Day Four Evaluation - Original Date Feb 21, 2007

I actually got to sleep about 15 minutes later than I had last week, so I got up and moving at about 6:15am. I ended up leaving the house at around 8:20am.

9:30am - Infectious Disease Consultation TC (Transplant Center):

This appointment was pretty simple though I wasn't really sure what all would be involved with this meeting. I thought it was going to be geared more towards my culturing MRSA (Methicillin Resistant Staphlococcus Aereus), but it was not.

The doctor came in and talked to me a little about whether or not I had been exposed to TB - which according to my test results from last week the answer to that is NO. Then he asked how often I am admitted, he asked what bacteria I culture and about drug allergies and such. He also told me that from his perspective I would be a GOOD candidate for transplant because I HAVE been exposed to all of the viruses that they WANT me exposed to - meaning I have all of the antibodies for those things - and I have NOT been exposed to the things they do NOT want me exposed too. The things that they want me to have been exposed to are EBV - Epstein Barr Virus, CMV - Cytomegalovirus and Chicken Pox. He said that those viruses can be potentially deadly in a person post transplant if they have NEVER been exposed to them before. He really emphasized that with Chicken Pox. He said there was a vaccine that could be given for chicken pox now, but if there had been NO exposure to chicken pox pre-transplant and a person were to catch it they could find themselves in a desperate situation.

He also said that since I did not have the antibodies for Hepatitis A and B that he wanted me to be immunized and that he also wanted me to get my Pneumonia Vaccine. I got the Pneumonia vaccination today and started my series of Hepatitis shots today as well. He said that I have to come back in 1 month for one and in six months for both. He also said that in the event that I am transplanted BEFORE I complete my series I will be given the last of my shots when I come for my 1 yr post transplant visit. Due to the weakened state of your immune system he said that often times our bodies do not have the ability to produce the antibodies that the vaccines are meant to help you produce, so giving them soon after transplant would be pointless because I would not get the benefit of the immunization that way.

At this appointment I asked him the following:

Is it possible for me to get a MRSA infection in other parts of my body when I am transplanted - with my lungs being removed and the bacteria being exposed to other areas of my body?

Yes - He said that in any situation where a person cultures bacteria and the bacteria has the opportunity to be in contact with other areas of the body it is POSSIBLE. He also said that it is unlikely, but still it is possible. They closely monitor all patients post transplant in the event that did happen. There are ways to treat such things - though he did say that in a small - very small - percentage of cases sepsis can occur if the infection is not identified.

I asked them what drugs/antibiotics they would treat me with post transplant because at the very least I would be taking something initially.

His response is that since I am able to take Cipro they would most likely prescribe Cipro and some other drugs within the same family.

He also said that often times with Cystic Fibrosis patients they have problems post transplant with their sinuses re-infecting their lungs. He said that is something that we would need to closely monitor. He said in many instances it can be controlled but because in most cases the bacteria in our lungs is also in our sinuses as well we will need to be careful. He also said that in that instance it may require antibiotics, but the problems that we have with ongoing lung infections now - with CF diseased lungs - would not be as much of an issue and the infection could be handled and treated much easier than it is now.

11:00am - Psychiatry Consultation:

This appointment was simple too. We got there at about 11:25am. I had to fill out a form that asked a bunch of questions. Then once I completed that they called me back.

I talked to the psychiatrist for about an hour or so. She was great. She was easy to talk to and just asked about my interests, school, if I worked - where I had worked, my personal life. She asked how I felt about transplant, if I was ever diagnosed with depression, if I had anxiety, if I had ever taken any medication for either.

1:40pm - Radiology Mammogram:

I was dreading this appointment and turns out I dreaded it for no reason. I went through the motions, but when it came time for the actual test the tech said I was too young to need this done. They talked to the radiologist and then sent me on my merry way without having the test done.

Day Three Evaluation - Original Date Feb 16th, 2007

I had to get up at 5am again Friday morning. We had to leave the house at about 7am to make it across town to my first appointment at 8am.

8:00am - Allergy Anergy/PPD w/Control Skin Test Reading:

This was a brief appointment that was simply meant to read the results of my PPD test from Wednesday. Remember the test I mentioned that tested to see if I had been exposed to TB. I have NOT been exposed to TB and YES my immune system responded.

11:00am - Heart and Lung Financial Advisor:

This was pretty simple we met with a financial advisor to discuss my insurance situation and fundraising. This lasted about 30 minutes and we were done.

11:30am - Lab Non-Fasting Blood Visit:

This was simple. They drew ONE vial of blood. I asked what the blood draw was for and was told that it was for some form of typing.

1:00pm - Radiology Nuclear Medicine V/Q Injection + Scan (Ventilation/Perfusion Injection + Scan):

I thought this test would be one of the hardest tests I had to go through and it was relatively simple to be honest. This test is to measure the way that air flows through your lungs and also the way that blood flows through your lungs. They are hoping to determine if one of your lungs is more damaged than the other and which one it is.

Procedure wise they had me lay on my back - they gave me pillows to elevate my head a bit so I could breathe a little easier. Then they center cameras above and below your chest to take pictures. There are NO xrays - the cameras they use are specially made to only identify the radioactive materials so xrays are not needed. Once you are lying on your back and they have the cameras ready they give you a mask. You have to put the mask over your mouth and nose. They have you take a few breathes and then they inject Xenon into the mask and you have to inhale it and hold your breathe a little and do that again. The Xenon did not taste or smell or make me feel any different than usual. I laid there with the mask over my mouth and nose for about probably 7 or 8 minutes maybe 10 I cannot recall. All the while they were taking pictures of the way the gas was taken into my lungs and how it was dispersed out of my lungs. The way the pictures looked it showed up as reddish on the camera - reddish where the gas was and darker to black where the gas was NOT. After the gas portion of the test I was able to take the mask off. Then the tech rearranged the cameras for the next test.

The next part of the test was the injection portion. They injected a protein combination of sorts into your blood stream. This also showed up only on the cameras that they were using. It showed the way that blood flowed through the lungs. She had to take 4 sets of pictures for this portion of the test. One portion was front and back pictures, then right front and left back, left side and right side AND left front and right back. It showed all of the lobes from different angles. This was the same premise as the first set of pictures the brighter areas (which in this scan appeared to be bright WHITE) were where the blood was flowing and the dark areas were the more damaged parts. For mine I found it very interesting because she said that a NORMAL person’s scan would be more defined outer edges of the lungs whereas mine were somewhat "fuzzy" and undefined. Also with the gas portion of the test the upper left lobes of my lungs appeared black - indicating that little or no gas got to that area and it was severely damaged. The same showed up on the blood test portion of the scan there was bright white everywhere except the upper left lobe of my lungs it was predominantly black.

2:00pm Gynocology Consultation (Medical):

Just a basic gynecology appointment. Nothing spectacular and I get the results in a few weeks.

Day Two Evaluation: Original Date Feb15th, 2007

Thursday started earlier than Wednesday for me. I rolled out of bed at about 5am and got cleaned up. After treatments and getting ready we left the house at about 7am.

We rolled into the hospital - which was a different facility than the place we went on Wednesday - at about 7:40am.

8:20am Radiology Bone Mineral Analysis (aka - Bone Density Scan):

They said that you could not take ANY Vitamins and/or Calcium Supplements the day of the test. To eat a LIGHT breakfast, but to refrain from ANY food containing calcium, milk, cheese. Also they recommended that you wear clothes that were comfortable with no metal zippers, buttons or snaps.

As for the test itself, they had me lay flat on my back with a pillow under my head. Then they put a big square pillow beneath my knees and legs to lift them up. They did a scan of my spine - in my midsection. Then they had me roll onto my left side and slide with my back all the way up against this metal slide thing. They took a scan of my spine in that position as well. From there they had me lie on my back again and put my legs in a few different positions and scanned my hips.

I asked about what the pictures were supposed to look like because I was curious. She said the black areas were tissue - the really white areas are where the bone is dense and the gray areas are where the bone is less dense.

According to my test results - My spine is normal but I am slightly into the Osteopenia range in my hips.

10:30am - Radiology CT Chest:

This was a CT scan of my lungs. They did NOT use contrast of any kind. Typical CT Chest Scan. They lay you flat on your back arms up and they have you breathe normal then on occasion a voice prompts you to take a deep breath in and hold it. You hold your breathe for roughly 10 seconds each time you do it. If you are unable to hold your breath for 10 seconds they will adjust the timer for you. That test lasted about 10-15 minutes in total.

1:00pm Cardiology Echocardiogram w/Contrast:

The test was really not bad the more unpleasant thing was the fact that the room was bitter cold and you are lying with a dinky gown covering you. The point of this test was to show them whether or not I have a hole in my heart.

She took several pictures of my heart using a device similar to what they would use for an ultrasound. She ended up having me lie in about 4 different positions to get images of my heart. It was also interesting to see that when I would breathe in you could barely make out where my heart was, but as I was breathing out it became more clear. So the lung wasn't in the way when I wasn't inhaling I guess. After that I had to lay flat on my back and she rubbed around the base of my sternum and my throat - right between each clavicle. When she was around my clavicle she turned on an audio feed and you could hear my heart beat.

The contrast part of this was Saline and Sterile water combination. They had to start an IV - with a 20 gauge needle. They injected the contrast twice to make sure they got what they needed. The tests showed I did NOT have a hole in my heart but they did show that I had some type of pulmonary filtration or something similar to that - I can't remember what she called it. She said that it is not normal - but is probably typical for my diagnosis with the CF and needing transplant.

2:00pm - Pulmonary Med ABG O2

Arterial Blood Gas – for those that don’t know – involves getting a blood sample from an artery NOT a vein. Due to the nature of arteries and the fact that they are surrounded by nerve endings this test has the potential to be very painful. Overall the experience was not bad though. The lady that tried initially stuck my twice but was unable to get a sample because the artery was shifting on her. Even though she stuck me twice it was not bad. It was uncomfortable but not overly painful. At the first hint of sharp pain she removed the needle each time. She ultimately got her boss to come in and get the sample. He also had to stick me twice, but he did the same as the original nurse. If there was any indication of pain he removed the needle or readjusted it so it did not hurt. He got all the blood he needed the 4th time around. The strangest thing with that blood test to me was that I could feel the blood going every time my heart would beat. It was somewhat bizarre.

The test results for that were as follows. O2 levels NORMAL is in the 90s - MINE on 2 liters of O2 were 86. CO2 levels NORMAL between 35-45 MINE on the high end of normal at 43.

I met another transplant patient this day as well. The man was telling me about the blood gas and who he liked doing his - he had a single lung transplant 4 yrs ago. They were from Tennessee - the same area most of my family is from, so it was nice to talk to them a bit.

Day One Evaluation - Original Date Feb 14th, 2007

For all of those in the "curious about transplant" category or for those that just want to know how the past few days have been for me --- here it goes.


9:30am & 9:40am - Fasting Blood Work and Lab Container Visit:

Fasting blood work equated to probably about 12 vials of blood - maybe more. Lab Container visit just involved any type of specimen you can think to give to test for any and every problem that you might have.

9:50am - Radiology Chest X-Ray:

A Chest X-Ray same old same old - chest against the board and turn with your left side against the board and your arms up.

10:30am - Cardiology Electrocardiogram:

This took about 15 minutes max. Just involved a few adhesive patches on my chest and stomach (which was slightly uncomfortable – the adhesive meaning) other than that we are talking pretty painless and very fast.

11:00am & 12:00pm - Pulmonary Med Complete PFT & Pulmonary Med Six Minute Walk:

They took me right on time for this test and it took about an hour. I had to take my O2 off - and STAY OFF for the length of the testing. They were monitoring my O2 levels the length of the testing. My O2 Saturation actually never dropped below 92 (which is an improvement from before IV treatment when they were at 89). I had to do the typical breathe normal breathe normal - DEEP BREATHE and BLOW and keep blowing for at least 6 seconds. Then I had to do a test where I panted rapidly (outside of the box) for about 12 seconds. Then they shut me in the box - I did that test once - since I get claustrophobic she said I could stop since the results were consistent with the other tests.

After that I had to do the test that measures the amount of gases you absorb or retain - that was the reason I had to stay off the O2 the length of the test. You have to breathe normal, take a deep breath (at your own pace) breathe all the way out slowly and hold it. Then she hit a button and released the gases you take a deep breath in and hold it and then blow out all the way. That test for me ended up being about half of what was normal - I think she said normal was about 22 and my reading was about 11. Then I got 2 puffs of Albuterol and redid the first 2 tests.

At the end of the breathing tests I did a six minute walk with the O2. The Respiratory Therapist followed behind me with the pulsoximeter - that was attached to my finger to measure my oxygen saturation level - and a tool to measure the distance that I walked.

1:00pm - TC Cardiology HL Diet Consult (TC =Transplant Center HL=Heart and Lung):

This was relatively simple. We talked about my diet and how I may need to modify it to add more protein before transplant and less sodium after transplant. The protein would help me gain weight and I would need to lower my sodium intake because of the meds post transplant.

2:00pm & 2:30pm – Pre-Admissions Appointment & Allergy Anergy/PPD w/Control Skin Test:

This is a test to see if you have been exposed to TB. They inject two allergens(Yeast and Tetanus) that most people react to on one arm and they inject the TB testing portion on the opposite arm. If you do NOT react to either of the controls – the yeast and tetanus – then the test is deemed inconclusive because your immune system is not functioning properly otherwisee you would have a reaction to at least one of the controls. Due to that the results of the TB test are not known for certain because you did not show a reaction. I hope that makes sense. So you want to react to the yeast, tetanus or both. Doing that shows your immune system is responding the way it should, and in that case if there is NO response to the TB then you are truly negative for TB or exposure to TB.

3:00pm Heart Lung Social Worker Evaluation:

This was somewhat involved and took about 2.5 hours to complete. We talked in a group first – the social worker, myself, my mom and dad. We talked about who would be my caregiver, the issue of insurance, some about fund raising and a little family history. The social worker also got my parents work and home information. Then my parents left and I talked to the social worker alone for a while. We talked about my history, school, college, jobs, hobbies, interests, and she asked the worst thing to ever happen to me and the best thing to ever happen to me. She asked about my spirituality and religious beliefs. I also asked her a few questions about this process and how long it takes for them to decide if I am “listable” after I finish the evaluation. She said once all of my tests are complete that I could know something within a week or two, BUT all of the tests have to be complete.

Well in other news about the FIRST Day – We met so many wonderful people that had also gone through transplant at the center. We met a woman who had a single lung transplant last June and was there for her monthly appointment. She was roughly 50-60 years old. She told me a bit about her experience at the center and said nothing but wonderful things about the center as well.

Then I met a man whose wife had a single lung transplant about 4 years ago. She is still doing wonderfully – though she was not at the hospital when I met him. He said that he helps in heading up the transplant support group and gave me some information about that. He also talked for a long time to me about the different CF patients he had met through the center and how they had done after transplant – he said every CF patient that came through the center did extremely well.

I met a woman who had been waiting for 8 months now for lungs, considering she has been waiting for 8 months she looked great. They have her going to therapy at the hospital three days a week and it helps keep her in shape for when she does have transplant.

Overall the first day was long but enjoyable – woke up at 6:30am and arrived home at the end of the day at 6:45pm.

Welcome ~

Hello - Welcome to any and all that have come to read about me and my experience.

This blog is to journal my progress and my experience with my Double Lung Transplant. Some of the posts will be back dated as they are journal entries I made prior to transplant and during my testing and evaluation to see if I qualified for transplant. The majority of the posts will be updates about my life post transplant and my recovery.

I hope you enjoy and if you have any questions feel free to post and ask I will do my best to reply to them.

Please remember that this is simply MY experience. None of the information in my blog should be used in place of the advice or opinions of a medical professional. I am simply telling of my personal journey with transplant.

Thank You and Have a Wonderful Day!

Lindsey