On My Way to Transplant

[kathrnclark]

Hi Everyone! Nice to be here. This is my first post on this forum. I will try to keep my story as brief as possible, although my if anyone is interested, my blog (www.aplasticanemiablog.com) has all the details.

Beginning December 14th, 2010 I took a course of sulfa-based antibiotics to combat a standard urinary tract infection. I had never had a UTI before, nor had I taken a sulfa-based drug before. Within the first few days, I noticed I had itchy dry patches on the back of my neck and under my arms on my torso. It didn’t look like a rash to me, and I just thought I had dry skin. I am obviously a genius. I should have stopped taking the drug immediately, but never having had an allergic reaction to a medication before, I completed the full ten-day course. Two days later, I began my period – early. The period was unusually painful and lasted over eight days – a major shift from my normal 5.

At the same time, I noticed changes in my skin. I went sledding over Christmas with my niece one day and came back with a nasty bruise on my leg, despite not having done anything to warrant it. “I’m getting old, ” I said. “I can’t even go sledding anymore without getting hurt!” I began to feel tired and fatigued, which I attributed to holiday travel and jetlag.

After the new year, I began exercising again. I couldn’t catch my breath. Not in a typical out-of-shape way, but in an “I’m going to pass out and/or throw up because I can’t breathe and my heart is racing uncontrollably!” kind of way. I knew it was unusual, but again, I made an excuse. I just thought I needed to condition my body.

I began craving red meat like never before. Hamburgers, steaks, and beef in general seemed like the most delicious foods on earth.

Finally, I started seeing spots on my skin. “Heat rash!” I thought. I showed my boyfriend, who was concerned, but after we looked on Dr. Google and WebMD, it didn’t seem like any of the images we could find matched what I was seeing on my body.

On January 19th, 2011, I went to my internist just to be on the safe side. I was in no way concerned. After all, I was only just 30 years old, in excellent shape with no history of illness, and I felt fine. He took one look at my skin and said in a scary concerned voice, “Oh, no. No. No. N0. No. That’s not good.” He went out into the hall where I heard him grab a nurse and tell her I needed a blood test “stat”. Now, I’m no doctor, but I’ve seen a lot of them on TV. “Stat” is generally not something you want to hear your physician say about you. When he came back into the room with the results he informed me I needed to be admitted immediately to Providence Saint Joseph Medical Center in Burbank, CA. All my blood values were dangerously low – a condition called pancytopenia.

At the hospital I was put under the care of an excellent hematologist/oncologist, Dr. B. He performed a bone marrow biopsy on January 20th. The results determined that my bone marrow had essentially gone to sleep. A person of my age should have a bone marrow production rate of 70%. Mine was less than 5%.

Since then, I have been hospitalized five times, my longest stretch for six weeks in March and April in which I received ATG rabbit. I had quite painful, serious side effects from the drug therapy, but am doing very well now despite having no significant recovery from the ATG.

My BMT is scheduled for September 22nd. I'm really looking forward to it, actually!

Whew! That's it! Thanks everyone!

[Janice M.]

Hi Katherine,

WOW!!! What a whirlwind story. I am sorry to hear that you are dealing with AA at such a young age, but at least you have youth on your side when dealing with a BMT. Also, glad that they were able to find a transplant match for you.

This site has a lot of people with a great deal of knowledge and experience so you could read the story of others who have gone through transplants.

Please let us know how you are doing. Wishing you all the best!

Janice

[Ruth Cuadra]

Hi, Katherine.

Your story sounds so familiar. We are so good at making excuses, aren't we? I was older than you (41) at diagnosis but I had been ignoring or not realizing the meaning of symptoms that should have sent me straight to the doctor months before I finally went for something complete unrelated. Example: I thought there was something wrong with my washing machine because the clothes were so heavy (as in too wet) when I moved them to the dryer. Turned out my hemoglobin was less than 5.0 so I had virtually no strength!

I'm glad to hear that your doctor was able to identify the problem so quickly and that you're on your way to a cure.

Regards,
Ruth

[freedom99]

Hello Kathryn
God Speed and keep the faith.