Saturday, May 5, 2018
I am feeling much, MUCH better after my nephrologist changed a bunch of my meds around on Wednesday. My blood pressure was 121/69, which would be pretty darn close to perfect if that wasn't with several medications that were causing the fogginess and overall blah feeling from my last post (I believe some of that blah was a combination of meds, vaccines, exhaustion, etc.). I am still battling with very little appetite and some nausea but "knock on wood" haven't actually vomited since the med change. All of my other numbers have started to really reflect my failing kidney (I knew that going into clinic - I can certainly feel my body struggling). My nephrologist wants to see me again next month (instead of every three months) to check in on the changes to my meds and we will be keeping a close eye on everything to make sure October is soon enough to start dialysis. I will be getting my fistula in July but it takes time to become useable, so we would be looking at October to start dialysis. If I need dialysis before October I will get a catheter put in temporarily until the fistula becomes useable. There is also the risk that the fistula won't take, fingers crossed this doesn't happen, but if it does, I will certainly need a temporary catheter until we can make the fistula work.
Overall, it was a good clinic visit and I am very excited to be feeling more like myself. It has been incredibly helpful to have some summer weather (although, I learned the hard way that one of the side effects from some of my meds is I am more vulnerable to sun exposure - I am rather lobster like after spending the afternoon in the sun). My health always improves slightly in the summer and I am SUPER excited to have some room to grow a bit of a garden this year; it will be a nice little project over the summer!
Thursday, April 26, 2018
I have my regular nephrologist appointment on Wednesday. I am hoping I am able to snap out of this funk before then, but if this is kidney related it could be my new normal until I start dialysis. If that is the cause I am going to have to start to take some regular doses of gravol to at least attempt to get a meal in so I don't feel like I'm going to pass out every time I try to stand up.
In the mean time I am going to attempt to enjoy that beautiful sunshine that is out there and take it as easy as I can.
Monday, April 16, 2018
Today (yes, the whole day) was spent at the hospital going through a bunch of different appointments to prepare for transplant (when it eventually comes). I started off with twelve tubes of bloodwork and then met briefly with the social worker, transplant recipient coordinator, anesthesiologist and lastly, the surgeon. Overall, I didn't learn anything I didn't know already. I was very impressed by the last two appointments, the anesthesiologist acknowledged that I have already been through this process a few times and promised to keep me asleep as long as I needed to be asleep and then wake me up when it's time to wake up - that's pretty much all I can ask for! The surgeon that I met was different from the one I had during my second transplant at UH, but equally as wonderful. Based off of the positioning of my previous two transplants, they are going to put this next one on my right side (the same side as my first transplant). They will have to do a mid-line insertion, so right now the middle. The plan is to keep all of my previous kidney's in - they act as a buffer against rejection. Basically, my body is used to fighting against the "foreign object" (my previous two kidneys), they hope is that if you keep them in, my body will continue to just fight them and leave my new kidney alone. If they take out my old, unplugged kidneys it will put more attention on the new kidney and put it at a higher risk for rejection.
I am still going to be challenging to match but there are a lot of programs in place to help people like me find good matches. My kidney will most likely come from a deceased individual from a different province, but a live donor is still our first preference if we are able to find one, or do a swap, or something along those lines.
Overall it was a long day, but not too bad. Mainly I'm frustrated that I had to take a whole day off of work (unpaid - hello self-employed) in order to talk to people about things I already know. I still have to meet with the transplant nephrologist and get a CT scan for them to see what exactly is going on with my insides to figure out where to put my new kidney. On a plus side, I got to pop into Wes' office and meet the second cutest little puppy! Not a bad way to kill some time between appointments.
Wednesday, March 28, 2018
Oh my God I am exhausted. I am like a whole other level of exhausted I didn't know existed. Part of it is I need a break from work (I get four days off for Easter), but really it's just the fact that I have a failing organ and my body is struggling. I have to say my doctor timed it perfectly. I am now at the stage where I am so tired I won't put up a fight about dialysis anymore. I'm not going to go as far to say I'm looking forward to it (cause I am certainly not) but I am looking forward to having a bit more energy. It's incredibly frustrating when activities that used to be the highlight of my day now very much feel like a chore (walking Harlow, keeping the house tidy, working, and even some days going to the barn). All of those things make up my life and make me HAPPY - unfortunately, a lot of the things that make me happy are ACTIVITIES and require movement and energy, it sucks having to pick and choose certain things each day because I only have energy for two big things. Work is typically one of them and then I can pick either cleaning something, or going to the barn (any guesses on which one wins?).
Overall, I'm still trucking through everything. I have a lot of not so bad days where I can get through everything and still feel like a living person at the end of the day, but I can definitely feel a shift: a decline in energy, I'm more irritable, appetite is iffy, etc. All reminders that my reality is I have a failing kidney and it's not going to get better on it's own. I'm just doing the best that I can to take it day by day. I'm looking forward to the nicer weather when I can sit outside and enjoy the sunshine. It's been a very long winter.
Saturday, February 24, 2018
I recently did an interview with CBC talking about my situation and organ donation. I had a few people mention that I have a tendency of making it sound not as bad as it really is. Itʼs true, I know I do that. I donʼt like pity - I donʼt know how to handle it, and to be honest, while my situation absolutely sucks and is terrifying, sulking isnʼt going to get me anywhere. So, yes I am angry and terrified but Iʼm much better at doing something about it and moving forward than I am playing the victim. Plus, most people don't actually know what to say to me when I do talk about it (really, there isn't anything you can say) and it's awkward for everyone (I tend to find human communication a little awkward to begin with, so throw some pity in there and I'm really uncomfortable). With all of that being said, I'm always happy to answer questions and appreciate everyones support and positive vibes.
On another note I have made the final decision to go ahead with the fistula. I went back and forth between the fistula and the catheter, and after talking to the most wonderful, patient nurse about my options (again), the fistula is, unfortunately the better of the two super crappy options. The risk factors and longevity of the catheter pose too high of a risk. There is a risk for infection, blood clots and some major complications if one, or both of those things happen. She did mention that if it is absolutely vital for my wellbeing, they can reverse the fistula once I get a transplant. The idea that it wonʼt be in my arm forever is enough to make it bearable. At least with the fistula, I don't have to modify much in my life - showering, riding, working out all stays the same. I have a surgery date set for mid July.
Sunday, February 11, 2018
After talking to a couple of resourceful clients and doing a bit more research I have started to reconsider the catheter option for dialysis. I don't know if I can mentally handle having the fistula in my arm forever. If that was my only option, sure I'd make it work but between the timeline on the fistula and the two needles three times a week, it's looking like a bigger commitment. There is a lot I don't know about the catheter still. When I went to the consultation I already had it in my head that I was getting a fistula, so I didn't listen as well as I should have to the catheter-talk. I made another appointment with the nurse to do a do-over appointment to get all of the information on both options again in order to reassess properly.
Wednesday, February 7, 2018
First we went over a few things about the fistula that I didn't know:
1) THEY F*CKING LEAVE IT IN YOUR ARM - FOREVER! I have NO idea why no one has told me this yet! Once it's there - IT STAYS! I assumed (never, never assume) that once I got the transplant, they would put my arm back to the way they found it. This is not correct. They do (of course) have good reasons for it:
a) They don't necessarily insert anything to create the fistula, they simply merge a vein and an artery to create an access point for dialysis, so it's not like they can go in and take out the tubing, or reverse it.
b) There is always the chance that I will need dialysis again - even if I did get the transplant, there is always the risk of rejecting the kidney, in which case I would need dialysis again; and/or, eventually in another 10-15 years when the 3rd graft (transplant) goes kaput I will already have that access instead of having to go in again to make another one.
2) In order to hook up my fistula to the dialysis machine (THREE TIMES A WEEK), they poke me with two, TWO needles into the fistula. Two needles into my fistula...three times per week...potentially for....years - SUPER! HONESTLY?! That SUCKS! Think of the scar tissue that is going to build up in my poor arm!
I should mention that at this point in the consultation I had this really funky giggle going on, in addition to actually saying the word f*ck a few times to my surgeon - she may think I'm insane but kept her judgement to herself nicely.
It was also at this point in the consultation that I asked her why on earth anyone would pick a fistula?! It was at this point that she went over a few points about the catheter option:
1) The catheter gets inserted into the chest and connects directly to your heart (umm, yikes).
2) The risk of infection is higher because it sticks out of the skin.
3) YOU CAN'T SHOWER, or go swimming, or get it wet (so hello sponge baths...)
4) Sometimes they can close off and you have to go to the other side, this becomes dangerous to loose blood flow so close to your heart)
5) Scar tissue in the area seems like a bad idea to me
These are my two options. Seriously. Seriously. Like honestly. Snake in my arm for the rest of my life, or not showering, for you know a few years. Getting poked in my arm twice per week, or not riding. So, as absolutely ridiculous as it is that THESE are my ONLY two options, the fistula is still a clear winner in my mind (if you can even call it that).
There were lots of tears (and evidently donuts...) yesterday, but I'm slowly working through yet another mental setback. I was saying to my mom today I really wish they had just told me ALL of the bad news at once so I had time to wrap my brain around it and get over it. I feel like every time I get myself pumped up about needing to do this they tell me something else that is just brutal and I have to get myself back up again.
My doctors have been great about coordinating the fistula surgery with my schedule. It will be at some point between June-August. My plan is to take that week off work and take my dog up to my Aunt & Uncles place to recover by the lake - might as well enjoy the forced time off.
hey Hoits - hope you don't mind the self invite - Harlow & I (and maybe Wes & a sister) will see you then! ;)
Wednesday, January 31, 2018
I hear a lot of "why me" comments throughout the day. From clients, from friends. Inconvenient, sometimes earth shattering things come up in their life and there is always some form of why me?
In my opinion, there are two main categories of why me:
1) I like to refer to the first one (and unfortunately, usually the most common) as "fuck me, this can't be happening to ME".
2) Why Me? What is it I am supposed to learn from this? How come out of all of the people in the world, this particular circumstance is occurring in my life? I am not suggesting that our entire lives are mapped out for us, I strongly believe you make your own outcome - however; I also strongly believe things do happen for a reason and if you are paying attention there is an incredible opportunity to grow into a much better human being.
Let's go back to the first version of "this can't be happening to me" for a moment - you see the problem with that statement is it implies that you would prefer that situation to happen to someone else.
My situation SUCKS - big time, but I would NEVER, EVER, EVER wish this upon someone else. My situation SUCKS, but I can handle it.
I don't want to have to go through with another transplant, or dialysis, or any of that shit, but I know I can do it and I will come out the other end a stronger person because of it. For some reason, I am supposed to do this
I am open to growth; I am open to support;
& I am open to making the best out of a very inconvenient reality.
"I know God won't give me anything I can't handle. I just wish he didn't trust me so much"
- Mother Teresa
Sunday, January 28, 2018
For those of you who have been asking how exactly a fistula and dialysis work, here is the best link I could find to best explain it all!
|Throwback to beautiful Bowen Island.|
See where I'm going with this?
I was looking through some pictures today and realized how good I looked a few years ago (yeah, yeah - I look wonderful now - thank you). I was strong and rested and all fresh- faced. It got me thinking that maybe it is time for dialysis (I already knew that, but now I KNOW that. I know my doctor is on top of things and I trust him fully, it just takes me a little longer to come to the same conclusion myself). With dialysis helping my system function, I'm hoping to be able to do a bit more of what I used to be able to do. I'm still able to do a lot, sometimes more than most people without kidney issues, but I used to be able to do more and I looked good doing it (wink-wink).
I've also started to come to a better mental place with the idea of a fistula and all of it's grossness. I don't gag quite as much as I did previously. I had the idea that I was going to need to get more long sleeve shirts to cover my arm. I've recently decided that I do not need to cover my arm to make it more comfortable for other people - they can deal. I've decided to just go ahead and rock it. There is a good chance I am going to be on dialysis for awhile and I am not going to keep my arms covered for the next however many years.
This is my reality and I am going to rock it.
Wednesday, January 24, 2018
|Taken by my sister Courtney! @courtneybrettphotography|
So I just got back from my latest clinic visit. All of my numbers are ever so slowly creeping up (nothing was super frightening, but obviously nothing is getting better either...). We increased some blood pressure meds, added an additional calcium supplement, and actually decreased the amount of injections I will take for my hemoglobin (it was too high for the first time in my life). I FINALLY got my TB test done which means I can be added to the transplant list. This also means I can potentially get a call at any time saying they have a kidney for me and I will need to just drop everything and go. Talk about inconvenient (that part doesn't bother me as much as I thought it would - maybe because I have so many other things that can bother me at the moment, this one doesn't seem that big - who knows). I just want to get it over and done with! It is not likely that I will get a call any time soon; it could be years before there is an appropriate match for me.
Which brings us to dialysis.
My doctor is leaning towards inserting the fistula sooner rather than later (gag) because it can take awhile before it becomes useable. There is also the risk that the fistula won't take at all and they will have to try another site. It is a minor procedure that I will need to take a few days off of work (and riding) for. But once it's in, I should be good to go. If they aren't able to make the fistula work, I will need to get the PC catheter inserted to my chest (double gag). This does not mean I am starting dialysis, just that it's coming.
I am kind of having an "oh yeah this is happening" moment. Not that this hasn't all felt very real yet, but it doesn't get much more real than having to live with gross tubing in your arm - blah. I am however feeling incredibly fortunate for all of the love and support I have in my life. It's an amazing thing to have numerous people I can call and have them all be able to screw my head back on straight (not an easy task, I can be a difficult person to manage at the best of times). So thank you all for listening and offering support - it's making it all much more manageable right now.