Routine Doctor Visit

Had a regular appointment with Dr. Trapnell today. Nothing big to really report on.

I'm up 4 1/2 pounds since August and my lung function is about the same, which is good. My goal is to gain more weight and try to avoid as much of the crap that's going around as possible. I also will be starting full time oxygen, but that's to help me be able to function better. Last, they changed my BiPAP levels so hopefully I won't burp as much during the night.

That's all that happened. Have a Merry Christmas everyone!!

The List

So I think this was the most nerve wrecking day of my life. I got the call from KJ saying that they needed my emergency contact numbers so that she could place me today. As of 2:30pm on 12/12, I am active on the transplant list in Cleveland. I have taken my anti-anxiety med and I think it's working... but I still have my heart skip a beat every now-and-then. Now the really hard part begins.... the waiting!

Cleveland News and Then Some

Wow, I've been so busy lately that I didn't realize that I hadn't posted a blog in a few weeks!


I went to see the Wizard of Oz on stage. It was AMAZING... but I'm a sucker for the Wizard It's always been one of my favorite stories. They had a real ToTo and everything! Just my Mom, sister and I went to see it and had a great time. It's not often that I get Kelly away from her friends - haha!

That Friday I was officially sick. I couldn't get off of my O2 without my sats dropping into the low 80s. So I got to break in the new port with 3 IV antibiotics. By Monday I was feeling a little better and was able to step off of the O2 for a while.

Tuesday I left for Cleveland for my last appointment before they presented me. 4 hours driving up for a 20 minute ENT appointment to drive 4 hours back... all in one day. WHEW! But the ENT said everything looked good and didn't see any major risk of my sinuses infecting my new lungs. A definite relief

Thanksgiving was great. We only celebrated with my Aunt, uncle and one cousin, but it was relaxing and nice. I didn't do shopping the day after Thanksgiving like I normally do... just not enough spunk this year to get up at 5am to be in a crowd of germy people. I think the idea of transplant has made me into a slight germaphobe

I had a sleep study last night which was to titrate my BiPAP... I wasn't allowed to use my nasal pillows and had to use the nasal mask. The bridge of my nose is so sore right now... But I should be getting my BiPAP machine soon. I liked it when I was in the hospital (maybe I should say tolerated... not so much liked) and I feel like it will benefit me.

FINALLY... I was presented at the Lung Transplant Selection Committee and Cleveland has approved for me to get a double lung transplant. Ohio is a little goofy and requires cases be sent to a consortium but Cleveland said it's a formality for them. So basically, I will be on the list in 3-10 days, depending on how quick the state moves. I think I'm still in shock a little.

It feels like all of this is just happening so quickly, but I think I'm ready to take that next step in getting on with my life. Everything has been put on hold for too long now and it will be nice to just be able to do for myself!!

New Port

So I had my old port replaced last Thursday and recovery has been going well. It's still tender to touch, but nothing too bad. If I know I'm going to be moving my arm a lot, I just take a tylenol before hand and I'm good to go!

I got to see the Wizard of Oz last night at the Aronoff... it was wonderful! Mom, Kelly and I all went and we had a great time.

My next thing on my list is I have my post-op exam on Monday and then I go back to Cleveland to see their ENT folks on Tuesday - eek!! Wish me luck!!

Home Again Home Again....

So yesterday was the eternal day at Cleveland... AH!

Mom and I drove up there Sunday night and stayed at this beautiful hotel. It was a little on the pricey side, but that's what we get for waiting until last minute to book the reservations, right? haha.

So Monday started at 8:05 with bloodwork as usual. Followed by a chest CT and x-ray. I then had the opportunity to meet with one of the surgeons who was very nice. He explained the surgery and the risks, which I mostly knew about at this point. He did explain that who does my surgery depends on who's available (obviously) and that will determine which incision I have. 2 of the surgeons do the clamshell (basically follows the underwire line of a bra in a "w" shape) and the other does the one straight down the middle of the chest. If I had my choice, I would rather have the clamshell for aesthetic purposes

We then had a needed break for lunch which I picked at my food. I never eat well when I'm there, too many nerves! Then we were off to get my echo done. I had one done a while ago here in Cincy and it revealed a small hole in my heart. They said this was normal and most people have one and that it shouldn't cause any trouble. Cleveland wanted it to be repeated. They thought the hole was a little larger than what they like so they wanted another look. Everything looked good and the hole looked smaller this time, so that's one more thing checked off the list

I then did my pft and met with the pulmonologist. Dr. Budev was AMAZING! I asked a bunch of questions and she had answers. She decided that I am in the window of transplant, but I'm on the very healthy side which is where they want me to be. I will go back to Cleveland on the 25th to see the ENT folks and then be presented before the tx board on Dec. 1st!!! She sees no problem with listing me. Ohio has a state board that transplants have to be approved before, but for Cleveland it's more of a formality. Cleveland does the 2nd largest amount of transplants per year in the US, so experience kind of says it all to Ohio So I will most likely be on the list by mid-December!

We also talked about the fertility issue. She strongly advised against me having my eggs harvested because of the hormones that you need to take prior. It an cause really bad pulmonary side effects, so besides the fact that I don't think I can financially afford it. However, she said that if I chose to adopt, she would be my advocate and support me every step of the way. Not the exact answer I wanted, but glad to know that I have someone who would support my other options.

And that's Cleveland for ya! I gotta go get ready for my trainer! I'll be sure to post more when I know anything!!

Home from the Hospital

I was admitted into the hospital on 10/14. Nothing major, just I knew I was getting sick and figured I could get my testing for Cleveland completed. I needed to have a pH probe, an esophagram, and a right heart cathaterization

• pH Probe: Not too bad. It was a small flexable wire that was guided up my nose and down my throat. Once it was placed it was just annoying. It kind of felt like I had a popcorn kernel stuck on the back of my throat. Those results came back within the normal range for acid reflux, so yay for me!
• Esophagram: This was to replace the esophageal w/ Manometry that I wasn't able to complete last July. It's basically an upper GI. I drank this chalky drink which was flavored a chocolate flavor (I love going to a Children's hospital!) and that made it tolerable. It showed that I had a slow emptying time for my stomach (which we already knew) but that everything flowed in the right direction and had good movement.
  
• Right Heart Cath: This one wasn't that pleasent. It wasn't hard though... I was asleep for it! They instered a cathater into my femoral artory and vein and guided it up to my heart. While in the heart, they take internal blood pressures from the right side of the heart. These numbers can indicate how severe the lung disease is. Mine is slightly elevated indicating I have lung disease (surprise!) and these numbers will give me my placement on the transplant list. The downside to this test was the massive bruise that I had on my right inner thigh and the soreness from having to lie flat for so long.

I had my yearly appointment recently. I've talked to my CF doc and transplant docs about having kids post-transplant. None of them were too happy about that idea, but said that if I wanted there was the option of serrogacy. I brought it up to my GYN and she gave me some info on it. How they harvest the eggs and such. She also said that since they don't want me to get pregnant that I may want to consider getting my tubes tied. Pills are frowned upon because the horomones can play with the medication post-tx. An IUD is a foreign object and could potentially stimulate my immune system which is not good post-tx. It could cause complications and rejection of the lungs. Then there's barrier methods but my doc said that they are really only 85% effective. So have a few options on sterilization, but eek. I never thought I'd be sitting here at 24 years old and considering this. My other option is to wait and have my husband (when that day comes) get a vastectomy.

I don't know. A lot to think about... but I go back to Cleveland on Monday, so I can talk to the doctor then and see what they think. I have a sleep study tomorrow though, so I'll be busy for the next few days!

Back from Cleveland

So Mom, Cameron and I are all back.

After the power was knocked out Sunday night, it was good to get to leave. Just wish it was for better reasons, like a vacation to the Bahamas :) We took a bunch of our food to Teresa's though, so at least everything wasn't lost.

I've waited awhile for me to post about Cleveland because things were up in the air. I think I understand where I stand now... so here it goes...

Cleveland was just like the last time. Get there, blood work, chest x-ray, meet with the social worker again (she's now signed off on me, I'm mentally stable and ready to go through with transplant, haha), and then I met with Infectious Disease. Since CFers grow a lot of stuff, I've been meeting with people from ID for the last several years now. Nothing new was said by then, other than they were surprised that one of my bacteria was sensitive to Doxycycline. I guess it typically isn't, so I guess I can be thankful for that. Then I met with the pulmonologist. After reading my PFT, he stated that at this time I was too healthy for a transplant since I had a slight improvement from my last PFT.

I felt like the rug had been pulled out from under me. I had spent the last 3 months getting myself ready to tell them I was ready to get the transplant now only to have them tell me it's not time. Why can't we be ready at the same time?! The doctor then told me that they would discuss me at the next meeting, but I wouldn't be placed on the list until I was "presented" at one of these meetings. The meetings are held every Monday.

Now they've had the meeting (after much drama) and have decided that it would be best for me to continue with the testing. I have to do a barium swallow (replaces the esophogeal w/ manometry), I have to do the pH study but there's 2 options there (bravo or a small probe that goes up my nose and down my throat - both icky), and I have to have a right heart catheterization which is the test that will give me my placement on the list.

I will return to Cleveland in November and hopefully that'll be the time that they decide to list me. I just want to be listed and have that part of the waiting over with.

I'll keep ya posted

Doctor's Appointment

I had my appointment yesterday and things went well.

I am officially at 106lbs and my PFTs were up just a little. I'm sitting at 24% now. I also got the news that I don't have to go back to University for my admissions... I can go to Children's without jumping through a million hoops :)

Tuesday's still there scaring me a little... just nerves from having to go to Cleveland. I thought it would get better each time I go up there, but it's just as bad (if not worse) as the first time I went.

*sigh*... I'll let you all know how everything goes!

Just the basics

Still on IVs, at least until I see the doctor on Friday. I go to Cleveland again next Tuesday, which I'm getting a little nervous about. Just the thought of going through all of this... it's just scary.

I'm at about 106 lbs now, which is so great. I finally broke that 105 mark!! 112 here I come!!!

Changes

So endocrine has increased my insulin. I think I'm actually gaining more weight now, which is great!

I also had more antibiotics added. I had some symptoms flair up on Thursday, so we're crossing our fingers right now. I think things are working well since I am feeling much better.

Anyway, need to make this short, gotta go to the trainers!

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!!

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.

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!

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....

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....