The List

I'm part of a support group of over 1,400 people who are in different stages of lung transplantation. While a handful are caregivers or spouses, most are either waiting for lungs or have had a lung transplant. Last night, after spending some time on the support group page, I realized that in my last post, I may have made it sound like transplantation was an easy decision. I want to clarify... it isn't. It's terrifying. But, when the other option is death, it makes it seem easier. I also want to point out how fortunate I am to have the opportunity to make that decision because it's not offered to everyone who needs a transplant. There are plenty of people on the support group who are struggling to get listed.

Getting on the list is a chore and a privilege. Organs are in great need and approximately eighteen people on the list die each day waiting. These are people who were chosen to be good candidates and have completed all of the tests required to be able to be listed. That doesn't include the people who have been turned down, or are struggling to get listed by changing their lifestyle, their habits, trying to gain weight or lose weight, fix dental problems, etc.

Each transplant center is different. I can only tell you my experience, based on my doctors and my center. My center won't list one until they are close to death. But, they also know they have to list one before they are too ill. They have gotten pretty good at determining this window of opportunity. And, this is my window of opportunity. I'm sick enough to be listed but well enough to survive surgery.

Knowing I'd need a transplant, we started with the prerequisite checklist at a slow pace and worked our way through it... ticking off each test or requirement. One by one--lots and lots of blood-work; regular pulmonary testing; dental clearance; allergy testing; tissue typing; updated vaccines including the entire Hepatitis A and B series; updated and current annual exams; bone density scans; heart cath; and tests like gastric emptying, which involved a series of scans after eating radioactive eggs. (Ick!) They also require a psychological evaluation. The tests are daunting and the older one is, the more tests seem to be required. And, if, like in my case with allergies, if one test has some irregularities, there are additional tests scheduled to rule out other things. And, of course, the checklist includes approval from the insurance or some other guarantee that they will be getting money for all of this.

Once these requirements are met, one's case is discussed by all the doctors, the surgeons, and the social worker. At that point, if it is determined one will be a good candidate, a Lung Allocation Score is assigned and one's information is sent in for the list. All of one's information is entered into a database so that when an organ becomes available, the database is searched for the best matches.

Matches are based on several things--blood type, antigens, antibodies, proximity to regional center, body size and more. There is no guarantee. For some individuals, matches are harder to find. Even if one is first in line for an organ at their center or region, if the organ doesn't match well, it will be offered to the next in line... someone who is a better match. It's a system that assures people will get the best new start with a recycled organ.

It all seems complex, but it's a system that works as well as it can with a shortage of organs. It doesn't have to be this way. If more people were aware of the impact of organ donation, those eighteen people would not be dying each day. Instead, they would be given an opportunity to live longer, to be with their children, their grandchildren, their spouses. A mother and father would cry with happiness, friends would rejoice, and a community would be overjoyed. Someone, someone like me, would breathe again. She would be able to be a mom and wife again. She would be most grateful to her donor for that final gift of love... the last gift any person can give.

Let's talk about organ donation.

As of right now, according to the OPTN's transplant information database there are 118,646 people waiting for organs. There are 1,662 people waiting for lungs. And, I'm not even actively listed yet. (I'm almost done with preliminary testing. I'm about 90% of the way through the checklist.)

Today approximately 18 people will die waiting for a transplant.

If you haven't, I encourage you to register to be an organ donor. And, don't stop there. Discuss it with your family--children and parents--and anyone close to you. Make sure they know what you want them to do and encourage them to carry out your wishes. There are times a donor's wishes are not carried out by the family because they are too distraught at the time of death, or they just didn't know what their loved one wanted.

The Sarah Murnaghan case has brought a lot of attention, both good and bad, to organ donation. It's all over the news and a lot of people have voiced their opinions. I heard a story recently about a mother who went with her 16 year old son to get his drivers license. She wouldn't let them mark organ donor on the card because she didn't want to think about her child ever dying.

No one likes to think about it but it happens. But maybe we should think about it. Maybe it would make people get up in the morning singing praises rather than grumbling. Maybe people would be more kind on the road because they want fewer accidents. Maybe we'd have more terminally ill patients being able to make amends at the end of their life...

Maybe.

Talking about death in this society has become somewhat of a taboo. I've discovered a lot of people prefer not to talk about. Some ignore it. They fear discussing it will somehow summon or hasten death. I've heard stories of families who avoided talking about a family member's illness. Somehow they went on believing everything would work out and avoided telling the kids until the last moment. And then, when death came, everyone was bitter because they didn't make those last days count. They didn't prepare. They didn't know what the deceased would have liked.

They didn't talk about it.

Talk about it NOW because we will all face death. We just don't know when our time will be up. Tomorrow is not guaranteed. Someone, somewhere, right now, is faced with a loss and a decision that could bring hope to so many families. One deceased donor can save up to eight lives through organ donation. They can also provide up to 100 people with corneas, skin, bones, veins, tendons, ligaments, and more through tissue donation.

In just the time it took to write this blog post, eight people disappeared off the transplant list, three of them were waiting for lungs. Did they die or did they get their lungs? Did someone, dealing with a devastating loss, say yes or no?

A system...

I think everyone has heard about the ten year old girl, Sarah Murnaghan, in Pennsylvania, who needs a lung transplant. Yesterday a judge ordered the Organ Procurement and Transplantation Network System to suspend their under-12 rule for Sarah.

This case has brought a lot of attention to organ donation and how organs are distributed. And over the past few days I've seen numerous comments from people who are not very well educated about the subject of organ donation.

This needs to change.

I need a double-lung transplant and I am learning much more than most anyone needs to know. I don't know what the ramifications of this case will be concerning the future of organ transplantation. But I do know that the system was overhauled in 2005 to increase the effectiveness of allocating organs and I'm told it has been successful at procuring more organs and reducing the amount of people dying waiting for organs. Perhaps this will be a good time for the organization to re-evaluate things and make sure the system is still running smoothly.

Perhaps this is also a good time to talk about an underlying issue here. And that is, despite children under twelve dying every day who could potentially be donors, their families are not agreeing to organ donation. Only 20 deceased lung donors in 2012 were under the age of 10.

Statistically no child should die waiting for an organ.

A healing heart...

I returned Thursday night after two days of testing at the Cleveland Clinic. I'm still gong through the necessary steps for the lung transplant listing, and had several tests and blood-work done. The poking was never-ending. Every time a nurse, therapist, or doctor turned the corner, she/he was ready with some form of needle. I had blood draws from both arms, a blood draw from the wrist, a small series of injections on my upper arm for allergy testing, and the Hepatitis A and B vaccine in the other upper arm. I can be thankful though that everyone I encountered was pretty good with their aim. And, I got my favorite phlebotomist for the main blood-draw that required several vials. My husband saw her in action and commented later that it was like watching a magic trick. One minute she had the needle in her hand and the next it was in my arm and blood was coming down into the tube. This girl is good.

The two different blood draws at the same time is something that was implemented after an error in blood typing took place at Duke University about ten years ago. So now, in order to double-check and confirm a recipient's blood type, they have two different people draw one's blood. Two people armed with needles and two different pokes. Thanks a lot Duke University. I've had my blood typing done a couple times before and I am happy to report it has not changed. I'm still the same type I was a couple months ago... and the same type I was years ago. No surprise there. So, there should be no mistakes in that department, right?

The heart can be a resilient organ. And, if healthy otherwise, and treated well, it can bounce back from stress and trauma. And my heart, I'm happy to announce, showed a tiny bit of improvement. And, even though it was a tiny bit, I was happy. I have been told that, in my condition, as long as things are not getting worse, it's good. The heart is still working hard, still has a bit of fluid around it, and the the right side is still dilated. But testing reveals it's not working as hard as it was.

The diseased lungs appear to have responded well enough to the Flolan treatment. The Flolan dilates blood vessels and is very risky. It's an extremely powerful drug that is administered through IV tubing that runs to a port in my chest--a direct line to my heart. It is dispensed through a pump that I wear around my waist and the medicine cartridge must be kept cold--sandwiched between ice packs--at all times.

But drugs are stupid. Flolan doesn't just dilate blood vessels in the lungs. It dilates blood vessels everywhere. So, some of the side effects I have to live with include leg pain, jaw pain, and headaches. But, it's keeping me stable and that's the important thing.

I am still at a fairly low dose of Flolan, so we are going to try raising it again each week in very small increments now that my body has had some time to get used to it. When we attempted to raise it after returning from the hospital I didn't do well. The side effects overwhelmed me and my blood pressure dropped significantly. I was miserable for days. The doctor had me drop back down to the previous dose and I felt better. It's not unusual to feel awful the first couple days after increasing Flolan, but side effects should always return to a tolerable level and one should not experience a significant drop in oxygen saturation, blood pressure, or experience trouble breathing.

The lungs are not so resilient and a transplant is in my future. We know that things can change at any time. So, the social worker says it's time to think about fund-raising because we will need help. The transplant surgery is extremely expensive, even with insurance. And, the medications needed afterwards are expensive. There are other costs, too. There's the hospital stay, the after transplant care, lodging, travel expenses, food, etc. It feels uncomfortable to put this need out there but we cannot get through this alone.

There are non-profit organizations that hold donated funds for transplant patients and the social worker gave us information for a couple organizations to consider. I struggle with this. I never intended to be a financial burden on my family. We had always hoped to pay off the house and the student loans and help our daughter get through college when the time comes. We've always lived within our means and budgeted trips and larger purchases, avoiding the all powerful credit card trap. But this illness has ruined all of that planning. We now owe thousands in medical care. We are still paying on medical care I received last year. And, the bills continue to roll in, adding to the ever mounting debt and stress. So, even though I struggle with this, I know I must, for the sake of my family, be open to this type of help.

Speaking of help... April is National Donate Life Month. If you want to learn more about organ and tissue donation, visit the Donate Life website. Donate Life is also on Facebook.