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...

Step down

I made it to the step down floor yesterday morning about 3 a.m. What a relief. Bigger, more quiet, a bathroom with a SHOWER, more freedom, and no more heparin shots. I was able to get in the shower yesterday after almost a week in the ICU unit. I got to take a walk from one end of the hall to the lounge area with my husband. We found a banana in one of the patient/family kitchen nooks and I hid it away for this morning. For some reason bananas are a hot commodity. For breakfast they offer peaches and pears but they come in sealed plastic cups full of heavy syrup. I keep having issues with low potassium so I'm concerned about getting enough. At home I usually have coconut water mixed with orange juice in the morning. I can at least hunt down orange juice here. But I also worry about blood sugar spikes since they monitor EVERYTHING that goes in and OUT. They will happily give me pills and medicine for anything that needs it, but I'd rather let my body try to work that out with some natural food. Natural food around here seems to be an unusual thing.

The Hickman was not as traumatic as I was imagining. Everyone told me the hearth cath was nothing to worry about but they just numbed the area and started cutting into the jugular vein. Isn't that enough to make someone scared? I suppose if it was over and out, it would be different but they placed what is called a Swan-Ganz in my neck. The tube remained in my pulmonary artery, up through the heart and out my neck for a couple days while they monitored the pressure inside. Anyway, I thought it was traumatic. Much to my relief they gave me something to make me groggy when the Hickman was placed. I remember the doctor talking to me about Tony Packo's and the bridge in Toledo but don't remember much until I was back under the care of my nurse. They said I was upset with the Novocaine shots in my chest and they upped it. I don't remember but that sounds like me so I believe them. I was itchy after the surgery so they gave me Benadryl through the IV, probably contributing to my already drunken state.

They are upping the meds today and I am hoping to have some progress concerning me going home soon. They say I need to talk to this person and this person, so on and so forth, but everything has to be ordered and reviewed and faxed to Santa's workshop and back so it takes forever. Okay, I'm kidding about the Santa part but that's what it feels like.

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!