Showing posts with label IVIg. Show all posts
Showing posts with label IVIg. Show all posts

Thursday, June 30, 2011

As Life Rushes On

Six days have passed since I last posted. Six sunrises and five sunsets. As I sit here at my desk in the early morning hours - the quietness of the house, windows open, birds at the feeders, dogs asleep at my feet - it's a familiar peacefulness. Much like the last time I sat at this keyboard to bring my thoughts to you. It's so funny how things remain unchanged - or better yet, constant. More like a river flowing. From a birds eye view we say, "Ah, there's the river!" Constant in it's "river-ness", but never the same. Changing with each molecule that rushes by. Hidden under the shiny blanket of familiarity.

                                                                                                                   Photo by David Ralph Johnson

This brings me peace. As I sit here, thinking about the rush of the river, the current of my life, I am comforted greatly by the things which surround me in this moment. Birds, breeze, sun, the smell of summer - I feel as if I am experiencing them for the very first time. These timeless gifts - all new, here for me, in this beautiful moment.

My mother and grandmother. 
The river has indeed been rushing. In my prior updates I wrote to you of the upcoming graduation and week of visiting family. Just a few days prior to that my mother was hospitalized with a stroke. It was a large stroke, but she was extremely fortunate in regards to damage and has been blessed to be recuperating at home. We have a small family - just myself and my brother, who lives in Louisiana with his wife and children. The fact that he was scheduled to be home this past week for our family gathering made things much easier for me. He flew home Sunday afternoon and I already miss him dearly.

My bother Jimmy.

Monday morning came all too quickly, and I was back at the hospital for appointments and IVIg. I don't know if it was the break in routine that came with a busy week of company or just my current state of mind, but I found myself quite contemplative this day. My first appointment was with the health psychologist that I see every two weeks and it might come as a big surprise (I say this with a tad bit of sarcasm), but I was extremely "weepy" at this visit. Hum...go figure!

I opted to sit up for my infusion this go around. I usually request a room with a bed, since I'm there for over five hours. But for some reason, this time I wanted to be more alert.

This is me. As you can see, I'm still awake. Prior to the actual infusion of IVIg, I get a nice dose of IV Benadryl, which usually knocks me out for a good four hours or so.

Before I entered into the "lights out" phase of things - I snapped a few shots for you...
Hook up. Standard conversation prior to "the poke". Nurse, "You have great veins! This should be no problem."
Me, "Looks can be deceiving. I have tough skin, my veins roll and are full of valves."

On average, this takes at least two tries. The good side of peripheral neuropathy...loss of sensation!

Blood pressure, heart rate and temperature. Standard checks before, during (every half hour) and after infusion. Handy little machine. Wish I was WelchAllyn.

Patient Pal.
Indeed! This great invention carries all the good stuff and is easily transported into places such as the bathroom. Unplug, hook and roll.

The curtain.
They all look alike. It doesn't matter if your in the ER, in an actual hospital room or sitting in the specialty clinic - they all accomplish the same goal and sound the same way when the doctor comes in.

Examination gloves by SensiCare - small, medium and large.
Stick to IV tape, smell funny and make great rooster combs when blown up. Powder-Free Nitrile. Well THAT's good.

Discussion topic at our house: Is it ethical to take a rubber glove home with you? Hum.

Baxter. That's the brand name of this device. 
Every time I look at this machine I think of my daughter's dog Baxter. Both small, both wonderful...both make shrill noises when upset. This regulates the flow of anything going into my veins. It's really quite amazing. I've learned to read the screen very well and can pretty much tell you what's going wrong before you look. Most times - just air in the line. The speed at which I receive my infusion changes every half hour until the max rate is reached. This prevents adverse reactions - which are no fun.

Lights out.
One last look at the clock.

The curtain, again.
There's a whole other story in this picture - I'll save it for another day. But I'll just say this - in a dark room, when you're sick, or afraid, or lonely - the light on the other side of this curtain almost feels like the light from another universe. It can feel as welcoming as heaven or as far away as "infinity and beyond". I've spent many, many hours longing to be on the other side - in both situations.
Yes, I have my shoes on. My feet are always cold!

Only recently have I entertained entertainment. I set things up before I fall asleep as it would be next to impossible for me to accomplish this after. Since there is no cell phone reception in this area I communicate with Dave and the kids this way. As I watch the Baxter and account for things such as occlusion, ten minutes for clearing the line with D5W and IV removal - I can predict my time of departure within about five minutes. A quick message to Dave on facebook and he is out front waiting for me when I'm done.

That was my Monday, in a nutshell.

Tuesday home. Wednesday back to the hospital to see my cardiologist. I've been struggling with some arrhythmia/atrial fibrillation/tachycardia  issues for some time now. Right before the big graduation festivities I had met with Dr. Chen and discussed the need for some minor heart surgery. We agreed to put me on a low dosage of medication and postpone things until after the graduation. That date was yesterday. I've been put on a cancellation list for July. If there are no cancellations, then surgery will be August 5th.

The surgery is called a catheter ablation and has much less risk than putting me on antiarrhythmic medications, which could potentially be life-threatening. A risk that is significantly increased by my diseases and the medications I am already on. If successful, I would be completely off all heart medications!

Today is Thursday, and as I sit here and write, the Governor of Minnesota and the heads of the House and Senate are sitting behind closed doors, only eleven hours from the second state government shutdown in Minnesota history. Their inability to to agree on a budget timely could mean the layoff of thousands of state employees and the loss of services to many of Minnesota's most vulnerable populations. My husband and many of my closest friends will not have a job on Friday morning if this is the case.

The river rushes on.

The birds, the breeze, the sunshine through my window - they cover me with a blanket of familiarity that still brings me peace. When all else surges by, I find myself motionless in this moment. Alive. Awake.
And I am completely aware that I have everything I need - right here, right now.

I wish the same for you. Whoever you are - wherever you are. Know that this is possible. Know that the greater the storm, the more beautiful the peace.

It's there - waiting for you.

Wednesday, June 15, 2011


Artwork by me. Inspired by my dear friend. 

I didn't always know how to breathe. In fact, prior to 2005, I did not realize that breathing was even something one paid attention to. I simply left the job up to my autonomic nervous system. Autonomic...automatic...autopilot...what's the difference? 

And then I met Jeana.

Jeana came into my life at one of those points when everything else seemed to be leaving. I had just taken a new job in St. Paul at the Minnesota Department of Human Services. I was also in the midst of the devastating collapse of a 22-year marriage and role as pastor's wife in the rural Midwest. Having raised our daughters in a town of 150 (of which we were 7), the Twin Cities felt much like stepping off a cliff in the black of night. Every single piece of my foundation had seemed to crumble away. It was truly my darkest hour.

One of the first gifts Jeana gave me was a framed piece of Japanese art. On this beautiful picture were these words, "Inhale. Exhale. Breathe In Life."  Little did I know the impact these words and this friend would have on my world. As the years have gone by, I have learned much about breathing from Jeana. Her direct and gentle persistence throughout the ups and downs of my days has not only changed the course of my life and the lives of my daughters, but has opened my heart and created a desire that at times seems almost unquenchable. A desire that continues this day to lead me down a path of self-awareness, acceptance and compassion. 

I've thought of Jeana a lot this past week. Hearing her voice, feeling her soft touch on my shoulder, reminding me to breathe. It's not so automatic, this breathing. The world sneaks in and the next thing I know, my shoulders are tight, my breath is shallow and life seems more like something that is happening to me than with me. 

View here!
In thinking about how this happens, something dawned on me the other day while reading  Pema Chödrön's The Places That Scare You. I mentioned a couple of posts back that she talks about emotions needing a story to proliferate. What she means by that is that whatever emotion we are feeling - whether it be anger, loneliness, fear or even emotions such as joy or passion - those emotions cannot exist if we are not telling ourselves some sort of story. If I'm really feeling sick and stuck in fear, I may be telling myself things like, "I'm never going to feel well. I haven't felt good in over two years. I can't keep doing this. Pain is taking away my life. I don't do anything. How will I get what needs to be done, done? The doctor's don't understand how this is impacting my life. I'll never be normal again...."  Consciously or unconsciously, I am telling myself some sort of story. Why? Because I get something out of it - temporarily. Kind of like a piece of chocolate cake in the middle of your diet. Short term...heavenly! Long term...not so good. It feels good to sympathize with ourselves. But in the end, it only keeps the negative emotion alive.

What dawned on me is that when I find myself sitting there, out of breath, this is exactly what I am doing. I have stopped being present in the moment and I have gotten myself all caught up in some story. The solution? Pema says, "Drop the story line and just abide with the energy." Ouch. We don't like to do this! I don't like to feel pain. I don't like to feel lonely. I don't like to feel hungry. I don't like to feel hurt. So what do I do? I try to get some bit of relief by telling myself a story. And it never works.

So, this week I put my enlightenment to the test, on two different occasions. My first opportunity was after IVIg on Monday. On a scale of one to ten, one being a fairly uneventful infusion and ten being plain old miserable - this one ranked at about a nine. I felt sick during the entire infusion and the days that preceded it were filled with nausea, digestion issues, headache and pain. At one particular point I found myself spiraling downward, contemplating all that needs to be done this week in preparation for a graduation party and a week filled with company. The story was pretty good.

My second opportunity was after hearing something less than desirable about myself. Whether or not there is validity in the statement has little impact. No one wants to hear about his or her shortcomings - real or not. It's painful to think that we are not perfect in the eyes of those we love. Especially our children. And it's easy to get caught up in trying to figure out the why or in trying to prove one's innocence. Another pretty good story.

In both situations, I was able to realize what I was doing and give the whole "abiding with the energy" business a shot. Was it difficult? You bet! Was it worth it? Absolutely!  First of all, stopping the story takes away a lot of the energy. In the situation where I was feeling sick, the minute I broke free of the story I felt a distinct peacefulness fall over my body. The pain was still there - in fact, there were moments where it seemed more intense and the temptation was to tear up and start the whole "woe is me" line - but I caught myself. And the more I was able to just abide with the energy of not feeling well, the more I was able to breathe. Soft, gentle, slow breaths. Just being.

In the situation where I had gotten my feelings hurt, stopping the story shortened the whole ordeal dramatically. Not only was I feeling better sooner, I did not aggravate the situation by responding inappropriately or making false assumptions. I realized the situation for what it was, allowed myself to just feel the energy of being sad, and moved on. Because I did not respond out of my hurt, because I was in control of my breath, a wonderful conversation later ensued and it was a cherished opportunity for compassion and growth.

"Inhale. Exhale. Breathe in Life." I am so thankful for these words and the reminder they have become for me to be present in this life. They have inspired me in so many ways - the books I read, the poetry I write, the paintings I paint. Breathing means being present. Being present means recognizing what's going on in my world. And as Pema states, "Never underestimate the power of compassionately understanding what's going on."

Blessed breathing to you.

Monday, May 16, 2011

Just One Of Those Days

Some days come much easier than others. That's a pretty generalized statement, I know. But so true, none the less. Some days life just seems to work out in our favor. And then other days...well, we just wonder, what the heck? We attribute it to things like bad weather, getting out on the wrong side of the bed and the infamous "them". You know, "them". Those people. The ones that work for the IRS, the ones that move our stuff, the ones that hide our socks and purposefully find us on the highway when we are in a hurry. Those people.

I write in jest. But for people living  with chronic diseases - those "some days" cannot only be frustrating, but they can be painful, relentless and frightening. Those "some days" come when you least expect them. They come in the middle of your best days, they come at family gatherings, in grocery store isles, in movie theaters, at the gas station, in the car, while getting your hair done, on walks with your children...they come ten minutes after you have just taken a shower, curled your hair and picked out an outfit to have lunch with a friend. In fact, the best way to insure their arrival is to make any sort of a plan at all.

Last Friday I began having one of those days. The first indicator was an increase in neuropathy. Numbness and tingling, shooting pain, unable to balance on one foot, right hand doesn't work 'right'. And then the stiff neck...and then the headache...and then the vision problems...and then the diarrhea...and then the painful joints and muscles...and then the pancreas pain and eventually my heart starts to beat irregularly, sometimes leading to tachycardia. Not a pleasant experience at all.

I managed through the weekend pretty well. That's a Mom thing. Taking care of my family is good for me. It's good for my soul and it's good for my mind. But by last night, things had progressed and after only a couple hours of sleep, we were contemplating a visit to the ER. Have I mentioned how much I despise emergency rooms???

We made it through the night and were at the hospital by 7:00am for an already scheduled appointment, followed by IVIg. I figured if there was anything that needed urgent attention, they would catch it. After a lot of blood work and a couple of phone calls to my doctor's, it was agreed that we could proceed with IVIg. Being that this is also my chemo day... well, it was just one of those days. Except...

This is what I came home to:

A couple of months ago I finally made the decision to have someone come into our home on a weekly basis and help me with cleaning. It was a very difficult decision for me to make. Learning how to give up control take care of myself has been one of the hardest things for me. Little did I know that the women on the other end of that phone call would be such a beautiful person. Within moments of our meeting, I realized what a blessing Roxi is. Simply having her walk in the door, I am filled with the positive energy that emanates from  her. Honest, kind, compassionate and SO easy to talk to, there is never a lack of things to say.

Somewhere in between cleaning houses, spending time with her children and grandchildren, church work, gardening, yard work and taking care of her own family - she prepared this meal for us. And this meal is not just any meal. This meal is a casserole made with fresh organic beef off the farm and tomatoes from her garden, canned pickled beets, home made buns and frozen sweet corn...from her garden, of course, and the most amazing looking home made apple pie I think I have ever seen. WITH apples from her trees!

Mother Teresa has a quote that says, "We cannot do great things on this earth, but we can do small things with great love".

This was an act of great love.

And this day, this "one-of-those-days" kind of days, I am thankful beyond measure.

Oh, and by the way....

It was delicious!

Thursday, April 14, 2011

Afghans and Angels

Yesterday was IVIg day for me. Not my usual Monday, but because of our trip to Florida, I had to rearrange things a bit. Most of the infusion time I spend sleeping. The IV Benadryl they give me beforehand pretty much knocks me right out. Since this is a six hour ordeal, I don't mind the nap one bit. In fact, I look forward to it!

Somewhere around hour three or four, I was wakened gently by the soft voice of this beautiful little old women. "Would you like a blanket dear? I have this one, or this one. I made them both and I would like to give one to you."
"To me? To keep?" I said.
"Yes, for you to keep. Which one would you like?"
One was quilted with a soft pink floral pattern and the other was a hand knitted afghan. As you can see from the picture - I chose the the afghan! How could I not? For any of you that know me personally, sunflowers are a big part of my wild flower garden. It was perfect!

Being extremely tired from the past weeks, combined with the Benadryl, I again fell fast asleep. If it would not have been for the soft blanket that lay across my lap when I awoke, I would have thought this silver haired lady was an angel in my dreams. But lucky for me, she was an angel in reality.

About thirty minutes before my infusion came to an end, I began to notice my heart skipping a few beats. I have a history of arrhythmia, so at first this did not alarm me much. Until those skipping beats got faster, and faster, and faster, with no reprieve. My heart rate eventually reached about 120-130 beats per minute - and there it stayed for over an hour. Needless to say, this is not something that the Specialty Infusion Clinic can handle. So I was immediately whisked to the ER where I spent the remainder of my day. Heart attack was ruled out first thing. But because of the presence of the anticardiolipin antibody in my blood, deep vein thrombosis, or blood clots, are the biggest concern. One of the tests they do for this condition is a blood test called the D-dimer Test. According to Lab Tests Online, the following is an explanation of a "positive D-dimer":

A positive D-dimer result may indicate the presence of an abnormally high level of fibrin degradation products. It tells the doctor that there may be significant blood clot (thrombus) formation and breakdown in the body, but it does not tell the location or cause. It may be due to, for example, a venous thromboembolism (VTE) or DIC. Typically, the D-dimer level is very elevated in DIC.

Well, mine was elevated. Normal range is about a .5 - mine came back at 1.3. So the next hours included just about every test under the sun for blood clots, including a lung ventilation perfusion scan where I was required to breath in (and be injected with) radio active isotopes! Not really what I had on the agenda for the day! In the end, I am happy to report they could find NO blood clots anywhere in my body. My heart eventually snapped back into normal rhythm, follow-up appointments with new doctor's were made and we were sent home.

If you have ever spent time in the emergency room, you are familiar with the "law" that ER rooms can not be above 58 degrees....well, maybe a little warmer, but it sure feels like 58 degrees. And any room that includes big machinery like x-ray machines or CAT scans falls even below that. It's never a good sign when you get wheeled into a room where the technician is wearing a sweatshirt and down vest!

painting by me!
I needed that blanket yesterday. More than I can even tell you. The comfort it gave me fell way beyond the warmth of it's fibers. I kept it with me the entire ER visit, through every test and even under the x-ray. I kept thinking about the hands that knit it. About the face that shown like an angel above my bed. I let it comfort me like my own grandmother - whom I thought of in my most difficult moments throughout the day. She made afghans, too.

There are so many good things in this life. So many good people. Some of them are still here with us and some are but memories. Some lay across our laps like blankets, or children, or pets and some just make up the fabric of our hearts. I find that when I am feeling alone, it's not the absence of these things in my life, it is the absence of my ability to be conscious of them.

This day, I have a lovely sunflower afghan to help me remember!

Sunday, March 13, 2011

Monday, Monday....

One of the major symptoms of my autoimmune diseases is peripheral neuropathy.Peripheral neuopathy describes damage to the peripheral nervous system. This is the communication network that transmits information from the brain and spinal cord (the Central Nervous System or CNS) to every other part of the body. They also send sensory information back to the brain and spinal cord, such as a message that your feet are cold or your finger is getting burned. Damage to the peripheral nervous system interferes with these vital connections. Much like static on a telephone line, peripheral neuropathy interrupts messages between the brain and the rest of the body.

Because every peripheral nerve has a highly specialized function in a specific part of the body, a number symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur. Regrettably, I am one of those extreme cases.

So, why did I give you this brief lesson in peripheral neuropathy? Because every other Monday I am admitted into the University of Minnesota's Infusion Specialty Clinic for six hours of Intravenous Immunoglobulin (IVIg) therapy to help control the peripheral neuropathy that is caused by my autoimmune diseases.

Specialty Infusion and Procedure Center

The Specialty Infusion and Procedure Center is a brand new department located on the second floor of the Phillips Wagensteen Building on the University of Minnesota Medical Center Campus. Prior to this new facility I received my IVIg either in the hospital or in the Masonic Cancer Center.  Both very good locations, but unfortunately not large enough for the growing populations of people needing infusion therapies.

The SIPC a beautiful, state of the art facility completely designed to meet the needs of the infusion patient. Offering both rooms with recliners and hospital beds, it is comfortable, quiet and fully staffed with nurses specialized in the administration of the many varieties of infusion therapy. This fact alone makes my bi-weekly visits much easier to tolerate. In a hospital setting nurses are presented with an almost unlimited array of patient/illness circumstances. This is even more evident when being hospitalized for autoimmune diseases - no one really knows where to "put" you. Most likely, depending on what part of one's body is being affected, that is where one ends up. For instance, if I am having trouble with my pancreas, I end up on the 7th floor in the GI department. If I am having trouble with my nervous system, I end up on the 6th floor in neurology. There is no floor for autoimmune diseases.

By having the specialty infusion center available to me, I avoid much of the suffering that comes with having nurses that are not specifically trained in IV therapy. IV's go in easier, infusion rates are better managed and overall "tricks of the trade" offer comfort and ward off potential problems. Being in a smaller more intimate setting also allows the opportunity to establish relationships with the nurses. With the risk of serious allergic reaction a very real possibility, it benefits me to have a nurse that knows my body almost better than I do.

Once "hooked up",  I receive two medications prior to receiving the therapy - benadryl and hydrocortisone. Both administered intravenously, these drugs help prevent an allergic reaction to the immunoglobulin. Since IVIG is a blood product (each lot containing the plasma from over 10,000 blood donations) the chance of reaction is always present. These pre-medications also serve another very valuable role in my IVIg experience....they put me to sleep! It's almost instantaneous. Within minutes of receiving the benedryl I am out like a light! And since this is a six hour process, that's a big perk!

 About four hours into the therapy I gradually start to wake up. This begins the "not so fun" part of the IVIg experience. Even with the administration of the pre-medications, I still experience allergic reaction to some degree. At times this can be quite minor - lower back discomfort, mild headache and low grade fever. Other times, I suffer from flu-like symptoms - body aches, fever, chills and nausea. Two times now I have had a serious reaction which has ended up with a week long stay in the hospital. These symptoms are much like those of infectious meningitis and are completely disabling.

Tomorrow is my IVIg Monday. I've been asked by family and friends if I dread when this day comes. Honestly, I really do not. There are so many people out there suffering from autoimmune diseases that do not have access to good health care. Many have doctors that refuse to give them appropriate diagnosis to receive the correct care, others have doctors that remain uneducated in the latest types of treatment. And even those with access to quality providers run into issues of insurance authorization (IVIg can cost up to $45,000 per treatment) or no insurance at all. I have been quite blessed in this regard. Not one second goes by that I am not thankful for the insurance I have, the doctors that treat me or the facilities in which I receive care.

So, unlike the song by The Mama's And The Papas, when Monday comes you won't find me "crying all of the time". Instead, the next time you think of me sitting in my recliner on the second floor of the PWB...don't feel bad. Know that I am in good hands and most likely dreaming of all the wonderful days to come!

Peace to you.