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Sunday, August 24, 2008

Things are Improving

I'm finally off the oxygen! I feel OK, still not 100%, but I think I just need to let the IVs work now. Obviously they're doing something if my saturations are coming back up!

My blood sugars are a little off lately. Sounds like they're going to be changing my insulin around. Hopefully this will allow me to gain some weight finally! Keep your fingers crossed!!

Wednesday, August 20, 2008

Bad day

I've been having bad days lately. I have just overall been more congested and have watched my oxygen saturations fall. A normal person's sats hang around 97 or above, mine without oxygen is 80-85. Not good. I'm now on oxygen during the day as well as during the night.

I also started IVs Tuesday night. One is the Tobramycin again, which is what effects my magnesium. *crosses fingers* last time was ok, so let's hope this one will be too!

As soon as I'm doing better, I'll be sure to post again.

Monday, August 18, 2008

Evaulation Testing

So I began the testing needed to continue with Cleveland. I wasn't sure at the time whether or not I wanted to be listed, but figured I should still keep going in case I did want to. It's a lot harder to get on the list than to be taken off.

I ended up in the hospital just 3 days after I returned from Cleveland. My white blood count was at 31! Normal ranges from 7-10, give or take a few and my normal runs about 13. So while I was in, we asked for them to run as many of the tests as they could. I had the following completed:

  • Sinus CT - very simple, just lie in one position and keep still.
  • VQ Scan - Lie very still and inhale the radioactively tagged mist. Then they inject a dye through an IV and again, lie very still. Simple and easy.
  • Abdominal ultrasound - Lie and have them move the wand around your abdomen. The only hard part I think came with the technician. She was a little hard in pushing the wand into me and it hurt a little. But really not that bad.
  • Echocardiogram - They did this with the bubble study. The echo was really neat in itself. I had never had one of these and it showed my heart beating in real time. It was a little awkward sitting there with my chest bare though. The bubble study was the hard part. They weren't able to use my port (too much tension in the line) so they had to place a peripheral IV. They withdraw some blood and agitate it to create some bubbles and then push the blood back in. They watch the monitor and it looks a little like snow coming through (really cool!!) but they look for holes in the heart. Turns out I have a small hole in my heart, but they said it was common and that it wouldn't interfere with transplant.
I also had my vaccinations made up to date which included having Hepatitis A administered. I had already completed the B series.

When I was discharged I continued with the rest of the testing. The remainder consisted of:
  • EKG - place the stickers and sit there for 3 minutes. Cake.
  • Gastric emptying study - Eat an egg sandwich which has a radioactive tag ( I felt like I could glow in the dark by this point) and have x-rays taken at various time intervals. Mine didn't empty quick enough at first, but finally did (Just in time too!)
  • Dental Clearance - My dentist took x-rays and told me that I'm in good dental health :)
  • I was able to skip the mammogram since I'm only 23... but they had it scheduled at first.
  • Esophageal w/ manometry and pH study - This one so far has been a "no-go". I have too strong of a gag reflex to be able to have the probes placed and they are unable to sedate me because the manometry is meant to measure muscle tension. Sedation would cause my muscles to relax and give false results. I'll be sure to change this if I ever am able to complete this check. Right now we're seeking approval to have other results serve as a substitute.
I also have a few other tests - DEXA, pap smear, etc. which are coming up with my yearly checks anyway. I return to Cleveland on Sept. 16th when I will tell them I am ready to go on the list. I'll be sure to write about how that goes!

Friday, August 15, 2008

Welcome to Cleveland

So after my doctor wrote my letter of introduction to Cleveland, they scheduled my appointment for June 17th.

A few days later, my itinerary arrived and ... wow. I was expecting a full day, but wow, not that full! My day started at 7:05 and my last appointment started at 2:30.

My mom, Cameron (my boyfriend) and I all drove up the night before and stayed in a hotel... um, it was tiny, but I guess it worked. I was on IVs at the time and it just... I dunno. IVs in a hotel just doesn't sit well with me. Too icky!

We woke at 5:30am, got ready and left the hotel at 6:30am. I had managed to forget my power cables for my airway clearance at home (last time I try to pack everything in about 20 minutes... sheesh) so I had Cameron do CPTs on me. Nothing like asking your boyfriend to beat you, lol! We arrived at the hospital at 7, just in time to stand in a huge line for the lab. That was my first appointment, bloodwork!

After they took what felt like all of my blood (about 16 tubes), I went upstairs for my Pulmonary Function Test (PFT). This wasn't the normal kind that I do in the clinic at home, this was the full PFT which they do once a year. It included 3 kinds of tests done on a machine that I blew into, followed by an albuterol treatment, and then repeating the tests. Most CF patients are familiar with this routine. Then we did a 6 minute walk. They put me on oxygen before we even started the test. They said they did that for everyone so they wouldn't have to stop during the test to put the oxygen on if I needed it. I guess I understand, but I still didn't care for having that nasal cannula on.

I was told before I went that no matter how much I disliked something, do not argue with how Cleveland did something unless I felt that it would be detrimental to my health. To understand that they do things differently and that I could ask questions, but that I needed to be as compliant as possible. I feel being compliant is something they hold over your head as a CFer. "You better do as I say or I won't recommend you for transplant if you need one!" kind of threat. I've always been very compliant... very inquisitive, but compliant. And stubborn, but that's just a family trait :)

Anyway, continuing with the day... Next stop was for a chest CT, really easy. The ones that I've done in Cincinnati were kind of difficult. A lot of "take a deep breath in and hold your breath" followed by "exhale completely and hold your breath out." I don't remember a lot of that with their CT process, which was just fine for me! Then I had your standard chest x-ray. Nothing too exciting there.

After those tests were finished, we got lunch at a cafe there, which was really good! Then back up to the offices to meet with an insurance specialist. There wasn't much for her to tell me since I'm under my parent's insurance still and they had agreed to give me full coverage for the transplant. I even get a travel and living expense allowance! Then I met with the social worker. She administered the psychological evaluation to make sure I was stable enough to go through the process and that I had a good support system in place for after the surgery. Both of which were not a problem. Especially with the support system -- being a close-knit catholic family does have it's perks sometimes!

Finally, I got to meet some of the transplant team! First, the pre-transplant coordinator/nurse came in and gave me a brief introduction of how the Cleveland Clinic works, their statistics, what to expect from transplant, etc. Next, I met with Dr. Olbrych. He was absolutely wonderful and finalized my confidence in the center. He didn't sugar coat anything, but with something as serious as a lung transplant, I don't think things should be anything but straight forward. He asked me if I was told I had to have the surgery tomorrow, would I do it? I told him no. Because of that answer, my case was not sent to the board to be placed on the list. Instead, I was to return in 3 months to be re-evaluated.

In the meantime, I should continue to go through with the other tests required to tests my other organ systems, which is what I've been up to....

Wednesday, August 13, 2008

The ugly "T" word

I will never forget standing at St. Elizabeth's ambulance parking talking to my mom and hearing her say "Dr. Trapnell wants to discuss lung transplant with you. He's upset that you haven't had this conversation yet."

At the time he wasn't my doctor and my only thought was "How DARE he bring up such a horrible thing!" I knew my health had declined over the past few years, but as most thought I guess, that I would be OK still. I figured that if I needed a transplant that my doctor at the time would have brought it up by now. 1 month later, I switched doctors so that Dr. Trapnell was my CF doctor and have never regretted that decision once. In fact, once I knew that he would take me as a patient, I didn't even have to hesitate to have all of my stuff transferred to him.

He brought it up in the kindest way, saying that he doesn't think that I NEED it right now, but that he thinks I will in the future. That's the time when you need to undergo all of the evaluations and get on the list. So many people are on the list and wait and wait and wait... and end up that they waited too long to be placed on the list and don't make it to surgery. We talked about it again a few times after that (I see him on a fairly regular basis at this point) and finally in April, I decided I was willing to continue with the process. That decision was a tough one for me. Not because I don't want to live, but because I was afraid of dieing during surgery, or worse... soon after surgery from complications. I know all too many people who either didn't make it to transplant or died from complications. Each complication being unique.

June 17. That's the day that I made my first appearance at the Cleveland Clinic in Ohio....