Transplant Update & the Olypmics

Every 6 months my husband has a post-transplant clinic appointment. He spends the entire day at the UW-Madison hospital where he undergoes a chest x-ray, PFTs, blood tests, a 6-minute walk and a meeting with his transplant coordinator and doctor.

Once again he passed all his tests with flying colors. His lung function is holding steady at a whopping 93% and he is able to walk circles around the hospital. His new lungs are evident that waiting 3.5 years and having 5 dry runs is worth its weight in gold. And, it is always great fun to hear his call from his cell phone on the way home (2-hour drive) to let me know how everything went. You can actually hear the smile on his face.

This time, he threw me for a loop during his call home. It seems that the hospital has extended an invite to the 2010 U.S. Transplant Games! That's right! He is one of their most healthiest patients so they think it would be a wonderful idea for him to become one of the athletes for Team Wisconsin when the games are held in Madison, Wisconsin that year.

Of course, given that they are being held in the hometown of his transplant and the fact that his health is doing wonderfully, he decided to get more information on it. Once he found out that there is an event in golf, his smile got huge and we are now training for the 2010 Transplant Games! Yes, I say "we" because there is a 5K event open to both transplant recipients and their families so I will be running in the 5K event that year!

This is just too awesome for words. Us - in the Transplant Olympic Games - how awesome is that!? It was not only a miracle for my wonderful husband to get his transplant but now to be an athlete in an once-in-a-lifetime event! All I can say is life is good!

Time to Move

We have been living in Wisconsin for so long now that we have realized it is time for us to move on. No, not tomorrow or next month but we are working and planning towards our future in a new state. This is the part that makes any transplant recipient nervous; leaving their transplant hospital and finding a new one without risking their medical care.

Greg has been doing so well (92% lung function) that we hate to risk leaving the UW-Madison transplant clinic. It took us some time to realize that the reasons we went to that specific hospital no longer hold true for our family. First, we wanted Dr. Robert Love because he was not only one of the top lung transplant surgeons in the United States but he was a Cystic Fibrosis double-lung transplant specialist. Since Greg's lungs were so bad (10% lung function) and diseased, we needed and wanted nothing but the best: someone who knew how complicated CF lungs could be to remove (and a pain in the rear they were). But, Dr. Love transferred some time ago to Loyola Hospital near Chicago, Illinois. Therefore, he hasn't been our doctor in a couple of years.

Then we lost the other lung transplant surgeon that worked on Greg; Dr. Zink. He transferred as well shortly after Dr. Love. Last to go was Greg's transplant coordinator, Anne Marie. The 3 main pillars of support at the hospital, and the people that pretty much got everything done us (with amazing results), were gone. They were replaced with decent surgeons but now all Greg sees is the pulmonologist (not transplant doctor) and a new transplant coordinator that has cost us a ton on prescription refills because he can never get any of the prescriptions ordered correctly.

So, what is the real reason to stay? It is not because of the hospital. Sure, they have all his medical records and the respiratory therapists know him by face but that doesn't mean he is in any better hands then any other hospital. His medical files can easily be transferred and we can even get him evaluated by a transplant hospital in a new city we are looking at moving to before we even move.

Now, it is just time to narrow down our city choices. This will take some time and since we have at least a year until we are ready to move, we will make sure to do all the research needed before making such a decision. It is time to move beyond the dead trees and dreadful winters of Wisconsin and on to the warmer climate that allows us to enjoy more the second chance at life Greg has been given.

New Record!

Blow baby, blow!

Greg had a transplant clinic visit last week and it is ironic what the doctor's say and how much patients can prove them wrong. This was one of those weeks because we were told a long time ago that lung transplant recipients will hit their highest lung function numbers at the 6-month mark and that is it. Well, we are happy to report that Greg's record lung transplant pulmonary function test (PFT FEV1) has increased greatly since his last visit. He has gone from an overall lung function reading of 86% to 92%!!!

What a cause for celebration! Over 3 years post transplant and every day he is proving to the doctors that he just doesn't follow the norm. Why? Well, he knows the law of attraction in this world and never once does he allow any doubts of his own health to come into his head. He is always positive about his health and maintains a healthy lifestyle of taking his medications correctly and on time, exercising regularly, protecting himself from anything that may be harmful in the environment by wearing a mask, and by living life to the fullest. Way to go hubby!!

Upcoming Transplant Clinic

One week from today will be Greg's next transplant clinic appointment. Not to worry, this is just a normal clinic check-up and nothing more. The thing that we are working out right now is what can we get done outside of the transplant clinic.

Why? Well, as it turns out, Greg's insurance was changed back at the end of last year and now his transplant hospital is no longer covered in-network. As many of you probably already know, dealing with a hospital that is out-of-network can become expensive. Unfortunately, UW-Madison has always been my husband's transplant clinic and he has done so well that we are not willing to change just to save ourselves some money. So, what do we do? Figure out ways to cut costs of course!

The best way to try to cut medical costs without cutting out needed medical procedures is to find out what can be done at a hospital that is covered in-network. Lucky for us, such a hospital exists about 5 minutes away from us and has been handling all his Cystic Fibrosis care for 17 years now. The only problem is that the hospital's computer systems are not linked so we can only have the blood tests drawn and nothing more. The local hospital will then send the blood samples to the transplant clinic so they can do all the necessary tests.

Sure, it is still going to be an expensive visit next week but at least there is one thing we can do locally to cut costs. Let's just keep our fingers crossed that there is no need for any additional tests not already on his schedule for that day once he gets there.

Another Medication Down!

Greg had his 6-month transplant clinic appointment this past Monday and we are proud to announce the following:

• Lung Functions are in the high 80's
• The lung stent can be removed
• No more need for daily Pulmozyme inhalations

Greg has opted to keep the stent in his airway as it is not causing problems and going in for a bronchoscopy is more risky then leaving it in. He has never had a problem since the stent was placed in his right bronch back in late 2004 so he figures there is no reason to fix something that isn't broken. Of course, he has no problem discontinuing the inhaled Pulmozyme as this is his last inhaled treatment to get rid of. If you were doing this medication for over 15 years, you would want to get rid of it too!

So, we are on cloud 9 at the moment and what a special week it has been. Not only have we gotten this great news but today is Greg's 33rd birthday! A wonderful and happy birthday it is!

Ugh! New Staff!

Frustrating isn't even a word to describe it how the health care industry can be! Yes, I understand that people come and go from jobs all the time but you should at least be given someone who knows what they are doing.

What am I going on about? Quite frankly, it is my husband's new transplant coordinator. Sure, things were bad in the beginning with the last one but at least she knew what she was doing and we actually liked her before she left. Not only did we lose her but also the two main double lung transplant surgeons of the hospital. Now we are given a transplant coordinator that keeps messing up my husband's prescriptions and actually called my husband, in reply to a message my husband had left, and stated "What did I mess up now?" Okay, I believe in admitting when you are wrong but when you actually make such a statement, it means you are messing up with other patients as well.

I will grant the guy some space given that he is new to the realms of the transplant clinic. I will even go as far as to say that he must be knowledgeable to get such a position. However, any problems with medication are not possible when dealing with a double lung transplant patient. There should be a record of his medications in his profile that the new transplant coordinator can just read off and order. So, it begs to question, why does he keep getting the prescriptions wrong??