Tonight, right as I was about to hook up to my dialysis machine, Brandon asked if I wanted to go for a drive. It was almost midnight, but I wanted to be spontaneous and go anyway. I quickly got bundled up and he pulled the car up front for me outside. I was wearing my waterproof sneakers that I get really excited to wear outside now because there is snow on the ground. I ended up slipping and banging my knee on the ground, but I got right back up immediately and hopped in the car. We slowly drove down our street and around the corner. As we turned, we noticed a deer just standing in the roadway. She was not startled by us and slowly strolled about in the snow in front of us. She just stood there in the snow as Christmas lights nearby reflected off of the ground. The peace and serenity I felt is something I didn’t want to forget. Despite the rough start to our little adventure, it was almost as if the deer was there to remind me that in the end, everything will be okay. I’m so glad that I went.
One thing I’ve noticed being chronically ill, is when your whole life starts to change drastically because of your illness, you immediately start to realize what’s really important in life. When you watch everyone around you continue to live their lives while yours is seemingly on pause, you hope for nothing more than these same people to realize what’s important in life, like their health and their relationships. Before the coronavirus, society put all of its importance into people working. Our identities essentially formed around our occupations. People thought they were their jobs. And then the coronavirus happened.
Now people were forced to slow down and re-evaluate their priorities. Some people realized quickly what was important, but other still felt tied to the identities they created for themselves with their occupations and struggled to really find any meaning in life beyond that. People were willing to risk their lives in order to make really rich corporations even more profit because they “couldn’t stay home.” They didn’t know what to do with themselves if they weren’t working. Some people didn’t struggle with that, but were faced with different realizations. Being forced to be around your family/significant other all the time highlighted the deep flaws that were hidden in relationships by all parties always being “busy.” It was easy to ignore these things when they didn’t have to spend any time really thinking about them. And instead of realizing that and strengthening these relationships, people are crying for opportunities to leave their homes, even if it isn’t safe to do so yet, so they can fill their lives up with “busy” again.
I probably know better than most the toll it takes on your mental health being home alone all the time. For me, I have spent most of my time home as the people and world around me continued to turn. Nobody slowed down to check in. Instead, I was supposed to be understanding of THEM and the fact that they were just so busy and didn’t have any time outside of their perfectly curated schedules to fit in a quick visit, or what have you. Now, these same people are loudly complaining about how detrimental quarantine has been to their mental health and how they can’t wait for things to open up and go back to normal. Wearing a mask is hard FOR THEM so they think they shouldn’t have to wear one, meanwhile nurses and other medical professionals have cuts on their faces from the masks they have to wear treating covid patients. The entitlement people are loudly broadcasting is sickening.
On another note, because I’m not a mother, I get constant comments from mothers saying things like “must be nice” when I mention in conversation if I did anything like laid out in the sun, watched Netflix, etc. I had my ovaries taken out a couple years ago not by choice and cannot have children, and they (assumingly) had their children by choice. Sure, it’s nice relaxing, but I’m sure it’s even better being an actual mother. It’s mind blowing to me that people are complaining about spending time with their children instead of making the most of this unprecedented time with them.
I have gone many months not doing things many people take for granted. Years, even. I couldn’t shower for almost two years and had to give myself makeshift spongebaths. Now, I can shower, but I have to wear a lanyard around my neck to hold my stomach catheter so it doesn’t tug and cause an injury. I can’t just dry off and relax after showering either, I have to make sure to clean and bandage my catheter site. I can’t just climb in bed when I’m tired, I have to set up my dialysis machine and then hook up to it for 9 hours every night. I can’t just wake up and go in the mornings because I have to unhook from dialysis and clean everything up. Then I have to make sure I take all of medications, which in itself is frustrating. Imagine having to take lots of medicine in order to stay alive every single day? I’ve stayed home from many family and friend parties because of being chronically ill. I am constantly worrying about how much potassium/phosphorous/sodium/fluid I’ve consumed because having too much of these things can literally kill me. I can’t ever just live in the moment because I am constantly worrying about these things.
With all of that said, these social media posts I’m seeing from people acting like them not being able to dye their hair or go out to eat for two months was the worst thing that could happen to them are literally insulting and nauseating. It’s obvious these people lack perspective. 100k+ people have died from the coronavirus in the United States. Imagine your biggest issue right now being not going out to eat? Their lives seemingly will just go “back to normal” while I’ll still be over here, along with every other chronically ill person, living my life like I were quarantined. We’ll be living this way long after the coronavirus is over, and everyone will go back to living their lives worrying about all of the shit that doesn’t matter instead of prioritizing all of the shit that does.
I was really hopeful at the beginning of the pandemic that this time would wake people up. That instead of begging to go back to work, people would be demanding our government provide us with the resources we deserve right now. I hoped that people would realize how fucked up it is to live in a country that doesn’t guarantee us healthcare, especially now during the pandemic. I hoped people would prioritize their relationships and bonds would become deeper and stronger. Unfortunately, people are still as complacent and selfish as ever.
Life right now is crazy. There is currently a global pandemic because of the coronavirus and most of the world is shut down. Most people are quarantining in their houses and only leaving when absolutely necessary. I’m on day 63. To be honest, I feel mostly okay about quarantining. We took a hit financially because Brandon lost his job, but we’ll be able to make ends meet. We’re privileged to be able to quarantine and still buy groceries or whatever else we need and I don’t forget that for a second, especially now when so many people are suffering. I do miss going out and I miss seeing my friends and family in person, but I’m really loving how quarantining is forcing us to start appreciating the little things in life. A warm, sunny day. A hot cup of coffee in the morning. The buds blooming on the flowers all around us. I’m cooking more and overall just taking better care of myself. I know this isn’t the case for everyone and I wish I could help everyone find fulfillment in these little things.
I realize I never updated about transitioning from hemodialysis to PD, but I did that almost a year ago exactly. There had been an incident at my hemodialysis clinic where the staff were bullying an elderly patient that sat beside me for asking them to lower his chair too much and I got into a major argument with them about it. I ended up filing a complaint which fell on deaf ears. They pretty much told me “I don’t know what you said, but…” and insisted that I was the one in the wrong, not the staff members who had bullied the patient. I was in the process of switching to PD coincidentally and I asked to be transferred to another clinic. They convinced me to stay with Lifespan and move to their PD clinic which was a completely different building with a completely different staff so I agreed. I had to do a few hemodialysis treatments at this clinic and was blown away by how different it was there. The techs at this clinic were compassionate and I can’t say the same for the hemodialysis clinic I was at before. Ironically enough, the staff member I reported transferred to this clinic as well and worked on the floor during my treatments which showed me just how little they cared about my complaint. I shouldn’t have stayed at their PD clinic, but I did.
My first assigned nurse left after about 3 months of me being on PD. He wasn’t very good, as he spent most training sessions just repeating things he already said because he wasn’t very prepared. He once gave me the wrong dosage of a prescription and also forgot to send my transplant labs which he tried to somehow blame on me. I wasn’t sad to see him go. The first time I met my new replacement nurse, she couldn’t find my vein when doing lab work and ended up infiltrating it. She immediately assured me that was only the third time in 17 years that she had done that, which looking back was the first red flag. Throughout the past year of doing PD, she has asked me twice to give a 24-hour urine sample by collecting urine in a jar or whatever I have at my house, because she forgot both times it was due and called me around noon the day before pressuring me to do this. The last straw for me was when she argued with me about the dosage I should be taking for aranesp. I was given one dosage at my lab appointment by my doctor and she insisted it was the wrong dosage and I had to go back to pick it up, regardless of the fact that I voiced I didn’t want to go to the clinic more than I had to during the pandemic. I reached out to a friend who is a dialysis social worker for the same company and she advised me that my nephrologist also worked at another clinic not too far away. I asked my doctor if she could take me as a patient there and she said yes. The process was really quick and easy and I honestly wish I asked to switch earlier. I had my first appointment at my new clinic and I’m already extremely happy with my decision.
My new nurse is super sweet and genuinely cares about her patients. The clinic is small, so she is the only nurse and she is on call 24/7. I have her personal phone number in case of emergencies which is extremely reassuring because I had a really hard time getting in touch with my nurse at my last clinic. At the first appointment at the new clinic, I was explaining to my nurse that I was recently taken off of the transplant list. As of January 1st, I no longer could purchase a secondary insurance policy so I was taken off of the transplant list because patients are required to have two forms of insurance to be listed.
Suddenly there was a knock at the door. It was my new social worker, who said she overheard me discussing my insurance issues, and that she could fix that and get me on the list, no problem. I wasn’t expecting to hear that at all and immediately started happy crying because I have been shouldering the weight of this issue fully on my own until that moment. I contacted DHS, the Commissioner of Health Insurance in Rhode Island, my congressman’s office, HealthSource RI, you name it, I called them, and nobody could help me. My social worker at my last clinic was completely unaware of what my problem was and didn’t know of anyone who could help me. My friends and family couldn’t help me and often treated me as if I was just doing something wrong and not calling the right place. This was the first time I had been validated and it felt great, but overwhelming. My nurse gave me a tissue and let me cry. She kindly said, “It’s okay. You’ve been through a lot” which ended up making me cry more. I have been through a lot. And sometimes it feels like the people around me can’t see or they forget that. I swallow a lot of the bad feelings in order to survive and I think sometimes I do too good of a job of acting like everything is okay and I feel okay. I haven’t met with my social worker one on one yet to discuss the insurance issues more, but I’m hoping we can soon so I can get back on the list.
Once I’m back on the list, I intend to try to get listed at a different hospital than where I’m currently listed at. I want to get listed at Mass General and Brigham & Women’s, both of which are in Boston. It’s quite the drive for me, but they have excellent programs and I know I will have a better experience at either place than I’m having currently at Rhode Island Hospital. Nobody on the transplant team there has tried to help fix my insurance issue either, which is a bad sign to me as the patient. They should want me to be transplanted, but it’s as if they just leave it in the hands of the insurance companies instead and throw their hands up and say “Oh well!” In the meantime, I’ll still be doing dialysis for 9 hours every night.
Most days I am happy that I switched to PD, but I do find I have a lot of general pain from PD as well. I get a lot of catheter pain randomly during the day, I think because I don’t have a day dwell and it ends up rubbing against whatever it’s near internally. I get a lot of drain pain when I first hook up at night and sometimes during the final drain. I get fill pain most nights, almost like a cramping but it ends up going away when I’m about halfway full. I do still have nausea in the morning and in general am very low energy, but I actually get really great dialysis treatments on PD. I hate draining the drain bags and I hate all of the trash and recycling that comes with it, but overall I am glad that I switched to PD. I have a hard time maintaining my potassium levels, so I can pretty much eat as much potassium rich foods as I want without any cause for concern. I can drink more water on PD which is a plus and I really don’t worry as much about my fluid intake because of it. The little bits of mental freedom I get from PD make the transition worth it. I find I have to take more medicine while on PD, like BP meds and iron supplements, but it really is just preparing me for all of the medications I’ll have to take post transplant someday so I try not to be frustrated by it. I recently started a new med, Gabapentin, which is supposed to help with my constant Restless Leg Syndrome. It was suggested by my nurse when I told her I have the worst pain in my legs and arms at night and that I mentioned it to my last nurse a few times but she wasn’t concerned. My new nurse said this medication helps a lot, so I was eager to try it. I take a small dose every night and it has helped tremendously. I finally am also getting about 6 full hours of sleep each night, which is an actual miracle for me. My normal routine is me waking up about 2-4 times every night, so being able to sleep uninterrupted has been such a welcome change. It does make me feel super groggy in the morning and I seem to have hand tremors every now and then, but nothing that’s a cause for concern.
I’m not sure what the future holds, especially because of what’s going on right now with the coronavirus, but I do hope that in the future I am able to get a kidney transplant. I know it’s not a cure and I know there are a whole slew of different struggles that come along with it, but I really do hope to be able to live my life again without having to hook up to a machine every night. Dialysis is something I am grateful for in a way, but it’s really hard and takes a major toll on you. It’s not for the faint of heart. Having to make the conscious decision every single night to hook up to my machine is a heavy decision for someone to make, and I have to keep making that decision every night until I get a transplant. I have to remind myself about all of the things that make life worth living and about everything I can look forward to the next day. That hot cup of coffee. That warm sunny day. The buds blooming on the flowers all around us. It really is the little things that make life worth living.
I never expected to be on dialysis by the time I was 30, but here we are. I’ve been on dialysis for almost two years and quite frankly not a single second of those two years has been easy. You see, it may seem easy on the outside. You may think I’m “lucky” because I don’t work and you may wonder what I possibly could be doing all day. You may pass judgments on me because you don’t understand why I’m not doing more since I look so “good.” But looks can be deceiving.
Right before starting dialysis, I was actively working two jobs. I worked full-time as a chef and production manager as well as part time in retail. I was on my feet for almost 12 hours everyday as my kidneys were failing. I would leave retail shifts with my feet so swollen they were spilling over the top of my flats. Every night, I’d wake up about 3-4 times to pee and at least once to throw up because of this intense burning nausea I’d get regularly. I was constantly tired from the lack of sleep. I’d get incessant cases of hiccups that would be super painful and last for hours. I had to be extremely careful about how much potassium and protein I ate and had extreme food aversions which made eating in general hard. I was constantly thirsty because of the toxins that continued to build up in my body. I was too proud to start dialysis when I needed to, because I was afraid of the judgment that would be passed on me by other people. “Why can’t she work on dialysis?” is a common question I’ve heard, generally not asked directly to me, but asked about me to other people. And I know if it hasn’t specifically been asked, it’s been thought which, as someone who has been an extremely hard worker my whole life until my health took a turn for the worst, truly hurts my soul. Our society places our entire importance on productivity, so when you become an unproductive member of society, you’re judged harshly regardless of the circumstances. And that caused me to push myself longer than I should have.
When I started dialysis, most of those symptoms went away, but a whole slew of new ones started. I am not waking up to pee 3-4 times per night, I’m waking up or just not sleeping in general due to insomnia. I developed a whole different set of food aversions now and have to be aware of how much protein, potassium and phosphorous I’m consuming as well as making sure I’m taking my binders. I now have to give myself Aranesp injections so my body can make red blood cells, as it’s no longer doing so. I have to severely limit my fluids despite the fact that I’m always thirsty and like drinking water. I am deeply fatigued and struggle every single day to complete the most basic of tasks, like keeping up with the housework and taking care of our pets. I developed a uterine issue that resulted in the growth of a borderline tumor that caused damage to both ovaries so they had to be removed and now I’m on hormone replacement therapy for life. When I do decide to push the limits and try to have a normal day, like visiting family or taking a trip to the beach, I pay for it. I legitimately am so exhausted for at least two days after and have to recover in bed for most of each day. My body is actually shutting down as each day passes, and I’m only going to continue to feel worse. Yet as this is all happening, people are still asking “Why can’t she work while on dialysis?” “What does she do all day?” As if surviving isn’t hard enough work. Not just physically, but emotionally too. Having your ability to have children taken away from you at 30 years old because of your disease is a pretty big pill to swallow in itself. Trying to come to terms mentally with feeling your body deteriorate is even harder.
I’ve only just listed the medical side of my life and I’m already exhausted and overwhelmed. On top of all of this, I still have to live my life. I still wake up every morning (these days after my dialysis treatment) and make breakfast for my partner and get his things ready for work. I still feed the animals and let the dog out. I still make myself my meals, go grocery shopping and shopping for household essentials, do the laundry, drop and pick up the dry cleaning, clean the house, make sure the trash and recycling are taken out each week, etc., all while making time for my doctors appointments, dialysis supply orders and doing dialysis treatments every single night. On severe fatigue days, I have to physically push myself to do these things because as we all know, life goes on even if we feel like we can’t get out of bed. I also now make self-care an absolute priority, so getting outside for small walks or just to sit and observe nature have become crucial parts of my survival and maintaining my mental health. My life hasn’t stopped just because I’m on dialysis, so this idea that I am sitting around doing nothing in the meantime couldn’t be further from the truth.
Not many people can endure what I endure every day. Not many people know what it’s like to have your dreams limited by your physical health and they end up taking their good health for granted. If you are someone who has wondered why I can’t work while on dialysis or what I do all day, realize the questions you’re asking say far more about you than they do about me. Your self worth is wrapped up in productivity and you are projecting your fears of not being adequate enough onto me. I don’t fear not being adequate, I fear of dying while on dialysis and not getting to live my life to the fullest. If you can wake up everyday without that fear, then count your blessings and be grateful you’re not someone who can’t.
I wanted to take this time to touch upon one of the biggest issues I’ve faced since embarking on my journey for a transplant: health insurance. I touched upon my initial problems with my health insurance in my last post, and wouldn’t you know, in typical kidneykt style, I already have more insurance issues in 2019!
Some of you may not be aware, but in the United States, we have something called an “open-enrollment period” and during this time you must sign up for healthcare coverage or you will not be covered for the following year. It was November 1st – December 12th nationally, but some states extended the end date until December 31st. This is strictly for buying your own policy through the marketplace if you are not eligible for one through your employer, or other avenues like Medicare or Medicaid. For me, I need a second policy to cover additional medical expenses not covered by Medicare and to be listed for transplant, so I had to purchase it from the marketplace. I already had a plan I was paying for from the previous year, so I renewed it over the phone with an agent to ensure everything would be all set for the following year and set up automatic payment withdrawals for the premiums.
When I was at dialysis on Tuesday, my nephrologist came over to me with a despondent look on his face and said, “So, I’m disappointed to hear we’re having insurance issues again.” Confused, I asked what he meant and he explained he had been contacted by the transplant team (I hadn’t) who stated they were notified I did not have a secondary policy as of January 1st so they took me off of the transplant list. Of course this was news to me, as I had a few weeks prior finalized everything with the agent for my coverage for 2019, so I really had no idea why this would be happening. I was honestly very upset that I was hearing this for the first time from my nephrologist because at this point, it truly felt like the transplant team really didn’t give two shits about me, so much so that they couldn’t even be bothered to notify me of this immediately so we could try to get this issue resolved. I truly have been nothing but an ideal patient since I started dialysis (aside from the fact that I am still refusing the fistula), yet the transplant team truly has done nothing but treat me like a flaky, incompetent person. I feel like I am being retaliated against for confronting them about their massive mistakes last year when scheduling my transplant surgery which directly led to the surgery being postponed. They refuse to accept responsibility for their errors and are trying to place the full responsibility on me by insisting I told them I lost my health insurance (this never happened) which is why they took me off of the list and needed all sorts of documentation to put me back on it. Though them not notifying me of this new issue may seem like a small thing, for me, it compounded on top of every other bad experience I have had with them (IE: Me being told by the financial coordinator that technically she isn’t my financial coordinator until I have transplant surgery, my clueless transplant doctor telling me that having a partial hysterectomy was a blessing in disguise, the living-donor coordinator asking my potential donor if she’d like to altruistically donate to someone else, etc.) and I decided that I want to look for a new transplant team. More on that later.
I contacted the marketplace (called HealthSource RI here) to try to fix my insurance issues. After about an hour and a half of explaining this issue and trying to get it resolved, they explained they weren’t sure why I was removed from my policy, but they couldn’t help me and they wanted me to contact the Department of Human Services (who I already knew couldn’t help me). I contacted my dialysis social worker (who literally keeps me sane) and she said she had other patients who ran into this issue- there seemed to be a glitch in the system for patients that also have Medicare and some of her patients even had prescriptions that weren’t being covered. Before I was able to look into it further, I got a call from HealthSource RI two days after my initial discussions with them. It was from a woman who basically explained she was calling to sign me up for the plan I had initially, again. This call took all of 5 minutes and she backdated the coverage to January 1st. So essentially, I lost my insurance in error and was then taken off of the transplant list in error, while also being told they couldn’t help me in error as well. Again, this may seem like some simple thing that most people wouldn’t get upset over, but the fact that this even happened created a massive amount of unneeded stress and repeated problems like this that are beyond your control take a huge toll on you emotionally. Now that my insurance issues are figured out, I am going to move forward with a new transplant team.
I still have to make the initial appointment, but I have decided to go to UMass in Worcester, Massachusetts which is about a 45-50 minute drive from where I live currently. This is where my brother had his transplant surgery and continues to see his post-transplant doctors. I truly cannot move forward with the transplant team I currently have at Rhode Island Hospital. I have never felt more mistreated by a group of doctors. I would not recommend the transplant team at Rhode Island Hospital for anything at all. Every single person I have worked with- the dietitian, the social worker, the transplant coordinator, the financial coordinator, the transplant doctor and the secretaries- have been extremely impersonal and cold. Whenever I go to my appointments, it feels as though nobody knows me or even cares about me, especially when my transplant doctor reads my file update for the first time when we’re in the room together. I really am looking forward to getting a new team that I can feel good about working with for transplant.
The most frustrating part about all of these experiences is that if I lived in a country that had universal healthcare coverage, I would have had the transplant surgery almost a year ago now. I wouldn’t be required to pay for two insurance policies in order to be listed for transplant. I truly don’t understand how anyone can be against the idea of universal healthcare, and quite frankly, I believe anyone who is really hasn’t done enough research about it. Not only would switching to a universal healthcare model save us trillions of dollars in the long run (there are many economists and lots of data confirming this), but life expectancy would actually RISE again in our country. Health outcomes would be better because people would be able to get the preventative care they need, which can help eliminate people waiting too long to receive the care they need that can exacerbate medical problems. If people are healthier, then they can actually contribute more to society and help the economy thrive. As I stated previously, I could have had a transplant almost a year ago. Imagine if I had, and no longer needed to be on Medicare AND disability, how much money the government would have saved? Our system is deeply broken, and people like me are at the brunt of it.
I contacted my governor immediately after the issues I ran into this week. I told her my story and explained how much we need universal healthcare here. New York City did it- imagine if Rhode Island followed suit (they have 4x the population!)? If we want these systems to change, we must demand they change ourselves. I am extremely passionate about this issue, and would love to help anyone who is too, contact the appropriate people and let them know that things need to change. If you don’t support the idea of universal healthcare in the United States, then you clearly aren’t paying attention!