After Your Transplant (Infection & Rejection)

After your transplant, you will be on anti-rejection medications for the rest of your life. The purpose of these medications is to prevent your body from rejecting your new organ(s). Even though these medications prevent rejection of your organ(s), they also increase your risk of infections. It is important that you understand that these medications have many side effects. Some potential side effects may include . . . [more]

Getting Ready for Your Transplant

After your name has been placed on the list, you will need to be seen every two to three months in the Transplant Clinic. At these visits, you will meet with your lung transplant coordinator, therapists (respiratory or other) and a doctor from the transplant team. You may also have a 6-minute walk test, pulmonary function tests, a chest x-ray, lab tests and other necessary tests.
While you are waiting for your transplant it's important to take good care of yourself and keep your body in shape. You will need to participate in a cardiac . . .

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Getting on the Transplant List

United Network for Organ Sharing (UNOS) is a national organ sharing organization that helps to match organ donors with those who need an organ transplant. The donor's blood type, weight, and organ sizes are placed into the UNOS computer.
[Read Full Article Here]

Your Lung Transplant Evaluation

Your local doctor or pulmonologist has referred you to a transplant hospital program. You will first speak with a cardiopulmonary transplant coordinator who will answer questions you may have regarding transplantation. After receiving your medical records and checking with your insurance company to be sure you have coverage, your coordinator will present your information at the transplant team meeting. If you meet the criteria and the transplant team feels transplantation will be of benefit to you, your coordinator will schedule a visit with a doctor from the transplant team. The purpose of this first visit is to discuss lung transplantation as an option for treating your lung disease. It is very important to bring along a support person(s). if you and your doctor decided a lung transplant would benefit you, an evaluation would be scheduled. This will occur at the transplant hospital or at a local center near your home, depending on your insurance coverage.

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Anxiety Relief

Shortly after my other post of the day (stating Greg was having lower back pain), Greg called to me and said it was time to go to the hospital. He was in so much pain that he could not even stay still. I immediately got my stuff and headed to the local hospital emergency room.

The drive was no easy. Greg was in so much pain that he kept moving in his seat. His face was a mangle of pain, desperation, and fear. I kept looking at him and talking to him - telling him he was going to be okay and they have some wonderful pain medications at the hospital to take it all away. Every time I looked at him, he was in a different position, taking off his seat belt, putting it back on, and a few times he even looked like he was trying to climb out of the window.

As soon as we got to the ER, I left my car, put him in a wheel chair and got him right in. We were met with smiling faces that were connected to bodies that took their sweet time to move or walk towards us. I had to even laugh as one nurse said to me in a hushed voice and not even looking at Greg: "Why is his wearing a mask?" It was as it she either thought he was deaf or that there was no mouth from which to answer her beneath the mask. I explained that he was a double lung transplant recipient and she smiled, nodded, and walked away. Gee - we weren't expecting the "plague" reaction.

Finally we were seen and after a while they asked him for all the necessary "samples" (e.g. blood, urine, etc.). As I walked to the bathroom with him, the pain was getting better. By the time we were heading back the room, the pain was fully gone. As it turns out, he had quite a bit of blood in his urine but no infection. The culprit? A nasty kidney stone, which is normal for post transplant patients. We made a few appointments for urology and headed out of the hospital - together and pain free. Ironically, this is the first time we entered the ER together and left together without him having to be admitted. Life is good.

Back Pain and Downhill Spiral?

Even though you try and prepare yourself for the downhill spiral of an illness, sometimes you are ill-equipped. Take, for instance, my husband. Yesterday, he was working happily on his rec-room bathroom. This morning was when the downhill spiral seemed to dip even further down and at a very high speed.

Greg awoke this morning to very bad lower back pains. Now, for those that don't know, Greg woke up one morning back in 2002 with the same pain and within days, he was on a ventilator and fighting for his life. Needless to say, my heart always drops down to my toes whenever he starts to complain about back pain; even with his new lungs.

Immediately, he took his temperature and we allowed ourselves to breathe once more when it read 97.7 degrees F. He then took 2 Tylenol and laid down on the couch. Now the fun began as he couldn't get comfortable and started to have a major coughing fit. My heart skipped a beat as I watched him hobble over to the kitchen sink and empty his stomach into the sink basin. Even our dogs knew something was wrong and tried to fight against me to get to him as he continued to get sick. After 5 minutes of this, he turned and headed back to the couch, where he has been ever since.

Lucky for us, Greg had not yet taken his transplant medications so those were not lost to the sink episode. He is waiting a bit now to do his lung function test (spirometry) at home until his stomach has calmed down enough and the pain starts to lessen. Since he did not lose his transplant medications and he has no fever, we are not running to the hospital at this time. However, if his lung function tests turn out to have dropped and he continues to be in this much pain, we will have no choice but to make the dreaded trip to see the folks in the white coats. Let's pray it doesn't come to that.

Why You Need a Lung Transplant

People needing a lung transplant have lung problems that are getting worse despite medical treatment. The main reason you are being considered for a transplant is because your lung disease has progressed so that medication or surgery can no longer improve it. Transplantation may offer you the potential of living an independent, normal, and active life.

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History of Lung Transplantation

Normal lungs are very elastic and spongy organs that sit under your ribs. Each lung is divided into lobes. The right lung has 3 lobes and the left has two lobes. When you breathe in (inhale) you take air into your lungs. THe oxygen in the air is passed into your blood and carried through your body. The carbon dioxide in your blood is passed into the lungs. When you breathe out (exhale) the carbon dioxide is carried away.

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Post Transplant Sympathies

I received an email earlier this week from a long-time friend who is a nurse down south. He mentioned about this couple that he met in the step-down unit at his hospital and how the husband now needed a lung transplant due to lung fibrosis. Due to the state of this man's condition, the hospital down there has decided to have his transplant take place in Madison, Wisconsin. The wife, understandably distraught, had so many questions and no means to find answers. That was when my friend asked for her phone number and kindly sent me an email, asking that I call this woman to help. Of course, I was more than willing.

During my conversation with this woman last night, I had realized once again how far we have come. My mind was going through 4+ years of pre and post transplant daily life and when I heard her husband cough in the background, I was once again forced to remember that we were not very much different than this couple at one time. Greg had never been on 10 Liters of oxygen like this woman's husband, but he had been on a ventilator for 8 months and waited so long for his miracle. This man's coughing shook something in me because for over 9 years, Greg's cough was part of our lives. The hacking cough he would have in the morning, turning his face red and all distorted, to the crackling and wheezing his lungs would do when he was trying to take even the smallest of breaths.

Sure, the old lungs have long since been detached from my wonderful husband and the new lungs have been nothing short of a miracle. I just hope and pray that this woman and her husband are able to partake in the same wonderful miracle of a second chance of life and soon leave the coughing fits behind.

Anniversary and Stent Update

Yesterday was our 7th wedding anniversary and it was ironic that we both gave cards that stated similar feelings. Sure, we have had our good and bad times, our moments of weakness and strength, and together we weathered the storm and came out stronger and more in love than ever. That about sums up our feelings for each other after 11 years of being together, 7 years of marriage, 3.5 years of waiting for his miracle lung transplant, 2 years of extreme illness, and 5 dry runs before finally realizing the miracle that saved his life. They say what doesn't kill you, makes you stronger, and we are true believers of that now. We have been humbled by our lives and remind ourselves daily that each day is a gift and should be celebrated!

To top it off, the transplant hospital called Greg to update him on how they would like to proceed with his stent removal. Shortly after his transplant, the right airway was starting to close up and they placed a stent to keep it open and allow it to heal properly. The doctor's had recommended that he continue an inhaled daily Pulmozyme treatment in order to make sure the stent stays clear of any debris. Yesterday they told him that they are so impressed with his lung functions that they have decided to keep the stent indefinitely (or until it gives him any problems). Unfortunately, that means that Greg will have to stay on his last inhaled nebulizer but, on the great side, he is doing fabulous!! Needless to say, we can't be upset given that he is too healthy to have outpatient surgery! Small miracles may be small but they are miracles nonetheless!

Help Raise Awareness!

$1 Donated from Every Product Purchased!

There are hundreds of tissue and organ donation awareness organizations across the United States that need help in raising awareness for this important cause. Every day, 17 people die waiting for a life-saving organ transplant. These people are just waiting for a second chance at life and we want to help. That is why Angel Cove donates $1 from every product purchased through our store to the Wisconsin Donor Network.

There are so many organizations out there ready to help patients and families who are waiting for this gift of life and have chosen to raise funds for our local organ procurement center as our way of saying "thank you" for our own miracle of a double lung transplant.

The Wisconsin Donor Network is the federally designated organ procurement organization supporting the transplant community in eastern Wisconsin. Guided by an advisory board consisting of members drawn from the community and affiliated transplant centers, the network is located in Milwaukee, Wisconsin, and serves 2.2 million people in a 10-county region, including Door, Kenosha, Manitowoc, Milwaukee, Ozaukee, Racine, Sheboygan, Walworth, Washington, and Waukesha counties.

The Wisconsin Donor Network is also affiliated with the 45 acute-care hospitals in eastern Wisconsin, the transplant programs at Children’s Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital and St. Luke’s Medical Center, as well as the Wisconsin Lion’s Eye Bank and the Wisconsin Tissue Bank.

In addition to recovering organs for transplant, the Wisconsin Donor Network also provides public and professional education about the tremendous need for organ and tissue donors. It is the region’s primary, most current source of information regarding organ/tissue donation and transplantation.

They are a member of the Association of Organ Procurement Organizations, Coalition on Donation, the United Network for Organ Sharing, and the Wisconsin Coalition on Donation.

For more information about the Wisconsin Donor Network:

Wisconsin Donor Network
9200 W. Wisconsin
Milwaukee, WI 53226
414-805-2024
1-800-432-5405
Website
E-mail

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