Donor Info

Just so everyone knows. Donors have to take shots of neupogen which causes their bodies to produce extra bone marrow. It causes bone pain and can get pretty painful. Then they hook them up to a machine which draws blood from a catheter in their neck and separates the stem cells and puts te blood back in. They pump them with calcium, etc during this. Doing so can cause then to experience pain and a tingly feeling. Thought everyone would like to know a little about the donor experience. I'm gonna have my sister write on here and post about her experience.

Oral Surgery

Wisdom teeth removed today. Just got out of surgery. They didn sedate me Bc I had to do it alone and bc they needed to do it quick and not with a surgeon. But they ended up having to get a surgeon bc I wasn't numbing completely. I was laying there in tears and almost screaming. I had some bone and fibrous tissue covering the tooth so they had to cut it off too. That was terrible. I'm at the pharmacy getting Narco for the pain. Praying for a pain free and fast recovery.

Insomnia

I've been battling insomnia too for a year and I haven't slept in over 30hrs and I'm exhausted to the point of breaking down in hysterics but I can't sleep. Help. Ugh. I take ambien but I'm having to babysit my nephews, all 3, today with my grandmother and even though I'm exhausted and screaming in pain and throwing up bad, in havin to stay up with the older 2 while my grandmother is napping with the baby. Sooo tired!!

Home finally

Ok so I just got home from the hospital. My blood counts are very low and I haven't been eating. I gotta be careful or it's back to tpn for me. I won't post for another week when we go back to Chicago to harvest my sisters stem cells. I need time to rest.

Still in the hospital

My blood counts dropped so they kept me. They did IV iron therapy yesterday and I should know soon what will happen next

Hospital stay day 2

They couldn't find where my stomach is bleeding so I'm here one more night then they'll check my labs on the morning and go from there. I'll probably get to go on home

Great news: my sis is autoimmune disorder free so it's all a go!!

Bump in the road

Oh forgot to mention I've been vomiting blood for over a month and now I'm having black coffe ground stools and fevers etc. so I was admitted at Northwestern in Chicago last night. Had an endoscopy this morning...waiting for results

I need prayers

So I had the MRI and it turns out me in tight spaces equals panic attack. Bad news. I met with Dr Burt's nurse yesterday and she said there was some kind of mistake and even though my insurance gave the hospital an approval code, it wasn't actually approved. Then not even a minute later she gets a call saying Tricare went ahead and approved it and it's a go. Then I go to my appointment today with Dr burt... They lied again and they decided not to approve it even though they sent the nurse an approval code and an approval email. So as of now, the transplant is canceled. I'm at a loss. I'm a wreck. I need this so bad and now I don't know what I'll do. Please pray!

After dentist appointment

So I do have infected wisdom teeth. It still won't affect my transplant though. They are putting me on antibiotics for a week and cutting them out next week. Frustrating but better than it messing up my transplant! About to meet with dr burts nurse and then it's off to the MRI. I may not post again until tomorrow since this will probably have me pretty sick!

At my dentist appointment

Well I have 8 sudden cavities after never having a single one in my life. And inflamed gums and I have to have my wisdom teeth removed ASAP. Good news is it won't affect my transplant whatsoever! But I may have to stay in Chicago or come back next week. Very frustrating. The dentist is talking to the oral surgeon now about scheduling. Cross your fingers!!

Pre transplant testing

Today was the first day of my pre transplant testing. Today I had a pulmonary function test, EKG, cheat X-ray, labs, echocardiogram, and a GI appointment. I told them about my constant dizziness. They're saying it's anxiety and my meds.

I have been throwing up blood for 2 months and have been to the ER 4 times and they do labs and say I'm fine and send me home even though I kept telling them I knew I was losing a lot of blood. Turns out they did the wrong labs and instead of them saying my hemoglobin is 11... It's 8! Idiots! My sis is also anemic so they have her on iron too.

My wisdom teeth are cutting bad and if they're infected they'll cancel the transplant until after I have them cut out. Dr Barrett said it didn't look infected and they may just cut my gums to let the wisdom teeth come in. He set me up with an appointment in the dental center tomorrow to find out.

My sister, since she is my donor and has IBS, is also getting a full work up. They wanna be sure she doesn't have Crohns too. She had labs, an EKG, a chest X-ray and a vein check and GI appointment today. Tomorrow she will have a ct scan and Friday a colonoscopy.

Tomorrow I have the dentist appointment, meeting with Dr Burt's nurse and an MRI. So hope the barium doesn't make me as sick as it did last time.

Also my heart rate has been sky high so I have to stop getting stressed out!!

I lost 5 lbs over the last 2 days..hoping to continue to lose!!

I have an active thread going on crohnsforum.com under jmcbrid so go check it out!!

Also Dr Barrett said I'm on the strongest pain meds available without putting me on a pain patch like what they give cancer patients and it has too many side effects. Guess all that's left is to suffer ugh!