I was a pyoderma gangrenosum patient in 2003 and 2004. In 2003 it took 19 =
days to get diagnosed, I was transferred from one hospital to a second hosp=
ital. The first hospital had a surgeon that did not understand the disease=
and did a second abdominal surgery on me (he did the first also and it was=
a simple laporoscopy procedure to remove a burst ovarian cyst and the site=
"got infected") he ended up excising 5 pounds of flesh from my abdomen and=
left it
open to heal. It wouldn't heal and I was transferred to a teachin=
g/university hospital 75 miles away by ambulance. It took the teaching hos=
pital only 19 days to diagnose me and get me on a treatment plan. I was on=
IV antibiotics and high dose steroids and two different potent pain killer=
s. I believe the er pain killer I was on was morphine and then my immediat=
e pain med was dilaudid that I had to take before my dressing changes as th=
e hole in my stomach was very deep and had exposed nerves. My DH took fami=
ly medical leave from work and was my caregiver as it was even hard to walk=
let alone the pain being unbearable. It took me almost 6 months to fully =
heal. I was healed by just doing the steroid taper. The day before I was =
released from the hospital, they did a bone marrow biopsy to see what was g=
oing on with my immune system. They said that people only get PG with a co=
mpromised immune system.
In 2004, I was diagnosed with Acute Myelogenous Leukemia (blood cancer). A=
t that time, I had a large growing ulcer on my right leg and it was so pain=
ful that I couldn't walk. I was immediately admitted to the hospital. I w=
as started on IV antibiotics and they weren't helping. I was again transfe=
rred by ambulance to the same teaching/university hospital that I was the l=
ast time, but this time to go through treatment for acute cancer. They hea=
led the ulcer on my leg by starting me on chemotherapy for the cancer. It =
just started healing when the chemo came. It was dressed with a wet dressi=
ng as was my abdomen the first time. They caught the leg ulcer very quickl=
y and I barely even have a scar from it. The scar left over from my abdome=
n is horrible, over an inch wide and it is fused to the hip bone (pelvic bo=
ne) at the very top of it. I went through a bone marrow transplant at the =
end of 2004 that cured my cancer. I am now cancer free, but I am facing an=
abdominal surgery to repair a hernia where I had the initial PG problem. =
None of the doctors know if I still have the PG or if it may have been cure=
d by the bone marrow transplant. I am scared to go through the surgery as =
I don't want the PG back. =20
Very late in 2004, between my first round of induction chemo and the bone m=
arrow transplant, I found out that my bone marrow biopsy from 2003 actually=
showed that I had a compromised immune system and that my blood had myelod=
ysplatic syndrome. That is a precurser to leukemia and the docs never even=
told me I had it. My cancer was found because I had started a new job tha=
t was very physical and I was bruising horribly and my husband made me go f=
or a physical. It was diagnosed 2 weeks after the physical. It only took =
that long because I was afraid of getting a second bone marrow biopsy becau=
se the first one was pretty painful.
Anyway, that is my story and I would love to hear from any of you and know how you=
r disease is progressing. I am now on disability because of the cancer. =
I have several after effects from the bone marrow transplant and haven't be=
en able to return to work.
Thanks!
Trudy K Donnelly in Ohio
*I removed your email address so the spammers don't get it. Please go into control panel and edit your profile and add your email address there*
I also have created a new post for you. You attached to multiple VERY OLD posts, and am making a new one so that your posts get more attention. Also duplicate posts are against forum rules, so I deleted the duplicates in other posts. Thank you!
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