A rough day

[Mike]

A bit of a rough day for us.

Tracey needed a blood transfusion this afternoon as her hemoglobin count had dropped from 90 to 82. Her creatinine level is also continuing to go higher and now stands at 300.

They were unable to use her arm vein for the catheter for her plasmspharesis treatment tomorrow (vein too small) and instead it took 90 minutes to cut into her neck jugular to insert the picc line and stitch her up again. To add to all this they had to remove tissue from her lungs and investigate the clots just to make sure there was not an infection before the Chemo begins. She has to keep the neck line in place for two weeks and can't move her head from side to side.

She was crying and in so much pain, Sue and I felt terrible for her.

Tomorrow Sue is driving down for her first treatment at 9 AM. Then at 1:30 PM she has her first Chemo intravenous infusion.

We are hoping that tomorrow is better.

Thanks for all your thoughts and kind words.


Mike and Sue (for Tracey)

[Sangye]

Oh, this is so sad. It's a lot all at once. It's hard for something like that to happen at the initial diagnosis, and maybe even harder 5 years into it. Very disheartening. I bet Tracey and all of you are all wrung out.

I hope the IV chemo works quickly to get things under control. Tell her "Hang in there" from one Weggie to another.

[Jack]

Sorry to hear that she is having such a bad time of it, especially since I said it would be a breeze . Just goes to show how different we all are.

Hope things start to settle down for her in the near future, but I'm afraid that life with Wegener's can be a bit of a roller coaster. Sometimes, it is just a case of hanging on for long enough to allow things to improve.

[jola57]

I am so sorry for all the pain on top of the pain. As if it was not enough that she is going on chemo. My veins shut down too, sometimes it takes three tries befor they hit one. Please tell Tracey that we are all rooting for her to get better immediately.
I am sending warm hugs to you, Sue and Tracey.('')

[Sangye]

My veins are awful. The worst time I spent getting an IV was 9.5 hours of non-stop digging by an endless stream of nurses in the ER. (That's not a typo) They would get an IV in, but it would infiltrate (slip out of the vein) immediately. Infiltrates are so painful! I was a wreck. I'm a pretty tough cookie, but that was my limit.

My hematologist said pred makes the veins fragile. Vitamin C helps to rebuild the veins, but keep the dose low so it doesn't stimulate the immune system.

[Doug]

I had to have the pic lines in my jugular vein, too, for the same reason. The motion of my head caused nausea, but I did OK after they started taping them down between dialysis and plasmapheresis uses. I also had a Greshong port in my chest that proved to be a blessing in the 14 months it was in.

[Mike]

Gosh that sounds terrible,

Tracey's plasmspharesis was over a short time ago. It seemed to go well. It took about 90 minutes and she was feeling chirpy. My wife Sue went in with her and will be with her after lunch for round two of the IV chemo.

I am driving down with her husband and Luca, her little boy this afternoon.

I will have a quick visit and Sue and I will bring Luca back home with us for the rest of the weekend.

Many thanks to all.

Mike

[Sangye]

Chirpy is good. I'm glad you're bringing her son to see her. Keep us posted!

[Doug]

The dialysis and plasmapheresis were long but pleasant experiences, and the effect was to feel pretty good after the second plasmapheresis treatment (which followed the seventh dialysis treatment), good enough I was released two days later (I think was). The doctor who removed the stents put pressure on the wound for 15 minutes, so we had a nice talk about what his future plans were, what I did for a living, and other chit chat!

[Doug]

As for the pain- this is a second thought- pain management is a big part of hospital care. If Tracey's having pain bad enough she's crying, she's not getting all the care she should (in my mind). I was in a near-terminal state when I was hospitalized in December 2003. Between December 23 and January 31, 2004, I was hospitalized five weeks in three different hospitals. In that time I suffered so little pain, I came to think WG was a snap to deal with. I realize now the hospitals all worked hard to keep me as pain-free and possible. The worst pain was discomfort mostly, like the time they tried to establish pic lines on my collapsed veins, digging around 30 (!) minutes before giving up. That was the day the doctors decided to approach me about have a Greshong line established in my chest: "Put it in, Doctor!" It didn't take me any persuation! The Greshong line allowed the doctors to give me IVs and transfusions, but they also collected blood samples from me that way. I had it in from December 24th, 2003 until middle February 2005. Something like this might help your daughter, too. They are high maintenance because of the chance of infection (mine went into my aortic arch, so that's not a place you want infection!). It was inconvenient to go in once a week to have it purged with saline solution and Heparin (a blood thinner that's had some bad press lately....!)

Heparin-induced thrombocytopenia - Wikipedia, the free encyclopedia

http://www.google.com/url?q=http://w...PMNqDDpYhcsu6Q

Above- information on the Greshong central venous catheter (what I had).