Sunday, April 6, 2008

What A Way to start the Year

Life has a funny way of telling you, you need to check yourself. My epiphany came in the form of a rare blood disorder called ITP. With this disorder the blood platelets which are responsible for your immune system, are being destroyed by the body; more specifically the spleen.
In hindsight, I guess I had been getting pretty run down since the summer, but I just thought I was tired and kept pushing myself, you know how that goes. Anyway, by Christmastime I was really going down. I was breathless as I walked up inclines and I found catching my breath getting difficult.
Initially, I had made an appointment with my doctor for my annual physical, but I wound up seeing his associated for what I thought was an upper repertory ailment. What lead me to this conclusion was that on New Year’s Eve afternoon, Dan and I ventured down to Union Square and the glory of Whole Foods. After wading through hoards holiday shoppers we final made it to the check out counter. Once outside I suddenly found it very difficult to catch my breath. I thought I was having anxiety attack, I knew one darn thing I wasn’t going to be in a hospital in Manhattan on New Year’s Eve!
Luckily after leaving my coat wide open and talking hard to myself, I was able to finally breathe. However, I know I frightened Dan and I was a little on the shaky side myself. I’ll tell the doctor when I see him next week.
Back to school after the holiday and I was still tired and I had a nose bleed that took forever to stop. Miss the next day of school, not worry I’m going to the doctor on Monday; hold on. Monday arrives and I can’t move without having to stop, sit and catch my breath. Called in said I was running late and finally had to call back to say I wouldn’t be in. Told the principal I had an appointment, but that what was happening to me was scaring me to death.
Given the symptoms I told Dr. Joseph and what he saw, I got a ton of medication for an upper repertory infection. I was so wiped out Dan had to help home from the pharmacy across the street. I stayed home for the rest of the week. As the week progressed I became concerned because I didn’t feel that I was getting any better. I was now having difficulty walking across the living room without having to stop and sit down to catch my breath. Now, I was being to think that this had to be all in my head and I was loosing my mind. By the time Saturday rolled around I was ready to scream, what is wrong with me. Things began to come to a head when Dan had to tell me that I could breathe and that there was no need to panic. The look on my face must have been awful, because I kept saying the phrase over and over again as he guided me to the bathroom.
Later that night while asleep I was awakened by a metallic taste in my mouth and realized that my nose was bleeding; this time it would not stop. I was torn between not being able to breathe if I got out of bed or drowning in my own blood. I needed help and Dan was asleep. Once I woke up Dan it was flying ice packs, one behind my neck and one on my forehead. I went back to bed with my head encased in ice packs.
Sunday arrived and so did a new reality, I wasn’t getting any better. Dan suggested we call Agho and I agreeded. When we made contact Dr. Agho told me he wanted me to go to Einstein Emergency. I told him I was on my way. Dan called his brother Adam and he was here in a flash. As we’re getting ready to leave for the hospital I had the crazy thought of how was I going to make in down stairs, maybe we should have called an ambulance, nah, I’ll make it. Good heavens what an ordeal! I remember clinging to Adam because I thought I was going to pass out. I remember one of the guys telling me to open my eyes, geesh I was fading and couldn’t catch myself. I saw my neighbor Ms. Rodriguez and I must have given her a real scare. I heard the guys tell her that there was cab waiting, she ran out and had the cab pull up into the driveway. Once inside the cab and sitting I was back to normal, at least normal from my standpoint.
Upon arriving at the ER things started to take on a whirlwind pace. I sat for all of six or less minutes and then everything began whirling. Blood pressure down, pulse down, but steady, oxygen levels down. Wheeled to a small triage room where I met Stephanie, my nurse. Clothes off, gown on, into bed, children faces somber dressed in black jackets, lights way too bright and vampires coming to take blood. Why dose it look almost clear? More doctors than I could count came behind the curtain to take a look. I wasn’t critical enough for the ICU, that’s good. However, I needed oxygen and then came the transfusions and saline drips. Dan and Adam said I looked like a car in a Jiffy Lub. I was told that I was bleeding internally and they needed to see where the blood was coming from and that I was going to get this tube shoved down my nose and that I was to swallow to help get it down. I understood what had to be done, but my mind was screaming that all this was crazy! Don’t let anyone tell you that this crap doesn’t hurt, because it does and all the freeze spray in the world won’t help. At one point I know that I was crying because the tube in my throat hurt, but then I looked down and saw that the guys were in tears too and that I had rosaries wrapped around both hands; then things got real serious.
Thank goodness the tube did not have to stay in long. They realized that the bleeding had come from my nose as a post drip. Out foul tube! Next came the EKG and a host of other stuff. After awhile it all became a blur, I guess some of the stuff they were pumping into me made me a little woozy. In total it was a twelve hour ordeal, then up to 9 South and room 948.
After getting set up in my room, I told the guys that I bet the first voice I was going to hear in the morning would be that of Dr. Agho.
I spent the night hooked up with IVs running and my blood pressure being monitored all night. Matilda and Little Matilda beeped all night long. As I dozed off and on nurses kept checking on me and at one point someone asked how many transfusions had I had and I told them I stopped counting after three.
I was right about Dr. Agho; he arrived at about 4:30 a.m. It is very interesting having a conversation with your doctor in the dark; it’s sort of like going to confession. He told me that I was a very strong woman because I was teetering on the edge. I told him I guess it must be in my genes. He also stated that I was going to be in the hospital for some time and that there were lots of test that needed to be done to determine what was causing the platelet count to be so low.
Two days later I was switched to a private room across the hall. I felt very overwhelmed by this whole ordeal and later that evening went on a crying jag, which was a little out of character for me. The next day when I was asked by Dr. Little about how I was feeling and I explained my out burst; she explained that I was being affected by the medication. I had become Steroid Susie.
After another week and a half it was finally confirmed that I was suffering from ITP, immune thrombocytopenic purpura, a blood platelet disorder. With all the other possible diseases that had been toss about, I was greatly relived that it was ITP, which is treatable.
During the following weeks in the hospital my platelet count kept rising and falling, it was driving all of us crazy. At one point I was given Retuxian, a chemo drug. This was a five hour drip and required that I be monitored by an oncology nurse. Thank goodness I didn’t have a reaction to the medication and things went off without a hitch.
From the outset of my hospital stay, the doctors stated that they wanted to do a bone marrow study. Of all the test that I had to gone through, this was the one that I feared the most. The thought of a needle going into my back bone just scared me to death. Dr. Aporo did the procedure and explained everything along the way. At one point as he was checking the test tubes containing the specimens, I told the doctor to make sure he had my name on the tubes because I was not going through this test again. He assured me that everything was in order.
Finally, after three and half weeks Dr. Agho gave me clearance to go home. Hurray!!! During my stay at Einstein I receive the best care possible. I just had one request, that being that I could erase my name off of the Patient Board facing the Nurses’ station.


susansaw said...

What an ordeal. How are you now? I hope you are doing well and back to creating again. I love your work.

sus from spokane

Sandi said...

I'm doing much better now. I'm back to work, but I still have to take it easy and there are lots of follow ups with the doctor.

creativedawn said...

Sandi.... I am in tears reading your ordeal... and I am very happy that you are on the mend. Take care and go slow....

Ife said...

Your blog took my breath away. God Bless you sister.
Will you have a full recovery or will there always be some residual, ongoing weakness?
I love your work. Have you been up to any quilting?
God be with you--today and ALWAYS!
Ife in Raleigh

Sandi said...

As I stated I'm doing better. I've been back to work for several weeks now and hopefully I'll make a full week this week. I'm moving a bit slower and I want to catch up on everything. While I was in the hospital I did work on my applique butterflies and I sketched out ideas for quilts that were inspired by my illness. At present I've been working on some dolls, they are a bit easier to manage right now.

creativedawn said...

Hi Sandi,
Good to see you up and about! How is the getting back to work and recoverying going....hope you are doing well... The middle quilt is a Jewel Box quilt from Eleanor Burnes "Quilt in a Day" lady! Glad you liked it....thanks

Belinda Manning said...

OMG Sandi... I have been a little out of the loop here--not really keeping up with blogs or email and I am just totally knocked off my feet reading this. My heart goes out to you and your poor Dan (who must have been terrified). I am so glad that you are doing better, I will keep you in my heart and prayers.
Be gentle with yourself, and allow for the healing. Much love...

Carolyn said...

Oh Sandi ... my heart goes out to you ... what an experience you have had ... you were so lucky to have Dan by your side ... I am so relieved to know you are doing much better now ... take care of yourself & continue to keep well & create ...