Not Fair

 I had my follow-up appointment on Wednesday up in Pennsylvania. The day started okay. I left early because I had never been to the office before and even with GPS, I have a propensity to get lost. I made it to my appointment a half hour early. They drew blood and did an EKG and then I saw the doctor.

Dr. O was upset because I gained back 18 pounds of fluid that I was able to shed while in the hospital. The excess fluid puts pressure back on my heart and lungs. She stopped my Lasix and started me on Bumetanide, which is another fluid pill. She said I could come back in a month, then she would discuss my case with the PE surgery team. Then I would have one more appointment to discuss a surgery date.

I felt great about that. That meant that I could have a great Christmas with my kids. We could an awesome day together and create an amazing memory. As usual, I was wrong.

Dr. O called me later that evening to tell me that my INR (coumadin level) was too high so she adjusted my dose. That's no big deal, I've had to have that adjusted before. Then her tone got serious. She's concerned about the fluid, and on Tuesday she is going to discuss my case with the PE team and see if they could do the surgery next month instead of January.

I got hysterical. I cried. I called my Aunt Carol who is my voice of reason these days and always points out things that I don't see because I get too emotional. She calmed me down and brought up the fact that nothing is definite yet. The surgery team may not be available due to Christmas. The surgery team may want to wait the month to see if I can shed the fluid. All of these are reasonable things and could happen.

Despite every thing that has ever happened in my life, I have never been one to cry and say things are not fair. I generally just clean myself off and push forward. This, however, is not fair. I have accepted this surgery, and even though I don't like it I am going to go through with it. 

All I wanted was Christmas with my kids. I want them to, if God forbid anything happens to me, have an amazing and great memory to look back on. I don't think that is too much to ask for. So for once in my life, I'm calling it NOT FAIR. My kids have been through a lot the past few years and they deserve a fantastic day.

Now all I can do is wait for Tuesday and hope things work out in my favor.

And So, She Cried

 This may be another long and rambling post. Bear with me.

I've been sick off and on since March/April with "bronchitis/asthma". I had a nasty cough and shortness of breath that just progressively got worse and worse. I finally had enough and headed to the emergency room on November 2nd. I explained everything to the doctor, as well as my medical history. He decided to do a CT scan of my chest. The results came back that I had a blood clot in my lung.

I have Factor V Leiden (a form of thrombophilia) and I have had clots in my lungs before so I figured I knew the drill. Boy, was I wrong. They gave me two Lovenox (blood thinner) injections and transported me to the hospital by ambulance, where I was admitted. I was started on I.V. Heparin (another blood thinner) and I figured I would be in the hospital for a few days. Wrong, again.

The pulmonologist came in and explained that the blood clot in my lungs was very large. He said that I may have to undergo surgery to have it removed and that he was going to consult another doctor from Temple Hospital in Philadelphia the next day. He said surgery had two options, a minor and a major. I hoped and prayed for the minor option. After the first consultation, the doctor gave me a printout that was a detailed description of the major surgery and I cried for two hours straight.

A few days later I was transferred (again by ambulance) to Temple Hospital for evaluation. I had a million tests, saw a dozen different doctors and specialists, and was pumped full of meds. I kept praying for the minor surgery throughout it all but that wasn't to pass.

My official diagnosis is Chronic Thromboembolic Pulmonary Hypertension (CTEPH). This means that the clots I have in my lungs are causing strain on my lungs as well as my heart. If not treated, over time the increased pressures will weaken the heart muscle and the heart will weaken and eventually stop functioning normally. Unfortunately, due to size and location and the pressures in the heart, I am going to have to go with the major form of surgery, called Pulmonary Thromboendarterectomy (PE or PEA) surgery.

I'm not going to lie, I am terrified.

During surgery my body will be cooled, they will open my chest and they will put me on a heart and lung bypass machine. They will removed the clots, sew me closed and then warm me back up. I'll be in ICU for a day or two. For about six weeks I won't be able to drive or lift anything. I'm going to have a scar that will be at least a foot long.

I'm worried and I cry about so many things. Complications. Will the scar turn off men? (My special friend assures me he's fine with it.) Will my kids be ok? I'm not going to be working for a while, so I worry about bills. My job is protected but they aren't going to pay me if I'm not working. How soon will I heal? How bad will the pain be?

So many questions and a million more swirl in my head daily. This week I am looking into making arrangements for my kids and power of attorney for medical decisions which may sound ghastly but it's a necessary evil. I need to be prepared for the sake of my kids.

That's the update of my current situation. I still cry on the daily and probably will up until and after surgery. My friends (especially that special man) have been amazing, listening to me vent and just talk. I joined an online support group and it has been a wealth of information.

One day, in the future, the tears cried will be happy ones.