The Now

Wow. It’s been quite a while.

I initially started this blog because I searched for similar places before I started dialysis. I wanted to read experiences of other people going through the same thing to try and mentally prepare for the journey ahead. After starting dialysis, I quickly lost the drive and motivation I initially had to document my experiences. I often feel like I just go through the motions of living these days instead of actually living and that in itself can be overwhelming. I see the people around me and their lives haven’t stopped and it makes me feel left out and a little disconnected. I dealt with so many financial struggles this year due to being out of work, along with not having a working car for most of the time, which made me feel a lot worse about myself than I should have. It was a terrible cycle of me feeling bad for not making the same strides forward as everyone else and feeling bad for not doing more. They say that “comparison is the thief of joy,” and when it comes to being chronically ill, that couldn’t be more true. My mind has a hard time accepting the limitations of my disease and I’m trying to not be so hard on myself when I can’t or am not doing the things that I really want to do. I decided I am going to try to write more, but I’m not going to put too much pressure on myself to do it.

With that said, a lot has happened in this past year, so I’ll do my best to recap.

I haven’t discussed this much here or on social media, but I do have a match for a kidney donor. My donor is an incredible person and started altruistically testing to be my match last November.  After a couple months of extensive testing for both of us, we found out she is indeed a match! I feel very blessed that someone would do something like this for me and truly cannot put into words how much I appreciate everything she has done. At the time, I was out on temporary disability from my job and was on my employer health insurance because of that (I also had to pick up Medicare in order to be listed for transplant). My employer was holding my job for up to 6 months and was continuing to pay for my insurance during that time. We initially had a transplant date scheduled for March 19th, 2018. That was almost exactly the 6 month mark for me being out of work, so I asked the transplant team what would happen if my employer couldn’t extend my insurance. I explained I hadn’t spoken to them yet about it and it most likely wouldn’t be an issue (I worked for a small, flexible non-profit company and they ended up agreeing to extend my insurance once I spoke to them since the plan was I’d have the surgery and go back to work once healed). Because I said this, the coordinator I spoke to misinterpreted what I said and assumed I had no insurance, so she cancelled my surgery and took me off of the list. In the meantime, the transplant team requested I call my employer to confirm the insurance would be extended. I did so and contacted the transplant team to let them know it was, but they then decided they wanted written documentation of that from my employer. My employer sent this, but the transplant team didn’t like the wording, so they contacted my employer themselves by phone to discuss the matter further. After the clarification, the transplant team requested another written document from my employer confirming I would still be on their insurance. These exchanges took about 3 weeks and pushed back the transplant date further. Because of this, my donor wasn’t able to donate at that time anymore because of plans she had already made for the summer with her family, so we agreed to hold off on the transplant until after July. For the record, I am very unhappy with the way the team handled this entire situation (and many other things that I don’t feel like getting into, like the living donor coordinator trying to convince my donor to donate altruistically to someone else) and fully blame them for the fact that I didn’t have the surgery in March.

Since the surgery was postponed and I was no longer going to be going back to my employer in the next few months, they were no longer able to continue extending my insurance because quite frankly neither of us knew when or if I’d ever be going back to work. So essentially all of the frustrations we had just dealt with when it came to my employer insurance was for nothing. At this point, I was still on Medicare, but I couldn’t be listed for transplant with just Medicare so the transplant team took me off of the transplant list. I tried applying for Medicaid but apparently get too much from SSDI to qualify, so my boyfriend had to buy a secondary private insurance plan for me since I can’t actually afford to do so myself. I finally had all of my insurance things straightened out by the summer and felt hopeful about things finally moving forward again.

That’s when I found out that I had a cyst in my uterus that I needed to have removed before I could have the transplant. I had been having irregular bleeding off and on and went to my primary care for an exam. She requested an ultrasound and they saw the cyst, but it was quite large at 9cm. She referred me to a gyno specialist for further evaluation, where I had a trans-vaginal ultrasound, and she advised that they weren’t quite sure what the cyst was and it needed to be removed. She did mention some possible damage to my left ovary as well and mentioned they may need to take it, but they wouldn’t really know until they did the surgery. The surgery was potentially going to be done laparoscopically, but if they opened me up and saw the cyst was too large to remove that way, they would have to make an incision and remove it that way. They ended up having to do the surgery with an incision and took the cyst (which was 10cm by now), along with both of my ovaries. They had warned me that this was the worst-case scenario situation before-hand so I was a little prepared mentally, but waking up and finding out both of my ovaries were removed was upsetting. I’m not someone who was even sure if I wanted kids, but not actually being able to make that decision for yourself kind of sucks. I was put on hormones so I don’t go into menopause that I’ll have to take until my body would normally go into menopause. The surgeon advised the cyst they removed was actually something called a borderline tumor and that they needed to send it out for testing to see if it was cancerous. It took over a month to get the results, as they had to send the sample out for a second opinion and they had thought an area looked suspicious. I got the clearance that it wasn’t cancer and was told I could start thinking about moving forward with transplant again.

This brings us to last month. The transplant team reviewed everything with my surgeon and they agreed we could move forward. My donor started a new job during the summer, so at this point, we are at a standstill trying to figure out her time off and how that will work when it comes to the surgery and recovery. We’re approaching the year mark for our testing, so there is a possibility we will have to re-do all of the testing again before we can move forward with the surgery. This journey for me so far has sort of been nothing but road blocks, but I’m hopeful things will work themselves out and we can move forward with everything soon enough.

I’ve only been on dialysis for a little over a year, but it feels like it’s been a lifetime. I truly struggle mentally on dialysis days knowing how much I don’t want to go to dialysis and sit in a chair hooked up to a machine for 3 hours, but have to go anyway because my life literally depends on it. I’m sick and tired of dealing with my dietary restrictions and the frustrations that come with them, like swelling if I drink too much fluid. I’m sick of the nausea I get for no reason that either gives me no appetite or causes me to throw up whatever I eat. It’s so hard to focus on the positives all of the time when there’s just so much negative, but I really make an effort to focus my energy on that. In this past year, I’ve learned so much about not only myself, but the world and relationships around me. I feel closer to certain people that were already in my life, but I’ve also been able to grow new friendships during this time as well. I am truly grateful for all of the people in my life and I’m especially grateful to be with a partner right now who helps me find the joy in life despite everything.

In the meantime, I’m just trying to focus on enjoying the now and finding ways to feel like I am actually living and not just going through the motions. Traveling, eating foods I love (in moderation), self-care, reading, spending more time with the people I love… I realized that we never know how long we have on this Earth, so there is no point in me wallowing this time away while I’m waiting for transplant. My life didn’t end, it’s just different now and I am still trying to get used to this new normal.

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Broody Days

When I first started dialysis, I felt very motivated and inspired to share my story. I had been searching for others who have gone through similar stories so I’d know more about what I was about to experience, which helps me cope with new situations. I tried to maintain a positive outlook to help not only myself, but for others to know that you don’t have to let your disease determine your life. But now that 3 months have passed (crazy, right?), I’m feeling myself start to lose that positivity that was helping fuel my motivation. Some days are most certainly harder than others mentally. I’m genuinely always tired, but there are days where I have to combat the tiredness along with depression, which has gotten worse for me and harder for me to keep at bay because of the length of time this has gone on.

I truly believed there was a chance I’d get a new kidney by now. But the days keep passing. And I’m finding more and more people that have been on dialysis for many years, that are still waiting for a new kidney. Having to accept that part is what is so hard mentally- we have no control over our current situation and no control over how quickly we can get better. I know that being on dialysis for 3 months is NOTHING compared to the length of time other people I have met have been waiting. What’s hard for me is feeling like my real life has just been on hold this whole time. I was happily working 2 jobs up until a day before I started dialysis and then my whole world was flipped upside down. I was just starting to build a career in a field that I love (food and nutrition), but had to put my professional dreams on hold in order to get control over my health. But I want to go back to work. I want to go back to working 12 hour days doing something that I love. I know this is all just temporary and I keep reminding myself of that. But knowing that doesn’t make it any easier.

Aside from all of that, dialysis hasn’t been too bad. I still haven’t really had any issues with my new catheter since I had it placed (yay!) and my BP is finally within a normal range. For about a week or so, I was feeling extremely lightheaded regularly and would experience tunnel vision anytime I would stand up to walk somewhere because my BP was low. I have had a few instances during treatments where it was so low (94/73) that they had to do a second saline flush to try and raise it. My doctor decided to take me off of two of my meds on Tuesday- Torsemide and Amlodopine, so hopefully that goes well and my BP will be within a normal range.

I had my final appointment with the transplant team to be put on “the list.” The waitlist in Rhode Island for a new kidney (from a deceased donor) is at least 5 years long. I have been blessed to have a couple people come forward to be tested as a match for a living donor, so I’m hoping that something good can come out of that, but I’m also trying not to get my hopes up too much out of fear that I’m just going to be disappointed because they won’t be a match.

I haven’t really been in the holiday spirit this year either. To be honest, Christmas has been giving me anxiety because I know I can’t afford to buy gifts for all of the people that I want to buy gifts for. And that upsets me because I am the type of person that loves to give. I’m really looking forward to future holidays when I have a new kidney and am no longer on dialysis, so I won’t have to feel like I’m a loser on top of the fact that I’m also struggling to survive.

More to come.

K.

Skin

Not too much has happened since I last updated, but I’ll try my best to recap.
My catheter is still working pretty well. It’s healing pretty well too, though at times it can feel a little irritated if it shifts a bit. Dialysis is still going pretty well too, but the past few treatments they’ve had to lower the flow on the machine from 500 down to 400, as they stated my “arterial pressure” was high. I asked them if they think there is anything wrong with it and they insist there isn’t, so I guess we’ll just wait and see how the rest of the treatments go.

I had an echocardiogram and ultrasound for my transplant workup- this is essentially testing to make sure that I can even HAVE a kidney transplant. I also had to have a pap smear (I know, gross) which came back normal, except for the fact that I have unexplained ovarian cysts. I’ve never had them before, so that’s alarming, and they’re pretty painful. They don’t constantly hurt, but I’ll randomly feel a sharp, shooting pain in my pelvis that can be a little debilitating. There is no treatment for these, as they are benign and essentially I just have to let them disappear on their own. It’s not fun, but I’m dealing.

I’m still out of work, but finally received my temporary disability payments, so I’ve finally caught up on bills which feels so relieving.

NOW FOR YOUR REGULARLY SCHEDULED PROGRAMING-
I decided I want to start blogging about topics that CKD/ESRD patients can relate to, to hopefully let others out there know that they aren’t alone. Today’s topic: SKIN.

As many CKD patients know, your skin is dramatically affected by your disease. As someone who has had relatively clear skin my entire life, the skin changes I have experienced have made me feel self conscious, but I try my hardest not to let it bother me.

BODY: The skin on my legs, stomach and back have lots of little redish dots on them (some people compare this to “chicken skin”) that I believe are honestly lots of little ingrown hairs. For some reason, when the hair has been trying to push through the follicle in these places as it grows, instead of protruding from the skin, the follicle clogs. My skin is also EXTREMELY dry, to the point where it flakes off so much that as disgusting as it sounds, it literally looks like snow falling off of my body if I rub the dry skin at all. I’ve been dry brushing and moisturizing which helps a little bit, but the dry skin is so severe that nothing really keeps it at bay for too long. Before dialysis, I also had LOTS of unexplained bruises that appeared all over my body, but since I’ve been on dialysis those have dramatically decreased. I have started noticing some appearing on my legs though, so I’m hoping it doesn’t get any worse.

Left Leg
Here’s a picture of the fresh bruising and “ingrown hairs” on my legs.

FACE: The skin on my face is the hardest for me to deal with. My skin is really dry and I’ve noticed lots of hyper-pigmentation (dark spots) on my face, that are caused by the buildup of toxins in my blood stream from my failing kidneys. I have lots of black heads and pimples that have been appearing lately, which is not normal for me. Even as an adolescent, I rarely ever broke out, so dealing with the skin of teenager at 29 is a little disheartening. My skin has a grayish tinge and the dark circles under my eyes don’t help either. Luckily, I no longer experience extreme swelling in my face when I wake up in the morning since my edema is under control, so that’s a plus. I wish I had suggestions for others experiencing similar issues- but unfortunately, I don’t have the answers myself. I’m very much looking forward to the day I receive a kidney so these issues will just be a thing of that past.

Face
My face! All the brown spots on my face (and lips) is the hyper-pigmentation I mentioned. My chin especially has lots of clogged pores. Unrelated note- I’ve been growing my eyebrows out for 3 years and they’ve STILL yet to grow in :'[
What kind of differences did you notice in your skin as your disease progressed? Let me know in the comments below.

More to come.

K.

Dialysize

Geez, I haven’t updated you guys in quite a bit!

I did end up needing a new catheter. This time around, the insertion was SO much less painful (I asked for more meds!) and the healing has even been so much better. The worst part of the first catheter was the stitches that were placed riggghht near the muscles in my neck (that you use basically anytime you move your head!). The new one is called a split-cath and seems to be a lot smaller and working much better than the other one I had!

I had switched my dialysis time from 12-4 to 7-11 about a week before I needed a new cath. It is harder for me to find rides to dialysis that early in the morning, but I was willing to do whatever it took to get me back to work as soon as possible. Now that I am not returning until at least December, I asked to be switched back to my old shift. Whoever I’ve told that I wanted to move because it’d be easier logistically for me to get rides there, have responded with the question, “Oh, you don’t feel comfortable driving yourself?” THIS QUESTION GENUINELY BOTHERS ME! I think they think they’re being helpful because they then say things like “Well, you’re young. Our young patients are able to bounce right back usually.” In reality, they’re undermining what it’s like to being going through what I’m going through at a young age. This is very frustrating to me and I’ve already made a promise to myself to tell them that at my next appointment with my kidney care team.

I’m hoping to find more motivation to actually start working on these recipes I keep saying that I’m going to be working on. Some days it’s really hard to find the drive to do anything, but I’m trying to work on a little bit at a time!

More to come.

K.

Cath Probz

I’m kind of stuck in limbo right now. The medicine that they gave me on Saturday for my catheter didn’t help the blood flow at all. The nurses wanted to see if the issue corrected itself somehow at dialysis yesterday, but they still had a hard time getting my catheter to pump properly. So now I have to wait to see what my nephrologist recommends, which is most likely going to be that I need to go back to the clinic that inserted my catheter so they can see what’s going on internally. I’m trying not to think too much of the possible outcomes, but realistically, I’m probably going to need a new catheter. Knowing I might need a new catheter is pretty frustrating because the healing process was painful and it took me almost 2 weeks to get back to living and feeling normal.

Tuesday was my first day on “the early shift” at dialysis because I was hoping to start to prepare to go back to work, but if I do need a new catheter, I’m going to be out of work for longer. If that’s the case, I’m going to request to be moved back to my old dialysis shift since it just works out better for me logistically when it comes to rides and such. I listened to the recommendation of my dietician and “cheated” this past weekend and actually gained some fluid (1kg) because of it. But, I don’t like how I feel when I “cheat” and eat foods that I’m not supposed to, because they make me physically FEEL bad. If I eat something super sweet or super salty, I just feel blah overall and have to chug water and then my stomach feels distended for a bit. It’s just not worth it to me.

I’m trying hard not to get bummed out about being out of work. Normally, I’d be perpetually and overwhelmingly anxious because of bills and financial issues, but I’m really at a point now where I know that those things don’t matter in the grand scheme of things. Bills can be paid eventually; taking care of myself right now is what is most important. I didn’t realize I needed to give my nephrologist a paper for TDI, so that put me back almost a month in receiving a paycheck. I re-applied again yesterday and am hoping that I can get something soon.

My birthday is in about a week and honestly, I’m just not feeling it this year. I actually almost forgot about it until my Mom mentioned it a few days ago, which is NOT like me. I actually have dialysis ON my birthday too. I really want to try doing something nice for myself, but my lack of energy/motivation/money lately might impede that. I do think the weekend after my birthday, I want to try making a trip to Cambridge to try Veggie Galaxy for THE FIRST time (it’s shameful, I know). Food always makes me happy!

More to come.

K.

One Month

It’s been officially a month since I started dialysis! Crazy, right?

Treatments have been pretty good still, except for my catheter acting up the past few times. They’ve had a lot of trouble lately getting a good flow from my catheter so I have to go early to my next treatment so they can rub a medicine on that will help with that. I am getting my dialysis time switched starting next week to 7-11. I’m pretty happy about this! I requested it so I could try going back to work. Based on advice I gotten from others who have gone through similar things, I’m not sure if I’m rushing the going back to work thing yet. I decided to give it a few weeks on my new dialysis schedule before I jump into things.

I had my one-month care-team meeting with my nephrologist, dietician, social worker and the head dialysis nurse. They are very happy with the progress I’ve made thus far and they all told me that I’m their ideal patient, which made me feel pretty happy! I’m notorious for being the most difficult patient due to my strong beliefs that usually don’t mesh well with doctors/prescriptions/etc. All of my dietary numbers were exactly where they need to be which I feel is truly a pretty crazy accomplishment! I spent my time in college getting an Associate’s Degree in Culinary Arts and a Bachelor’s Degree in Nutrition, so I have a little more knowledge about the subjects than the average person, which has given me an unfair advantage when it comes to making food choices while on the renal diet. My dietician has been encouraging me to really write down the recipes I’ve been creating so I can share them with other patients who struggle to think of ways to eat correctly without being miserable. I said it before, but after her insistence this week, I decided I’m going to do it! I think I will post the recipes here on my blog for now and I’m going to try to post at least 1 recipe a week (I’ll do more if I’m feeling extra motivated!). I am planning to include the nutritional facts for the recipes as well, so that those who are monitoring their potassium/phosphorous/protein/sodium etc, can quickly know how much of eat thing is in what they’re eating. So far I have nearly perfected a plant-based, kidney-friendly mac and cheeze, lentil soup, and a thai-inspired salad! They need a little more recipe testing before I post the finalized recipes though! If you guys have any recipe requests, let me know!

 

The Witching Hour

Dialysis days definitely mess with my sleep schedule. I felt tired and had a slight headache after treatment today and fell asleep early (for me) around 9PM. I woke up around 12:45AM and have been awake since!

My weight seems to have stabilized a bit now, which is good. Tuesdays are my favorite dialysis days because I meet with everyone on my care team. I’ve never really felt like any doctors or medical professionals I’ve seen in the past were ever really there FOR ME, if that makes sense, but I truly feel valued and cared for as a patient by my kidney care team. It’s an amazing feeling!

I’m trying to enjoy my new normal (of being out of work), but it’s hard to enjoy because it still doesn’t seem like real life.

More to come.

K.