Five months

That injection I mentioned last month? I've been having to do them weekly. And my body does not like them at all. The first one put me in the ER. It triggered one of the worst migraines I've ever had. I was crying, writhing in pain, and begging for relief. Of course it came with nauseousness, vomiting, vomiting, and more vomiting. Did I mention the vomiting? I tried to self medicate but the migraine and vomiting got worse and worse until I could do no more for myself. Again, I was hydrated and medicated at the hospital and sent home.

A few days after that ER visit was one of my routine treks to Cleveland. I had the usual tests--labwork, x-rays, spirometry--and doctor visits. I also had a Bravo prob inserted in my esophagus since the Ph probe testing failed at the last visit. I had had a migraine all day and after the sedation wore off it felt like I woke up with a jolt. A jolt from the gut to be exact. I was in such pain and was vomiting. (Nothing new there, eh?) They rushed me to the ER at the clinic where they treated me with what they called a migraine cocktail. That was the day I had my first ambulance ride ever. Ironic, isn't it? Even though I was at the Clinic, the place is so huge that taking the ambulance was faster.

So that brings us to five months post transplant. Five months! I hate to complain knowing full well what the alternative is. But truly, it has not been the easiest thing. The road in these woods is not the smoothest. In fact, it feels more like an uneven goat path than a road. In the four months I have been home I've had three return trips to the clinic, two of which included bronchoscopies, an endoscopy (the Bravo probe results were fine), and a trip to the ER; two additional trips to the ER at a local hospital; routine bloodwork about every week; a follow-up with our family practitioner; several injections; and a visit to the gynecologist, eye doctor, and dentist (like any compliant patient should do post-transplant). Considering all of that and the time it takes to organize my pill box (and the orders), and filling out my daily health log that consists of vitals--blood pressure, heart rate, weight, temperature--and spirometry readings, I spend a lot of time trying to keep these new lungs safe. And every poke, prod, and pain reminds me that I'm living on borrowed time. I admit... I get weary. I'm always plagued with side effects from the medicines and I deal with the anxiety that comes with living a life of impermanence.

I recently completed my letter for the donor family and will take it with me to my next appointment. (It will go through a third-party system until both parties have agreed upon open communication.) It took me several tries to finish it. This is actually my third version, totally revised and edited down to ten sentences. In ten sentences I expressed my gratitude for their gift. And, I clearly spelled out what I hope for... for them to contact me. Initially I wrote long letters. And then I read them and re-read them. I moved paragraphs around and changed words. I deleted stuff and added stuff and cried and re-read and started anew. How do I express a lifetime worth of thanks? In ten sentences. Perhaps less is truly more because honestly, I cannot find a word more meaningful than thanks when I have received such a remarkable gift.

Five months. The surprises, both good... and not so good, continue. I'll check in here once I get a little further down the road. Meanwhile I will continue to do my best and will keep following the goat...

A new year...

A year ago I received a diagnosis that changed just about everything in my life. A terminal illness that would take me down in a short time. My only hope--a lung transplant.

I'm still here. This is good. And, I'm still at home. Also good. A year ago I was in ICU and doctors were not sure how my body would react on the strong IV medication they were administering. Fortunately I did okay, and the medicine provided me several months to work my way through the testing needed for transplant.

I had some routine testing on Thursday at the clinic and saw my doctors. Testing revealed my breathing is worse, my oxygen saturation levels are lower, and my already failing heart is working harder. For the best recovery after surgery, I need to stay as strong and healthy as I can within my limitations. I also have to avoid sickness and infections of any sort because they could potentially make me lose my chance for surgery if lungs became available. There is no wiggle room. Any little thing could send me to the hospital and that is not where I want to be. At least not for those reasons.

I know many of you are standing by me, cheering me on. I totally appreciate it. I know it must get tiresome for some to keep making exceptions for me. I can tell some are getting tired of the wait and tired of me and I don't blame them. I'm tired of everything--the sickness, the exceptions, the waiting, the testing, and the difficulties. I feel like the last two years have been stolen from me. And in the last year, it seems more like I've just existed rather than lived. I'm on the sidelines... and it sucks.

I was ready to ring in the new year with new lungs. It didn't happen. But, I'm thinking 2014 is full of hope and potential. And, soon we will have a whole new reason to celebrate.

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.

I cringe when I see a swan.

Almost two weeks ago I had another right heart catheterization. Other than some minor pain and a nasty rash breaking out all over my neck (probably from the chemical prep), I got through it fine without sedatives. And, if I have to find something good to say... I will admit, it was better than January's right heart catheterization.

In January, the Swan-Ganz catheter was left in my neck for several days. Now I cringe any time I see a swan, or even hear the word swan, despite it being named after the doctors that invented it. I've included a photo of that nasty device here. It is through a large yellow trumpet-like part that goes in the neck's jugular vein (and is not pictured) that several lumens, each with a different function, are threaded. The main yellow line you see, partly covered by a plastic sheath, is the line that ran from my neck, down the vein, through my heart, and up through my pulmonary artery. That is the line remained inside my heart for several days when I was in the MICU. All the rest of those tubes and such hung to the side of my neck.

The test showed that my pulmonary pressures were down a bit. This proved the medicines have helped to relax my heart. However, the following week I had additional pulmonary testing that revealed my breathing is getting worse. It's harder for me to breathe and my lungs are not doing their job getting enough oxygen into my blood. But, this is the expected course of the PVOD and was not a surprise.

What was a surprise, however, is that the doctors have run across a reason for additional testing. My heart sank. I had hoped we were done and I would be officially listed. They ran some more lab-work while I was there and I'm expecting to go back in a couple weeks for additional testing. I won't go into details now, but let's hope it's just a little hurdle.

Hickman

Today is the placement of the Hickman cath. Hopefully. It will be placed in my chest so that the IV med can be distributed. For now it has been in my neck from where they did the heart cath. Mostly I've spent the last few days riding out the effects of the medication as it is raised to a higher dosage slowly. Yesterday I experienced a bigger headache, more flushing, and some leg and jaw pain. But, it eventually dissapated. The good thing with the Hickman is I will get out of the ICU, into a regular room, and have more mobility and privacy.

Everyone wants more details and it is really hard to give too much at this point. We know, left untreated I won't have much time left. We won't know how much the meds are helping until about two months down the road. I will be continuing the therapy, raising the dosage about once a week at home. At that time I will have some tests to see if the meds have helped stabilize the lungs, perhaps letting the right ventricle of the heart become stronger. That is what we really want to see because I could stay on the meds and have a few good years with a lifestyle change. If not I will be reevaluated on my placement on the transplant list.

Then we get to the transplant part. I started the tests and evaluations required. Of course they want to make sure the person receiving new lungs will be able to support the new lungs--both physically and mentally. For now I'm still being considered and then will be placed accordingly, depending on how I am doing on the meds and all these other tests. From what I understand, if I'm approved and don't do well then there is a chance to move up. But, as with the meds, we still have to wait and take it one day at a time. The double-lung transplant is a risky surgery and doesn't have the best outcomes for lengthening one's life. (Maybe I'll post those statistics at a later time.) But when you don't have a choice, it may be the only shot you have available.

I cannot express how wonderful everyone has been. My mother-in-law has been an angel, providing me so much comfort. Friends have banded together to help teach my daughter and providing food for my family. A lot of you have asked how to help and what we can do to prepare for the future. I think we will be needing a lot of help so ideas are welcome.

Tubes and wires...

Heart cath went fine this morning. Not the most pleasant experience but in the scheme of things... well... you can understand. What they found confirmed all they suspected so far, so the port was left in my neck and out of it runs all sorts of tubes, ports, etc. They started the Flolan at a very low dose this afternoon through the port. Tomorrow they will try increasing it. It seems that every time someone comes into the room they are coming at me with something to attach, draw, or poke me with. Much to my dismay, I have to have shots in my stomach twice a day as a standard protocol for bed-ridden patients in order to prevent blood clots.

I'm supposed to be moved to another room so I really cannot get comfortable. I have a family member with me and have been grateful for her help and support. With as bad as it already seems, the day would have been a whole lot worse without her here.

The transplant team is supposed to start their testing and evaluations this week. Supposedly they have to pick out the best candidates to receive new lungs. There's a lot involved, including your immune system, your age, your overall health both physically and mentally, and even the support team behind a patient. So, keep rallying the troops!