Monday, July 31, 2006

Picture of Bad Sinuses Picture of what sinsuses should be...

Well, the past week has been draining, literally. The doctor went up my nose with a rubber hose and cut out all the polyps. A nasal polyp arises from chronic inflammation and lesions. They occur in the frequency from 6 to 48% of patients with Cystic Fibrosis and chronic sinusitis. They occur in the normal population 1 in 200 people. The polyps are like little fleshy grapes that block the airways- they are not usually cancerous. Basically, even though the CF is gone from my lungs, in which the cells were irregular and led to infection, these cells are still present in my sinuses, since you can't have a sinus transplant, yet, this is really the only place that CF will persist, given the pancreas transplant idea.

So now that the polyps are gone, all the infection that was festering behind, less what was sucked out, has been coming out on its own. The doctor described the infection as resembling peanut butter-pesto sauce. Yum! So I have been dealing with the pain and pressure of a sinus infection or really bad cold. I have had postnasal drip, which has kept me awake. Kevin too.

Carrie had her surgery last Thursday. I spoke with her twice and she is toleratig the pain. I wonder how her recovery will be effected because they could not perform the surgery laparoscopically and had to do it open. From my understanding of the procedure, that leaves you with a huge anchor-like scar from sternum to pelvis and then across. Abdominal surgery is truly the worst because you feel like you are going to explode open everytime you cough, or sneeze, or poop, for that matter.

I thought that maybe working today it would be busy since most people will be paying their bills in the next few days, but just some guy getting wardrobe boxes. I think I have more stamina to work more than one day a week and I have been looking at the classifieds to see about teaching at some local colleges. I have my resume updated and I'm thinking about putting some feelers out today with little else to do. I could clean, but not right now, my soaps will be soon!

Okay, if I don't get to posting again real soon- Happy Birthday to Rebecca (August 1), Bri (8/6/86), Tiggy 8/3- I think, Chris 8/11 Chris and Tiggy's Anniversary 8/6...

see you next time!

Tuesday, July 25, 2006

I am currently at the Brigham awaiting someone to take me downstairs to preop. What is great is that there's this room- the Family Liaison room equipped with computer and TVs and coffee- not that I can drink any- I am fasting for surgery. I guess my mom and Mandy are very familiar with this place, but this is actually part of the clink I don't know- believe it or not.
I had my jewelry party last night. A lot of people came (thanks) and I got $350 worth of free stuff. Of course, I got some other stuff too. Shelley Coville Beatty came, it seems that everytime I see her someone has died. She booked a party with the new catalog so she'll get a bonus too. My mom is booking in October. You'll find me at home, all blinged out with no where to go. Carrie stopped by before the party started and visited. Her surgery was rescheduled for Thursday so I'll wish her good luck for that. I have to book my airline flights for my Florida excursions and make my plans for Thanksgiving and the December cruise! I can't believe I am going on vacation. I am working some extra days at ministorage to try to save up, not a task I am so good.
Well, off to do some roto-rootering to the noggin. More later....

Friday, July 21, 2006

I went for preoperative testing for my sinus surgery, which is scheduled for July 25th. I was just thankful that it wasn't conflicting with my Lia Sophia Jewelry party on the 24th, Monday. I had sent out invitations and have been cleaning feverishly. Brianna O'Toole is the consultant and this is one of her first parties, plus I want the hostess benefits. Sparkly stuff- woohoo!
Anyway, while I was there for my testing, I figured that I would kill several birds with one stone, or one drive to the city since the traffic has been hellish with the tunnels closed due the cement ceiling killing that poor lady. Carrie was having her surgery that day (see: for her take on things) and I need an ultrasound of my kidney since I have a poochy pouch in my left lower quadrant. Well, my scan revealed not a fluid pouch as I had hoped, but a HERNIA!!! Apparently, it begins with the musculature next to my kidney transplant incision. Not only that, but the muscle that should be appeared to pretty degraded, which I read as irreparable, yet not life threatening. I just will girdle myself up for important occasions requiring a poochless figure. As you can imagine, the physical scars tell the story of my medical past and one might think that I'd be used to it by now but I'm still self-conscious, admittedly. I have only spoken with the radiologist so we'll see what the kidney doctor has to say.
As I was leaving I ran into Carrie's family, going to see her in post-op. Her mother was talking herself saying "just be positive, just be positive," which is a good thing for her. I know that sometimes she can come across as critical and overly sensitive, especially in this situation related to Carrie's surgery. However, when I approached, her very rational Aunt explained that they were off to see Carrie, she went in for surgery however, it was not completed due to a complication and that Carrie still had no idea. The medical team had not revealed the issue to her. When we arrived Carrie was drugged yet was smiling, and I could see that she had no clue. Her mother approached her, grabbed the issue box and Carrie could tell there was something "not right" and even in her drugged state, she was in no space for drama. her mother explained that they didn't do the surgery, yet Carrie was in pain, because they had tried and made incision and had anesthesized her, so she had a sore throat post-intubation. Yet, it was even more painful for her to realize that she was so close and yet still so far away. The doctor had not seen her since and her family was doing the best to convey their understanding to her of the medical-ese. Carrie contained her emotions, which were probably blunted due to the fentanol- I say good. She would have a lot to process. I have been in similar situations and I have been thankful for Versed and Fentanol to ease the anxiety and wash the numbness through you, enabling you to be ready for anything. When I had my lung transplant, they told me that I could wake up and may not have had the procedure. The Brigham will not proceed if the risks are high or the conditions are not perfectly aligned with their end goal. That's what has kept me so confident in their services. I left Carrie and they were about to release her from day surgery. I have not spoken to her because I wanted her to have a couple days, plus I haven't the slightest idea where my cell phone is. My mom hates that, but that is an entirely different story.
I had a few moments before my preop so I ambled down Au Bon Pain to get a bite of lunch. AS I am getting my Splenda for my iced tea a guy somes up from behind and says hello. He then inquires how I have been feeling- "Ah good.," I reply. " Do you remember me?"he asks. I hate that type of query moree than anything first of all. I look at him hoping for some sort of hint. He has on scrubs and a OR cap. "Anesthesia?" I ask, but as soon as I said that I thought he resembled Doug's former paramedic partner. I was trying to put that whole era out fo my mind. After all, I don't look a thing like I did then, in my humble opinion. Anyway, it was him. To which I fumble, I thought you killed someone and went crazy- that's the story Doug told me at least. But he said that it wasn't the way Doug had said it- big surprise and that he was trying to forget that era as well. Um...OK. "Well, see you around," I said. If it wasn't as awkward I could have said and asked him a lot more but I didn't feel the need.

Saturday, July 08, 2006

Well, it looks like the pancreas transplant is a go. I have been described as "an ideal candidate" and heck, what's one more person's DNA in my body. I do want to make sure that I don't need like a liver or something else ridiculous in a year before I sign the papers. Because I could have had a pancreas when I got the kidney, you know. Let's make sure we look at the big picture. I have been a bit absent from blogging, emailing and phone chat has been on the relapse, absent as well. Most of my days have consisted of watching Heather, napping, eating garbage and the solace of planting flowers.
I feel invisible with no school and this new mother role. My identity has shifted so greatly and dramatically in the past couple of months. I'm a little blue, really. I hate Sundays. That's when Heather's real mother is supposed to call, and she ususally doesn't, or when she does, it's for like 3 minutes and this poor two year old has no idea who is on the other end of the phone line. Kevin gets worked up looking at the clock tick by and finally he realizes she doesn't call. He says he isn't but I can tell, or maybe it's just my transference to him. I just look at this little girl and wonder how some mother's can be baby machines and then just drop these kids, without even a clue about what she looks like, whether she is healthy, what her favorite foodis, or how she likes to play. My stomach ends up in knots.
I feel like a loser because I get the impression that sometimes Kevin and his family don't think I can handle caring for Heather or that I'm not doing a good job. I try to explain that this is what chronically ill looks like- yes, most of the days I am a little sick, which may mean that I need to take a nap- not that I'm lazy and although they say they understand, it's probably just me feeling like a loser. I fid myself being moody, which I am thinking is related to the diabetes and the fluctuations with my blood sugar plus the chronic prednisone. I'm really not a bitch, am I?
I talked to Kelli Collomb today finally. I'm trying to catch up on my calls - next up Courtney and Rebecca- new cell phone number? Are you away?
I've been shopping and then returning for more practical things- ahh- retail therapy. Carrie's surgery is scheduled for July 18th. I talked to her to get the date and wish her luck. She was going to come and help my mother with her yard sale but was MIA- she must not need anything this week, as someone anonymous pointed out to me- hmmm really- is it that way really?
Below I posted details about what pancreas transplantation should be like. Until later!

How a Pancreas Transplant is Performed
The transplant recipient's own organs are left in place and the new organs are placed in the lower abdomen. Preferably, the pancreas goes to the right of the bladder and the kidney (when needed) to the left.
The pancreas can be procured in one of two ways: it can be procured from a deceased organ donor or half of a pancreas can be procured from a living organ donor. In the case of a deceased organ donor, the duodenum (a part of the small intestine) is also transplanted because the head of the pancreas is intimately attached to it. In the case of a living organ donor, the tail of the pancreas is the part that is used.
Once procured, the donated pancreas is prepared by the surgeons to be put into the transplant recipient. Both extremes of a deceased donor duodenum are closed and a new opening is made. The donated pancreas is then attached to three places in the transplant recipient:
1. The portal vein coming from the donated pancreas is sewn to the recipient's iliac vein.
2. The pancreas arteries are sewn to a graft of donor's iliac artery, which is then sewn to the recipient's iliac artery.
3. The duodenum's new opening is sewn into the recipient's bladder that will eventually receive the exocrine pancreas secretions (enzymes).
Alternatively, the donor duodenum can be sewn to the recipient's intestine. The first two attachments establish blood flow to the pancreas, allowing insulin release. The third attachment allows the exocrine enzyme (amylase) to be excreted into the urine. Low amylase excretion is a good marker of a pancreas graft rejection episode needing treatment, particularly in the absence of a same donor kidney graft (in which case an increase in blood creatinine is a good parameter). The drainage into the bladder may lead to some post-transplant complications, in which case the recipient is reoperated and the same pancreas graft is attached to the intestine.