What Just Happened!?!

Everyone wants to know what the heck happened last week (4th-10th of September). So here you go!

I had been in a sickle cell crisis since last Monday and on Wednesday the 7th  I finally went to the ER for what I assumed would be for a few hours of oxygen, fluids and pain medication. I had been in the ER about 4 weeks ago and since then the abdominal ultrasound showed that my spleen had grown 6cms which is the cause of my ridiculous pain.

Long story short I was transferred to a Denver hospital and was told I'd need to have my spleen removed. They had the top people in sickle cell and high risk pregnancies at the university hospital for the state of Colorado and said now was the time to have it removed since I am in my 2nd trimester and there is a possibility my spleen will destroy valuable blood that the baby and I need. 

How scary.

I wasn't allowed food or drink (horrible that's all I could think about is food as baby kicked around in there) and was constantly being poked and prodded and had pain meds on demand via a clicky button. I had a horrible experience once I was moved off of the OB floor and was treated pretty bad as I landed on a transplant floor as opposed to the OB or sickle cell floor. I cried and cried because of the treatment I was receiving which caused me more pain and high blood pressure. I have never been hospitalized before as normally I either to go the ER or to the cancer center for fluids and pain medication and go home.

After meeting about five doctors and having them speak with the three doctors I have here in town they decided to pass on the surgery (Thank God!) for now but recommend it if I am still having problems and pain after baby is born. They said removing my spleen will increase my comfort but at this point it isn't causing drops in my blood counts. When it does that I won't have a choice but to use a drug primarily used with individuals with Sickle Cell Anemia (SS) while pregnant, transfusions, and possibly emergency surgery. 

I was finally released from the hospital after demanding to be released and demanding information form my doctors. I had to have a patient advocate on my side to get that information and to be discharged. I have been resting and trying to get over everything I went through and keep my stress levels down. 

I will constantly have to deal with this pain as baby and the spleen get bigger. The altitude here in Colorado is so high that I am being prompted to relocate to a lower altitude that may increase the amount of oxygen I am receiving and make me feel a bit better. They believe I will continue to have problems and that my spleen will continue to be problematic and will have to monitor me more closely than I already am. For the record I am swamped in appointments with my doctors and each usually sees me every 4 weeks or more frequent if I am having problems.

I'm sure everything will go away as soon as baby is born as I have not had any severe problems or hospitalizations living at this altitude since age 2 until I got pregnant. We are hoping baby will get the C trait from me rather than the S as his life will be a little bit easier (no he won't have sickle cell since my husband doesn't have it).

My husband and I both knew that I'd have difficulties during the pregnancy considering I have Sickle C but I never would have imagined what I have been through and am dreading what's in store. My perinatologist told me today that people with SC don't usually have problems but when they do it's a lot worse than having an  SS crisis (I am guessing that is because of the added pain from my spleen and liver).

As for baby, he is oblivious to the pain his presence is causing me. He is perfectly fine. 10 fingers and toes, 4 chambers in his heart, and is kicking up a storm. Oh such innocence :-)