Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like To Watch The Games In PyeongChang

Recently, Bustle Magazine asked me to write a follow-up article to 10 Ways Living With a Chronic Illness is Like Training for the Olympics that was published on The Mighty for the 2016 Summer Olympics. The new article, Chronic Illness Put My Olympic Dreams On Hold. Here’s What It’s Like to Watch the Olympic Games in PyeongChang, went live on the Bustle website today. Check it out and let me know what you think.

 Guest Feature: Jim’s Story

 

Vascular Compression Syndromes:

A Likely Cause of Chronic Fatigue Syndrome

Written by: Jim, Colorado

One of the most frustrating things I have read since getting diagnosed with May-Thurner Syndrome (MTS) is that if you don’t develop Blood Clots or Deep Vein Thrombosis (DVT) with this condition, you are most likely asymptomatic. Unfortunately, very few doctors are aware of the many symptoms that MTS can cause, especially without blood clots or DVTs. Since my personal experience with May-Thurner Syndrome is vastly different than most stories I’ve read about this condition, I would like to share my story about how I finally got diagnosed with MTS and the many seemingly unknown problems it can cause.

May-Thurner syndrome is an anatomical variant that can lead to vein compression and, in a small percentage of people, blood clots and DVTs. Since I never developed blood clots with this condition, none of my doctors ever thought MTS could be the cause of so many of the problems – most of which I’ve had for the majority of my life, such as debilitating fatigue. After recently getting diagnosed and treated for this condition, here are some of the problems that MTS can cause that are not widely known. Many of my own problems started around age 13, although looking back there were definitely signs of this condition even early than that. Some symptoms that many people first experience when developing blood clots with MTS is anxiety and fatigue. I’ve had anxiety, especially social anxiety, from an early age. I was extremely shy and insecure as a kid. Then, at age 13, I started experiencing extreme fatigue and, shortly afterward, depression. This is when I probably should have begun developing blood clots as commonly associated with this condition, but I’ve learned that most people with MTS never will and many will never even know that they have this condition. From there I would go on to develop chronic fatigue, which would negatively impact my life for the next 25 years.

May-Thurner syndrome is a poorly understood and rarely diagnosed condition. It seems to me that almost everything that is known about MTS is incorrect. For instance, most websites will say that it’s a rare condition that’s commonly diagnosed in women who are between 20 and 40 years old and that it’s not a hereditary condition. However, it’s actually an anatomical variant that is estimated to be found in 20-25% of the population, possibly even much higher. About half of these people could also have at least some compression of the iliac vein and be experiencing symptoms as a result of this condition. MTS occurs when the spine begins pressing down on this very large vein, blocking normal blood flow. It can also occur at almost any age. Since women tend to have a more pronounced lordosis of the spine, they are approximately 4 times more likely than men to receive a diagnosis of MTS. It would also seem that MTS is more than likely hereditary because it can be caused, in part, by the shape of a person’s spine.

After having a stent place for May-Thurner syndrome, I can say that MTS has undoubtedly been the root cause of my anxiety and unexplained chronic fatigue or excessive daytime sleepiness (or whatever you want to call it) that I’ve had for more the past 25 years. I don’t know of many doctors that will tell you that May-Thurner syndrome can cause chronic fatigue but the doctor that diagnosed me knows it can cause this extreme fatigue. My doctor also told me that MTS is a condition that is usually diagnosed in pregnant women due to rapid weight gain that causes the compression of the iliac vein and, sometimes, DVTs. So, for a healthy male with no blood clots, this is probably the last condition most doctors would look for — and that’s the problem that I’ve discovered about this condition. From my experience, I can say that May-Thurner syndrome can absolutely cause chronic fatigue syndrome. So along with anxiety, chronic fatigue, and depression, MTS can also cause cognitive dysfunction as well. I’ve had attention deficit disorder, confusion, and memory problems since early childhood. It’s likely that I was born with, or developed, significant compression of my left iliac vein early on in my life, thus causing many of these symptoms. The problem that MTS is that it can be especially devastating for kids and teenagers who are dealing with these symptoms but are not quite able to fit in with their other “normal” friends, so an inability to excel or succeed at work or school due to poor concentration and fatigue could be an indication of MTS, much like CFS.

When my problems began getting worse last year at the age of 38, I was determined to figure out what was causing the unexplained, extreme fatigue that I’ve had for so long.  My symptoms up until this point could only be described as mild narcolepsy due to the excessive daytime sleepiness and hypnagogic hallucinations with sleep paralysis that I would occasionally experience. As someone with narcolepsy once said, “one of the first places I go to when I get in a car is to sleep” and I could sleep for days when riding in a car! (Incidentally, 13 and 38 are the exact ages people are usually diagnosed with narcolepsy – a diagnosis I was trying to get a year earlier than my MTS diagnosis). I had every sign and symptom of narcolepsy except for cataplexy, although MTS could very well cause this too since it causes weakness in the legs as well. I believe that May-Thurner syndrome could very likely cause sleep associated disorders, including narcolepsy.

After a long and stressful period in my life, my anxiety began to get much worse and I started experiencing brain fog and memory loss. I also began having dizzy spells, sort of like the entire room was spinning, and I was having balance issues as well. For instance, I would be walking along and then suddenly just start leaning to my left side. One day, when I was out walking with my daughter, I ran right into the door of a store we were entering. At the time, it was actually pretty funny – we both had a good laugh about that one. After going to see over a dozen different doctors during the following 6 months, I was not any closer to finding the cause of my fatigue. I had all kinds of tests, include abdominal ultrasounds and magnetic resonance imaging (MRI) of the brain, but the only thing doctors found was that I had left-sided varicocele veins. Apparently, a doctor had mentioned that I had these to my parents around the age of 13. I was having a dull/ache and pain on the left side of my groin at the time, so that made more sense. Still, even after all of this, doctors kept telling me that I was a healthy male and that I had nothing to worry about, even though I felt like I was dying all the time. After a couple of months of feeling miserable, I decided to have a varicocele embolization to see if this would help any of my problems since I read that they could also cause fatigue and low testosterone.

When the interventional radiologist performed the embolization, it turned out to be one of the best/worst decisions I’ve ever made. What I didn’t know at the time, however, was that this procedure redirects blood flow out through the left internal and external iliac veins, causing an increase in blood flow through these veins. My varicocele veins actually started getting worse after this and the brain fog, which was starting to slowly get better, began getting much worse. Breathing also became very difficult and I developed worsening anxiety, including an impending sense of doom for some reason. My hips and legs would hurt when either sitting or standing for any length of time. Both legs felt like they weighed 300lbs each and were very weak. I would just sit around and wonder about how I could keep going, especially with the way things had been going for such a long time. It took me awhile but I finally went back to the doctor that performed my embolization and told him about all the problems I’d been having since then. That’s when he told me that I probably have a condition called May-Thurner Syndrome. After searching MTS and fatigue online, I found a website from a vein clinic that talked about how MTS can cause symptoms like anxiety, fatigue, depression, and exercise intolerance. The website also stated that those with a 70% or more compression of the left iliac vein can cause leg pain and/or swelling, pelvic pain, pain during intercourse (dyspareunia), pelvic pain after intercourse (post-coital pain), lower back pain, and urinary bladder discomfort. This description almost describes nearly all of the symptoms I had been having exactly – I couldn’t believe it! At this point, I knew that I had finally discovered the cause of all the problems that I had been having for all these years.

After a pelvic venogram confirmed that I actually had MTS, with about 70% compression of the left iliac vein, he chose to place a stent in the vein to allow for proper blood to flow through. I wasn’t sure what to expect next, so I left the hospital and went home to relax. That night, I started getting the worst lower back pain and I felt like I was half-paralyzed. I remember thinking to myself that it was just my luck and I had somehow managed to make my problems even worse than they were before the stent placement. During the middle of the night, however, the pain slowly began to disappear and I felt a little more relieved. The only way I can describe how I felt when I woke up the next day is that it felt as if I had been placed in a completely different body – I felt 20-years younger overnight; I was breathing so much better and could finally take a deep breath; the terrible anxiety and brain fog were gone; my legs felt so much lighter that I felt like I was a balloon and I could almost fly away at any time, and the extreme fatigue was also starting to fade as well. Additionally, I had the strangest sensations all over my body as blood was probably flowing normally (through my whole body) for the first time in my life. Every ache and pain in my body were now gone, although it took about 2 months for my sleep patterns to return to normal again. I finally started feeling like my old self – only a lot less fatigued.

It was around this time that I met Nikki (the Undiagnosed Warrior), who had also been diagnosed with May-Thurner syndrome and pelvic congestion syndrome, as well as two other vascular compress syndromes: Nutcracker syndrome (NCS) and superior mesenteric artery syndrome (SMAS). It is also when I first learned about NCS, although I shortly discovered that it was also a known cause of CFS and a very similar condition to MTS. Nikki was the first person I’ve ever been able to talk to that knows about the many problems that MTS can cause for those affected by it. In fact, our running joke with one another is “You know what causes that right?” – “May-Thurner Syndrome!!!” LOL.

My hope in sharing my story is that maybe someday it will help someone else receive a diagnosis, instead of suffering unknowingly with this miserable condition. It’s amazing that it has taken over 25 years for someone to figure out that I most likely had MTS all my life and it shouldn’t be that difficult. I wish one of the many doctors I saw along the way would have known about the many problems and symptoms that May-Thurner Syndrome can cause, especially in those who haven’t develop blood clots as expected. The good news is that doctors have been stenting for MTS for the past 20 years and if you do have this condition, a simple stenting procedure could give you great relief from your symptoms – I know it did for me. [Note: It is imperative that your doctor or surgeon check for other vascular compressions syndromes prior to agreeing to stent placement or pelvic embolization as a treatment because it can have the potential to increase pain and symptoms, rather than relieve them, especially when other vascular compression syndromes are present. Please consult your physician to find out more information]. Thank you for reading my story!


Jim Johns Photo for Article Submission

Contributor Information: Jim is an active member of the Undiagnosed Warrior Team and a moderator of the Undiagnosed Warrior Support Group. He advocates for the Undiagnosed by educating both patients and professionals about vascular compression syndromes, particularly on May-Thurner Syndrome and the random symptoms that the condition can cause.

Life After Venography

Recovery from the venogram was much worse than I expected. Originally, they told me I’d be in pain for the next 48 hours and then I’d be fine, but put me on restrictions for 7 days. I guess I didn’t realize how much you actually use your neck, as I could barely move at all for the entire week following. All I could do was sleep. The day after the procedure, I started coughing up blood, as well as blowing it out my nose, and my pelvis hurt more than it had even before the procedure. I also couldn’t see clearly either. It was as if my normal vision (even with glasses) suddenly changed overnight. Worried, I called the hospital, but the on call doctor thought my symptoms were unrelated to the venogram. Just weird they started the morning AFTER the venogram. Not long after I get off the phone with him, the hospital calls back letting me know that I have an appointment for a follow-up in two days (which I didn’t make – I was told to call to schedule). At that point, it was now the weekend, so I called bright and early that Monday morning to reschedule, since I was already scheduled with cardiology (at a different hospital) at the same time.

When I go to the follow-up a week later, the receptionist checking me in tells me that they’ll be calling me shortly for my ultrasound. Confused, I questioned her about it and she said, “Oh, never mind. It is an appointment, but there is no doctor written on the schedule…how odd!Um, okay… that doesn’t sound good, but she doesn’t act concerned so we (my husband and me) take a seat in the waiting room and actually get called back to the exam room rather quickly – I think it was in less than 5 minutes from sitting down. After the nurse does her thing, she says it’ll be just a few minutes until the doctor comes in. After an hour goes by of us waiting in the exam room, the nurse finally comes back in to check up on us, saying that she just realized that it had been just over an hour since we checked in and that the doctor was scheduled for surgery at the time of the appointment… but he should be almost done. About 10 to 15 minutes later, a doctor that looks familiar, but is not MY doctor, walks into the room.

He introduces himself and says he will be helping Dr. J with my surgery and that he assisted with my venogram. Okay, so that’s why he looked familiar. He proceeds to go over the findings of the test by drawing me a picture and telling me, in the most basic way possible, that I have Nutcracker Syndrome. Um, yes, I know. It’s already been confirmed multiple times by multiple doctors. I don’t think he knew anything about me, really. This became more apparent when he then tells me to they want to do surgery to stop my hematuria – only I don’t have hematuria as a symptom and I haven’t since I was in my teens and early 20’s. He seems confused by this and asks me what, exactly, are my symptoms.

I tell him the list (ULQ abdominal pain that can also radiate to the right or pelvic region on both sides, constant nausea, dysphagia, pain after eating, alternating diarrhea/constipation, rectal bleeding with or without mucus or undigested food in stool, dizziness, syncope/pre-syncope, occipital neuralgia, skin rashes, burning sensation under skin, insomnia, sleep apnea, chest pain, asthma/allergies/anaphylaxis, olfactory hallucinations, hair loss, incoordination/balance issues, severe fatigue, heart palpitations, arthralgia and myalgia, muscle and eye twitching, livedo reticularis, nevus anemicus, random swelling of my lymph nodes, and abnormal menstrual cycle before endometrial ablation). I also tell him my current diagnoses aside from the NCS (SMAS, MTS, IBS, Hypoxemia, POTS, Pericardial Effusion, Ventricular and Sinus Tachycardia, Cardiomyopathy, Alopecia, SIBO, and some underlying autoimmune/infiltrative disease that is tricky to diagnose, but the doctors are fighting about it being lupus or not). Maybe it was the number of symptoms/syndromes I named off, I don’t know, but he just kind of brushed it all off since none of it fit with the Nutcracker diagnosis.

Instead, he moved on with the conversation by showing me where all the collaterals are forming (where the body develops new blood circulation pathways to flow through since my renal vein is essentially blocked) and we watch some video from the venogram.

image

Photo retrieved from Dr. Scholbach’s Website, 2015

Basically, a lot of my blood is flowing into my lumbar plexus and pelvis, causing the pelvic congestion syndrome.

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Photo retrieved from RIA Endovascular Website, 2015.

The blood that is making it through the renal vein is then going up into the hemiazygous vein.

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The rest of the blood, however, is flowing retrograde toward the IVC, and the doctor says that it’s not likely May-Thurner Syndrome but the retrograde flow instead (although, again, Dr. J said I absolutely had MTS based off my CT Angiography, which we watched together during my consult as well).

Minolta DSC

Retrieved from the University of the Cumberlands website, 2015

This doctor then tells me that I have two options to fix the Nutcracker Syndrome; a stent (which I interrupt him and tell him that’s not an option) or the LRV transposition surgery, which they believe, due to my age, would be the best option. I ask him about the SMA Syndrome, which Dr. J said I had based on the CTA as well, but this doctor tells me there’s no way I have that. I tell him that GI surgeon confirmed the angle for SMAS and wrote it down as a diagnosis in my chart, but said he wouldn’t treat it without other proof.

nutcracker

Retrieved from Dr. Sathaye’s Blog, 2015

Basically, this doctor says that since I have no confirmed blockage they won’t treat it and that they can only treat what they have confirmed – the Nutcracker Syndrome and the Pelvic Congestion Syndrome (they plan to “tie off the vein” where it goes into the pelvis). Great…

We go over the surgery, recovery, etc.  My husband asks him if surgery will treat any of my primary symptoms. He basically stutters, saying there’s no way to know if it’ll help at all, but it may decrease any flank pain, hematuria (which, again, I don’t have) or pelvic pain caused by the PVCS, and that it has to be done. “So none of her primary symptoms?” – “Not likely”. I ask him if this could be causing any of the problems with my heart or the POTS. “Not likely influencing any of that either. I don’t suspect that this surgery will help those problems, but you never know.” We basically end the conversation there.

As the nurse is getting us checked out she says, “For someone with as many symptoms as you, you look really good.”  Excuse me?

I-dont-look-sick

After 20 years of pain and no diagnosis, you learn to hide it pretty well…

 “We have another patient with all the same things as you and she doesn’t look well at all….She is horribly skinny and sick.

Wow.

I didn’t know how to respond to that, so I just said,

“Well I keep my weight up by drinking 1 or 2

high-calorie Starbuck’s drinks a day.

Starbucks?

She doesn’t understand how that’s even possible.

“It’s 500 to 600 calories a drink. Keeps my weight up

and is the reason why I don’t ‘look sick’.”

She’s in shock.

You mean, you don’t eat food?

No… I CAN’T eat food.”

She’s speechless for a moment and then tells me that the doctor’s scheduler will call me to set up a surgery date, before walking us out. Before we left, though, she was nice enough to print out my venogram results so I didn’t have to wait for medical records to send them out by mail.

So, after all of this, I’m at a loss about what I should do.

Primarily, the biggest concern is having a major surgery without fixing my primary complaints first– you know, the ones that have taken away my ability to work and live a normal day-to-day life.

My husband doesn’t want me to have it done because he knows I can’t handle any additional pain on top of what I already have going on (that surgery won’t fix) and he doesn’t think it would be worth it. He also doesn’t trust the hospital, as I do after this whole affair. When the hospital called to schedule a few days later, I told them I would have to call back after I’ve gotten my affairs in order, talked with my other doctors and moved some appointments around, and talked with my school about taking at least one semester off. I also plan to call around to some other doctors out of state to see if they can review my tests, as well as my other doctors, although I obviously didn’t tell them that.

When I called my cardiologist to see if he had any objections or concerns I should be aware of about surgery, he recommended that I wait until my cardiology testing is done because he can’t guarantee I’d be okay with such an intensive surgery or recovery. Still, I need some opinions or input as to how to move forward once I am cleared for surgery. I don’t want to be noncompliant, but this is an invasive surgery and I want to make sure that I don’t do anything to make myself worse or choose the wrong thing. So far, this is one of the biggest medical decisions I’ve had to make.

Nonetheless, I’m losing hope that I’ll ever feel better as it seems to only be getting worse over time, and honestly don’t know what to do about anything anymore. I was so ill last week that I lost 8 pounds in three days from not being able to consume coffee (or food, obviously), but I am running out of tests that can prove the SMA Syndrome in a way that they would accept in order to treat it.

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So what do you think?

Should I move forward with surgery at this location after how they’ve handled everything else?

Is it even worth having the LRV Transposition if it won’t likely help any of my primary symptoms?

 

 

Catheter Venography (Venogram)

Well, I finally went for my venogram yesterday after waiting since September and being told by the GI surgeon to keep searching for answers to my symptoms. The vascular surgeon agreed to evaluate the compressions again  and determine whether or not surgery is needed at this point to fix the identified  vascular compressions.

According to the test results…. the answer is a clear and definitive yes.


(The following information was retrieved from radiology info.org.)

What is a venogram?

A venogram is an x-ray test that involves injecting x-ray contrast material (dye) into a vein to shows how blood flows through your veins. This allows a physician to determine the condition of your veins.

An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.

A venogram is commonly used to:
  • assess the status of a vein or system of veins
  • find blood clots within the veins
  • assess varicose veins before surgery
  • find a vein in good condition to use for a bypass procedure or dialysis access
  • help a physician place an IV or a medical device, such as a stent, in a vein
  • guide treatment of diseased veins.

How should I prepare?

Other than medications, you may be instructed to not eat or drink anything for several hours before your procedure. You may be allowed to drink clear liquids on the day of your procedure.

You should inform your physician of any medications being taken and if there are any allergies, especially to iodinated contrast materials. Also, inform your doctor about recent illnesses or other medical conditions.

Women should always inform their physician and x-ray technologist if there is any possibility that they are pregnant. Many imaging tests are not performed during pregnancy so as not to expose the fetus to radiation. If an x-ray is necessary, precautions will be taken to minimize radiation exposure to the baby. See the Safety page for more information about pregnancy and x-rays.

What does the equipment look like?

350px-Herzkatheterlabor_modern

The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide the progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over a table on which the patient lies.

Other equipment that may be used during the procedure includes an intravenous line (IV), ultrasound machine and devices that monitor your heart beat and blood pressure.

How does the procedure work?

X-rays are a form of radiation like light or radio waves. X-rays pass through most objects, including the body. Once it is carefully aimed at the part of the body being examined, an x-ray machine produces a small burst of radiation that passes through the body, recording an image on photographic film or a special detector.

Different parts of the body absorb the x-rays in varying degrees. Dense bone absorbs much of the radiation while soft tissue, such as muscle, fat and organs, allow more of the x-rays to pass through them. As a result, bones appear white on the x-ray, soft tissue shows up in shades of gray and air appears black.

Veins cannot be seen on an x-ray; therefore, a special dye (called contrast material) is injected into veins to make them visible on the x-ray.

How is the procedure performed?

This examination is usually done on an outpatient basis.

A venogram is done in a hospital x-ray department.

A venogram is performed in the x-ray department or in an interventional radiology suite, sometimes called special procedures suite.

You will lie on an x-ray table. Depending on the body part being examined (e.g., the legs), the table may be situated to a standing position. If the table is repositioned during the procedure, you will be secured with safety straps.

The physician will insert a needle or catheter into a vein to inject the contrast agent. Where that needle is placed depends upon the area of your body where the veins are being evaluated. As the contrast material flows through the veins being examined, several x-rays are taken. You may be moved into different positions so that the x-rays can take pictures of your veins at different angles.

What will I experience during and after the procedure?

You may be asked to remove some or all of your clothes and to wear a gown during the exam. You may also be asked to remove jewelry, removable dental appliances, eye glasses and any metal objects or clothing that might interfere with the x-ray images.

You will feel a slight pin prick when the needle is inserted into your vein for the intravenous line (IV) and when the local anesthetic is injected. The arteries have no sensation. Most of the sensation is at the skin incision site which is numbed using local anesthetic.

As the contrast material passes through your body, you may get a warm feeling.

You may have a metallic taste in your mouth. Your arm or leg may feel like it is getting numb or “falling asleep.” After the test is complete, this feeling will go away.

You must hold very still and may be asked to keep from breathing for a few seconds while the x-ray picture is taken to reduce the possibility of a blurred image. The technologist will walk behind a wall or into the next room to activate the x-ray machine.

When the examination is complete, you may be asked to wait until the radiologist determines that all the necessary images have been obtained.

A venogram takes between 30 and 90 minutes to perform. Fluids will be run through your IV to remove the contrast material from your veins. You will also be instructed to drink a lot of fluids for the next day. After the catheter is removed, a bandage will be placed on the IV site. Then you will be observed for any signs of complications, such as bleeding from the injection site, infection or an allergic reaction.

What are some of the possible risks?

  • There is a very slight risk of an allergic reaction if contrast material is injected.
  • In rare cases, a venogram can cause a deep vein thrombosis.
  • There is a risk of injury to the kidneys with contrast injection. Patients with impaired kidney (renal) function should be given special consideration before receiving iodine-based contrast materials by vein or artery. Such patients are at risk for developing contrast-induced nephropathy, in which the pre-existing kidney damage is worsened.
  • Any procedure that involves placement of a catheter inside a blood vessel carries certain risks. These risks include damage to the blood vessel, bruising or bleeding at the puncture site, and infection.
  • There is always a slight chance of cancer from excessive exposure to radiation. However, the benefit of an accurate diagnosis far outweighs the risk.
  • The effective radiation dose for this procedure varies.
  • Because children are more sensitive to radiation exposure than adults, equipment and procedures will be monitored in order to deliver the lowest possible dose to young patients.

What are the limitations of venography?

The results of a venogram can be altered or affected if you are unable to sit still during the procedure since that will affect how the contrast material moves through your veins. Further exams may also be required if the more central veins located in the pelvis, abdomen and chest are not fully evaluated with contrast injection via an IV placed in the extremity.

In some cases, ultrasound is a preferred procedure because it has fewer risks and side effects.


My personal Experience:

 I was so nervous about having the procedure because they hadn’t given me much information about it or the plan of action for the day. I finally received a call from the hospital on Monday with a check-in time and brief instructions about prep for the procedure. I was to check into the hospital at 6:30 AM Thursday morning and no food after midnight and drinks after 4:30 A.M. Not too bad, I thought.

Tuesday I had received three more phone calls from the hospital staff about doing pre-med prior to the procedure since the last three times I’ve had an iodine injection I got a blistering rash, almost like a sunburn, within a few hours of each procedure. This time around, I was to take 50mg of Prednisone 13 hours before, 7 hours before, and 1 hour before, in addition to 50mg of Benadryl an hour before the procedure started (in addition to all my normal meds – it was a lot of drugs in a short period of time, making me even more nauseated than my nerves had already caused me to feel).

Since we had such an early check-in time, in addition to living almost an hour and a half away from the hospital, we decided to get a hotel room down the street the night before. It was great not having to wake up at 3:30 A.M. to leave by 4:30-5:00 A.M. – making it so much less stressful of a morning. While I didn’t get a ton more sleep it was helpful to stay overnight regardless. We checked into the hotel around 7:30 P.M and didn’t have to worry about traffic or rushing to be there on time.

When we arrived at the hospital on Thursday morning, I was still pretty nervous since I did not know what to expect. There was a line to check-in and it left us a little behind. I signed all my paperwork and I believe I got called back around 6:50 A.M. Almost immediately, it was rush, rush, rush. I guess since I was having anesthesia because of a family history of malignant hyperthermia, instead of the traditional twilight sedation usually given during this test, I was scheduled for the operating room at 7:30 A.M. instead of 8:30 A.M. You could feel the pressure in my preparation room as everyone scurried around getting me situated to go. First they had me change out of every inch of clothes and put on a very fashionable hospital gown with neon yellow compression socks. I climbed into bed, praying I wouldn’t flash the large group of people who had now joined me in the hospital room. Luckily, I got covered in layers of warm blankets that covered me quite successfully.

Next, my room nurse quickly tried to put in my catheter, but could not feed the catheter into my vein – said my skin was too thick (which I had never heard)- and I began to swell and bruise almost instantly. The nurse then gave up and one of the medical student working on my paperwork decided to take a shot at it. He was able to get it in through the vein located on the side of my wrist on his first try, but he covered a whole side of the hospital bed and himself with my blood in the process. Quite messy but at least the catheter was in, right?

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The first IV catheter attempt

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The bruise is finally settling in

They both then drew my blood for a CBC and clotting times, followed by making me pee into a cup to make sure I wasn’t pregnant. Although I was VERY sure that I wasn’t, I know that it is typical protocol so I obliged and didn’t fuss about it – there wasn’t time to do so anyways.

Component Results

Component Standard Range Your Value
PREGNANCY TEST URINE Negative

COMPONENT RESULTS

Prothrombin Time 11.7-14.1 seconds 13.2
INTERNATIONAL NORMALIZED RATIO 0.9-1.1 1.0
The usual therapeutic range is 2.0-3.0.

High risk therapeutic range is 2.5-3.5.

 

Component Results

Component Standard Range Your Value
WHITE BLOOD CELL COUNT 4.0-11.1 10*9/L 9.2
RED BLOOD CELL COUNT 4.18-5.64 10*12/L 4.62
HEMOGLOBIN 12.1-16.3 g/dL 14.7
HEMATOCRIT 35.7-46.7 % 42.0
MEAN CORPUSCULAR VOLUME 80.0-100.0 fL 90.9
Mean Corpuscular Hemoglobin 27.5-35.1 pg 31.8
Mean Corpuscular Hemoglobin Concentration 32.0-36.0 g/dL 35.0
PLATELET COUNT 150-400 10*9/L 329
MEAN PLATELET VOLUME 9.6-12.8 fL 9.9
RED CELL DISTRIBUTION WIDTH CV 11.7-14.2 % 13.2
RED CELL DISTRIBUTION WIDTH SD 37.1-48.8 fL 43.2
Neutrophil % 91.5
LYMPHOCYTE PERCENTAGE 7.4
MONOCYTE PERCENT 0.9
EOSINOPHIL PERCENT 0.0
BASOPHIL PERCENT 0.1
IMMATURE GRANULOCYTE PERCENT 0.1
ABSOLUTE NEUTROPHILS 1.8-6.6 10*9/L 8.4
Lymphocyte Absolute 1.0-4.8 10*9/L 0.7
Monocytes Absolute 0.2-0.9 10*9/L 0.1
Absolute Eosinophils 0.0-0.4 10*9/L 0.0
Basophils Absolute 0.0-0.2 10*9/L 0.0
Immature Granulocytes Absolute 0.0-0.05 10*9/L 0.0
NRBC PERCENT 0 % 0.0
NRBC ABSOLUTE 0 10*9/L 0.00

After I got back in my bed, the anesthesiologist assistant came in to discuss what was planned as far as keeping me asleep. I’ve usually chatted with the anesthesiologist department days before the procedure but this time around I hadn’t and I was worried whether or not the hospital staff  could handle it – other hospitals had canceled on me in the past because of the complexity of the condition and the deadly consequences of Malignant Hyperthermia Reactions. She was very thorough in getting a detailed history on my case, pretty much assessing each one of my body systems. That in and of itself was refreshing, especially because I have a long history of complications and most doctors don’t take the time to look at the full picture as a whole. The main anesthesiologist came in during this time as well, very curious about my family history of malignant hyperthermia. Most hospitals have never seen a case, so the doctors are usually quite interesting in knowing the extent of the condition and who else in my family has it.  And again, he reiterated they’ll take caution to make sure nothing happens while I’m under through monitoring the entire time – I breathed a sigh of relief. 

Malignant hyperthermia (MH) is a potentially fatal, inherited disorder usually associated with the administration of certain general anesthetics and/or the drug succinylcholine.
The disorder is due to an acceleration of metabolism in 
skeletal muscle. The signs of MH include muscle rigidity, 
rapid heart rate, high body temperature, muscle breakdown andincreased acid content. Immediate treatment with the drug dantrolene usually reverses the signs of MH. The underlying 
defect is abnormally increased levels of cell calcium in the skeletal muscle.
There is mounting evidence that some patients will also 
develop MH with exercise and/or on exposure to hot 
environments. Without proper and prompt treatment with 
dantrolene sodium, mortality is extremely high. The best way to protect yourself, your family, your patients and facility,is to be prepared before it's too late. 
(Taken from http://www.mhaus.org/)

Originally they were planning to use Propofol, which I had used in the past and is quite safe for individuals with malignant hyperthermia, but my drugs somehow changed by the time I was back to the OR and I was given Versed instead. Thankfully, though, they gave me a number of anti-nausea medications, including a scopolamine patch and an injection of Zofran. I always appreciate it anti-nausea meds before going under because I am nauseated enough as it is without the help of anesthesia.

Once the anesthesiologists left, the vascular surgeon came to check to see how much longer until we were ready to go. We were only a few minutes away – waiting for test results at this point. The vascular surgeon asked if I had any questions, and of course I did. My biggest worry was they were going to to do surgery while I was under without talking to me about it first – just a hunch- a correct one from what was said when I had arrived at the hospital that morning. While a little awkward, I knew I had to express to them that I wanted nothing until we had more time to discuss all the options available for treatment and what  would be the best course of action with the longest results. I was also concerned about fixing one or two of the compressions, while not fixing the others, and the damage it could cause later down the road – I’ve heard hundreds of horror stories and I didn’t want to become one of them. Thankfully, the vascular surgeon agreed with my logic, but I can’t help but wonder what would have happened if I had not opened up about my concerns. Would they have done the surgery without consent? Who knows.

A minute or two after  the surgeon left, another nurse came down to escort me to the OR. We joked around about how we both needed more coffee that morning. I couldn’t even have any that morning and I was already having trouble staying awake (who needs anesthesia anyways -I’ll be asleep in minutes) I asked her to slip some coffee in my IV while I was waking up; She thought caffeine eye drops would be more effective. Our banter broke the feelings tension and  fear I was slowly building up along the way.

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As soon as we got to the OR, I was placed on the operating table, underneath the x-ray machine, and hooked up to every monitoring advice imaginable. They gave me a quick shot of versed and I was out, don’t think I last more than 10 seconds.

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I woke up in my hospital room around 10:00 A.M. The procedure didn’t take too long, but I had slept through in its entirety. I feel  a huge bandage down the side of my neck, causing me to be confused. I was so far out of it still.
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I was told they decided to enter through my jugular, instead of the femoral as planned – I know there was a reason for this, but I honestly can’t remember. The nurse tells me I have to wait at least 45 minutes until I can be discharged. She hands me water to drink and asks if I’d like to watch TV – I didn’t. I just wanted to go back to sleep, which I did.

The vascular surgeon checks in with me, telling me how the procedure went well and that they did re-verify the extent of my Nutcracker Syndrome and May-Thurner Syndrome, and confirmed that I do have Pelvic Congestion Syndrome as well. They did not look at the SMA Syndrome or the Celiac Plexus since they only focused on my veins today. I was still out of it when he was talking, but I heard him say my renal vein was at a 10. Although it wasn’t really clear, I believe he was referring to the pressure gradient of my renal vein – which anything above the number 3 is when surgical intervention is typically recommended. He said to set up an appointment in a week or two to go over surgical options. I thanked him and fell back asleep.

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Venography for Nutcracker Syndrome

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Pelvic Congestion Syndrome – Ovaries

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May-Thurner Syndrome

At exactly 10:45 A.M. my husband came into the room. He is frustrated because he couldn’t find where I was recovering. He was sent back and forth across the hospital twice before decided to just go back to the place we started, which was exactly where I was at the whole time. I chugged some water down and paged the nurse – I can go home now, right? She comes in, unhooks me from all the machines, and goes to the lockers to retrieve my clothes. I quickly get changed and it’s over. Surprisingly not too bad, but I was still out of it when I left the hospital. All I wanted, though, was coffee. Dear god, I NEED coffee. Thankfully, my husband was nice enough to stop on the way home.

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When the medications wore off that afternoon, that was when the pain actually set it. It was too bad until I tried to move in any way. You don’t realize how much you use your neck muscles for minimal movements. They advised I’d be in pain for the next 48 hours and then it should subside. The pain seems to be getting better hour by hour, but still quite uncomfortable overall. I spent the afternoon on the couch, afraid to move. I slept most of yesterday afternoon, early into bed last night, and slept in again today. Evidently I was extremely tired. I do have restrictions to follow for the next few days, such as no strenuous activities or lifting anything over 20 lbs for the next four days, but otherwise the whole thing was not too bad. 

I was able to take my bandage off tonight, which was great since it was really starting to irritate the skin underneath it. The hole in my neck doesn’t look too terrible either. I expected much worse.

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The remaining hole in my neck

Now I just have to wait until next week to decide if or when I am having surgery, depending on what they recommend.

Maybe there will be surgery for Christmas after all… I guess we’ll see.


References:

Malignant Hyperthermia Association of the United States (2015). What is Malignant Hyperthermia? MHAUS Website. Retrieved on December 04, 2015 from http://www.mhaus.org/

Society of Interventional Radiology (2015). Venography (Venogram). Radiology Info Website. Retrieved on December 04, 2015 from Radiologyinfo.org.

Feeling kind of fragile lately, I know only I can save me now…

“Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder”

(Jennifer Marks – Lyrics Below)


Lately,

I feel the universe is testing me

To see if I will break…

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What do you do when you can’t do it all?
When everything is extremely important and none of it can be eliminated?
And all of it is time sensitive?

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 It feels like it’s never going to end.

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But so much has happened, and is happening

in both my life and my health.

I’ve been waiting for a free moment to update,

but I don’t even know where to start.


No Sleep September 

southpark sleep

Wasn’t able to sleep for weeks all through September, although it seemed to run into the first week of October. No idea why, I just suddenly became “nocturnal”.  I would be wide awake until about 10 am before I would then crash out until about 5 or 6 pm. I tried forcing myself to stay up, hoping I’d fall asleep early, but even that didn’t work. Again, I wouldn’t get tired to 10 am and would be “stuck” awake for 2-3 days. It was awful.

I am FINALLY back to sleeping at night, but now all I want to do is sleep. No amount of caffeine seems to fix my tiredness. I talked to a few of my doctors about it and none of them really seemed too worried about it except for my therapist. I guess we’ll see how the next few weeks go and bring it up again at my follow-up appointments, but I’m really worried how drastically my sleep patterns have changed.

The ups and downs with doctors

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Gastroenterology

394_Stomachache

I had a follow up with my GI doc mid-September. After meeting with vascular surgery and the lack of medical evidence from the last few rounds of GI testing, I assumed we were pretty much done. Boy, was I wrong.

Despite reviewing the update from the vascular surgeon, she wanted to order even more testing. Excuse me, what? I wasn’t happy, to say the least. Especially because a few of the ones she ordered were ones I’ve already had in the past that all came back normal, not to mention that every GI test involves some sort of pain or torture.I also really don’t want to do them again, but she wanted to see if there is any change between then and now, especially with confirmation of Superior Mesenteric Artery Syndrome (SMAS) now. Plus, she talked with the vascular surgeon and convinced them that I needed to redo the upper GI series/small bowel follow through, even though he said it wasn’t necessary. This test, out of all the medical tests I’ve ever had, has been nemesis since early childhood. Even now, I cringe thinking about it.

Really, though, I have been having medical testing multiple times a week since February and frankly, I’m just tired. But if I decline to do them, then I am a “noncompliant patient” and it could affect my disability claims. *Sigh* There’s no winning, so here I am, yet again.

Vascular Surgery

keep-calm-im-a-vascular-surgeon

I was excited for my follow with the vascular surgeon with how well our consult went the month before and was ready to get a game plan going to treat the vascular compression syndromes. Originally, I was scheduled for an afternoon venogram that day to measure the pressure of blood flow in the veins that were compressed and see if they could confirm a diagnosis of pelvic congestion syndrome. I should have known that the plan could potentially change (especially after he changed his mind on needing additional GI testing), but he seemed so confident at our consult that I didn’t even give it a second thought. Wrong again.

A week or so before my appointment, I received a call from the same hospital asking to schedule with Dr. So-And-So. I had no idea who Dr. So-And-So was. His receptionist explained that he was a GI surgeon that my vascular surgeon called to set up a consult with because he will be assisting in my surgery. MY SURGERY?!?!?! It was news to me, but I scheduled anyways. I think to myself, FINALLY! We’re going to do something. I was both excited and petrified at the same time, especially given the potential severity and risks (depending on which type of surgery they were looking at doing).

I started making lists of things to get myself ready, reading about the pros and cons of each procedure, etc. I even made it Facebook official:

September 22:

I just got a call from the GI surgeon at University. The Vascular Surgeon called him to see if he could assist with surgery, so I have my consult end of October. Looks like we’re going in to fix the SMAS, Nutcracker, and May-Thurner all at once.

I’m petrified and ecstatic all at once. I’ll have to wait until all testing and consults are done to see if they are stenting the veins or completely “rerouting” them. Huge difference in recovery time. From what I hear full recovery isn’t guaranteed or it can fail entirely, but this is my only shot of ever feeling better.
Hoping for surgery around Christmas.

Essentially, overplanning like I usually do. Then I realized, I didn’t receive the document about prep instructions for the venogram in the mail as I expected. I decided to call back to the hospital to see what I needed to do. Good thing I called, though, because they didn’t schedule me for a venogram like I was told during my consult. It was just a follow-up appointment. Um, okay… I thought maybe they found something different during their medical conference, where they were going to review my scans again to make sure nothing had been missed. I was even more anxious for the follow-up now.

The day of the appointment, we drive the hour and a half up there and we’re almost late because traffic was horrible. I hadn’t slept well the night before at all, but I just really wanted to know what was going on with surgery. For some reason, I just had a really bad feeling  – it wasn’t until the appointment was over that I figured out why. We meet with a student, who takes the basic info about how I am doing and how literally nothing had changed since our first meeting together.

The doctor comes in a few minutes later and says that he thought all my testing that was recently ordered through my GI doctor (at another hospital, I might add) would have been done by now. Nope, we JUST got it scheduled. He says there’s nothing to really go over until all that’s done. So, then this appointment is a waste of time? Basically – Sorry that no one called to verify. I’m speechless. I ask him why we needed the tests run again – just to see if there is anything else it could be. Wait, are we NOT sure anymore? Well, we know that the compressions are there, but we don’t want to make it worse with surgery if something else could possibly be causing your symptoms. What happened with doing the venogram? I’m okay with scheduling that but if the tests show something else, then we can pursue that first. Then why are you sending me for a surgery consult with your colleague, who is supposed to assist in the surgery that  you don’t want to do because it could potentially make my symptoms worse? 

I didn’t say the last part, of course, but I left my appointment both angry and frustrated yet again. I’m so tired of doctors changing their minds on what they want to do. So far, all they keep doing is running medical test after medical test, not providing any treatment.It just feels like a giant waste of time. I came home and vented about this on one of the support group pages I follow and I’m pretty sure that  someone pinpointed exactly why this doctor changed his mind so suddenly. It’s happened to her too, multiple times. Because of the complexity of the surgeries, on top of the fact that it would be multiple interventions at a time and with more than one doctor performing, they get “scared” to “make it worse”. They begin stalling by ordering more tests or try this medication, even though it’s already been done – just to buy time. To me, it makes sense, although I can never prove it.

My venogram is actually scheduled now for December 3 after my continuous testing supposedly ends. We’ll see if that even happens. If it doesn’t, I don’t know what I’ll do at this point.

A new Primary Care doctor

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In the midst of all the other doctor drama, I also had to begin my search once again for a new primary care doctor. If you remember from early posts (And it’s a sad pictureSay something, I’m giving up on you, I know the shame in your defeat or Oh doctor, doctor), finding a GOOD primary care doctor has been the biggest challenge in my quest of finding a diagnosis. There’s something in this town that make doctors… oh, what’s the word?  oh yeah… WORTHLESS. Which is why I travel so far to see specialists, despite living in a relatively large city. But seeing as my past PCP disappeared out of nowhere, I had no choice but to find a new primary care physician (although to be honest – I only stayed with her out of convenience, despite that she worked in the worst medical office consisting of the rudest staff to I’ve encountered to date).

Earlier in the year when I had tried to find a new doctor, I originally called a clinic that ended up not taking my insurance, but the receptionist who answered actually was on the same insurance plan. She told me to try one specific clinic because they were great and she had felt my frustration with quite a few of the other doctors in town. Glad it’s not just me. However, after the fiasco with the few offices I had tried back in the Spring, I was too worn out to try and find a new doctor, so I never called them. Luckily, I kept their number, though.

I was so worried about having to go through this process again and I really worked myself up about seeing a new doctor. But ultimately, he turned out to be better than expected. The clinic was both clean and nice. The receptionists were friendly and organized as well, which was a huge difference from the last practice. The wait wasn’t too long and the doctor spent a great deal of time with me, learning about my diagnoses, comparing “expected symptoms and treatment” to my own personal experiences, and he actually did an exam. He asked me if there was anything else I needed him to do, to which I replied I had short-term disability and work paperwork that I needed to have filled out because they wanted me back at work following this appointment (which had been stressing me out over the last few weeks, to say the least).

What amazed me, though, was the fact that he refused to fill them out. Instead, he wrote them a letter saying that I am really sick with multiple complicated diagnoses and it could take a while to get a treatment plan going before I will be well enough to work again. I was in shock. He believed me! I can’t even put into words how grateful I am for him taking the time to sit down with me and listen to what I had to say. He scheduled me for a follow-up in a month just to see how things are progressing with my specialists and ordered my general, yearly bloodwork to make sure nothing is missed along the way. I’m so glad to finally have a good doctor that is also close to home.

Work and disability

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Off the advice of my therapist, I decided to start my social security disability claim over the summer just in case I wasn’t able to get back to work as fast as I had originally thought. It was a good thing I did since I currently have no expected return to work date now. So far, the process hasn’t been too bad. However, a few weeks ago, I received a letter in the mail stating I was being sent for a psychiatric evaluation. I was stunned and worried. Did they think it is all in my head? Do they think I’m lying about my symptoms? why are they doing this? Needless to say, I was worried. I talked with my therapist about the neuropsychologist that was doing my mental comprehensive exam with, and she, unfortunately, didn’t have the best news for me since she was familiar with him. Great. Again, I overprepared myself with tons of documents and information to bring to the exam, especially since she told me to bring proof of a diagnosis so he doesn’t label me as having a somatization disorder. But, overall, I think the appointment went well. Despite the fact that he wasn’t exceptionally outgoing or friendly, he seemed to identify with my answers to his questions and stated that I was very pleasant and intelligent. So I am hoping this appointment helped my case, instead of hurting it. Still, I worry about my future without disability at this point, especially considering that the number of appointments and testing don’t look like they’ll be decreasing any time soon.

Later in the afternoon, following my appointment for the CE exam, I received a call from my manager at work. As soon as I picked up, I knew something was wrong. He conferenced in a woman from the human resources department and instantly I knew – I was getting fired. I held back my tears as they advised me that since I had no expected return date that they would need to let me go because of business needs. I was heartbroken, but I understood. Still, it didn’t stop oncoming fear and panic inside me. My thoughts were racing through my head. I felt like I couldn’t breath.

What am I going to do?

I’ve never been fired from a job before.

How is this going to affect my short-term disability claim?

Or the long-term disability claim that was just initiated the day before?

How am I going to live? or survive?

We need to renew our lease next month…

What am I going to do?

I was beside myself. More importantly, I was ashamed. Up until now, I could still say I had an amazing job and that I was just on medical leave. Now I’m just unemployed. I have worked consistently since the age of 15, no matter the symptoms but only started having real trouble with maintaining work this past December when symptoms got out of control. I felt like a failure. Luckily, though, I am still eligible to continue my short-term disability benefits and finish my long-term disability application since I was on medical leave during my termination. Still, so much more has been lost than gained and it’s been difficult to remain positive.

To top it all off, getting fired has added even more work for because now I have to write  a letter to each and every state asking to return my insurance licenses so that I don’t receive fines for not continuing education or fees, in addition to the separation paperwork, returning equipment, moving and changing all of my policies. And remember, I still have all of these doctors appointments and medical testing scheduled multiple times a week, maintaining my current STD claim, finishing up the paperwork and processing for both SSDI and LTD, and finals for school. I’m about to pull what little left of hair I have left out of my head, I swear. But somehow, like everything else, it will get done. I’m just not sure how to do it all exactly, but I have no choice but to find a way.

change-is-imperative

And last but definitely not least, 

I received yet another diagnosis.

But seeing as this post is already too long, on top of the fact that I am exhausted from all that has been going on, I’ll update this information with more specific posts on some of the medical testing I’ve been going through. Thank you all for listening and allowing me to vent about everything going on. In the meantime, I’ll try not to let all of this bother me,  although that is easier said than done. I just need to focus and get it all done the best  that I can. Really, it’s the only thing I can do.

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Fragile by Jennifer Marks

There’s a hole at the bottom of this cup
I want to fix it so I can fill it up
There is sand where the flowers used to be
I was happy then and you were here with me

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile

There is dust in the seat where you once sat
Time is cruel it’s too stubborn to turn back
My heart’s so heavy it will never float
I’m holding on, cause I’m afraid to let go

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of …

Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile.