt a bunch to take off the tape but I can’t blame
Dana and Fred since it hurts just as much when I do it myself. Our
training consisted of learning how to safely give me exchanges which will
happen 4 times a day for the next few weeks.
That’s why we need all the
supplies. It takes a lot of stuff to do
this 4 times a day and we will get a new shipment every month. Sorry Dad but at the moment your bedroom in
our house is serving as the storage room at the moment. A key part of the training was learning
how to avoid getting Peritonitis, which is basically any nasty germ getting
into my abdominal cavity and running wild. They say it’s very painful and will likely
send me to this hospital if I ever get it.
That’s where the washing hands correctly comes in along with keeping my
exchange area clean and following the proper procedure so you don’t get
contaminated between washing hands and doing the critical connection with the
tube in my belly that I have to tape all the time. Dana has transformed a corner of our bedroom
to be my 4 times a day (except when at work) exchange area where we have all my
supplies and my IV pole and we can shut the door and stay clean. I think it’s going to work out great. We had a very slight hiccup when it came to
figuring out how to do the noon exchange since I will be at work. Our nurses told stories of people doing
exchanges in their cars sitting still and doing it while also going down the
road which sure doesn’t seem very safe or clean to me. But here is where I give a huge thanks to
SPP and my boss Kim and our facilities manager Chuck. I initially asked if it was possible to reserve
some time in a room in our new building that we have dedicated to our nursing
mothers called our Lactation room. Kim
and Chuck did way better than that and actually gave me my own private room
with two locked doors and a sink with cabinets and a comfy chair and work
table. We have a room in our new
building that is designated as a medical exam room but we haven’t hired a nurse
yet. So Chuck gave me access and hooked
me up with furniture and paper towels and was very helpful with whatever I
needed. I can’t thank them enough for
taking this one problem away so I don’t have to worry about it.
I also want to give a HUGE thanks to my co-worker Eric for covering for me over the last few weeks. Especially these last couple of weeks when I've been out half of every day. He's covering for me tomorrow during my transplant evaluation as well. It helps my state of mind tremendously knowing that I'm not leaving SPP in a lurch while I'm out. Thanks Eric you are truly a 'Stand Up' guy.
I also want to give a HUGE thanks to my co-worker Eric for covering for me over the last few weeks. Especially these last couple of weeks when I've been out half of every day. He's covering for me tomorrow during my transplant evaluation as well. It helps my state of mind tremendously knowing that I'm not leaving SPP in a lurch while I'm out. Thanks Eric you are truly a 'Stand Up' guy.
Below are a couple pictures of my new
noon-time exchange room and caution sign that Chuck put together for me.
That’s what has been happening for the last 12 days. I am fully recovered and my surgery site is
healing very well under the expert care of Nurse Dana. I’m almost looking forward to starting
dialysis to see if it will give me more energy and help me sleep better at
night. Stay tuned for that.
What’s next ???
Our next steps obviously will be dialysis which will start
on the day after Christmas (12/26). We
are taking a few days off to visit Dad and my sister in Fort Smith and then
will come back home for Christmas to start our routine. We initially were going to transport 4 days
of supplies up to Fort Smith to start there but our medical team said to just
take a break since I wasn’t in dire straits and could easily make it through a
week without any exchanges. But once we
start we won’t take any more breaks.
So we look forward to Nurse Fred coming to our home to check out our
setup and to give us approval to start dialysis on the 26th, Merry
Christmas.
Even before the 26th rolls around we have another
big event that we are anxious to get started.
On this Thursday (12/20) we are scheduled to attend the UAMS Transplant
Evaluation day, again. If you are a
long time reader of my blog you will remember that in June of 2011 we went through
this same process (http://diaryofakidney.blogspot.com/2011/06/evaluation-day-update-1.html)
and it ended up that my kidneys miraculously improved to the point that the
transplant team rejected us and told us to come back when my kidneys fell back
below the 20% functioning threshold.
Well, we are obviously below that threshold so we are headed back to go
through what I assume will be the same process as last time. My Nephrologist said that some of the tests
they did last time might still be good so I don’t have to take those tests
again. We’ll see about that. It was a good experience last time and I’m
not nervous about the process at all.
I hope we get the same coordinator as last time as we really liked
her. We have already met with the
Nephrologist previously and the team’s surgeon happens to be the one who put
this tube in my belly. So, it feels a
little bit like going home.
I think I have shared enough to give you a feeling of how it’s
going. I can’t complain about much,
everyone we have dealt with has been very kind and Dana is a trooper to keep up
with all of this stuff. I appreciate her
very very much.
If anything comes up during the transplant evaluation I will
add a short update but if it’s just like the last time I might wait until after
Christmas to update next time.
Thanks to everyone for their kind notes and emails and
comments, it really helps more than I can express.
We wish everyone a very Merry Christmas …. Stay Tuned …
Friday, December 7, 2012
Learning ... and ABs
I think that I will start this post with some quotes I found about learning. I'll catch you up on all that has transpired in the last 11 days but my current state is one of learning. I am up to my eye balls in new terms and new procedures and new experiences. And it's only going to get worse (or better depending on your love of learning) over the next couple of weeks. So to psych myself up for all of my upcoming new knowledge I dug up some quotes for myself that I though were profound to my situation.
This first one speaks to my situation directly: "I am always ready to learn although I do not always like being taught." ~Winston Churchill. What I am learning is interesting but my preference is to not have to learn it at all.
"Anyone who stops learning is old, whether at twenty or eighty." ~Henry Ford. I have felt pretty old in the last few days with all the aches and pains. I have also noticed that most of those people that I run into lately have been ... well there's no soft way to say it ... they've been pretty old. I guess I'm exceptional in that I didn't want to wait until I was eighty to learn what I'm learning at 45. So I guess I'm prolonging old age with all of my new learning. I'm going to think about it that way to make myself feel better.
"Learning is like rowing upstream: not to advance is to drop back." ~Chinese Proverb. Lastly, I thought this quote was profound in that at times lately it has seemed like I was being swept away without control by the speed at which things were all of the sudden happening. While in reality my doctors were trying to be proactive and 'row upstream' so as not to get in a bad situation that we would have a harder time dealing with. In fact, in a conversation with my doctor today he mentioned another of his patients who went in the same time last week to have the same surgery I did and chose not to have it, but then became ill. He's still in the hospital having his work done.
Okay, enough deep thinking ... I know you just want the gory details. Much has happened since my last post so try to keep up. I will throw in some random 'Did you knows' along the way when I think of something I learned.
Thursday (11/29) afternoon: I had some good distraction from my nervousness on Thursday night since Ben had a basketball game at school. They/he played awesome and beat our across-town rivals Ridgeroad. Right before I got to the game I got my call from my resident doctor that we met with on Tuesday and he said to show up around 10:00 the next morning but wasn't sure on the details and suggested we just wait on the official word from someone else at UAMS. In the middle of the game Dana got the 'official' call from UAMS and bless her heart she has some hearing loss so she was fairly confident at what she heard which was to show up at 7:00 the next morning because we had to talk to the anesthesiologist which apparently might take 3 hours (insert sarcastic look here)? Oh well, we are obedient people so Dana got to work getting rides to school for the boys and pickups from school in case we were late getting done (thank goodness she did). So, that evening I got a little emotional (I get it from my Dad, who right this second is crying). You have to understand that a procedure very similar to what I was about to have done, triggered the complications that would cause my Mother to pass away. So that made me nervous. Also I had attended two funerals in the past 6 days, one for a friend and co-worker who lost his battle with Leukemia and one for a co-worker who lost his wife during what was supposed to be a simple surgery. So that made me nervous. So I made a point to catch each of my boys to tell them I loved them and how proud I was of each of them. That's all I said and in my mind I figured if anything bad happened then that would make them feel better. I told Dana what I did and she got mad at me and told me that I wasn't allowed to give her 'the goodbye' speech as I'm being rolled away to surgery. Sorry I was emotional, give me a break. It all seemed like the right thing to do at the time. Well Thursday was over and I was spent so I went to bed and surprisingly slept better than normal. I give credit to my prayer warriors out there helping calm my nerves.
Friday morning: So in order to get to the hospital by 7:00 we had to get up early. I couldn't eat or drink (this will be important for later) so all I had to do was take my last real hot shower for what I would learn will be two weeks. Dana is quick to get ready in the morning so we were out the door in plenty of time. We had our iPads for entertainment and Dana had scheduled a friend to come sit with her during surgery. It also just happened that my sister who lives in Van Buren was scheduled at UAMS that same morning for a checkup with her doctors, so we would end up visiting with her and Rich (I don't believe on coincidences). I'm going to preface this next section saying that I love my wife very much but I am the one with more patience. We are both pretty laid back but Dana has a hard time just sitting still waiting on pretty much anything. Think about that when I tell you that we waited in our little curtain room for 7 hours before any activity toward surgery. We showed up at 7:00 as told. They prepped us and you could tell they were surprised that we were already here. After getting changed into my awesome hospital gown the nurse came in and asked why we were here 3 hours early. We said that someone called and told us that, this is where Dana starts doubting that she heard correctly, I'm sure she heard right but they just told us wrong. So we got permission to get up and walk around the hospital which we did for a while eventually getting back onto my bed by 10:00. We talked with anesthesiology which took all of about 15 minutes (see reference to sarcastic look in previous paragraph). Then we waited for 4 more hours. We had a good visit from Dr. Shaddox and soon after that my sister and brother-in-law showed up to help distract us/Dana. They stood there with us for a few hours but eventually had to head home. The doctors did eventually come around 2:00 and added something to my IV ba ...........(3 hours pass) ........ then I remember Dana coming in and dressing me and helping me fall into a wheelchair. I remember the person in the elevator coughing on me and how cold it was outside waiting for Dana to come up with the car. I vividly remember Dana hitting the mother of all potholes (it had to be 2 feet deep) and from then on I remember only when I was asked to move which hurt a bunch. I remember Paul waiting at home to help me up the stairs, and mentioning that we should be video taping this. I'm curious why he would want to relive me staggering up the stairs. I was more awake than I thought I would be, it could be partly because my gut hurt and it could be that my legs would cramp up anytime I tried to use them (that's what happens when you don't drink for 20 hours straight). So there you go, it was a long day of waiting and when it was all done I brought home a souvenir of a rubber tube and some good pain pills.
Saturday, Sunday: Saturday and Sunday were a blur of sleeping, drinking (trying to avoid cramping) and avoiding anything that requires the use of my ABs. It's very hard to describe, but, it literally felt like I did 10,000 sit-ups and my ABs just couldn't do anymore. Did you know that you use your ABs for almost every single body movement?! This was the beginning of my new learning experience. I have come a long way in a week but I still can't bend over to tie my shoes. I have to bring my foot to my hands. Did you know that when Doctors say they will use camera's to do the surgery that it doesn't mean there will be less pain afterwards, it just means they won't stick their whole arm in your stomach. I ended up with 4 holes, 3 for the instruments (camera, light, vacuum cleaner, cup holder, etc.) and one for the tube. They all go straight through my ABs which account for how sore I am. By Sunday evening I had figured out how to roll out of bed and how to use the bathroom and was generally self supportive. By this time the dressing around my holes was grossing Dana out and she wanted to pop the protective plastic and drain all the fluid that had pooled up. I held her off of that bad idea, but it just so happened that the fluid found a leak hole on it's own and it got drained after all.
Monday: I had good intentions of going to work on Monday but with needing to get my dressing changed and the thought of putting on a seat belt making me cringe I decided to work from home. That afternoon I got to meet Fred, my new dialysis nurse, and get my bandages changed. I like Fred a lot and he will be the source of much of my learning. Did you know that it takes 27 hours of training to learn how to safely hook up a dialysis drain and fill bag at home? Dana and I want to reduce that down since that translates to 9 out of the next 10 days for 3 hours each day. My brain will be full when we are done.
Tuesday-Friday. Did you know that when you have surgery around your lower digestive tract they generally just shut down? I'll spare you the details but I'll just give a shout-out to Davi for the delivery of Pear Juice. I'm generally back to normal now. I went to work on Thursday and today for as long as I could stand and then I just have to lay flat and rest my ABs because they are worn out. The worst part is the jostling on the drive to and from work.
Friday Morning. I want back to see Fred at the home dialysis clinic this morning. He removed my dressing and said that everything is looking good. The exit point for the tube is still red but that's to be expected. I have one hole that looks to have broken open that we will be doctoring with neosporin and a bandaid during tonight's dressing change (yes daily). Dana, my beautiful caretaker, learned how to patch me back up and she did awesome, she looked like she was having second thoughts but she did great. We also learned today that mostly what we though home dialysis meant was incorrect. We thought that we would do dialysis while I was asleep. That is one type but that's not where we start. We are learning that I will do 'Manual Peritoneal Dialysis' 4 times a day, awake, sitting up at home or wherever I want to drag all of our supplies. We also learned that we need a storage shed in our bedroom to house all of these supplies. So we get to do some redecorating to make up my little dialysis corner. I'm looking for a spot at work where I can do my 'exchange', so I'll let you know if I find one. I might just have to drive home for lunch.
So what's next? Starting on Tuesday we visit every day with Fred for 3 hours at a time learning how to do our home dialysis. The goal being that we are trained and approved after our home visit to do our own dialysis by Christmas.
Thanks to everyone for all of you cards and emails and texts and prayers, they all make a huge difference.
Stay Tuned ...
This first one speaks to my situation directly: "I am always ready to learn although I do not always like being taught." ~Winston Churchill. What I am learning is interesting but my preference is to not have to learn it at all.
"Anyone who stops learning is old, whether at twenty or eighty." ~Henry Ford. I have felt pretty old in the last few days with all the aches and pains. I have also noticed that most of those people that I run into lately have been ... well there's no soft way to say it ... they've been pretty old. I guess I'm exceptional in that I didn't want to wait until I was eighty to learn what I'm learning at 45. So I guess I'm prolonging old age with all of my new learning. I'm going to think about it that way to make myself feel better.
"Learning is like rowing upstream: not to advance is to drop back." ~Chinese Proverb. Lastly, I thought this quote was profound in that at times lately it has seemed like I was being swept away without control by the speed at which things were all of the sudden happening. While in reality my doctors were trying to be proactive and 'row upstream' so as not to get in a bad situation that we would have a harder time dealing with. In fact, in a conversation with my doctor today he mentioned another of his patients who went in the same time last week to have the same surgery I did and chose not to have it, but then became ill. He's still in the hospital having his work done.
Okay, enough deep thinking ... I know you just want the gory details. Much has happened since my last post so try to keep up. I will throw in some random 'Did you knows' along the way when I think of something I learned.
Thursday (11/29) afternoon: I had some good distraction from my nervousness on Thursday night since Ben had a basketball game at school. They/he played awesome and beat our across-town rivals Ridgeroad. Right before I got to the game I got my call from my resident doctor that we met with on Tuesday and he said to show up around 10:00 the next morning but wasn't sure on the details and suggested we just wait on the official word from someone else at UAMS. In the middle of the game Dana got the 'official' call from UAMS and bless her heart she has some hearing loss so she was fairly confident at what she heard which was to show up at 7:00 the next morning because we had to talk to the anesthesiologist which apparently might take 3 hours (insert sarcastic look here)? Oh well, we are obedient people so Dana got to work getting rides to school for the boys and pickups from school in case we were late getting done (thank goodness she did). So, that evening I got a little emotional (I get it from my Dad, who right this second is crying). You have to understand that a procedure very similar to what I was about to have done, triggered the complications that would cause my Mother to pass away. So that made me nervous. Also I had attended two funerals in the past 6 days, one for a friend and co-worker who lost his battle with Leukemia and one for a co-worker who lost his wife during what was supposed to be a simple surgery. So that made me nervous. So I made a point to catch each of my boys to tell them I loved them and how proud I was of each of them. That's all I said and in my mind I figured if anything bad happened then that would make them feel better. I told Dana what I did and she got mad at me and told me that I wasn't allowed to give her 'the goodbye' speech as I'm being rolled away to surgery. Sorry I was emotional, give me a break. It all seemed like the right thing to do at the time. Well Thursday was over and I was spent so I went to bed and surprisingly slept better than normal. I give credit to my prayer warriors out there helping calm my nerves.
Friday morning: So in order to get to the hospital by 7:00 we had to get up early. I couldn't eat or drink (this will be important for later) so all I had to do was take my last real hot shower for what I would learn will be two weeks. Dana is quick to get ready in the morning so we were out the door in plenty of time. We had our iPads for entertainment and Dana had scheduled a friend to come sit with her during surgery. It also just happened that my sister who lives in Van Buren was scheduled at UAMS that same morning for a checkup with her doctors, so we would end up visiting with her and Rich (I don't believe on coincidences). I'm going to preface this next section saying that I love my wife very much but I am the one with more patience. We are both pretty laid back but Dana has a hard time just sitting still waiting on pretty much anything. Think about that when I tell you that we waited in our little curtain room for 7 hours before any activity toward surgery. We showed up at 7:00 as told. They prepped us and you could tell they were surprised that we were already here. After getting changed into my awesome hospital gown the nurse came in and asked why we were here 3 hours early. We said that someone called and told us that, this is where Dana starts doubting that she heard correctly, I'm sure she heard right but they just told us wrong. So we got permission to get up and walk around the hospital which we did for a while eventually getting back onto my bed by 10:00. We talked with anesthesiology which took all of about 15 minutes (see reference to sarcastic look in previous paragraph). Then we waited for 4 more hours. We had a good visit from Dr. Shaddox and soon after that my sister and brother-in-law showed up to help distract us/Dana. They stood there with us for a few hours but eventually had to head home. The doctors did eventually come around 2:00 and added something to my IV ba ...........(3 hours pass) ........ then I remember Dana coming in and dressing me and helping me fall into a wheelchair. I remember the person in the elevator coughing on me and how cold it was outside waiting for Dana to come up with the car. I vividly remember Dana hitting the mother of all potholes (it had to be 2 feet deep) and from then on I remember only when I was asked to move which hurt a bunch. I remember Paul waiting at home to help me up the stairs, and mentioning that we should be video taping this. I'm curious why he would want to relive me staggering up the stairs. I was more awake than I thought I would be, it could be partly because my gut hurt and it could be that my legs would cramp up anytime I tried to use them (that's what happens when you don't drink for 20 hours straight). So there you go, it was a long day of waiting and when it was all done I brought home a souvenir of a rubber tube and some good pain pills.
Saturday, Sunday: Saturday and Sunday were a blur of sleeping, drinking (trying to avoid cramping) and avoiding anything that requires the use of my ABs. It's very hard to describe, but, it literally felt like I did 10,000 sit-ups and my ABs just couldn't do anymore. Did you know that you use your ABs for almost every single body movement?! This was the beginning of my new learning experience. I have come a long way in a week but I still can't bend over to tie my shoes. I have to bring my foot to my hands. Did you know that when Doctors say they will use camera's to do the surgery that it doesn't mean there will be less pain afterwards, it just means they won't stick their whole arm in your stomach. I ended up with 4 holes, 3 for the instruments (camera, light, vacuum cleaner, cup holder, etc.) and one for the tube. They all go straight through my ABs which account for how sore I am. By Sunday evening I had figured out how to roll out of bed and how to use the bathroom and was generally self supportive. By this time the dressing around my holes was grossing Dana out and she wanted to pop the protective plastic and drain all the fluid that had pooled up. I held her off of that bad idea, but it just so happened that the fluid found a leak hole on it's own and it got drained after all.
Monday: I had good intentions of going to work on Monday but with needing to get my dressing changed and the thought of putting on a seat belt making me cringe I decided to work from home. That afternoon I got to meet Fred, my new dialysis nurse, and get my bandages changed. I like Fred a lot and he will be the source of much of my learning. Did you know that it takes 27 hours of training to learn how to safely hook up a dialysis drain and fill bag at home? Dana and I want to reduce that down since that translates to 9 out of the next 10 days for 3 hours each day. My brain will be full when we are done.
Tuesday-Friday. Did you know that when you have surgery around your lower digestive tract they generally just shut down? I'll spare you the details but I'll just give a shout-out to Davi for the delivery of Pear Juice. I'm generally back to normal now. I went to work on Thursday and today for as long as I could stand and then I just have to lay flat and rest my ABs because they are worn out. The worst part is the jostling on the drive to and from work.
Friday Morning. I want back to see Fred at the home dialysis clinic this morning. He removed my dressing and said that everything is looking good. The exit point for the tube is still red but that's to be expected. I have one hole that looks to have broken open that we will be doctoring with neosporin and a bandaid during tonight's dressing change (yes daily). Dana, my beautiful caretaker, learned how to patch me back up and she did awesome, she looked like she was having second thoughts but she did great. We also learned today that mostly what we though home dialysis meant was incorrect. We thought that we would do dialysis while I was asleep. That is one type but that's not where we start. We are learning that I will do 'Manual Peritoneal Dialysis' 4 times a day, awake, sitting up at home or wherever I want to drag all of our supplies. We also learned that we need a storage shed in our bedroom to house all of these supplies. So we get to do some redecorating to make up my little dialysis corner. I'm looking for a spot at work where I can do my 'exchange', so I'll let you know if I find one. I might just have to drive home for lunch.
So what's next? Starting on Tuesday we visit every day with Fred for 3 hours at a time learning how to do our home dialysis. The goal being that we are trained and approved after our home visit to do our own dialysis by Christmas.
Thanks to everyone for all of you cards and emails and texts and prayers, they all make a huge difference.
Stay Tuned ...
Tuesday, November 27, 2012
Traction...
Lets start this post with a quiz. Who knows the definition of the word: traction. The dictionary says this is the definition: the condition of being drawn or pulled. I would add my own which is: the act of making progress. Both of these are pertinent to my current situation. I'll explain everything in a second.
First off, I would like to apologize for not being a consistent writer. I last posted in April and as far as my health goes there hasn't been much activity until recently.
We have been busy with life and the boys. Paul is now a senior and we are checking off all of the 'lasts': last golf match, last cross country meet, last home coming, last football game. Jake is a freshman and is logging his share of firsts: first home coming, first high school baseball practice, first high school football. Ben is starting middle school with his own share of firsts: first football, first school basketball, girls... Dana and I are just trying to keep up.
I know you aren't reading this for the family update so I will catch you up on my kidney status.
Since April my kidneys have continued to deteriorate. My symptoms have increased in number and slightly in intensity. The summer was hard because I have learned that my kidneys are key in helping me cool off and keeping my hydration level constant. Who knew...? So I did my best to coach baseball and watch the boys in all their activities in the heat. It would make me pretty tired and if I pushed it I would get dizzy and have to take a break. I got good at seeing it coming and making sure I rested before it got too bad. When the weather started to get cooler I rejoiced knowing that I wouldn't need to sweat as much and would have more energy, which has been true. The ironic part to my story is that I am also turning anemic. If you don't know what anemic means, it means that my blood, which should carry a lot of oxygen rich red blood cells, can't carry enough red blood cells for some reason. My reason is that my blood is full of other stuff that isn't being cleaned out. I say it's ironic because I was welcoming the cold weather but when it arrived I realized that my anemia also meant that those red blood cells kept me warm. So I went from not being able to cool off to not being able to warm up. I can't get a break. Basically, any circulation based issue I am blaming on my anemia. I have always been a nervous talker ( true introvert ), but now my nerves have turned into severe shaking that I can't control. No more presentations or teaching classes for me, darn. I also have restless legs which bug me when trying to get to sleep. My hands and feet and the top of my bald head are always cold. I still get tired and dizzy occasionally if I attempt to physically work too hard. I've learned my limit so don't think bad of me if you see me sitting while everyone else is working hard, I recover fairly quickly. My most annoying symptom is more of a restriction. Dana has a friend that turns out to be a dialysis nutritionist and has shared a lot of good information on what I should eat and disappointingly what I should avoid. I knew some of them, like too much protein and too much calcium and too much caffeine. But when she came home recently and informed me that I should cut out my favorite thing I almost wanted to give up. She learned that any phosphorous that doesn't get cleaned by my kidneys could calcify in my veins. Do you happen to know what contains a lot of phosphorous? Dr. Pepper!!!! I can't believe it. Lord, what have I done to deserve this kind of torture?
Sorry, enough whining... (Sniff)
So why is this post called traction? As of today my situation is making progress but at the same time I'm being pulled to do something I didn't want to do. Wait, I am getting ahead of myself.
I talked about family, symptoms and I should talk for a second on the actual state of my kidneys. As of today my kidney function is sitting at 17%. 15% is considered kidney failure. That seems dire but realistically it isn't that cut and dry, it really depends on how you feel. I generally feel ok when I'm not too hot, too cold, nervous, don't over exert myself and avoid Dr Pepper. So while its time to make some progress towards the goal of getting a transplant, it is also time to get pulled into plan B since transplant could still be a ways away.
Let's talk about transplants. We have, again, been referred to the UAMS transplant team to get evaluated and hopefully listed on the national transplant list. This is important because if they don't approve of putting me on the list then they basically don't think is worth anyone's time to work towards a transplant. No list, no transplant. I will post an update when I hear more about this.
Transplant is plan A. Plan B and the only current option since I'm close to failure is to get ready for dialysis. There are two types and I'm not going to go in depth on both. In my mind there is only one type which is the type that allows me to stay away from the dialysis center for 12 hours a week attached to a machine for a whole afternoon. Peritoneal dialysis is my choice. It is frequently called home dialysis because I can do it at home while I sleep. Besides the advantage of doing it at home, I will do it every night which translates to more consistent blood cleansing. More consistency means that I shouldn't have any real bad days because of toxin buildup. In order to be able to do this type of dialysis I will need a semi-permanent tube inserted into my abdomen which will be how I connect to the machine at night. If you are curious how that works just google it, there are some good diagrams that explain it, or find your nearest high schooler and ask them how diffusion works which will be the basis for how it works. Anyway, this tube will get inserted into my belly this Friday (30th). After it heals for about a month I will be able to have clean blood for the first time in a while.
So there you go, kidneys at 17%, hot, cold, shivering when nervous, no Dr Pepper, waiting for transplant team and getting dialysis catheter on Friday.
As far as my mental state if you we're wondering. I'm glad to be talking to the transplant team. I am warming up to the dialysis option since they say it will definitely help me feel better. I'm not excited about the simple surgery to put a small tube in my belly.
I've been telling people that every day that I get to spend with my own kidneys and without help from a machine is a great day. Those days are becoming fewer but I won't dwell on that. I know God has a plan for my situation and I'm going to trust that he knows what he is doing.
Stay tuned...
First off, I would like to apologize for not being a consistent writer. I last posted in April and as far as my health goes there hasn't been much activity until recently.
We have been busy with life and the boys. Paul is now a senior and we are checking off all of the 'lasts': last golf match, last cross country meet, last home coming, last football game. Jake is a freshman and is logging his share of firsts: first home coming, first high school baseball practice, first high school football. Ben is starting middle school with his own share of firsts: first football, first school basketball, girls... Dana and I are just trying to keep up.
I know you aren't reading this for the family update so I will catch you up on my kidney status.
Since April my kidneys have continued to deteriorate. My symptoms have increased in number and slightly in intensity. The summer was hard because I have learned that my kidneys are key in helping me cool off and keeping my hydration level constant. Who knew...? So I did my best to coach baseball and watch the boys in all their activities in the heat. It would make me pretty tired and if I pushed it I would get dizzy and have to take a break. I got good at seeing it coming and making sure I rested before it got too bad. When the weather started to get cooler I rejoiced knowing that I wouldn't need to sweat as much and would have more energy, which has been true. The ironic part to my story is that I am also turning anemic. If you don't know what anemic means, it means that my blood, which should carry a lot of oxygen rich red blood cells, can't carry enough red blood cells for some reason. My reason is that my blood is full of other stuff that isn't being cleaned out. I say it's ironic because I was welcoming the cold weather but when it arrived I realized that my anemia also meant that those red blood cells kept me warm. So I went from not being able to cool off to not being able to warm up. I can't get a break. Basically, any circulation based issue I am blaming on my anemia. I have always been a nervous talker ( true introvert ), but now my nerves have turned into severe shaking that I can't control. No more presentations or teaching classes for me, darn. I also have restless legs which bug me when trying to get to sleep. My hands and feet and the top of my bald head are always cold. I still get tired and dizzy occasionally if I attempt to physically work too hard. I've learned my limit so don't think bad of me if you see me sitting while everyone else is working hard, I recover fairly quickly. My most annoying symptom is more of a restriction. Dana has a friend that turns out to be a dialysis nutritionist and has shared a lot of good information on what I should eat and disappointingly what I should avoid. I knew some of them, like too much protein and too much calcium and too much caffeine. But when she came home recently and informed me that I should cut out my favorite thing I almost wanted to give up. She learned that any phosphorous that doesn't get cleaned by my kidneys could calcify in my veins. Do you happen to know what contains a lot of phosphorous? Dr. Pepper!!!! I can't believe it. Lord, what have I done to deserve this kind of torture?
Sorry, enough whining... (Sniff)
So why is this post called traction? As of today my situation is making progress but at the same time I'm being pulled to do something I didn't want to do. Wait, I am getting ahead of myself.
I talked about family, symptoms and I should talk for a second on the actual state of my kidneys. As of today my kidney function is sitting at 17%. 15% is considered kidney failure. That seems dire but realistically it isn't that cut and dry, it really depends on how you feel. I generally feel ok when I'm not too hot, too cold, nervous, don't over exert myself and avoid Dr Pepper. So while its time to make some progress towards the goal of getting a transplant, it is also time to get pulled into plan B since transplant could still be a ways away.
Let's talk about transplants. We have, again, been referred to the UAMS transplant team to get evaluated and hopefully listed on the national transplant list. This is important because if they don't approve of putting me on the list then they basically don't think is worth anyone's time to work towards a transplant. No list, no transplant. I will post an update when I hear more about this.
Transplant is plan A. Plan B and the only current option since I'm close to failure is to get ready for dialysis. There are two types and I'm not going to go in depth on both. In my mind there is only one type which is the type that allows me to stay away from the dialysis center for 12 hours a week attached to a machine for a whole afternoon. Peritoneal dialysis is my choice. It is frequently called home dialysis because I can do it at home while I sleep. Besides the advantage of doing it at home, I will do it every night which translates to more consistent blood cleansing. More consistency means that I shouldn't have any real bad days because of toxin buildup. In order to be able to do this type of dialysis I will need a semi-permanent tube inserted into my abdomen which will be how I connect to the machine at night. If you are curious how that works just google it, there are some good diagrams that explain it, or find your nearest high schooler and ask them how diffusion works which will be the basis for how it works. Anyway, this tube will get inserted into my belly this Friday (30th). After it heals for about a month I will be able to have clean blood for the first time in a while.
So there you go, kidneys at 17%, hot, cold, shivering when nervous, no Dr Pepper, waiting for transplant team and getting dialysis catheter on Friday.
As far as my mental state if you we're wondering. I'm glad to be talking to the transplant team. I am warming up to the dialysis option since they say it will definitely help me feel better. I'm not excited about the simple surgery to put a small tube in my belly.
I've been telling people that every day that I get to spend with my own kidneys and without help from a machine is a great day. Those days are becoming fewer but I won't dwell on that. I know God has a plan for my situation and I'm going to trust that he knows what he is doing.
Stay tuned...
Wednesday, April 11, 2012
Here we go again ...
So it has been over 7 months since my last post, but that is basically because nothing has happened regarding my kidneys during that time. I got tested in December and my kidney function had dropped to around 25% which wasn't much decline. So I took a break from posting until something else changed.
So here we are, I just had my scheduled appointment yesterday with my Nephrologist. My recent blood tests show my kidney function down to 18% now which is crossing into the next category called 'Stage 4 Renal Failure'. All that means is that my time without any noticeable symptoms is over. It also means that it's time once again to think about talking to the transplant people and or the dialysis people. We aren't quite ready for that since we are going to adjust one of my meds to see if that helps, but are still anticipating having to talk to them in the next few weeks.
So what does this all mean? Well it means that my kidneys are weak enough that when something effects them to where they have to work real hard, I will definitely notice it (lethargic, tired, short term memory loss, itchy skin, metallic taste in my mouth, etc.). I had my first, what my doctor calls, 'Bad' day on Monday where I just felt beat down for no apparent reason. My doctor says that almost anything could trigger a 'Bad' day from an infection to the flu to exhaustion. The more it happens, the more I will want to consider dialysis to clean my blood up. I'm no where near being ready for that just yet, but it's on my mind.
What it all really means is that my plans for going to Ecuador this summer with the youth choir are cancelled. It is a bad idea to be in a foreign country with the potential to get an infection or bug that will trigger a 'Bad' day or week. Plus, who knows whether I will need dialysis in July or not, I'm guessing not.
So that's all I know for now. I'm pretty disappointed in not getting to go to Ecuador, but that's the hand I've been dealt and I'm sure there's a reason for me not going so I'm fine with it.
Until next time ... Stay Tuned ...
So here we are, I just had my scheduled appointment yesterday with my Nephrologist. My recent blood tests show my kidney function down to 18% now which is crossing into the next category called 'Stage 4 Renal Failure'. All that means is that my time without any noticeable symptoms is over. It also means that it's time once again to think about talking to the transplant people and or the dialysis people. We aren't quite ready for that since we are going to adjust one of my meds to see if that helps, but are still anticipating having to talk to them in the next few weeks.
So what does this all mean? Well it means that my kidneys are weak enough that when something effects them to where they have to work real hard, I will definitely notice it (lethargic, tired, short term memory loss, itchy skin, metallic taste in my mouth, etc.). I had my first, what my doctor calls, 'Bad' day on Monday where I just felt beat down for no apparent reason. My doctor says that almost anything could trigger a 'Bad' day from an infection to the flu to exhaustion. The more it happens, the more I will want to consider dialysis to clean my blood up. I'm no where near being ready for that just yet, but it's on my mind.
What it all really means is that my plans for going to Ecuador this summer with the youth choir are cancelled. It is a bad idea to be in a foreign country with the potential to get an infection or bug that will trigger a 'Bad' day or week. Plus, who knows whether I will need dialysis in July or not, I'm guessing not.
So that's all I know for now. I'm pretty disappointed in not getting to go to Ecuador, but that's the hand I've been dealt and I'm sure there's a reason for me not going so I'm fine with it.
Until next time ... Stay Tuned ...
Subscribe to:
Posts (Atom)