Bodies...

Bodies are capable of amazing feats of magic. When I think about the thousands of needles that have been stuck into my limbs, the many times scalpels have sliced through my skin, the vast array of chemicals that have made their way through my veins, the many machines which have scanned and penetrated its surface and the incredible amount of probing and prodding that my five foot tall body has endured – it is amazing that I sit here today.  And I am painfully aware that it must be able to handle more if I am to live, but I honestly feel like there is only so much more it will be willing to grace me with.

 

Prednisone, a steroid used for the transplant, has wrecked havoc on my body and resulted in Adrenal Insufficiency. This means my body can no longer react to stresses the same way and my temperature and blood pressure drop. It is not pleasant. My eyes and skin have also begun to be affected by the Prednisone. If I scratch my arms with my nails just slightly on some days, the skin turns red with bruising. The blood vessels pop in my eyes almost weekly now, when before it was only every few months. I was diagnosed with osteoporosis a few years ago thanks to being so sick before the transplant, and I can feel my bones hurting in my hips, feet and more. My allergies have progressed into serious and constant sinusitis and blockages. The neuropathy in my fingers and lips comes and goes, still without a real diagnosis other than a result of certain antibiotics I was told to take over and over again. It stopped in the bottom of my feet which is good.  

 

Ah, doctors and their antibiotics That is a chapter all by itself.

 

These are just a few of the many issues my body puts up with every day. But, the joke really is on me because my body also decided that I should go into menopause early a few years early. The joke being that the Adrenal Insufficiency and pre-menopause both do similar things to your body, and have similar side effects. What’s not funny is that no doctor, and I have been to several believe me, will help me.  I am too “complicated” to help and have been left to fend for myself once again. Hence you can add being totally exhausted but not always able to sleep, not being able to wear pants or tight clothes anymore because my full-body sweating has become so bad that even the slightest fabric makes my infections worse, sporatic heart palpitations, never mind the ability to cry at a moments notice which is always ridiculous…and plenty more.

 

A family joke, although it’s not so funny, is that if I plan something important, undoubtedly my body will rebel right before and I won’t be able to go. Just ask them how many times this has happened over the years. A trip to Canada, a family wedding and the list goes on.

 

My body. It is my best friend and my worst enemy. It is my savior and my executioner. Every scar has a story to tell and every imperfection has been earned. It is all mine and it is all me.

That's Why They Call it Practice...

We all know anyone can go to medical school and become a doctor if they have the money, time and dedication. We would also all like to believe that these people do so because they want to make a difference. Even more so, we would like to believe that they have the answers to what ails us. After all, that is their job, right!

 

Several years ago I started having issues with my face going numb, my fingers tingling and my feet doing the same. The symptoms continued to get worse and I could not eat or barely function as I sat at work. I went to a doctor who sent me to another, who sent me to another. At first they thought it was Multiple Sclerosis so I had a brain MRI. Then one thought it was allergic reaction to something in my environment so I dealt with all that involved. Then one sent me for needle testing in my legs to check for muscle issues. That experience really sucked. Then I ended up at a Lyme Disease expert because someone decided that was the answer. Mind you this was weeks and weeks later and I was really sick by that time. With each doctor we talked about my medical history, my medicines and everything else. I asked all the questions I could think of without knowing what I should really be asking, most of the time with the usual lack of real answers.

 

As the Lyme disease expert and I spoke I brought up the fact that the antibiotic on my medicine list was prescribed to try as a maintenance drug to see if it would help with my infections. Something I had mentioned as part of my medicine discussion with all the other doctors. It was a medicine I had taken a lot as a child. He excused himself from the room and came back with a pharmaceutical book and looked up the medicine. Right there in black and white it listed the exact symptoms I had been having. I stopped the medicine and got better.

 

As a friend said soon after…That’s why they call it medical practice…

 

 

 

Hospital Memories...

Is it strange that I am more comfortable being a patient in a hospital than being a visitor? Well, it’s true. I realized that not too long ago when I took someone to the hospital and sat with them in the room while they went through the usual admitting procedure, poking and prodding. It’s difficult to describe, but I am so familiar with the hospital experience after all these years that it feels strange not to be the one in the bed. It feels wrong.

 

Anyone who knows me well knows that I rarely tell anyone when I am admitted until the process is over and I am settled. Even then I only tell those who need to know. It's been like that since I was in college many years ago. This goes back to the fact that I AM so used to the process and need to deal with things in my own way. Having someone there sitting and staring at me while I go through the process drives me crazy. The last thing I want to do is have to babysit someone else, and that is what ends up happening because even though visitors are there because they care, they are the ones that need the moral support! And, yes, this is the same for doctor visits, tests and everything else.  I can count on my hands the times that I have had company for these things. It is a strange side effect of having this type of life, at least for me.

 

So many memories are wrapped around hospital visits and stays. For example, where was I when the space shuttle blew up? I was walking through the hall of a hospital about to enter a room to sit in a very uncomfortable machine while radiation dye flowed through my veins. Always a wonderful experience, not. For some reason there was a TV in the hallway and they were announcing it on the news. I remember it like it was just yesterday. And where was I on 911? Just walking into my home from another hospital visit. I opened the front door just in time to see the second tower go down.

 

It’s 1983 and my stepmother and I are running into the bathroom of an Amtrak station, my first public outing after several months in the hospital.  After being there so long, I have lost weight and am weak. We are rushing to try to make the train back to Virginia. Back to “normal” life. I was admitted for longer than expected due to several complications after having bladder augmentation surgery, which was serious to begin with. The major complication being that a doctor forgot to schedule me for a procedure to take out one of the tubes in my abdomen, so it decided to make itself a permanent part of my insides. I can’t remember if that is before or after my stepmother found me lying on ice and very, very cold. Seems I had a high fever and the ice was supposed to cool me down, but they left me on too long. Let’s just say it was a very long stay. Now years later, the physical scars are the biggest reminders, but the flashes of moments in time still appear. The wonderful feeling of having someone wash my hair while I lay in my bed after weeks of no bathing, the mother of the girl next to me who would visit and pray by her daughter’s bedside, and then come to my bedside to do the same, the poster of Tom Selleck on my wall to keep me company. But, the feeling of panic as we tried to catch that train stands out the most.

 

Would you believe me if I said that my kidney transplant was the easiest surgery and experience? Probably not, but it’s true.  Maybe because I was older and so sick that my body was literally dying that the rest seemed easy. Or maybe because the experience was literally saving my life that anything bad was trivial. Even as I was wheeled down to have an MRI after the surgery because they thought there was a problem, and I proceeded to projectile vomit all over the poor MRI technician thanks to too much morphine. I remember being so thrilled that the first thing I was handed after the surgery was a bag of potato chips to eat because I needed the salt. I had gone so long unable to really digest food without taking pills first, and not being able to have any salt or other things. The liquid potassium supplement I was supposed to take when my kidneys really began to fail was so horrible that I did not take it as much as needed and I ended up becoming paralyzed. I had told my doctor many times that I could not take it, but nothing was done. The timing of the paralysis was unfortunate as it hit at a family holiday dinner and I had to be carried to the hospital where I was told that my heart was the next to go if I had waited any longer. My family was not amused.  But, I digress.

 

When they admit for a transplant they keep the donor and recipient at opposite ends of the hospital so that there is an incentive to get up. At least that is what they did at the hospital we were at. I was extremely unhappy with this because Dave, my boyfriend and donor, was a big baby and didn’t even like going to the dentist. The fact that he had matched as well as a brother or sister and was willing to donate was amazing, yet I felt a huge responsibility for him. The night before the surgery we were admitted and I sat in his room and gave him some insight and advice into what would happen. I told him that he would have a morphine drip and that he could click on the button if he was in pain. I hated the fact that he would be in pain and I would not be there to help. Well, turns out that as I was being wheeled down to that MRI machine he was clicking away on that drip and watching a basketball game on the TV above his bed. Nothing could keep him from his sports, even major surgery! As with most donors post surgery, his face was swollen and he looked terrible, but he kept clicking away. I found out later that his drip had not been working the entire time and I was so upset. When I finally saw him and found out, I asked why he didn’t tell someone and he said “Well, you said it would hurt.” Needless to say a little guilt was added to my mix of emotions. I remember a blur of his family and mine milling around and the usual drama when you get that many people together in a stressful situation. A week later we were both sent home with a heart shaped pillow to press against our incision when we slept and as we both shared a very small bed at the time, and he was a very large man, it was like a comedy routine trying to get in and out of bed. We both used those pillows until they were tattered.

 

It was early 2012 approximately and I can’t remember anymore why I was in the MRI machine that time, whether it was routine or diagnostic. But, the few months that came after I remember well. My Nephrologist at the time called me to tell me that I needed to have another MRI to check a few masses that they had found. He was not overly worried about the ones on my liver and elsewhere, but there was one they saw inside my transplanted kidney and he thought it was a cyst based on the way the blood flowed, but wanted to make sure. Allowing myself to go with the cyst explanation so that I could give myself the time not to worry, I went and sat in the loud annoying machine again. A week went by and I allowed myself to think about it only a few times as I waited for what seemed like forever. The call came when I was at work and the bad news was delivered, it was cancer. Good news was that it was a very slow growing cancer, bad news was there was really only one doctor in a nearby state who had enough experience to treat me. Having a tumor growing in the middle of a transplanted kidney is not common, so of course it would happen to me! Long story short I ended up moving to where I grew up, where the hospitals are world famous and where I knew I could be treated by a team rather than one person. After months of different issues and many rescheduling of a biopsy due to my infections, I finally was scheduled for the actual procedure and the day came. The plan was for them to freeze and thaw the tumor, over and over again. This, of course, is done with the help of an MRI. So, I was sedated just enough to be slightly aware of what was going on, but still enough to lie without moving as I went in and out, and in and out of that machine for hours. Or at least it seemed like hours. I remember the knocking and pinging of the machine through my haze and voices that I could not tell if were mine or someone else’s. That night as I lay in my hospital bed I swore that my brains had been fried, and the next morning when they put me back in that dreaded machine again I felt like my bones were all shaking from the inside. The shaking did not stop for days after I was discharged. After all was said and done I was incredibly lucky that this procedure worked and that was all they had to do. I am due for my yearly MRI check of the mass in a few weeks and, as usual, will not think about it too much until the day comes. Worrying does not change anything.

 

Sepsis is a word that many people have never heard of. Unfortunately, some people learn about it when it is too late and they are in the hospital. Even worse, many of those people never leave the hospital. I had heard of it, but one morning in January 2015 I woke up and felt a worse kind of terrible than normal, not that there really is a normal for me. I knew something was wrong, but turns out I was so sick that I was not able to understand how sick I really was. Sort of like when you are so tired that you are no longer tired and your senses are not working properly. I drove myself down to the doctor and had some lab work done. My blood pressure was very low and my temperature was as well, but I said I was okay so I was allowed to go home. He called me a while later and said my counts were horribly off and I needed to go to the hospital right away. After driving the dog to a friend’s house I went to the ER and was told they would not be able to help me and they wanted me to go Boston, and hour away. I was very upset, mostly because I had animals that needed me and I was not sick enough anyway…I pleaded!

 

My pleas went unheard and shortly after I found myself lying in the back of an ambulance. That’s when the delirium set in and so did the real pain. The sepsis had gone through my transplanted kidney and into my bloodstream, the result of a partial bowel blockage the week before and a one night stay in another hospital.  Or I should say the result of whatever was done, and not done, in that hospital.

 

 I tried not to cry in pain as every bump the ambulance hit felt like a hit directly to me. The technician who was sitting behind my head filling out paperwork humored me as I joked about what was happening through my delirium and cries. Something which unfortunately comes too easily for me after all these years. It felt like forever before we arrived at the hospital and I was wheeled inside on the bed. Several people in white coats came and stood over me, and the dreaded wrist band was put on. The next few days were a blur, other than the painful and frustrating experience of having my IV blow every day and having to have it replaced somewhere new. No one goes near my hands for an IV unless they want to be punched, so they tried my wrists even though I told them they blow immediately…which they did.

 

I don’t get scared often, but part of the process to flush out the infection is to fill you full, very full, of fluids. This causes your body to swell to a massive amount, and certain parts of your body do not tolerate this very well.  Mine was no exception. The fluid went into my lungs so I had to sit and sleep sitting up for a few days, my face was burning and itchy from the skin stretching, I was unable to bend my sausage-like fingers or my wrists, and the worse being that I could not figure out how to use the bathroom because the swelling was so bad. I have to admit I had a little freak out. I was definitely scared the swelling was going to kill me if nothing else did.

 

Finally, several days later, the swelling went down and I was feeling well enough to move around the room. The problem is that when I get to the point where I am feeling okay enough to get up it does not take me long to start pacing. And that is what I did for the next week and a half while they continued to pump antibiotics and fluids into me. Unless you have been trapped in a hospital room for weeks at a time you cannot comprehend what it feels like to look out the window at the world and the longing to be free I have had this experience more times than I can count. Even a cold rainy day appears perfect when you are breathing stale dry air and shivering under several blankets, unable to get warm no matter how many you pile on.

 

As I stood gazing out my window one morning, with my IV pole as my shadow, I noticed all of the activity in the windows and hallways of the building across the street from me. The medical staff and the public all making their way to and fro, oblivious of what was going on around them. Scanning the floor above I noticed that each window had children sitting on what appeared to be cushions lining the window. In one room a group played together, in another a young boy and an older man sat and talked, in another a young girl with curly blond hair sat among adults and held a toy. What they all had in common was that they were in hospital gowns as well.

 

I spent most of my time after that watching the children and documenting what I saw. The boy became my main focus as he often sat in the window with his hand outreached on the window pane while he peered longingly at the street below. Sometimes appearing to yell down at the people and waiting for a response that would never come. His other hand was wrapped around his IV pole which, when he got up to walk, he steered like a pro. The man, who I came to believe was his father, came at night and slept on the cushion in the window. Occasionally a woman and an older child came as well and they all sat in the window and talked. The boy seemed distant and reserved, like only someone who lives with patience and solitude can be. A life I have known all too well.

 

When you are close to dying in the manner such as Sepsis, it is far different than the slow death of kidney failure, or whatever the little boy was dealing with. There is no pondering life or anything meaningful. It is sheer will to get through each moment. It was just pure luck that what they did worked for me. Three weeks after I arrived in Boston I went home where I had ten more days of daily visits to the local hospital for more IV antibiotics provided through the port which was put in my chest the day before I left Boston. My poor body has not been the same since that good time, but such is life. I was extremely lucky to be a able to go home.