Moving from just the average lupus symptoms to experiencing kidney failure was quite traumatic in many ways. It was a tough time in my life and I felt like everything was turned upside down. It seemed all my relationships were strained or I didn’t have the fulfilling type of relationships with the people I thought I did. Those whom I thought were friends were not. I felt distant with family and when I needed to come to them with any problem, there were no practical solutions or that I had to “just deal with it” on my own. Home life was stressful, work life was stressful. It was just a mess. If you are familiar with lupus, one of the major things that is spoken about it is that those of us with that diagnosis (or shall I say, ANYONE with any illness) should avoid stress as often as possible. So when I say this was one of the most stressful times in my life, that is the TRUTH!

So after living in North Carolina for a few months, I began having symptoms of swelling in my legs and other areas of my body, in my ignorance I simply thought it was a lupus issue. There were times where I would experience those issues and then they would go away after a while. However, in this instance it did not.

I was experiencing exhaustion and the swelling continued.. I went to the hospital. They took my blood pressure and the cuff was hurting really bad. I thought it was weird, but little did I know at the time it was due to the very high blood pressure.

I was admitted into the emergency room and they took my blood to run tests. The attending physician came in and told me that my creatinine was at a 7. I had a quick shock because I knew what that meant. (In case you don’t know, creatinine is one of the measures of kidney function. Ideally, a good creatinine level is between a 0.5-1.1 mg/dl (milligrams per deciliter) for women and 0.6-1.2mg/dl for men. The higher the number the worse the condition.)

It was at that moment that I knew my kidneys were in a bad state. The physician said, “You have the option to stay or go home,”

Looking back, I’m sitting here thinking, ‘Why would they say I should go home if this is my first time hearing of the diagnosis? I have never had dialysis, nor do I have an access port to “get drained” of all this fluid. Shouldn’t I be prepped for treatment?’

“I will stay,”

Thus, this began a 2 month hospital stay to get stabilized.

Permcath Surgery

After being admitted to the hospital, despite my telling the doctors and nurses that a saline solution into my body will not work, nor activate my kidneys, they still did it anyway. I had the saline drip through I/V for 3 days straight. I gained so much water weight it was ridiculous. Mind you, I’ve never been an overweight person. Let’s just say I gained new stretch marks because of the quick weight gain in such a short period of time!

After the third day, I was sent to the Operating Room (OR) in order to have the Permcath installed in my chest. Despite the name Permcath (I took the “perm” to mean “permanent”), it is not meant to stay in there forever as it provides an increased risk of infection to the patient. Here in the states, it is the first thing they typically give a new dialysis patient as an access to treatment.

Beginning Dialysis Treatments. In case you are not familiar with the purpose of kidney hemodialysis, it is meant to take on the role of a non-functioning or low-functioning kidney. Kidneys have such an important role in the body with one of them being the ability to balance and the rid the body of excess, salt, phosphorous, potassium, etc., including an excess of fluid. There are different forms of dialysis, however I am speaking of hemodialysis which is done through the blood.

I had to do treatments right there in the room I was in. I recall a nurse coming in to administer Benadryl. Apparently this is what is given to many dialysis patients when they first start. From what I’ve learned, it is to help with relieving itching (due to high phosphorous), anxiety by promoting sleep and other things. All I know is that it was pushed so fast through IV line in my arm that I felt the sting of the medicine in my eyes and I got drowsy. I later found out that was a huge NO-NO and can be very dangerous and life-threatening to the patient. -_- He seemed like the type of guy to get off on people’s pain anyway as his personality was quite strange. -_-

After receiving Benadryl, I saw how they hooked up the arterial and venous saline tube lines (refer to the external limbs of the permcath diagram above) from the machine to the catheter in my chest.

This entire experience was so new and scary at the same time.

The dialysis machine was really loud and sounded old and clunky. I had my concerns, however I was so tired and exhausted I figured maybe that’s how they sound. The technician who set up the machine was a sweet sister who loved to carry on fun conversations. I’m not sure what prompted me to do this, but I decided to talk about my dreams and what I wanted to accomplish in life. I think perhaps, it gave me some form of hope or something to look forward to because life wasn’t looking too good then.

I was doing dialysis treatments daily. I don’t remember how long each session was. During one of the treatments I had “crashed”. (That is the term I’ve heard used for an instance when your blood pressure is too low or you lose consciousness) All I remember is being woken up by the technician and there was an ice pack on my head as she kept calling my name and holding me up.

Kidney Biopsy

Sometime between all that I had gotten a kidney biopsy so the nephrologist can see the physical state of my kidneys. I had to lay on a table on my belly. I felt her feel around on my lower back. An injection of lidocaine (a form of numbing medicine) was administered. Then I had felt the pressure of what sounded like a stapler in that area. It was then patched up with some gauze and tape. Voila, done! For days after I kept bleeding from the permcath and site of the biopsy. They came to the conclusion that I was probably allergic to the heparin that was given during dialysis to keep blood from clotting in the tubes. They stopped that and gave saline flushes instead but continued blood thinning with coumadin treatment.

The nephrologist had gotten back to me with the result of the biopsy and specifically said, “I have never seen kidneys this metastasized in a lupus patient,”

In other words, she’s never seen kidneys so spread out and huge in a situation such as mine. In my mind I replied with, ‘Ok’ and did my best to keep my thoughts positive. She said they will continue to do what they can to stabilize the lupus activity in my system as it was raging like a wild fire. I was barely responding to the typical medicines I was given.

They even tried an intravenous drug called Rituxan in order to help. It’s a drug typically given to cancer patients as well as serious cases of lupus where no other drug is working. That wasn’t improving my situation either.

It seemed at that time in my life my body was giving up. I don’t even think at this point I had the chance to cry because there was so much to take in at the same time. I felt like I had to be on my toes and watch the moves of each doctor and nurse that attended to me to make sure everything was done correctly to the best of my knowledge. I felt like some things weren’t right, like the guy giving me the Benadryl, or the nurse that got mad at me in the middle of the night because I didn’t remember what my last blood pressure was. Totally not my job, but yours lady! However, in certain scenarios, unlike today, I simply didn’t have enough information at the time to know what was up. I did keep asking for print outs of medications that I was being given and I did my best to study and understand each piece of information.

At other times I felt the staff were very kind such as the lady who came to change my sheets or other nursing staff. I often talked about fun light-hearted things or something funny on TV with them. I was also able to keep in contact with people very special in my life who allowed me the emotional outlet I needed every so often. It all really helped me a lot to get through this at the time.

Dr Appointments & In-Center Dialysis

One of the worse things about leaving a hospital after a new diagnosis is leaving knowing that you are not fully “fixed”. What I mean by that is that I left without being 100% better. Nothing was cured, just subdued. I HATED that feeling and it only made me feel sad and lose hope. However I went to dialysis and other doctor appointments. One of them was seeing the hematologist (doctor specializing in diseases of the blood).

My appointments with the hematologist was quite interesting. Him and other doctors thought I had an issue with constantly losing blood, yet by this time I was not bleeding anywhere. Looking back today, it may have been just lupus over-reacting and essentially eliminating blood cells. It could’ve been loosing too much blood in the filter of the dialysis machine. Up to this day I have no solid answer for why that was. I can only speculate.

Also, with kidney disease, it is hard to replenish your blood cells to accommodate the normal loss we experience daily of the natural life cycle of the blood cell. They die and are reproduced every day. With low functioning kidneys, most dialysis patients have to receive hormone injections (a synthetic form of Erythropoietin, the natural hormone in your body) in order to tell the bone marrow to produce more red blood cells. This is one of the many things the kidneys are generally responsible for. There are a variety of medicines that do this with Epogen being one of them.

I had showed up to the second appointment with the hematologist in a wheel chair. I had no idea why I couldn’t move my leg the way I wanted to. It didn’t even cross my mind that maybe there was a blood clot. This was first an issue noted when I went to the dialysis clinic and the technician was asking why my foot was turned sideways as I walked. I didn’t even realize it until she pointed it out to me. That’s how out of it I was.

As soon as I was seen in the office I just broke down crying. I generally don’t like to cry, but all the emotional pain I had built up in my body for years and years was released that day. It was so bad and I was trying to apologize for it but nothing would work. My body was on autopilot and I was crying hard. Face red, tears everywhere. The doctor’s assistant came in, took my blood pressure and encouraged me to breathe. I eventually felt better and she took some bloodwork. The doctor was able to see that my blood was worse off then than it was in the hospital. He was at a loss for words and didn’t know what to do with me. Like all the other doctors, they kept asking for my original doctor’s name and contact information to help solve this puzzle.

Doctors Confused-Hospitalized Again

Since so many doctors in North Carolina couldn’t figure out what to do with me I went back home to CT to deal with my doctor who’s more familiar with my body. I was not fully alert, yet managed to get me a train ticket and got home. It was worse that my phone battery at the time couldn’t hold a charge and I had to constantly find a place to plug in. One of the conductors was very rude to me when I simply asked him to help me put my ONE suitcase luggage above me which was right by him. Not only was I a bit weak, but heavy lifting with a catheter in your chest is a big no-no. I will always remember that rudeness and extreme annoyance in his eyes, yet I do appreciate other people who have helped me along the way.

Going to the hospital back home felt better. The staff seemed to have better resources to help me. Perhaps it just felt better to be in a more familiar environment.

I ended up staying another month at the hospital in CT. All my days felt blended together. One day the social worker asked me about my health history; when I started treatments, when I came back and more. I just put my hand on my hip, took a big breath and just looked at the calendar. I went through so much it was hard to remember at the time. I was processing a lot; my feelings, new information about what’s going on with my body, etc. I remember her face looking like she thought I was crazy.

Memory Lapses. I had issues with my memory going in and out. I recall a doctor coming in to check on me. He asked me 3 questions, my name, who the president of the United States was and how old I was. I remember I couldn’t answer the second question. I knew it rhymed with Osama, but I just couldn’t get it out. Then as he left he said, “And the president of the United States is Obama”. Boy I felt embarrassed. lol

I learned that this memory issue could’ve been due to the lupus not being fully stable or having really high blood pressure due to low functioning kidneys.

As doctors continued to asses what was going on with me they tried (unsuccessfully) to communicate with the doctors who dealt with me in North Carolina to find out what day I had what treatments. It was pathetic and what was worse is I couldn’t fully remember which days either. I’m sure it was quite frustrating for my doctors as you would think other doctors would be responsible in how information of every treatment is recorded.

More Doctor Confusion I recall two teams of doctors fighting over what my issue was. One thought I had TTP (Thrombotic Thrombocytopenic Purpura) which is a condition in which small blood clots form throughout the vessels in the brain, kidneys, etc. The others were saying it was just part of the lupus and kidney disease with the high blood pressure that comes with it. They even put me in the middle of the argument while I’m laying there just trying to feel better. Really? lol -_-

Plasmapheresis Treatments

My doctors contacted a new rheumatologist (doctor who deals with rheumatic issues such as joint issues, autoimmune disease and more) who reviewed my case and suggested plasmapheresis (plasma exchange) treatments.

My experience has allowed me to take an even greater interest in medical terminology and how things worked more than ever before. Since I never heard of this treatment, I decided to ask the technician. We had an entire conversation about how people donate blood or plasma and how it’s separated so it can be donated to people like me who needed it at the time. When this happens, you still need the compatibility of blood typing (for example, A+ can donate to an A+ blood type) in order to get the most compatible plasma donation.

It was an exchange, completely ridding my body of it’s own plasma while replacing it with donor plasma. I was also given albumin (a form of protein in the blood produced by the liver in abundance which is needed for bodily repair). All this was done in order to significantly reduce the bad antibodies (naturally present in plasma that provides part of the body’s defense against bacteria, viruses, etc.) that was going into overdrive attacking my own body.

Initially, getting the albumin manufactured in a lab didn’t work for me. I needed the real deal and that’s when I got better. The technician made a note that the exchange I had looked like a normal person’s rather than someone who was sick. I just shook my head thinking here is another thing about me that doesn’t seem to make sense on the surface however, I was feeling better anyway.

I remember feeling strong tingling on my tongue each time plasma treatments started. This is one of the side-effects due to calcium levels dropping during the treatment. It’s the weirdest feeling. To combat it, I was given a calcium supplement at the time and it quickly went away. Despite this little side effect that lasted only at the beginning of each treatment for a brief moment it helped me so much. I had a series of 8 treatments.

Full Schedule Of Treatments This was another very busy time for me because I had to do this treatment on one day while doing dialysis on the other days. So I had dialysis treatment 3 times a week. Monday, Wednesday, Friday. Tuesday, Thursday and Saturday for plasma. I had Sundays off. The strangest thing I experienced after each of these treatments was the need to do a deep clean of my room and space. People must’ve thought I was nuts and encouraged me to rest. lol

New Dialysis Access-Fistula Installation

I was becoming more and more stabilized. My blood was “acting right” and things were improving. It was just about time for me to leave the hospital when I was given pamphlets of information on putting a fistula in my arm. A fistula is another type of dialysis access for your body in which the an artery and vein are surgically attached creating a strong blood flow that can handle the flow of the dialysis machine. Most of the times it is created in the arm, however it can be created in other parts of the body. Upon much coaxing by the doctors, I agreed to get it done. They said it will take a certain number of weeks before it gets strong enough to be used. Until then, I still had to get treatments directly through my chest with the permcath. (In another article I will share how mine grew so big and had to be revised).

When it was time for the surgery, two young doctors were fighting over whether I was getting a fistula or a graft. I’m laying there like ‘What the hell, I thought I made my decision?! And you guys are preparing to wheel me to the OR (Operating Room) without knowing what the hell is going on?! UGH!’

However, I was still weak and too drugged up to really tell them to go take a time out and figure out what the hell is going on. Thankfully, they weren’t the ones doing the surgery! The surgeon was cool when I met him. He had a soft voice and seemingly good energy about him. I told him my concerns and he was understanding and reassured me. Before I knew it, the surgery was done.

Home Sweet Home

Days after getting the surgery, it was time for me to go home and face the realization of living with this new diagnosis. I finally had the chance to process all that has happened and began another portion of my healing. This is the final part of the history of my story: OVERCOMING. Thank you for sticking by. 🙂

Much Love
*~Netert Aset~*

Have or you or someone you know experienced going through End Stage Renal Disease/Kidney Failure?

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