Dying Isn’t So Bad

I am alive. I am so very glad that I can say that because I nearly died this year. Having a genetic condition that nearly killed me in June made me face reality—Life is but a fleeting moment in time.  We all know this on some level. Some of us have had either friends or family die from disease, accidents, or self-inflicted causes.  Some of us have had friends or family die from old age.  Either way—we know that life is short.  But, not all of us have faced our own mortality. Not all of us have said to our children and spouse “I love you” while lying on the floor, thinking  “this may be the last time I say those words.”

If you have the time, I’d like to share my story with you.  But first, you will need to understand the genetic condition from which I suffer—or just skip it and get to the dying part if you prefer. I will be brief on the specifics of the disorder.

What is HHT?

The following information is from http://curehht.org/about-hht/

I have a genetic disorder called Hereditary Hemorrhagic Telangiectasia (HHT) that affects about 1 in every 5,000 people.  It is an indiscriminate disorder that affects all genders, races, and ethnicities.

HHT is a mutation of the genes that are responsible for the growth pattern of arteries and blood vessels. As most of you know, there are two types of blood vessels: arteries and veins. Arteries carry blood under high pressure (pumped from the heart) and veins carry blood under low pressure, back to the heart. An artery does not usually connect directly to a vein. Usually there are very small blood vessels called capillaries that connect an artery to a vein.

A person with HHT has a tendency to form blood vessels that lack normal capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through very small capillaries. The place where an artery is connected directly to a vein tends to be a fragile site that can rupture and bleed. A blood vessel that is abnormal in this way is called a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) if it involves small blood vessels. Telangiectasias most commonly occur on the skin of the face, hands, and the lining of the nose and mouth. The telangiectasias on the lining of the nose cause recurrent nosebleeds—the most common symptom of HHT. An abnormality that involves a larger blood vessel is called an arteriovenous malformation (AVM). Some people with HHT will also have AVMs in one or more organs. AVMs occurring in the lungs and brain and can lead to serious complications.

For more information, visit http://curehht.org.

Pass Her Along

I have had an AVM on my tongue burst in the past, and knew how to judge when one was getting large enough to burst.  Three years ago, I was denied treatment for an AVM on my tongue that I knew would burst within the next few years.

I guess both the Doctor and HMO (Tricare) wanted to pass me along to someone else. In the military, we move an average of every 3 years.  When something is wrong that a doctor doesn’t know how to treat, they can easily ignore you, knowing that eventually you will move and become someone elses problem.

I was right. In early April of this year (2014) the AVM on my tongue burst.  At first, it bled for maybe 20-40 minutes every day. About one week later I had an episode of bleeding that lasted for over an hour.  My husband drove me to the nearest ER in Amberg, Germany.  The language barrier made the whole ordeal much worse as we tried to explain that I had a bleeding condition and not an injury.  After much conversing, gesturing, and google translating, a doctor finally understood what was wrong with me. Germans use the old name, Olser Weber Rendu, for HHT. They simply call it Osler’s. However, that didn’t make much of a difference, because I was told that they could not treat me there and that I needed to go to Regensburg instead—that’s about 1.75 hours away! Well, the bleeding finally stopped while I was at the hospital and they sent me home.

I tried to make a doc appointment with my primary care physician, but because the Army is so understaffed, I could not get an appointment because a bunch of soldiers had just returned from Afghanistan. “Soldiers first” was all I heard from the appointment line operator for two weeks. I don’t mean to sound ungrateful, hateful, or even disrespectful, but in this case I think I should have come first! The soldiers were getting post-deployment check-ups. It’s not like they were sick, dying, or injured!

Once again, I was passed along by not only the doctors at Amberg Hospital, but also by the clinic on post.

Though my tongue bled off and on for a few weeks afterward, I gave up on seeing the doctor. The bleeding finally stopped entirely in early May—for a short time anyway.

Because of the frequent bleeding, I became anemic. Not terribly severe, but anemia is never a good thing.  I continued to go on as if nothing was really wrong—wrong choice.

As I Lay Dying

In mid-June, the AVM on my tongue started to bleed a little.  It got progressively worse every day for 4 days.  On Thursday, June 19, 2014, my tongue began to bleed substantially at around 7am.  I used an entire roll of VERY absorbent paper towels to try to stop the bleeding.  I can honestly say that Viva paper towels are the best on the market.  I held the paper towels onto the top of my tongue and squeezed, trying to create a clot.  The paper towels became soaked through and useless before a clot could form.  After about 2 hours, I gave up and just let it flow—swallowing and spitting out blood for another 2 hours.  Remember, this is an AVM, which means that it is arterial blood under high pressure pumping through a smaller vein—in other words; the flow was steady and squirting with every beat of my heart. You may be wondering why I did not go to the ER after 2 hours. I didn’t bother for two reasons:

1) I thought it would stop eventually, and I assumed that it would most likely stop in the ER like it did before.

2) The doctors told me that they could not treat my disorder and as far as I could understand, I was not to go back for treatment of my AVM.

AVM Photo taken on June 19, 2014 after 2 hours of bleeding.
AVM Photo taken on June 19, 2014 after 2 hours of bleeding.

After 4 hours of steady bleeding, I started to feel light-headed. I called my husband and told him that I needed to go to the hospital.  At this point, I was starting to get scared.  I figured that at the very least, they could give me blood if I needed it.

My husband happened to be on the other side of the tank trail—30 minutes away.  The situation rapidly worsened within 15 minutes of my initial call to him.  I was half way up the stairs to gather a few things for the trip to the hospital when I suddenly became nauseous, dizzy, and my vision became fuzzy and spotted. I was suddenly hot and broke out in sweat.  I sat on the stair landing and leaned against the wall with my eyes closed.  I told my daughter, Erin, to call her father and tell him that I needed an ambulance.  I noticed at this time that I had finally stopped bleeding.

Being the spouse of the NCOIC (Non-commissioned Officer in Charge) of the DES (Department of Emergency Services) is quite a benefit.  Neither my daughter nor I knew the “911” number for Germany.

Lesson: Memorize the emergency services number immediately upon moving to or visiting a foreign country!

My husband called the Desk Sgt. and told him to request a paramedic.

Meanwhile, as I sat on the stair landing, I suddenly had the urge to pee. So, I gathered all my strength to descend the 6 steps and walk 5 feet to the bathroom.  I made it to the bathroom entrance—and immediately collapsed.

The linoleum felt so nice and cool. It felt good to lay on that cool linoleum with my eyes closed. I wasn’t afraid. The pain ended. I could sleep and it was good. Somewhere in the distance, as if at the other end of a long tunnel, I could hear a voice.

“mom”

I opened my eyes and saw my daughter standing over me.  She is so brave, I thought. She is so calm.  I wanted to get up, but I had barely enough energy to lift my head, which caused too much dizziness.

This is the moment when I realized that I might be dying.

I wanted my kids to know that I loved them. I wanted to tell my husband that I loved him. I wanted them to know it was okay that I was dying and I was not afraid.

My husband arrived just minutes before the paramedics.

They were all there. My husband, my son, and my daughter.

“It’s not so bad,” I said.  “Dying isn’t so bad.”

I told them that I loved them.

The paramedics arrived. They took my blood pressure and oxygen saturation levels.  My bp was 74 over 50 something. I think my My oxygen saturation was 90%.

Blood Pressure Chart Source: bloodpressureuk.org
Blood Pressure Chart
Source: bloodpressureuk.org

 

I am no longer sweating. I am not hot. I am cold. So cold.

I no longer had enough energy to talk to anyone. I was tired. I wanted to sleep.

I was not and am not afraid of what comes after death, but before this experience, I was afraid of the dying part. I am no longer afraid of the dying part of death.

Dying isn’t so bad.

As you can see in the chart above, a bp rate of 74 over 50 something is VERY bad. The EMT arrived and I was quickly moved from the bathroom floor to the ambulance.

Thinking back on that day, I am certain about one thing—I do not want to die on the bathroom floor!

The EMT’s were concerned enough that they had a doctor flown in a helicopter to my house.  That helicopter landed in the field behind my house.

I really wish I had a picture or video of that.

My daughter told me that my neighbors all stood out back, watching the helicopter land. One of my less tactful neighbors made a joke about it, and my daughter turned to him and said “that helicopter is for my mom” while giving him the evil eye.

The EMT started an I.V. solution for dehydration and to add fluids into my veins and arteries.

The bleeding only stopped because there was not enough pressure to pump the blood out through the AVM.

I vaguely remember the trip to the hospital in the ambulance. I vaguely remember those first couple of hours in the emergency room. I was so very tired.

Over the course of the next 5 hours, my bp rate slowly increased thanks to the I.V. solution.

The diagnosis was hypovolemic shock.

Hypovolemic shock, also called hemorrhagic shock, is a life-threatening condition that results when you lose more than 20 percent (one-fifth) of your body’s blood or fluid supply. This severe fluid loss makes it impossible for the heart to pump sufficient blood to your body. Hypovolemic shock can cause many of your organs to fail. The condition requires immediate emergency medical attention in order to survive. Source

I was told that if emergency services had arrived any later or waited too long to begin the I.V. solution, I could have died.

I may not have been as close to death’s door as I thought, but that is as close as I want to be until I am an old woman.

I vaguely remember the ambulance ride to the hospital. What I do recall is the EMT trying to keep me awake. He spoke clear English with a lovely German accent. It was soothing, but persistent enough to keep me awake. I also recall a lecture about waiting too long to go to the hospital. I promised him that I would never wait more than an hour, to which he replied—“no. you go right away. You have lost too much blood. An hour is too long.” So I promised him that I would not wait at all and I would go to the ER immediately if the AVM bled again.

Here’s another thing that I learned through this experience:

It is true that near-death experiences make the world seem brighter (i.e., colors are more vibrant).  It makes food taste better. It makes every moment precious.  It makes one re-evaluate their life and their goals for the future.  It is also true that after a while colors are normal, food is food, and every moment is not as precious.

What is not true: your life does not flash before your eyes.

Recovery and Surgery

At the hospital, doctors and nurses swarmed me. I honestly do not recall much of what happened. I was admitted to the hospital. The staff wheeled me to an elevator. I think we exited on the third floor, but I am not certain.

It amazes me how different hospitals are in Bavaria as compared to the ones in the States. My room was stark. It was cold too. Though that is not uncommon in most U.S. hospitals, the most noticeable difference was the crucifix on the wall.

Crucifix accross from my hospital bed
Crucifix across from my hospital bed

Though I am not Catholic, I must admit that this little plastic crucifix gave me hope, comfort, and a feeling that everything would be okay. It reminded me to pray and give thanks to God that I was still breathing.

Amberg Hospital Room
Amberg Hospital Room

I admit that germans know how to make a person cozy.  The pillow and comforter were stuffed with feathers! Once the radiator was turned up and I was snuggled into that feathery softness, I was warmer and felt pampered. Sleep was coming for me, and I was grateful.

I will not bore you with the all of the crazy details, but I did eventually see a slew of doctors over the next 2 months.  After lots of work, the wonderful staff at the Tricare office secured the best care possible.  I had an echocardiogram, an endoscopy, and an MRI.

The results:

I have a Pulmonary AVM, and a small AVM on my duodenum (the first section of the small intestine).

Though I am not currently at risk of internal bleeding, I know that eventually—when I am much older—these AVM’s will bleed.

In August I had a laser treatment on various  telangiectasias in my mouth and nose as well as the large AVM on my tongue (plus a smaller AVM on the tongue).

Surgery (1)
This is me when I got out of surgery in August

This is what I ate for two days while in the hospital.

Hospital Food--YUM! (Not!)
Hospital Food–YUM! (Not!)

That porridge looking stuff was absolutely disgusting!

The recovery was long.  Iron supplements and healthy eating were imperative.  I lived on homemade protein yogurt smoothies for the first 2 weeks and then slowly added soups, stews, and soft foods such as mashed potatoes to my diet.

It was months before my iron levels, red blood cell count, and plasma were normal.  I lost about 20 pounds from my inability to eat much in the way of solid foods between April and September.

It was not all terrible though. I did manage to have some fun before my surgery. I attended the German-American Volksfest the weekend before my surgery.  I drank lots of nutritious German beer and ate plenty of bratwurst.

Beer and Brats--It's what the "Doctor" prescribed.
Beer and Brats–It’s what the “Doctor” prescribed.

 

I finally have the same energy levels as I did before the bleeding started and am ready to get back to a normal life of DIY projects and exploring Germany.

I hope you will join me for my next project–the guest bathroom make-over on a $20 budget.

If you made it to the end of this post, Thank you! I know it was long and tedious at parts, but I just felt the need to tell you why I have not been around, and to let you know that dying really isn’t so bad.

 

 

 

 

 

13 thoughts on “Dying Isn’t So Bad”

  1. You have my absolute admiration for your strength in facing this adversity. Even though I have a medical background, I had not heard of this condition, and from what you say, not too many people have either. Thank you so much for sharing this very intimate story, and I very glad that I am able to read it. I hope it will raise awareness of the problem. I also hope you will continue to live your life and create many more dreams for many years to come. I will follow your journey in the blogosphere.

    Liked by 1 person

    1. Thank you so much for taking the time to read the post and for your comment. I have searched and searched the internet for others with blogs or posts about their experiences with HHT, but have only seen a handful at most. Sharing this was theraputic, encouraging, and above all else–necessary. I plan to share more about my experiences with HHT in hopes to find others with the same disorder. After all of my searching I thought “I can’t be the only one looking for a connection.” So, I figured that I might as well start a blog series about it. At the very least, at least I can raise awareness as you mentioned.

      And thanks for the follow! It means a lot to me.

      Liked by 1 person

    1. Thanks for the info, but I’m not sure if can be used on AVM’s. I’m sure it works great for cuts and open wounds, but AVMs are vascular. I do know that Tansexamic Acid slows the bleeding down–that’s what the used in the ER, but it doesn’t stop the bleeding. I’ll make sure to ask the next time I go to my ENT just to be sure.

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  2. What a terrifying experience for you and your family! I’m relieved you are doing better and have returned to blogging. I hope you don’t have to go through this again for a very long time.

    Liked by 1 person

    1. Thank you. So far, I’m doing quite well and should be good for the next couple of years. Though it was an aweful experience, I am actually a better person for having gone through this. Somehow, the little annoyances aren’t such big deals anymore, and the things that used to big deals are now not so terrible.

      Liked by 1 person

  3. Hello, I have HHT, as well, and my troubles with it just started this past year (similar to you). I am only 26. I want you to know you are not alone. Thank you for this post. Please consider joining some support groups on Facebook (https://www.facebook.com/groups/5484437834/10152936492462835/?notif_t=group_activity and https://www.facebook.com/groups/152612813303/) and visiting CureHHT.org (official site of the HHT Foundation, International). The HHt Foundation is a nonprofit that works to generate HHT Awareness, funding and research.

    Best and Happy Holidays,
    Sarah

    Liked by 1 person

    1. Thanks for the info. I did go to an HHT center in Homberg–at least it was listecd as an HHT center on the HHT.org website. I found out that the Doctor who headed up the HHT Clinic left a few months before I contacted them, but the ENT that I saw has been treating HHT for 20 years. The first time I looked into the HHT website was in 2004, when I had my first AVM hemorrhage on my tongue. I went to the HHT Center in San Diego, California. Unfortunately, Tricare doesn’t like to pay for patients to travel very far for ilnesses and does not usually pay for specialty clinics. I was lucky this time though.

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  4. Hi, my partner has HHT and so have many members of his family. His great-grandfather had HHT and came to Australia from Germany more than a hundred years ago. He had many children and his children also had large families. There are so many descendants in the Brisbane and Toowoomba area of Australia who have this condition and many don’t know much about their own condition and their doctors know even less. Luckily we have been able to research and explore therapies (and diet interventions) that help to reduce bleeds. There is a professor in Brisbane who has taken an interest in HHT and is treating more and more family members. The main reason for responding to your very brave and vivid description of your experience with HHT, is to alert you to the presence of HHT Centres of Excellence in Germany. My partner (who speaks some German) has been in contact with Dr Urban Geisthoff who used to be at the Cologne HHT Centre of Excellence http://www.geisthoff.de He has also visited Dr Geisthoff. There is an International HHT website that gives details of all HHT Centres of Excellence all over the world and also personal stories, however I’ve just checked and it doesn’t seem to be functioning at the moment. Try the HHT International Facebook page. There is also a HHT Centre of Excellence in Munich. Tactical management of HHT is the key to living a long and healthy life with this condition. We find that removing certain items from the diet of a HHT sufferer really helps – no foods that thin the blood (wine, berries, chilli – a little beer is okay). You would probably already be aware that HHT sufferers need to avoid aspirin – this is standard medical advice for anyone with HHT.
    Let us know if you need any more information.
    Kind Regards
    Alison

    Liked by 1 person

    1. My heart is with you and all of the family members who are suffering with HHT. It’s certainly no picinic! I was able to see a doctor in Homberg that used to be work in an HHT Center. He had been treating this disease for 20 years. When I had my first hemorrhage, I was able to see the wonderful team of doctors at the HHT Center in San Diego, California. I almost chose the center in Cologne, but was told that the HHT Center in Homberg would be closer and due to it’s close proximity to Landstuhl Medical Center, my husband was able to stay in the Fisher House (for military families/servicemembers) for free. My grandfather had it and so does my mother and my daughter. So far, mine has been more severe than anyone else in the family.

      I have been avoiding all the good painkillers since I was about 18. So far, I have had 3 elctric cauteries, and 3 laser treatments. The laser treamentst are the best! It lasts for several years.

      I am curious about the diet interventions that you mentioned. Is it true that tea and tomatoes are bad for HHT?

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  5. Hi Angelique, Sorry for the delay getting back to you re your diet question – a busy time over Christmas. Glad to see you have had some contact with the HHT Centres in Germany – we are aware that there are some wonderful centres in the US as well. Regarding diet triggers for HHT bleeds – it seems that anything recommended for the heart is bad for HHT, due to the blood thinning effect. This includes much of the ‘trendy’ good stuff – red wine and spirits, green tea, highly caffeinated drinks, fish oil, shark oil, olive leaf extract, chilies and hot spices, molasses, glucosamine, and berries (the more exotic such as Goji are even worse). We’re not sure about tomatoes, although these are mentioned on the HHT website. My partner Boyd can have one coffee a couple of times a week and also the occasional beer with no ill effect but when having bleeds, no alcohol. Diet triggers seem to be more of a factor from around the age of 40. His sister has more problems with HHT than he does and we would like to thank you for uploading your story as Annette recently had an episode very similar to yours and didn’t call the ambulance. Luckily she recovered without immediate medical intervention but is taking a long time to feel well again. Next time she may not be so lucky – your story has scared her enough so that next time all family members are aware that the ambulance must be called. Thank you for sharing…and caring. All the best, Alison, Boyd and Annette

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