May 8, 2018

It’s a surreal feeling sitting at a follow-up doctor appointment with your urologist and she’s talking to a doctor in training about what had happened to you and says “on the ambulance ride here, she went into septic shock. She needed to be resuscitated and that is why she needed to be in ICU.” I sat there in disbelief, still not feeling as if I was that bad off.

May 2, 2018

I wanted to write this down before if fades into distant memory. Everything is still very vivid, even though it was a month away.  

It all started the Wednesday before Easter. Easter is always a bit hard for me as my last Easter with my father was spent with him on a respirator while he was in ICU slowly dying of something that we were not sure what it was.

So my mom called me early in the morning upset because my sister (who is 18 years younger than me) was up all night vomiting and had diarrhea. She is also six months pregnant. I agreed that mom taking her to the hospital to be checked out would be a good idea, but also told her that it was probably just a virus and that she would be ok.

Later that morning mom called me back and was very upset, nearly screaming as she talked to me, saying that they had taken my sister to get an ultrasound done to check her gallbladder, and I asked if she was ok, she said yes. But as mom had walked out of the room to the hallway, she saw my sister-in-law walking down the hallway. My sister-in-law said that they were bringing my brother in to be checked out because he was having severe stomach pains. (my brother is 15 years younger than me – just a little FYI – I’m the “old” sibling)

My mom was upset telling me to be careful and to watch myself. I told her that would be fine and that I wasn’t even planning on leaving the house (since I work from home). Later I hear from my brother and sister-in-law who tell me that he was in for a kidney stone (the first he’s ever had) and my brother said that there was an extra bed there, we could make it a family reunion.  I told them not to jinx me.

My sister just had  a virus and would be ok.

Around 2am Thursday morning I woke up with a sharp pain in my lower right abdomen.  I haven’t had my cycle in about 5 months so I wasn’t sure if it was just an ovary trying to start up again, so I got up and went to the bathroom. But that didn’t help. I tried to lay back down and ended up getting back up and walking around for a few. Still didn’t help. I started Googling appendicitis since it didn’t seem like a kidney stone (I’ve had several but the last one was 14 years ago).

My husband woke up and asked me if I was ok. I told him no, that I felt that he should take me to the hospital. So, off to the hospital we went.

After some bloodwork and a CT scan, I was told that I had a kidney stone, only 3mm, was given some Percocet and some anti-nausea medicine and a strainer, was told that I should be able to pass it. And they sent me home.

Mid day I passed two stones, one 3mm and one 6mm.  I was happy, stones out which means that I should be feeling better and we could leave for Delaware to spend Easter with my in-laws which makes my Easter something to now look forward to.

Later that night I had another sharp pain in my lower right abdomen and I thought maybe I had another stone.  Well, it’s possible, I guess. But this one didn’t hurt as bad so I went back to bed. 

That’s when it started, I woke with shivers so bad that I couldn’t control them. My teeth were chattering, my entire body was shaking to a point that it seemed like I was having a seizure. This lasted between 20 to 30 minutes and didn’t subside until either I warmed up or the pain stopped.

These shakes happened again in the morning and a couple times throughout the day. I just didn’t feel well. I called off work again as I sat at my desk I realized that it just wasn’t going to happen. 

My husband was working and the kids and I were to be packed and ready to leave for Delaware by the time he came home.  I tried, I would take a few moments and move some pile of clothes around, I’d get the kids to gather their stuff and then a shaking episode would come on and all I could do was lay in my husband’s recliner and pray to be warm. I couldn’t eat, I didn’t eat anything on Thursday and again, I couldn’t bring myself to eat. I drank water, loads of it.

But my urine output was starting to worry me, because all of the water I was drinking didn’t seem to be coming back out. Then I capped out with the water. My body just had enough and I threw up some of my last bit. 

I told the kids that they should still leave for Delaware and leave me home to rest.  They argued with me a bit but not too much, just said that we will talk to dad about it all.

Then I had another shaking attack. This scared my son who called his girlfriend over to sit with us.  At the time I didn’t know what was going on and what they saw happening to me. I just figured that my body wasn’t healing as well now that I’m older.

My husband came home, took one look at me and waved his hand in a circular motion in the air to tell me that we were leaving. He said, “come on, back to the hospital with you.”  I protested mildly and felt bad that this may mean we spend Easter here.  But on the drive out, I thought that maybe it would be nice to be here for this Easter, to celebrate with our family, just do something different.

We get to the ER and I  walked in and got checked in while my husband parked the car. They gave me some pain meds, started an IV with fluid, checked my vitals (not in that order), then sent me back for another CT scan and more bloodwork.  And again another shaking attack but this time the nurse gave me some pain meds which calmed the attack.  They also gave me some potassium as my levels were low.  Somehow in my mind I thought that possibly that was my whole problem, low potassium.

After a while the doctor came in to talk to my husband and I. She said that there was not a urologist on duty nor available that they could send me to so they would need to send me to Erie (which is over an hour away). I told her that I didn’t understand, I wanted to go home. She told me that I couldn’t go home, they needed to send me to Erie right away and an ambulance was on it’s way.

This is all out of my hands now. All I could do was sit back and look at the worry in my husband’s eyes. We sat quiet for a time then I told him that he didn’t need to go with me, it was a long drive, the kids were home alone (they are old enough and would be ok at 18, 16 and 14), but I knew he was tired from working all day and it was nearly midnight at this time. I told him to go home, rest and come up in the morning when we would know more. Amazingly, he agreed.

The ambulance came, I said my goodbye to my love and I was off. I felt amazingly comfortable, settled, it was an odd feeling, nearly a floating sensation.

But on the way up, the EMS tech kept messing with the blood pressure cuff, he seemed worried. At one point he said to stay with him. I was, and I told him that. Then he started another IV fluid, putting the needle in my left hand. I asked him why and he said that he needed to get more fluid in me. It hurt and I told him that I didn’t understand, I felt fine. He still kept messing with the blood pressure cuff and checking my blood pressure. 

The ride seemed to go smoothly besides the blood pressure and IV issue. Before I knew it, we were at the second hospital for the night. 

They wheeled me into the ER and a younger male nurse was taking the information from the EMS tech. There were several people in the room they took me into and one was a younger female who was sitting along the wall and she said to me “it’s you!  Dude, I’ve never seen anything like that before,” I look at her questioning, then she says “I’ve never seen anyone push a stone back into the kidney before!” I looked at the male nurse questioning. Then the on-call doctor came in and introduced herself. I asked her about the additional IV as it was still hurting my hand. She said that they needed to leave it in as my blood pressure was still low. The nurse was asking me, if I go into cardiac arrest, do I want them to resuscitate me…yes. Do I have a living will?  No. Do I have a will? No. I watch their faces and at the last question, they seem concerned.

They were getting ready to send me out to another CT scan but wanted the urologist to see me first. 

Then She came in, the urologist. She was a no-nonsense, matter of fact, this is how you are going to do things type of doctor. I loved her immediately. She told me that I had a third stone, it was up by the kidney and somehow it was pushed back into the kidney, blocked it and ruptured it.  But she said that there was something else going on.

Off I went to the CT scan, more bloodwork then the doctor came back in. They were going to put me into ICU for the next few days. They need to stabilize me.

I ask her to call my husband and let him know what was going on. 

The male nurse was nice and peppy, he and another nurse pushed me up to ICU, talking pleasantly to keep my mind and mood light.  

They get me settled into my room, the nurse talked to me and tried to find out what was going on.  Morning was right around the corner, I needed to wait until the tests come back and they can let me know what is going on. The nurse assured me that they had called my husband and everything would be ok. I was exhausted and had no desire to do much more now then to just sleep, close my eyes and leave everything. 

Again the shaking attack happened and I begged for pain meds. We did find out that I could not handle morphine, so what else. They gave me something,  what it was, I don’t remember, but if it stopped my shakes, I didn’t care. The shakes were scaring me, something was not right.

I didn’t feel like talking to anyone, looking at anyone or anything. I could care less where my belongings were. I was in a tough spot. 

But every time I closed my eyes, I would see this capsule of various shades of purple encircling me. Sometimes there was a tunnel that extended out in front of me and at the end was this black figure only about 1/4” tall. The funny thing is, I knew that this was my father. 

My dad had one kidney stone in his life, had it surgically removed, then later that year (1992) his kidneys failed right before Christmas. He died that next April, he was 50. This was on my mind as I lay there with my eyes shut, shutting the world out.

I tried to walk down this tunnel, all I wanted was a hug from him, to hear his voice, to know that everything would be ok, either way it went.  But each time I tried, he would back away, close off the tunnel and just keep me encased in the purple capsule.  

I was a bit frustrated.

Then I would wake and a nurse or tech would be checking my IV, or taking more blood, checking my blood pressure, just checking, fussing. 

The urologist came in and told me that they had an infectious disease doctor looking into my samples as there was an infection percolating in my blood (she actually used the word percolating). Great, my dad died of something that was eating away at his organs.

I told the doctor this just so she knew my fears.

I had talked to my dad’s urologist while I was spending time with him in ICU, they had to do a blood transfusion, I can’t remember which one, third, fourth, it’s just so long ago. But each time they would try to do a transfusion, he would start to panic and nearly go into cardiac arrest. I explained to his doctor that he was remembering that his father died of a bad blood transfusion. So they agreed to not let him know or see when they did the next one. Which worked, but didn’t save him.

So here I am, telling my urologist about my fear…because no one was there to do so for me.

She tells me that the infectious disease doctor would be in shortly, she’s working on finding the right antibiotic that is needed to kill what is in my blood. She also wanted me to have a catheter put in. I really don’t want any more pain, I didn’t want the catheter, I can make sure that I get up and use the toilet in the room, I don’t care who is around, I don’t care if someone sees me naked, I just don’t care anymore.

My husband was on his way, I knew this, it’s just such a long drive.

The infectious disease doctor came in and told me that I have an infection in my blood, she had put out 9 dishes of my sample to figure out what antibiotic(s) would work to kill this infection. This scares me a bit. She assures me that she will find the right antibiotic and she will make me better. 

I still have a stone to pass.

My husband and kids arrive and they look concerned. I’m still not wanting to talk, to look, to visit, but I try my best.

I lay there with my eyes shut, slipping in and out of sleep. While sleeping, I would still see the purple capsule and my dad, this relaxed me, comforted me.  Then at times it would all be gone and then an eye would appear above me, I would watch this eye for a long time. It gave me such a strange feeling, a sense of peace, of comfort. Then the area around the eye would expand and it would be the eye of an elephant. 

How funny, I thought when this would happen. I didn’t say a word to anyone, just took it all in.

When I was awake, I took in the sound of my family around me, listened as the doctors talked but could only remember a bit of what they said. 

Back out I’d go, tired from trying to keep my mom, sister and brother from coming to visit I just couldn’t handle more people and only wanted my family there. 

Again, as I slept, I was visited by my dad and by the eye, the elephant.

That went on through most of the day. My family left, reluctantly, and left me alone. 

The urologist came in and fussed that the catheter wasn’t in. She explained her reasons why it was necessary and in it went. It hurt. But I agreed, it was necessary. It made things easier on me. 

So now I had two IV’s, one in each hand. I was starting to get a nice set of black and blue tracks up my arms because of all the bloodwork. It made me want to cry. I also had heart monitors on, six sticky things on my chest. A blood pressure cuff that gave me a feeling as though it is permanently attached to my right arm. And now a catheter which they taped to the inside of my right thigh to secure it (later I would find out that there was a plastic disc that was used and not just tape).

Then through the night Saturday night while still envisioning my purple capsule, and the elephant, I had a quiet time of peace. It was dark and no one visited. Next thing I knew my dad put his nose on my nose, forehead on my forehead, looked me right in the eyes and said “wake up”. I woke up and the nurse was over me putting oxygen tubes in my nose. 

I asked what was going on. She said that my oxygen absorption was low and she needed me to have the oxygen in my nose for a while.

I rested back, as morning was coming again. It was Easter. I thought of the last Easter with my dad. It snowed. I sat next to him, watched TV with him and told him it was snowing and wished him Happy Easter. I did so again, whispering it in my head knowing that he would hear. 

I am 50, my dad was 50 when he died. I had just announced a few weeks ago that I was officially older than my dad, by mere weeks.  What was I thinking?

More bloodwork, draining my catheter bag, checking for a stone, checking how much fluid I’m passing. Giving me a heparin shot in my stomach….ouch.

Then aids came in to give me a sponge bath. I had never had anyone do that for me before. I couldn’t care what they saw. This was so odd for me. A thought went through my head…when you die, do you feel the mortician working on you, cleaning your body? Another thought “stop it!” 

Then my husband and kids arrived. No mention of Easter. The kids came and went, going out to the waiting room, going down to get a bite to eat, they were learning their way around. 

My heart broke for them. 

I told them that I had tried to eat something – the first time since Wednesday that I had eaten. Who was I fooling, I barely ate, but at least I did have something.

I wanted them to stop worrying.

The doctors came in and talked to my husband and I. They found an antibiotic regimen, they would start it through the IV, it was a positive thing.

I had sepsis with e coli running rampant through my veins. I’m not sure what it was and where the e coli came from, but it was killing me.

My family left, I missed them. My husband had rubbed my legs, rubbed my head, both of which were hurting. The kids were restless. I know how hard it is spending so much time in the hospital with someone who is not able to interact with them. 

Again, when I closed my eyes, I saw the purple capsule and the tunnel with my father or the eye and the side of the elephant face.

I remember thinking, the eye of God, God will appear to you but not in the way that you would think. He came to me as an elephant. This made me giggle – quietly.

Something happened Sunday night. Something broke, something changed. I had different visitors. I floated up out of a deep sleep to “see” two black women working over me down by my waist. The lady on my right was taller. They were both thin and had such a beauty about them with absolutely beautiful dread locks. They were both mesmerizing. I watched and they “worked” over my waist area. They spoke in a language I could not understand and often barely speaking at all as if they were communicating telepathically. They seemed so sweet, so relaxing, and I floated back to sleep.

That morning, I woke when the “vampires” came back in to get my bloodwork. But I felt better. I had still needed the oxygen on and off through the night. But I felt different…better.

A bit later a tech came in with a machine, he was to do an echocardiogram. I had never had that done before. I was slightly excited and yet nervous at the same time. I was so worried about my heart, about blockages, about issues. He told me that if I cooperated and didn’t ask questions, it wouldn’t take very long. I listened, moved how he needed me to move. He was pleasantly happy with how well I listened and my heart cooperated. He asked if I wanted to see my heart…of course I did!! He was patient and showed me the images and now he measured parts of the heart. I asked if it looked ok, which I wasn’t sure if he would even be allowed to tell me. I told him that I understood if he couldn’t. He told me that if there were any issues, the doctor(s) would let me know, but as far as he could tell, my heart was healthy and would carry me through another 50 years. That made me so happy to hear.

After he left, I got antsy and wanted to move around. I had to use the bathroom but was nervous since I still had the catheter in me. 

With approval and assistance from my nurse, I got up out of bed, sat in the chair and ordered a breakfast. I ate cereal and it tasted wonderful. I took pictures (really the first time I worked with my phone in days). My husband was on his way up to see me, he told me that the kids were going to stay home. That was ok, this was tiring them all out. I hoped that the picture I sent would make them feel better about staying home. 

It worked, they were happy, excited, encouraging. It brightened my spirits.

I tried to stay in the chair to see my husband and surprise him.

The urologist came in and was beside herself to see me in the chair. She said “look at you!  Two days ago you were dying!” she was serious. This scared me.

We talked about my dad, and found that sepsis had taken him, killed him. But it wasn’t taking me, I was breaking a cycle, breaking a curse.

Both doctors were encouraging, saying that the medicine was helping and with luck I would get to move out of ICU soon. One step closer to going home. 

I had talked the nurse into moving my blood pressure cuff as it was tearing my arm up. When she did, we found a large black and blue mark on my bicep. She was happy as my blood pressure reading leveled out and was more normal. It had gotten to the point that every time the cuff would start, I would tense up and that would make my pressure reading higher.

I was tired of sitting. I never knew that sitting would be such a workout and so hard. I had to get back into bed. Shortly after that my husband arrived. He seemed happy to see me, saying that my color was much better.

The urologist came by and talked to him as well. It was nice that the doctors made sure to talk to him.

They were now talking about the possibility of moving me out of ICU if I continued to improve.  One step closer to home!

My husband sat with me, stayed and talked to me or just watched TV. 

More heparin shots. By this point I was getting very good with needles, which is so not like me. The urologist also wants to add Flomax to help with passing the stone. Pill, I can’t stand them, can’t swallow them and absolutely hate the ones I can’t break up to swallow easier. I was getting better at swallowing pills as well.

I also have to take a couple potassium pills. They are huge! I couldn’t swallow them so the nurse was kind enough to crush them and gave me some applesauce to take them with. 

Later that day the urologist came in. She still is no nonsense, telling me what I need to follow a strict diet now so as to not end up going through this again.  A diet. But thinking about this, is it really terrible to change my diet if it means I get to spend several more years with my husband and kids? Something that my father didn’t get to do? Yes, it’s worth it.  She also took the catheter out. I was in heaven! It hurt but I loved it!

While I waited to be moved, I checked my leg as the plastic disc was still attached. I hadn’t realized just how soft the skin is on the upper inner thigh. A nurse came in to help with removing the tape and disc. It hurt like hell and nearly felt as though it was going to rip the skin right off of me. Then I saw it, yet another black and blue mark.

They finally move me to a regular room on the urology floor. I have no idea where I am except that I am still in the hospital. My husband helped to bring my bags of belongings down to the room and stayed while we worked on getting large rubber gloves over my hands…I was going to take a shower! A real shower! Something I hadn’t had since Thursday late morning! I didn’t care what the shampoo was like, if my hair was dry, if my skin felt dried, it was soap and water! I could get places that haven’t seen water in days!

I came out to find my husband still sitting there. It was a quick shower as I felt so wore out, like I had walked 3 miles in 20 minutes. He was sweet, got me settled back into bed. 

It was nice, I had a private room, a private bathroom and a place to take a shower. But I had hopes of going home soon, just needed to regulate a few things and pass a stone. 

The X-files was on TV and my husband left me finally knowing that I was going to be back to normal.

I hadn’t watched TV in days, I laid there until midnight soaking up life. 

Every time I use the toilet, I have to sit on a “hat” and then my urine is checked for a stone. I had started with blood each time I urinated. The urologist wasn’t worried. I had cramps or pains, not sure which. They gave me a mild pain medicine which helped.

Tuesday morning I am beginning to think that my cycle had started. I hadn’t had a cycle since late September. I had been going through menopause and had hoped that I was done with my cycle. But I looked at it as though this was my life starting over again.

It was still very early in the morning, the vampires came in, then the nurse with my heparin shot, then another trip to the toilet. Each time I go I need to call the nurse so they can dump the “hat” and check for stones.

Then something amazing happened, I passed the stone! My nurse was so happy, it was as though I had the first stone in history. We put it in a container and placed the lid on nicely. 

A few hours later the infectious disease doctor came in to talk and check in on me. She was genuinely happy to see me as I was, up, eating, healthy(er). She took me off the IV antibiotics and was writing me an order for pill form!

Then the urologist came in, I told her I passed a stone and handed the container to her. She was even more excited and told the nurse to send it off to be tested. I may actually get to go home! 

I had asked her about the blood that was in my urine and she didn’t seem too concerned. I took this to mean that I really did have my cycle. I suppose that there wasn’t any harm in having my cycle…again.

The doctor decided that I could go home. All my labs were coming back better. Although I did need to get a CT scan first. A few things to keep in mind, if the stone I passed was not “the” stone that caused the rupture of the kidney, and if I don’t pass “the” stone, I would need surgery. I have never had surgery so this scared me.

This was the first day that my husband hadn’t come to visit. He was out working. I sent him a text and he was so excited – as was I.

The day drug on, slowly, now that I know that I’m going home. I ordered lunch and while I waited, I took a walk around the hallways. I got back just in time for lunch to arrive. 

Again the afternoon went slowly, it seemed forever. It was coming up onto dinnertime. Do I order dinner or am I getting my CT scan and going home?  The nurse I had talked to me and said that they weren’t sure when they were going to do my CT scan but it would happen and I would be going home, the papers were all printed. He brought them in so I could sign them.  One step closer.

We decided that I should go ahead and order dinner since it was after 5:00. He then came back in to tell me that he had called down to see where I stood on my scan. They told him maybe 30 minutes. What to do about dinner. He told me that he would put my plate in their personal refrigerator and then into the microwave to warm it up should it need heated up. 

My dinner came and I was able to eat it before they came to get me for the scan. Things were coming together!

My husband had text to say that he was on his way up.

I had prescriptions that went along with my discharge papers, one was for the antibiotics.

Now it was just the waiting for my husband to arrive.

When he walked through the door it was the most beautiful sight I had seen. 

Walking out of the hospital I couldn’t shake this feeling that I was a new person, a new beginning, a curse that had been broken. This feeling had lasted for a few weeks.  I am blessed.