Health Update 6: Test Results

Health Update 6: [warning this one is long and honest, maybe too honest so this is where you skip if you want to]

First I want to talk about why I am posting health updates, as a couple of folks have asked.  I have friends and family in many different locations who want to know and having multiple conversations about my daily medical indignities are too emotionally draining.  So I write about it here and post once – those who want to know can keep up and those who don’t can hide my feed and not read them. I would rather people know the reality and not assume so I try to be as honest as possible without being too gross or too angry or too whatever.  I write about my health updates here so in the little time I get to be social with people I can talk about other things.  I long for distraction away from the failings of my body, and to get lost in the triumphs of their lives. I really appreciate the supportive comments from friends; they bolster me on the difficult days.

I have had good news and bad news.  I saw the GI specialist yesterday.  We went over the test findings.  First, the good news – at this moment the blockage in my small bowel that I have been enduring for 10 weeks has cleared, meaning the flow through my GI tract is moving without a internal physical obstruction. However there are three points of narrowing along the small bowel, from scar tissue, which slow the process in my dysfunctional system and these narrow spots remain points of future obstruction.   The GI Specialist after reviewing previous surgical reports and medical history has determined I am not able to withstand any more surgery to try and correct these narrow places.  He agrees with my doctor that the risk of the surgery is worse than continuing to live with what we know about my system. This is not anything I did not know already.  Although, I have to admit to holding onto a glimmer of hope that there would be some solution, some fix, some magic new advancement that could potentially make things better; however naïve that sounds.  But there is not a magic solution and I am in the same place.

I have a surgically altered, damaged GI tract which is unable to digest vitamins and minerals, which compromises my immune system, which causes chronic unrelenting pain and is prone to dangerous, possibly life threatening obstructions. I will be forced to receive my vitamins and minerals from IV infusions for the rest of my life and the chronic low vitamin levels damaged my bone marrow. My damaged marrow unable to produce sufficient red blood cells and I will be forced to get blood transfusions for the rest of my life when my blood volume become too low.  This condition will continue to degenerate over time and eventually I will have to live with NG tubes for nutrition and colostomy bags.  The low vitamin levels cause metabolic bone disease, a condition where my body, low on calcium, draws it from my bones and my bones become weak, as the honeycomb structure inside grows wider and less stable in structure.  That striping of the structure inside my bones makes them maluable, and they bend with movement under gravity.  As one doctor put it, ‘it will be a long slow painful process leading to immobility and death’.

The low vitamin levels cause a myriad of horrors; I don’t want to get into all of them but I will say I am prone to the conditions only pirates used to get like scurvy, osteomalacia, beriberi, pellagra, hypocobalaminemia, paraesthesia, ariboflavinosis and more.  It is difficult to be treated for these conditions because modern America does not have many problems with vitamin deficiency so few doctors are versed in it and fewer able to understand what it is like when the text book solution does not work because my GI tract no longer absorbs the treatment.  So I live with pain and symptoms from these conditions as well.  For example, the pain from the osteomalacia is why I try to not take stairs, why I walk with a rolling red travel bag that, functions as a cane and hides that I depend it when I walk.  My bones flex with gravity so steps up and down, sitting too long, standing too long, going from sitting to standing, twisting, and most movements are hideously painful on good days.  If you are interested in what the other symptoms are of the condition caused by vitamin deficiency, look up the other conditions and see the list of what I deal with, needless to say they make normal life difficult. Over time I have gotten very good at masking the pain, and presenting as normal as possible, until my body fails and blows my cover.

The GI specialist did go out of his way to compliment me on my attitude and the amount of research I have done on my condition. Apparently I am remarkably positive and resilient after 10 years of living through this condition. He went on to state that the behaviors and actions I take daily are the right course of action and moving me towards the best possible outcomes.  

He was impressed with my dedication to a controlled and discipline approach to pain management.  Pain medication is a double-edged sword for GI tract conditions.  Most pain medication disrupts the ability for the GI tract to function properly, so taking pain meds for GI tract pain will actually make GI tract pain worse. The ultimate Catch 22.  I work very hard to keep my pain medication levels as low as possible, to avoid the pitfalls of developing higher tolerance to the medication. I voluntarily detoxify myself every 90 days; placing myself into withdrawal to reset my tolerance levels.  This is a remarkably unpleasant 5-7 days and a necessary evil and why I have stayed at the lower levels of my meds for over seven years.  Pain is a hell of a grindstone; it wears on you over time and changes you in ways that are difficult to describe.

The GI specialist suggested that I go back to into therapy to talk about what it is like to live with such a difficult chronic condition. I have been in and out of therapy and support groups over the years and I agree with him that speaking to some one again might be beneficial. The interaction with therapists and groups provide a much-needed place to talk about the fears and anger you can’t burden your family and friends with. They function as a safe place to vent the toxic ideas, which inevitably swirl in your mind around how much your existence is hurting your family.

My PICC line is removed and I am currently working on staying off the line.  The problem is the continual nausea.  If I cannot keep fluids down then I have to be on an IV. Currently, I take high dose of anti-nausea medication that dissolves under my tongue. They help me try and keep fluids and other foods down.  My system is still so inflamed from the obstruction and the healing is going slowly. But it is wonderful to not have a tube inside my artery and have to be connected to a pump all the time.  Now it is about the slow a steady road back to my new normal and discovering what that entails.   The support of friends and family has been wonderful. It is their support and kind words that make me want to keep fighting.  They have a habit of telling me to ‘not worry’ and to ‘try not to think about the things that will stress me out’.  This is a kind notion but an impossible one.  Medical bills stack up, and when you hit the ever-deepening understanding of how much of a fight the rest of your life will be stress comes with that.  Any thoughtful person can’t help but understand the level of burden your medical condition, the deterioration of your body and the growing cost of your treatment will place on your family.  I have never been afraid of dying. My fear is living in the pain and deterioration of my body and mind. Death is easy.  Living is hard.

So it was good and bad.  I am out of the immediate danger for this obstruction and now it is time to recover as much as possible before the next obstruction

I am reminded that I am supposed to add this link about the fund raising drive started to help us with medical bills: https://www.giveforward.com/fundraiser/h9l2/gwen-templeton-s-recovery-fund?utm_source=facebook&utm_medium=fb_share_stream.share&utm_campaign=vanity_page_P3P&og_action=hug&t=3&fb_ref=1114770

Health Update: The Big Test

Update after big test: The test went. I had all the expected fun and difficulties. One hour in and I could not keep the dye down, so we had to stop and re-up the anti-nausea medication. The test continued for five hours. I only have preliminary findings and will meet with the GI specialist on 22nd. So far we are worried that my motility is much slower, this could be nerve damage or scar tissue, after so many surgeries it is difficult to tell. There are three points of serious stricture, this is one more than Stanford Med found before my last surgery in the same test in 2010. So most likely more scar tissue has grown since that surgery. This is the main problem, every time I have surgery to remove or fix scar tissue more forms. My colon shows signs of inflammation, not out of the ordinary after dealing with a bowel obstruction. The surgeon will most likely want to do another surgery, but there are big concerns from me and my doctors that another surgery risks serious complications. The kind of complication which greatly change your standard of living and not for the better or end it all together. I trust my Yale educated doctor when she looks into my eyes and tells me she is worried I would not live through another surgery. That leaves me thinking the "devil I know, is better than the one that will grow". There were some other strange findings but I don't want to talk about those until I meet with my GI Specialist.

I got home from the test wiped out and in pain. I crawled into bed and fell asleep for hours. The next few days will be difficult. It takes a long time for my system to pass the barium dye and the process is very painful. All part of the process.

The anatomy of the latest near death experience . . . putting it all together [warning graphic description of medical content]

I have kept my previous posts about my health status to smaller groups, mainly to not worry people.  My silence in public forums has been met with a number of messages asking, “What is going on?” and “Are you Ok?”  The last thing I want is for people to fill in the void with misinformation, so I am opting to give the full overview of my current status.

The short version: The week of May 13^th, I began to notice I was starting to have the symptoms of a bowel obstruction.  I go through these intermittent blockages on a regular basis due to extensive scar tissue (adhesions) and a hernia in my abdomen from numerous surgeries. I have undergone seven surgeries over the past 13 years trying to restore my GI tract from an initial almost fatal infection, which damaged most of my small bowel.  My bowel is a mess of twists and narrows that cause continual blockages.  These blockages have painful symptoms including: severe pain and cramping, swelling and distention of my abdomen, nausea, vomiting, diarrhea, dehydration and a list of other truly unpleasant things.  Almost all of the obstructions I experience are caused by scar tissue and will resolve over time. Because I have already had so many surgeries, it is never advised to do more surgery unless the obstruction does not resolve and my bowel begins to lose blood flow, which would necessitate emergency surgery to re-section the bowel and save my life.  So I live in an almost constant dance between obstructions. 

I have been hospitalized for bowel obstructions over 20 times.  The treatment for obstruction is almost always the same; a CT scan and fluoroscope are done to determine where the obstruction is along the bowel.  Ninety percent of the time they occur in the same spot where the intestine narrows and twists back on it’s self.  The treatment is to give me IV fluids to counter act the serious dehydration. [an obstructed bowel will rob your body of all available fluid and push it into the bowel to try and dislodge the blockage, thus causing your abdomen to swell painfully. At the same time your stomach will not allow any more fluid or solids into your blocked system so the vomiting begins, this cycle causes severe dehydration rapidly] The IV will deliver fluids, antibiotics [because the possibility of bowel perforation and infection is real], nutrition/vitamins, anti-nausea, anti-inflammatory and pain medicines intravenously.   Typically I will be NPO or [L.] nil per os (nothing by mouth) and over time slowly progress to clear liquids, then soft and squishy foods and finally bland semi food like things.  So the basic gist of the treatment is give me fluids and medication through IV and wait until the blockage finally moves.  This process can take days, weeks and sometimes longer.  Most of my hospital stays are upwards of 10-13 days and remarkable expensive. 

Over the years my doctor and I have learned how to treat these obstructions outside the hospital, by having IV lines administered at home.  Most normal IV’s will last 2-3 days on me before blowing and becoming useless.  So on more difficult blockages I have to have a PICC line inserted. [A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction. The PICC line is inserted by a surgeon and is guided through the vein using a fluoroscopy and ultrasound.].  The current PICC line I have inserted is 46cm.  Once the PICC line is inserted I can be released to home care with a visiting nurse to monitor treatment and change the bandages and tubing every 72 hours.  My husband and I were trained to administer all of the medications, change tubing and bags, and monitor the IV pump on a daily basis.  There are huge benefits to being at home. First I am at much less risk for infection away from the hospital. Seventy percent of your immune system is located in your GI tract  and years of going through  bowel obstructions and mal-absorbsion my immune system is not able to fight off most infections, so hospital stays can be a big risk for me. 

The major drawback from not being in the hospital is pain cannot be controlled as effectively.  In the hospital I have round the clock nursing and access to pain medication, which you cannot receive at home.  This makes it far more painful to be at home, but I personally will endure the pain to stay home. As the blockage begins to resolve and my GI tract starts to move I can disconnect from the IV pump for hours at a time, which can give me the freedom to leave the house and for some one as stubborn as me –it gives me the ability to go to work (this appalled my doctor).  I have continued to work while wearing a PICC line several times over the past year.  I have even run a conference while wearing one and most people did not even notice.  All I have ever wanted was to just be normal and do my job, so I wore long sleeves to hide it and simply got back to doing my job.  I have been busted by co-workers a few times when the line slipped out under the cuff of my sleeve or they noticed the bag of syringes and IV supplies in my bag; when you disconnect you still have to give your self meds and then flush your line before locking off the line again. They would ask about the line and I would brush it off as no big deal.  I try to brush off most inquires about my medical condition as no big deal, because when people find out you live with a serious medical condition, they tend to treat your differently and most times not for the better. I have learned to try my best to hide it when ever possible.

There is still a great deal of risk in wearing a PICC line, because it is a direct opening into your arterial vein – so there is always a serious risk of infection, risk of getting air into your lines, and problems with bleeding if the valves are not locked properly.  I have experienced all of those at one time or another.  On Monday, May 20^th I experienced one of the most dangerous risks. I was awaiting the AM nurse to assist me in prepping for the morning dosages and prepping to lock off the line so I could travel to work.  There was a mix up in the medication, we are not quite sure what happened or how  because the IV works instantly a mishap like this has instant effect.  I remember seeing, feeling and tasting the Heparin’s metallic sting and that is it. 

From here on I describe what my husband recounted to me a week later.  He said I started to stare off blankly holding the two ends of the tubing from the IV pump and the extension tube from my arterial vein. He asked me what was happening and trying to grab hold of the lines to attach them like normal.  I jerked back and fought him, which was very unusual. As he reattached my tubing and started the IV pump again to the normal PRI rate, my eyes suddenly rolled back into my head and I slumped over, not breathing.  My husband pushed the IV pump and pole out of the way and dragged my body to the hardwood floor.  He yelled for our housemate to call 911 and he started to pound on my chest and breathe into my mouth administering CPR.  While my housemate was on the phone with CPR, my husband kept pumping and breathing.  After 4 minutes there was a knock at the door and my housemate assuming it was the ambulance, threw open the door.  It was not the EMTs but rather the young man who delivers my IV supplies from the pharmacy standing there with a look of absolute horror.  The young man immediately started to assist – he ran out to the courtyard to open the main gate and clear the way. He ran back in to ask for the keys to the black Honda van so he could clear the driveway.  He apparently yelled to my housemate for the keys to the black Honda several times while she stared blankly at him, and my husband without missing a beat in the CPR yelled back, “Nette, that is your car!” She grabbed her purse and threw the young man the keys and he ran to move the van out of the way.  [Nette, later told me that all the while Jeff kept pumping on my chest and calling out, “Don’t you leave me, Gwen.  Don’t you dare leave me!”] At 8 minutes the EMTs arrived and took over the CPR.  They pulled Jeff off to the side and asked him to lock up Lobo, his service dog.  Lobo had moved next to Jeff and was doing exactly what he had been trained to do, guard his Daddy’s back and did not move.  Remarkable for the dog to stay focused and do his job amidst all that noise, yelling and chaos.  The police asked for the dog to be removed and secured so the EMT’s could work.  This is standard procedure, but apparently the police remarked how well trained lobo was as he did as commanded in returning to his kennel.  I don’t know what the EMT’s did, because everyone was pulled off to the side to give reports on what happened. At 12 minutes I took my first breath.  I had an extremely weak pulse and was loaded into the back of the ambulance.  Nette said Jeff stayed calm, and focused through it all and as the ambulance sped off the police informed him to follow them to the hospital. 

Luckily we live a couple of miles from the Hospital.  I apparently awoke in the back of the ambulance. I have every scattered memories of this; flashes of the sound of men in uniform screaming at me to breathe. The EMTs where asking questions and I couldn’t understand anything they were saying. I just remember the shiny blue metal roof with the while concentric circle lights. Next the cracking of the blue metal doors, and flash of bright sunlight, then the boom of the swinging doors as we crash through. Then faces of men and women over me, asking questions that I can’t answer and the eternal beeps of the monitors. Everything is foggy and in slow motion. It was a long time until I saw Jeff’s face and reached for his hand. We have been here before so many times before, holding each other’s hand in a hospital amidst panic and chaos. People have asked how we found each other and how is able to handle continue to be so strong during all of these hospital traumas.  Jeff is 16-year combat veteran and has seen a lot of death.  He, like me grew up with a parent who was ill and learned early how to be self-sufficient and be a care taker.  We have a lot in common that way and it is why we recognized one another when we met.  We were brought together for a reason and that saying it takes one to know one is a good description of how common are minds and hearts are. He is always my rock, strong and unwavering. 

But now, I can see the fear in his eyes.  There is swirl of doctors and nurses, taking blood, marking clip boards, asking things and my words don’t work and my mouth can’t make sounds other than groans of pain.  I can hear Jeff’s voice answering the questions and forming the words I can’t put together.  Hours go by, test after test, and I stay over for observation. The test confirms the blockage and in time I return to home care.  My condition has leveled up some and now on I cannot disconnect my Picc line form the IV pump and I am to be home bound.  Most of what occurred in the hospital is a foggy blur and so is the first couple of days back home.  Once home, in the days following my ribs hurt like hell.  Jeff had to break my ribs in the process of giving me CPR.  Jeff chuckles and tells me, “that is what happens when you have a big ol Viking pound on your chest.”

The day after we get home from the hospital we go to follow up with my Doctor, who already has the full report from the hospital and she is very concerned.  I am still under the delusion that all I need to do is get the obstruction to move and I can be back to normal and I ask when she thinks I will be ready to go back to work. She gets a very stern look on her face and she asks me, “do understand how close you came to dying?”  Then Jeff echoes her stern look.  She then shows me the results of my blood test which confirm how dangerously low my levels are across the board, a result of constant malabsorbsion.  My hemoglobin is 7.3 (normal is 14) all of my vitamins are very low but my Potassium, Vitamin K, A, and B are extremely low and my vitamin B is so low the lab has marked it as undetectable.  I have megablastic anemia and the continual low levels of Iron [ferritin] and vitamin b12 has damaged my bone marrow and my body is having difficulty making red blood cells.  This has happened before back in 2007 and is just one of the ongoing side effects of the condition I live with.  So I will need blood transfusions, large doses of Iron and all the other vitamins, and depending on what further testing shows I may again need to have a bone marrow stem cell transplant.  [which is a whole other long term recovery issue but we will come back to that another time]

The real answer about my health is this is a very serious condition and one that will not be resolved soon.  So I will be staying on the PICC line for a while longer.  I am starting to transition from clears to soft foods but the nausea is unrelenting. I am hoping to start to transition off the IV in the next few weeks., but that will be determined by the continuing test results and if I can control the nausea with oral medication.  People often ask if there is any surgery that could help or if after time this will get any better. Unfortunately the answer is no.  I had the one possible miracle surgery that was designed to keep me alive in 2009 from the only surgeon in the world who could do it.  He was amazing and he did the best he could but there is just not enough left of my bowel to fix things, and over time my GI tract will continue to have obstructions and at some point one of those obstruction will not resolve and cause the bowel to lose blood flow and die. So barring some sort of amazing medical advancement and the ability to have a bowel transplant in the future – things will not ever get better and will continue to decline. 

Currently I am at home under nursing care.  I am feeling pretty weak, I don’t go long without sleeping and my pain levels are pretty high.  The doctor says that is all normal for what I have been through.  The obstruction is very slowly resolving and I am very, very tired of not being able to leave my house or be disconnected from this IV pump.

On a funny note, last week the pharmacy delivered more infusion supplies and it was the same young man who happened to be present on the day I stopped breathing. He was surprised to see me sitting with my IV pump and he looked at me and got this huge smile on his face and said, “ I so glad to see you are still here ‘cuz wow you were like totally blue.  Did you know how blue you were?   The EMT dudes were saying if your husband had not been here you would have croaked cause you were seriously blue. That was scary as hell.  Did you know you were blue?  Like hella blue!” 

I laughed and replied, “I don’t remember anything but blue is not really my color.” He stared at me for a second and then he got the joke and laughed.  

On his way out he turned to me to say, “ your husband rocks, ya know, he totally saved your life, that’s cool and I’m glad to see you’re still here.”

I am glad I’m still here too and my husband does indeed rock! 

We are taking it one day at a time.  I am home bound and cannot drive.  I have to be connected to the IV pump, with the only exception for short excursions to my doctor’s office.  I had to take medical leave from work, which is so very difficult for me.  I am less than four weeks from the big event I plan for all year and I have had to hand over all my tasks and let go so I can focus on healing, and incredibly difficult thing to do. I had been trying to think of any way I could go back to help with the event, to get back to work and with the same seriously stern face my doctor explained that if I tried to force myself back to work right now I would most likely die.

Sobering thought.  So I am getting real serious about recovery and letting go of anything that is not about recovering.

Health Update: I died a week ago . . . again.

Update on health:  I am at home and resting. The situation is serious and I am taking it so, putting my recovery first in importance. I still have the PICC line in to give meds, vitamins, fluids and nutrition. I will wear it for however long it takes depending on how well things go. I am still dizzy, exhausted and generally weak. So I am taking it real easy and actually asking for help, which is tough for me. I am required to be connected to the IV full time so I feel like I'm under house arrest with my nurse visiting regularly. But thank goodness I am at home and that is way better than spending this time in the hospital. I enjoy the visits of friends but in small doses for now, as my ability to project an upbeat exterior has a short duration.

It is strange to think it was only seven days ago when everything stopped.  Due to complications with medications my heart stopped and my respiration stopped, my husband Jeff pulled me to the floor and preformed CPR until the ambulance arrived and the paramedics showed up.  Jeff is a trained combat medic and if he had not I me at the time I would have died, without any doubt.  The paramedics confirmed that he saved my life.  Sometime later woke in the hospital.  I have flashes of memories of the ceiling in the ambulance and men in uniform screaming at me to breathe, but it is all a blur.  This is not my first time to almost die, in fact I "coded" and been revived 4 times in the past 10 years.  [I will talk about what dying and reviving does to your perception in a later post]

 Jeff has been amazing this past week. He did not miss a beat in helping me do almost everything. I think he is afraid to be away from me for longer than a few minutes in case I stop breathing and fall over dead again.  We went through shock for a bit, which was the expected reaction to, "holy crap you almost died" . . . "again". Now we are settling into "how do we cope with this" mode. Funny, how it is always in the moments when you come really close to losing it all, that you begin to understand what it is that you have to lose.

Going through any medical condition is difficult; there is the pain, the fear, the trying to hide it and the looming unknown. But most people don't realize that the worst part of a serious medical issue is how alone you feel. You can be surrounded by people: doctors, nurses, family, friends, other patients and still be utterly alone. I learn to grab the small bits of humanity wrapped in the colors of a flower arrangement, the humor of a card, the ice cream even when I can't eat it, the necklace some one made by hand, the offer to help me wash my hair, holding my hand and sometimes just a comment on Facebook. It is those gestures, which reach across the divide and give real comfort. It is not always the medicine that keeps you going but many times it is the will.

No one ever promised me that life would be easy or fair, and so far it has not been either. But it is in the hard moments where I have the greatest chance of connecting to a deeper purpose in life. As many of my friends point out in their comments last week to, "stop doing this" or "oh no not again" or "enough with the dying already", I have had a lot of those 'meaning of life' moments. I am blessed to be here, to have awakened under another clear blue sky and to have such wonderful friends and family around me.

Thank you to my beloved tribe and to everyone who has visited, called, emailed, commented and kept me in their thoughts. I don't say it nearly enough how much the simple words of, "hope you are feeing better" goes in actually making me feel better. It is the little gifts of sharing which add up to such a monumental thing. My will is that monumental thing, and it is made up of all those small kindnesses.

I learned a strong lesson last week that without the care and love of my family and friends that I would not be here. It reminded me to say, "thank you", and that, "I love you" while I still can.