Celebrating two years

My two-year lungiversary went by with little fanfare, much to my dismay. The only ones to acknowledge it were those within my household. But, that is because I have declared it an official holiday, penciling it on the calendar and announcing it days before. For me it is a second birthday. I'm sure it's a feeling that only fellow transplantees can understand. Silly I suppose. But when cards and greetings didn't roll in, I felt a bit... a bit, well, forgotten. Then I had remind myself that almost dying and getting a transplant was a battle that was how long ago? One year? Great. Two years? Come on. Life goes on. No one wants to have to remember to celebrate ME twice a year. Except for ME.

Thankfully, I had less anxiety this year as I reached the date. I think this is because I now have a relationship with my donor's mother. At this time last year, it bothered me greatly that I didn't have anyone to focus that energy on. I had reached out to the family with a letter through LifeBanc and told them how much I thought of them each and every day, and how much their gift meant to me and my family. I wanted them to know that every single breath I take is because they said yes to organ donation. But, by the time I had my first anniversary I had not heard back.

Eventually, I did hear back and since then, we have exchanged several letters. This communication means so much to me. Even though there are no words powerful enough to express the thanks I feel for this gift, at least his mom knows that this wonderful gift is allowing me to spend more time with my family, and is allowing me to selfishly celebrate two birthdays.

Health-wise I am holding in there. I'm working on getting that room in the ER named after me. Yep, I'm back to my old record of going in once a month with the usual--migraine, vomiting, and dehydration. I don't know why it's happening and wish it would stop. Also, I recently found out the pain in my left ankle I have been walking around with for over two months is tendentious. I did not do anything to it... supposedly the medicines can cause it. I guess I have been getting so used to walking around in pain and not realizing what is normal, or rather the new normal. Basically any time I have had aches and pains the doctors usually tell me the medicines can cause it and then they shrug it off. So with this, I just kept shrugging it off until I couldn't take it any longer. But surprise, now I am hobbling around on a walking boot. I'll see the podiatrist again in a couple of weeks to see what my next step is.

Certainly not the fanfare I was looking for, but I hobbled right along and continued my celebrations throughout the weekend. I look forward to celebrating my real birthday soon enough... and perhaps I won't be hobbling around for that one.

A New Hope

Five weeks ago, I received the call. Cleveland Clinic had lungs for me. A match... finally!

Five weeks ago I was wheeled into the surgical room. Lines were placed and anesthesia was administered. An incision was made down my chest and my sternum cut open to reveal my heart and lungs. I was kept alive on a bypass machine while my heart was stopped and my diseased lungs removed. My new lungs--a precious gift--took their place and I was patched back together, sternum wired shut, and drain tubes placed.

After the surgery my heart protested. It had worked hard keeping me alive, overcompensating for the lost lung function. I spent a week in ICU--over 168 hours--heavily sedated and spending most of it in a lost world of hallucinations with glimpses of the real world around me. (That's the equivalent of watching approximately 70 average feature-length movies.) During that time I was extubated, had problems, and re-intubated. The second time I was extubated I was able to experience breathing with my new lungs for the first time. Shortly after, my doctor removed the cannula from my nose. "You don't need this," he said.

Two weeks ago I had a bronchoscopy and the biopsies revealed no rejection. My donor's lungs are making oxygen for my body and doing a good job. My lower legs have returned to their normal color--they are no longer splotchy purple. I don't feel like I'm suffocating. I was out of control of everything for so long that I feel a little lost... like I am coming back from some other dimension, trying my best to figure out the world I missed.

I now sit, five weeks later, at my computer. At my desk. In my home. Breathing. No oxygen. No IV line in my chest. Despite all the pills and the side effects, it's worth it. The pain is relatively tolerable. I know many friends wish to hear more details. And, those should come with time. But for now...

I have a new hope.

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.

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.

Lung Transplantation

The first human lung transplant took place in 1963 and the recipient of the transplant lived only eighteen days.   For the fifteen years that followed there were multiple attempts at performing lung transplants and they failed because of rejection and healing difficulties. However, in the 1980s, a powerful immunosuppressant called cyclosporin, was introduced and other techniques to aid in healing were devised. This enabled the first successful single lung transplant to take place in 1986 at the University of Toronto.

What took twenty-three years to devise has evolved into a procedure that is done about 1,800 times annually in the United States. Statistics of survival rates up to the third year vary depending on the transplant center. For example, the two closest centers to me are the Cleveland Clinic and University of Michigan. The University of Michigan performs about twenty to forty lung transplants a year and have a 90-percent survival rate for the first year while the Cleveland Clinic did 108 lung transplants in 2011 and have a little over an 80-percent survival rate for the first year. However, the Cleveland Clinic is considered an "aggressive, high-risk center" and will take patients over the age of 65, while the University of Michigan will not. So, these conditions must be considered when looking at the numbers.

The median survival rate for double-lung recipients is 6.6 years. Approximately six and a half years. Yes, there are double-lung recipients who live ten years, and some live longer, but it's rare. "Nationwide, only a third of patients live 10 years."

A little over two years is what singer Charity Sunshine Tillemann-Dick got out of her first set of donated lungs. She was on intravenous medicines as early as 2006 for idiopathic pulmonary hypertension and received a double-lung transplant at the Cleveland Clinic in September 2009. By November 2011 she was bed-ridden with an infection and by late December she was back at the Cleveland Clinic. She slipped in and out of consciousness until January 24th, when she was matched with her second set of donated lungs. A year after her first transplant she told her compelling story of being a double-lung recipient on TED talk. She exhibits such a strong spirit and I hope the new lungs work well for her..