What the #$%! Happened: The Aftermath

Drugs. That’s what I remember most from the hospital. It seemed like every half hour, a nurse was coming into my room and injecting me with or having me swallow drugs. I could barely stay awake. I remember falling asleep with half a peanut butter and jelly sandwich hanging out of my mouth while I was visiting with my Dad. I remember he let it dangle, then I woke up and chewed on it some more. Being on pain relievers – heavy duty ones at that – is a weird sensation. I won’t say that I liked them, but the few moments without them were excruciating. I think I would rather feel spaced out, but that is unnerving in a different way. It wipes away your memory. And God knows what you might say. As evidenced by these few shining examples of incoherent text messages.

I don’t know what I was talking about:

Apparently I did see bugs (spiders per my husband) and was scratching to get them off of me so the doctors adjusted my dosage immediately:

Yet, I was calm as could be when I texted Judi at 5:30 a.m. to tell her I was in the hospital. She had previously wished me a happy-first-day-of work:

We laughed about that later. I was also told to sleep by the nurses because I was becoming “delusional”:

I was also slightly irrational (I believed I failed Duane as a matter of fact):

(Apparently I did)

The truth is, I had no idea how truly lucky I was to even be in the hospital:

The truth is, I would not have made it in the hospital without the love, support and encouragement of my husband, my dad, my sister, my mother’s friend Gail and a few of my favorite friends. Judi who combed and braided my hair and massaged my hands and feet; Rachel who visited daily on her lunch break and brought me a Pillow Pet (which Sadie thinks belongs to her now) for comfort, magazines and Brain Teasers (also fun on drugs); and Chrissy who brought me magazines and helped me walk those first wobbly steps once I was out of critical care. Not to mention all of the cards, Facebook messages and emails you all sent. All of you and your kindness means the world to me.

“I just knew I would get something out of you being gone, Mama!”

I was discharged from the hospital exactly one week after I was admitted with pages of instructions on medications, next steps and follow-up referrals. I couldn’t tell you how many different doctors I saw in the hospital, let alone which ones were the ones listed at the bottom of the page. The medication list was daunting – I was afraid I couldn’t do it, even with my husband’s help. The clot was (and still is) in my leg and excruciatingly painful when I moved it. I was discharged with oxygen and needed help walking. Everything was so slow. The stairs is my apartment looked like a mountain and some days they still do. Still, I was home and that meant I felt a little better, at least. We took the medication a day at a time. I had three weeks to make the follow-up appointments. Hopefully I could walk by then, right?

I still don’t think I realized how serious my condition was until one of the doctors called me the day after I got home. We’ll call him Dr. H. His card, which somehow migrated home with me from the hospital, said “Medical Oncology and Hematology,” which terrified me. Preliminary causes of my Deep Vein Thrombosis (DVT) – or blood clot in my leg – were ruled as a result of birth control, not cancer (which everyone assured me I didn’t have) or blood diseases (which no one seemed sure if I had). I listened to his voicemail and there was certain urgency in his voice when he requested I call him immediately at his office. He sounded a bit taken aback that I was no longer in the hospital.

Me: May I please speak to Dr. H?
Nurse: Sure, hold on please, I’ll get him right away.
Waiting for what seemed like forever.Nurse: He had to go to the hospital for an emergency, but I have him on the other line. He needs you to come in to see him first thing in the morning.
Me: What? Why? The paper says three weeks!
Nurse: He believes your clot may be getting larger, which is very concerning. He wants you to go get a scan at the hospital in the morning before you come here. He wants you to stop taking Coumadin immediately and only take your injections. He wants you to take Aspirin daily. He’ll see you tomorrow at noon and explain everything then.
Me: Okay. Should I panic?
Nurse: No, but if you have any chest pains, shortness of breath or pain like before you came to the hospital, you need to go to the E.R. right away! Dr. H. takes the Pulmonary Embolism very seriously and if he wanted you to panic, he would let you know.
Me: Okay?

Great. I didn’t sleep that night. Doctor’s orders, though, and by 11:15 the next morning, I was in his office, scan completed and practically shaking with anxiety. I was the youngest person in the waiting room – or anywhere I had been relating to my illness, for that matter – and I was certain the doctor had nothing but bad news.

I was right. He even said it, “Sara, are you okay? You don’t look okay.” I told him it all sounded horrible as he explained what was happening. “Well, you’re not wrong. It’s pretty bad, I will say. You had me more than a little freaked out. You were pretty sick – the sickest I have seen someone in a very long time – and you have a long road ahead of you. But the good news it, it’s treatable.”

Great? I have at least learned to appreciate honesty. I now know exactly where I stand.

So, where is that exactly?

I have been diagnosed with antiphospholipid syndrome, which caused an acute clot in my left leg (DVT) which extends from just above my left knee all the way to my ankle. There is no blood flow in my femoral vein. Hence, it is excruciatingly painful. I can’t describe it accurately other than it feels like the soft and delicate flesh behind my kneecap has been put in a vice that keeps tightening. This pain extends all the way down my leg.

Antiphospholipid syndrome is a disorder in which your immune system mistakenly produces antibodies against certain normal proteins in your blood. It can cause blood clots to form within your arteries or veins. Antiphospholipid syndrome may lead to the formation of blood clots in your legs, (DVT). Damage to other organs depends on the extent and location of the clot. For instance, a clot in your brain can cause stroke. If a clot travels to your lung, as in my case, it causes a pulmonary embolism (PE). There’s no cure for antiphospholipid syndrome, but medications can be effective in reducing your risk of blood clots. I am currently on an injection (versus oral blood thinners like Coumadin) to ensure there is no change in my blood flow to prevent the clot from breaking apart again. It is unknown how long I will be on this injection, but it will most likely not be forever. It will be until my body “calms down.”

The clot itself may always be present in my leg. Some people’s bodies dissolve the clot, others do not and it turns to scar tissue. There are no medications that can dissolve the clot. It is up to the body. Even if it dissolves, I may always have pain in my leg and I may always have to wear a compression stocking to prevent further clots (lovely). The leg will now re-route blood through smaller capillaries and veins and may eventually bore through scar tissue if that develops. The pain is still intense, but little by little, it is getting better than it was.

Source

A pulmonary embolism is a blockage in one or more arteries in your lungs. In most cases, pulmonary embolism is caused by blood clots that travel to the lungs from another part of the body — most commonly, the legs. Pulmonary embolism can be life-threatening, but immediate treatment with anti-clotting medications can greatly reduce the risk of death. I was not given a clot-buster because the risk of hemorrhaging was too great due to my age. If my heart had been thrown into arrhythmia, it would have been different and the doctors would have had no choice. I am thankful that did not happen.

Right now, I have a collapsed lung. About an eighth of my lung was killed as a result of the PE. The lung will not heal or “come back.” The rest of my healthy lung will compensate for the loss and eventually the dead part will just be cut off from the rest of the lung to save the body’s energy. This is why it still hurts to breathe and will for some time. The clot in my lung just dies with the long. Again, no measures other than blood thinners were taken to break it apart due to the risk of internal damage. Sneezing, yawning, coughing and even laughing still cause a severe stabbing sensation.

Thankfully, none of my other organs were damaged in this ordeal. And believe me, they were all inspected, scanned, poked, prodded, X-Rayed and who knows what else!

So, what does this mean?

I will live to run again. Don’t worry, I asked Dr. H. that right away! He said I can start to workout and walk (or run) as I feel like it. I’m afraid that won’t be for quite some time, seeing as that right now I am breathless after walking ten feet. Dr. H. said I should be able to do everything I used to do before, but it might take me some time to get there. Again. What’s new?

Total recovery time is six months to one year.

The hardest part for me will be not being out there to coach my group. I’m afraid I’m not handling that too well because I feel like I am letting them down.

I plan to start working early in July. I am off narcotic pain relievers (except for bedtime) and have even driven my car (not very far) a couple of times this weekend. It is painful to keep my leg bent in the driver’s seat. My new job has been nothing but understanding and supportive and they are excited to have me join them. For that, I could not be any more grateful. I know how lucky I am in that respect.

I’ll see Dr. H. every couple of weeks for awhile. I’ll have another scan in another few weeks. Tests are still out for other autoimmune indicators such as lupus and rheumatoid arthritis and I won’t know anything in that respect for another three months or so.

The hope is that I do not experience another PE, but if I have any symptoms like that night, I am to go to the E.R. without hesitating. I got that now.

I may not need to say it, but always listen to your body. You never know when it might be trying to tell you something important. When you refuse to listen, it just goes haywire and forces you to take in interest.

Just look at me, I’m living proof.

Until the next mile marker,

In Case You Missed It….

What the #$%! Happened. In June 2012, I was incredibly lucky to survive a pulmonary embolism (or blood clot in my lung) that broke off from a clot that had formed deep within a vein in my lower leg. Read my story here.

Pace Points: Could YOU Have a Blood Clot? Learn more about my symptoms of DVT and PE and how you can help make sure you don’t have to experience the same thing!

“That’s Why I Pray.” God is not finished with me yet – and that’s why I’m still here! Do you believe in the power of prayer to make a difference? Do you believe there is hope when all seems hopeless? Do you believe in better days? I do now more than ever! The lyrics and meaning of this song got me through some seemingly hopeless moments in the days after my discharge from the hospital.

Comments

Pamdemonium2 says

June 26, 2012 at 2:34 am

Wow – how scary!!! I’m glad you are ok!

Nita Sweeney says

June 26, 2012 at 2:56 am

“I will live to run again.” YES! YES! YES! YES! YES!

runningperseverance says

June 26, 2012 at 3:38 am

you WILL run again and i wouldnt fear that anyone thinks you are letting them down. i know its hard to be there and not be running but i know you will still be there as much as possible and that your positive spirit and presence will keep the Lucky 13s going strong! sending healing thoughts always dear friend!

JennsAdventures says

June 26, 2012 at 5:29 am

So overwhelming — one day at a time!! You’re such a strong woman — and you have a phenomenal support system — there’s nothing you can’t do:)

Michel@BabyWeightMyFatAss says

June 26, 2012 at 1:53 pm

So, so scary. I’m glad they caught it early enough. I hope you heal really fast.

kbouldin says

June 26, 2012 at 1:49 pm

I know that you have the strength to persevere, Sara, you are one amazingly strong woman. I am thrilled to hear that you will be starting your new job in July! I am continuing to keep you in my thoughts and prayers!

Judi says

June 26, 2012 at 10:44 pm

It seems categorically wrong to laugh while reading this post given the seriousness of what you were experiencing, but when I read those text messages again, I admit that I giggled because it was also the first of many that I received that read, “OMG…laughing so hard…oh, it hurts, but it’s good!” And only you would apologize later for texting me at 5 something in the morning to tell me you had a PE. So so glad you went to the hospital and they took everything seriously.

Suzanne Westenhofer says

June 27, 2012 at 1:28 am

The texts cracked me up. I bet I would do the same thing! That’s wonderful news that it’s treatable and it sounds like you have a wonderful support system, a great new employer, and a wonderful doctor!

Jessica Fries-Gaither says

June 28, 2012 at 6:35 pm

No words, just hugs. You are indeed a lucky 13, through and through!

ari says

June 30, 2012 at 6:35 pm

Wow, what an experience. So glad that you’re okay, that you have a supportive new job and family, etc.