Sunday, January 22, 2006

HERE IS the second edition of "As I Live and Breathe", my speech from a 2/2000 event at UCF promoting organ and tissue donation awareness called "Get Carded."

My first two years at UCF were extraordinary and provided me with a comfortable denial of my disease. I was barely sick, I was living a normal life. I was living on my own, participating in Greek life, student government, student activities, and oritentation. My crowning achievement was was that I was honored as UCF Homecoming Queen 1997. If it could be done at UCF- I did it. I was working, going to school, and volunteering full-time on top of all the doctor's appointments and treatments. Yes, I was famous for burning hte candle at both ends but I was achieving my goals. I felt on top of the world.

The summer after my sophomore year I went home for a short break. It was then that the rug was pulled out from under me. My lung functioning had rapidly diminshed. In an eye blink, I was functioning at less than 30% of what they were supposed to be. I had lost a considerable amount of weight even though I had a feeding tube placed in my stomach. I finally began to accept that I was having trouble climbing stairs and walking to the car. I couldn't even SHOP without stopping for rest. I saw a stranger in the mirror. A pale, gaunt shadow of the physical shape I used to be. I felt my characteristic buoyancy and resilience begin to fade. I was in pain physically and emotionally from the constant coughing, sleepless nights and the unknown.

Tune in tomorrow for another edition and the events of the day. I am off to eat some Extra Crunchy Peanut Butter reminiscent of my friend Mandy.

Friday, January 20, 2006

I GUESS you could say that I have been a bit reflective today. I was putting aside my kidney notebook in my bookcase and I came across my scrapbook from my lung transplant successes. Among them was the copy from the speech I gave at "Get Carded" a UCF sponsored activity to promote organ and tissue donation awareness. I thought I would share it with you...

It's funny...I've been giving this speech in my head for weeks, but the actual delivery to YOU is completely different than anything that I've imagined. While I've told this story many times in the last ten months, never have I been so honest and candid, or explored it so deeply. I thought we could make the emotional journey together.

There is a strange string of irony that ties my story together.A sense of irony that I am here at UCF, because this is where my story began. I can not thank you enough for helping me honor the gift I've received and to share it with you.

I don't quite know how I ended up at UCF, probably not what the Admissions office would want to hear, but nonetheless true. I never questioned the road I was on but knew I was headed in the right direction. UCF...practically unheard of in Plymouth, MA, my home some 1500 miles away yet somehow it was so right. It was almost an afterthought that it was U-CF because CF to me was alawys known as Cystic Fibrosis. CF in my case was a genetic, chronic lung disease I've grappled with all my life. CF manifests itself through stichy secretions that clog airways and host virulent infections that eventually scar and destroy the lungs.

For many years CF was both friend and foe. I was torn between two worlds. On the one hand complying with stark, starched hospital realities of taking huge doses of medication, dealing with primitive "pounding" therapies, and being out of school, away from my family and friends for weeks of a time. On the other hand was the romance of rebellion. I could die young and pretty, a sad portrait of lost potential. I won't lie to you. FOr a long time I waivered between the extremes and no matter how much I prayed or bargained, the disease got worse.

From the comfortable vantage point of retrospection, now I would say that I came here (UCF) to make something of myself. I knew that if I could make a difference with JUST ONE person, that I would've made my mark on the world, but I also knew that to achievethis I would have to be responsible for my survival.


WELL, I HAVE GOOD NEWS and so not-so good news, First, the kidney is amazing my creatinine was 0.9, again amazing, there are no signs infection in or around my wound and it seems that I simply heal slowly. I can go down to once a day for the visiting nurses so that gives me more freedom. I can also go to every other week for clinic appointments- this is a big milestone.

Now the not-so news, it seems that given all my transplant um, experience, shall we say, that they, the kidney chicks pictured above, along with the group of surgeons, have suggested that I be evaluated for a pancreas transplant. The Brigham has just been approved as a pancreas transplant site. Jeez, couldn't they have given me a two for one with the kidney? Apparently not. My surgeon that did the kidney transplant would do the other transplant, but it is another surgery. It seems though, that I would be a good candidate. The CF cells that have caused such digestive distress the past year (that is the final verdict of a cause) would be erradicated and the diabetes- adios! So clearly, it would be good to banish these two bandits. Most of the complications are related to medication, which I have already been on it for nearly 7 years (that's right April 10th I celebrate the 7th anniversary of my lung transplant). I am not afraid of surgery but how much is too much and am I tempting fate by getting another transplant. I have a lot to research and even more to think about. I am starting to think that I should be doing writing and speaking about transplants and organ donation. It seems to be my calling. I'll keep you updated...

Thursday, January 19, 2006

DID YOU KNOW that Brigham and Womens Hospital conducted the first organ transplant in the world? Did you know that kidney transplants (in general) originated at the Brigham? I guess that I am in good hands. I have a clinic appointment tomorrow and I am hoping that with my digital camera I will be able to capture my caregivers so that I might post them. They have been such a huge part of the process and I look forward to seeing them, which makes appointments more tolerable.
For some reason, I am starving.

Just a minor complication, my wound is not healing, or let's keep it positive: it is healing very slowly. Very slowly.

I am drafting my response to my donor's wife, who emailed me kind, heartfelt words earlier this week. I don't want to keep her waiting too long.

My friend Jenn has made it back to Spain, despite her colon upset. I completely understand her perdicament and couldn't imagine flying all the way to Spain with such upset.

More tomorrow after my appointment...

Wednesday, January 18, 2006

SUnday night we ate at the 99 restaurant. My friend Kelli Collomb sent me this pink sweatsuit. I have yet to send her a thank you note- SHAMEFUL KIDNEY BEAN! I will be taking the time this week to catch up on my mail and all the terrific letters I have received. They have truly kept me going. Not much going on this week. I still have a visiting nurse come to my house twice a day to pack my open wound with gauze. I heal funny and the prednisone and diabetes don't help. So where they stuffed the kidney in me is still kidney is not like bursting at the seams or anything. I am always a little leary about that since in 2001 my guts came out from my last abdominal surgery. They were my favorite color. You guessed it:pink. My doctor said there was no chance that my kid would pop out- phew! more later...

These were taken Saturday night, during Kelbel's visit. We were at the BBC in Cedarville watching the Patriots LOSE!

Sunday, January 15, 2006

Hello. I guess that it works out to be every four days that I remember and actually make time to blog. Since I last wrote I have been busy adjusting to a normal life. Still haven't quite gotten to writing my thank you notes, finishing my mom's Christmas gift of a scrapbook or writing my update for Kara (it's coming, I promise).
On Friday, I had my typical kidney clinic and I got an increasingly clean bill of health. I was warned, though, not to eat a pound of salami in one sitting. I'll admit, after not being able to eat it while on dialysis because of the swelling effects on my body, now being able to process salt- I have been indulgent. I am allowed to have two salty items per week- max. If next Friday is the same, than I can switch to every other week. It was Friday the thirteenth and I was worried that something bad was going to happen. Thankfully, I was wrong. Then I went to Jenn Cross' dad's wake at Cartmell's, home of the amazing mints, of which I stole a pocketful- in typical fashion. I went with Alison and met Shelley, her sister. I saw my aunt Suzy and uncle Tommy there, as well as Alison Longden. Jenn seems relieved and looks at peace. I couldn't get over how old and mature her brothers look. I was very worried about what place her mother would have since they were divorced and he was in another relationship, but I was glad that she was there, she belonged there. Jenn and I hopefully will connect before she heads back to Espana to reclaim her life. I wish the conditions were better but, I am so happy that she is doing so well besides the circumstances.
It was great to see so many people. Most of my recovery has been solitary and I haven't felt up to reconnecting. I got a lot of compliments on how healthy I look and I was happy to report how well I was doing. It gave me a great boost in confidence and makes all the pain and effort worthwhile.
Kelli Belfatto is here this weekend (see pictures). We went to watch the Patriots game at the BBC this weekend. (It was 50 degrees Saturday and 15 degrees today by the way.) I am glad that I am actually able to do things- better than the last time Kelbel visited and I was in the ICU. During the day we went out for coffee and toured the shops at 5 and Kohl's. It's great to find stores that you don't have at home- Kelbel agreed. This morning we went to the Water Street cafe for breakfast. I actually got up both days before noon and made time for a little nappypoo in the afternoon.
With all this new energy I have signed up for two classes at Northeastern: Fundamentals of Fundraising and Managing Organizational Culture. I have been approved for financial aid and hopefully, it will cover the tuition for the rest of the program. I think I will be able to graduate with an MS in Leadership of Nonprofit Organizations by 2007. It is great that Northeastern has classes about every 6 weeks. It is a pace I enjoy. Hoping there are more guys in the class next quarter.

Wednesday, January 11, 2006

It's been a little over a month since I got my kidney and the adjustment is going well. I am doing more and more. Like today, I took my car Ava the Avalon to the MALL! Yeah- that's right the mall. You know things are looking up when I can make it to the mall on my own. My next exploit is tomorrow. I plan to drive into Boston (45miles give or take for those unfamiliar) for an appointment at the lung transplant clinic. The lungs, not to be neglected, are fabulous so I will be showing off a bit and plan to wear something with sparkles. I wasn't quite this spunky all day. I do seem to be more alive at night. Probably because I slept all day. I planned to go to lunch with Courtney, but as I normally do, had to cancel because of severe stomach distress and pain. Oh the pain. I try to ignore it although my doc says not to be a martyr. I get this from Saced Heart when I would go to the nurse in elementary school and even though I was feverish and coughing up a lung I would be told to "struggle through"- TRAUMA FLASHBACK. okay, back to the present. My stomach problems have subsided substantially since I added more enzymes, but I still have flare ups. Today was one such day. The last thing I wanted to do was leave my house even though I longed to see my very pregnant lifelong friend. Court, I'll make it up to you I promise.
I also have a poop load of thank you notes and correspondence to catch up on. I am very thankful and blessed to have so many people love me, please be patient. I'm sure you understand and there is really no reason to beat myself up over it. But if you would like to publicly chastise me- please post.
I didn't make any resolutions this new year, but I think I have finally committed myself after 6.5 years to write my memoirs. I am putting out a request for quips, stories, memories, that you have of me, especially those related to me bouncing back in some way. I think this will be the theme of my writing. It is an opportunity for you to be included for all times. Until next time...

Friday, January 06, 2006

Most of my readers will recognize the discomfort I have with my very swollen feet. The dialysis kept it off only part of the time but I had to limit my fluid intake severely. No that I have a new happy kidney, the water comes off on its own. SO to pay homage to my feet- I have photographed them for prosperity. Viola!

I wanted to post a picture of my dear friend Jenn Cross. She joined me as I began my recovery from my wound infections on New Year's with a round of...whatelse, Scrabble. SHe has been home since October from her beloved Spain and boyfriend Marcus to tend to her Dad, who is fighting, I mean fighting, a debilitating cancer. It has ravaged his body, but not his spirit and his dutiful daughter Jenn , who celebrates the value of family, was here every minute to tend to his needs. SHe has been strong with him, st every turn, so tonight I pray for my little Jenny, the girl behind me in line for First Communion so many years ago, and for her dad.
Today, Friday, I had a clinic appointment. There was some concern because my iron was low as were the measures of my red blood cells. That stinks and could indicate the need for a transfusion. SO when I went to BWH this day I brought a bag and my computer with me, just in case they decided to keep me. I guess I was mentally prepared. However, things were better tahn I expected which is always a pleasant surprise. My kidney is working great: 0.9 on my normal creatinine range of 0.5 to 1.4. I also got weighed at the clinic- I almost fell over (luckily the scale has side rails) when it read 117. I haven't been this weight since before my lungs. The swollenness has subsided and I have ankles again. The only swelling I have is what is left around the healing suture and that will become less distended with time and as the transplanted kidney normalizes to my body. I have been trying to ween myself off the pain junk, even though it still feels like someone punched me in the gut. Just like my doc promised, I think by the three month mark I will be ready to go. She has already cut my visits back. That makes me happy...if anyone would like to invent a happy kidney song- please post it in the comments section.

Monday, January 02, 2006

Happy New Year 2006! I was about to update my blog on the 29th when I ended up going to the hospital to have the stitches from my fistula removed. I stopped into the kidney transplant office because my wound looked sad, beyond my sun tattoo looking like it had a stroke in the process of the transplant, I heal very funny and I was afraid it would eviscerate and open like my last abdominal surgery. However, I had two holes that were not healing and needed to be packed with gauze rather than restitched. I heal in reverse: instead of inside out, I heal outside in, leaving a gap inside that is a welcome spot for infection. They admitted me to have me have a CT scan and needle aspiration since part of my wound was painful (infection?) and seemingly fluid filled. Even my girly parts were swollen. It seems that gravity leads the way when it comes to fluid and when you drain, it goes to the lowest spot. It hurt to sit or lay on my side and just about everything else, I couldn't get comfortable. They were able to adjust this as I was inpatient. Carrie and Anne took care of things, as my mom is in Florida. One terrible situation was that while I was having problems, so was Detroit. He was throwing up with terrible diahrrea, a flare up of his Inflamatory Bowel Disease, likely from too much people food from the holidays. Carrie took charge thankfully, good thing because Anne is allergic to little dogs. I got discharged on New Years eve and slept most of the rest of the weekend. Detroit's bill was $400 and then my medicine was refused coverage because of this new Medicare part d thing , Carrie had to cover me for that too, so I hate owing people money. I'll have to budget for this month.