Again I'm up and I can't sleep so what do I do? I blog! I can't believe how many people have viewed my page or forwarded it on to loved ones and friends. I love the support! I want to know who you are! Please hit the follow button or comment.
So where were we? Ah yes my veins. After almost a year of blood draws and monthly infusions my hands were shot. They would be so painful for days after my treatment. The nurses would do like a compression wrap on my hands after and I don't know why but it felt so good.
My doctor sympathized and felt so bad about what I had to go through each treatment. Them having to stick me with the needle so many time. Well and I was starting to feel bad for me too. He suggested a port.
Holy shit! A port? I don't have cancer. Those are for people that were really sick or dying! It was our only option because access was getting harder and harder. For those of you that don't know about ports they are about the size of a quarter. Placed just under your skin. The top is rubber to hold the needle in place so you have to use a bit of force to get that sucker in. The needle is wider and has a bit of a hook on the end.
Because my infusions were now done out of CT my doctor wanted the hospital associated with the cancer center I go to to handle the port surgery. That way if there was a complication I would bot have to drive back and forth to Boston.
Mid October 2010 I go under the knife. I was told it was not going to be painful. It was. I was told I would feel better in a few days, I didn't. The port was placed a few inches below my right clavicle. Instead of stitches they used dermabond to close the incision. I didn't know it at the time but I was one of the last patients to have dermabond used on them at that hospital because of the complications associated with. About a week or so went by and the incision wasn't getting any smaller. It was actually getting wider. My surgeon decided to stitch me closed. We didn't know it at the time but there was an infection brewing inside. A few weeks go by and I go to my treatment ready to use my port. The incision was still open a bit but most of it had healed. The part that was open had some fluid coming out every once and a while. I thought all this was normal. I had never gone through this before. The infusion nurses took one look at it and said "oh no. No treatment today" next thing I know is they are on the phone 3 way with my Boston doctor, nurses, and the surgeons down here. I am to go in fist thing Monday morning for emergency surgery to remove the port. I have a fever, the infection could travel into my bloodstream. WTF?!?! Seriously? I have never been so scared as I was in that moment.
Did I mention this was the Monday before Thanksgiving and I was supposed to host it for the first time?
The surgery went well. They left the site open and packed it. I looked like a bullet hole and hurt so bad. Visiting nurses came for 3 weeks, everyday to change my dressing and repack the wound. Rafael was my nurse :-) He was very very nice on the eyes.
So I had surgery on Monday, Thanksgiving on Thurday (no one came over. My husband got Boston Market and the three of us ate a nice quiet meal, it was heaven. I love love love my huge family but just the three of us was so nice), and on Black Friday when I normally would be up early shopping I was instead under the knife again. A new port was installed on the other side under my left clavicle. This time it was stitched up. Healed beautifully. That incision healed before my "bullet hole" did.
A few months go by and I have a few treatments using my new port. It works perfectly. The only problem...it floats. Meaning scar tissue did not form around it to anchor it down to my muscle. Every time the nurses tried to access the port would flip. I was getting stuck 4 and 5 times again! Not to mention i would have almost every nurse there try to get at it and most would fail. They were used to ports, especially difficult ones! Uuuugggghhh!!
By March 2011 I had had it! I was frustrated, depressed, in pain (the muscles under my port were bruised from all the pushing to get the needle in), and fed up with my body. Not to mention the Orencia was not working as much as my doctor had hoped so I was now to go every 3 weeks instead of 4.
I went back to the surgeon because the port also was actually starting to settle but almost in my armpit. Guess what the next week I was back in surgery to anchor the port. My fourth surgery in 6 months. They installed a new port, stitched it to my muscle, and closed me up again.
I have had a few treatments since then and I only got stuck 2 or 3 times to get access. Really? My body did not like my port. I go back to the surgeon and he says at this point another surgery is to risky. Also the only other place to go would be in my neck because of the new port style. So here I am. Still young at 35 (tomorrow I'll be 36! Yay!) and I have a big scar above each breast. I can't wear all those cute little shirts that are in style. Forget tank tops and bathing suits. I'll get used to the scars but right now I'll keep them hidden.
I do have some good news. I did have a treatment yesterday. There was a new nurse they just hired there. She got access on the first try! This was the first time I did not cry in frustration. It was an overall pleasant visit. I guess I just have to get her every time.
Well off to get ready for my doctors appointment in Boston. Have a great day!
Thursday, June 9, 2011
My yucky port
I have been married to my husband 15 years and we have a beautiful 12 year old daughter. I was diagnosed with RA 8 years ago. I am a Nationally Licensed Massage Therapist and a Nationally Certified Pharmacy Technician. My mission is to raise awareness and understanding of the general public and those suffering from RA by telling my story and sharing what I've learned in school. The information on this site should not be used in place of, but rather to compliment directives from your healthcare professional. ~last modified 7/26/16