Passing of time

I was surprised when a friend mentioned my long absence from this blog. So few people check it now for updates. Very few seem concerned with my trips to Cleveland and so much time has passed they’ve forgotten I’m still not out of the woods.

Several months have passed since I last posted. Since my last post several people in my support group have died, including my friend Janet from pulmonary rehab and Craig, who got his transplant only a couple months after I got mine. Their deaths forced me to reflect on the horrors transplant patients face. Many transplant recipients seem to possess an essence—a deep quality that is never afraid to take life by the horns. I think it may have something to do with being swept out of the arms of death and having that second chance. So it really sucks when these wonderful people fight with everything they’ve got for their second chance and then they die. Five years later. Three years later. Eighteen months later. One year later. Five months later. It’s never fair.

As I approach my fourth year anniversary I struggle with several health issues due to the surgeries and immunosuppressant medications, but I continue to be happy simply because I have escaped death. As I get closer to the four year mark, my transplant friends continue to die, and my body continues to hurt and fail me in little annoying ways. I am now in stage three chronic kidney disease, have joint pain, IBS, chronic migraines, and osteopenia. But I try not to complain. With all the hurt in the world right now, I always feel like I shouldn’t overshare my problems. I just continue to do what I can to reduce my risks on a daily basis, like wearing masks out in public and constant hand washing. I take my medications and listen to my body.

Each day I hold onto the hope that I will outlive the statistics. I am thankful for my donor and his family who gave me his lungs and the team who works so hard to keep me alive. Thank you to those who continue to walk beside me through it all. You are the best of friends.

Thankfulness

Thankfulness is being blessed with a donor, a family who said yes in the midst of their grief. Thankfulness was being under the care of skilled hands of great surgeons and doctors and nurses. Thankfulness is having the support of a wonderful family and friends and even complete strangers who reached out to offer help when I needed it most. Thankfulness is reaching milestones, like another birthday and another Mother's Day. Thankfulness is doing my own shopping and cooking again. To climb the stairs in my home. To drive. To walk. To visit friends. To do what I missed out on. To breathe. Thankfulness is having this opportunity to be here for another Thanksgiving and hope for many more. Love to all this holiday season. Remember what matters. Life is short. Lend a hand, mend fences, have fun, and don't sweat the small stuff.

Six months and beyond

It is actually closer to the seventh month mark but we were checking out some other issues and that set us a little further behind... or ahead, depending on how you look at it. I went to Cleveland with a lot of anxiety since quite honestly, I had not been feeling all that well the last couple of months. But, I have good news. No rejection.

I saw a hematologist about the blood issues and for now I am on a wait and see what happens basis. They may take me off the Valcyte at the one year mark but for now they won't chance that. So, I must continue the Neupogen injections. So, until then, I will have to suffer through the side effects and I will just have to deal with them the best I can. They made a few adjustments to my medicines and will continue to do so as needed. The whole thing is a delicate balance. I'm already at half of the suggested dose of Valcyte. My donor was positive for CMV, while I was negative. Take the Valcyte away and I'm at risk for infection. Being that I'm immuno-suppressed, getting any infection is bad. Of course, it can be treated... but, my body is not very strong right now. It all makes me nervous.

The migraine treatment is not going as well as I had hoped. Thankfully I am staying out of the ER. But, I haven't had any luck weaning off the triptans. The preventative has not kicked in yet even though I am now at the full dose. I'm still waiting for another miracle. The insurance company constantly fights me about the dosage of the triptans, so I would really like something to happen soon. I'm afraid that one of these days I may not have enough medication. I had a pharmacist tell me I may need to "white knuckle it through a few days." Obviously he has never had a migraine. Sure. Try vomiting for 24 hours straight and not be able to take your life-saving anti-rejection medications. Then talk to me about white knuckles.

I was on a mission this trip to Cleveland and with help from a couple of friends I was able to pull it off. Thankfully we didn't run into any problems with traffic or weather or have any extra long tests, procedures, or ER trips beyond some additional bloodwork. In all of my trips to Cleveland I had always been too sick and too hurried to see or do anything. I had never been anywhere other than to the clinic or the hotel. I knew about all the great places in Cleveland but my adventures included stepping out a few times to buy slippers at a department store and to the pharmacy to pick up prescriptions. But this time changed all that.

First thing on our to-do list: we went shopping. We picked up a bag of toys for the Cleveland Clinic Children's Hospital in memory of our dear friend who died last year. We also put together a a bag of snack items for families staying at the Ronald McDonald House in Cleveland. We delivered the items when I was finished with my appointments.

Then we visited the Rock and Roll Hall of Fame. We walked halls of memorabilia taking us through a timeline of history from the birth of rock through the present day. It was interesting seeing stage costumes, props, and instruments of the legends. I will have to admit that after comparing the 1980s heavy metal case, the music of our formative years, with all the other decades, I am surprised we turned out okay.

I lost more than two years of my life. I am still picking up the pieces. It is still harder for me to do normal things and it takes longer for me to do anything. I lost a lot of muscle strength while I was ill. I am doing pulmonary rehab and working on some strength training and cardio with supervision. But with the injections I still have a lot of joint and bone pain so I am limited. It is expected. I have weird side effects from the meds. I deal with tremors, some neuropathy, tingling, headaches, aches, moods. It is the new me. I cannot do what I used to do. I feel different. I have to be different obviously because of various things. It is okay. It is better than the alternative. It is not easy. But, I am okay with that.

This week was amazing. It was on a roller coaster of pain and emotion and sheer happiness. I was among the most sick, the healthiest, those in pain, and those who were happy. I was scared and delighted. I smiled, I cried, I laughed with old friends, and laughed with new friends. I was thankful. I came home to my family, with no rejection, again...

Four months

Here I am... now over four months post surgery. Post transplant life has not been without it's little bumps. But, in the scheme of things, everything is manageable so far.

Since I last checked in I had another episode that we are thinking may be my body's new reaction to migraines. Again, it started off with a headache and it worsened through the day. Nausea hit. Then vomiting. I could not keep food or water down, and I could not keep my medicines down. This time I couldn't recover on my own and ended up in the emergency room of a local hospital. They started fluid, pain killers, and anti-nausea medications. A few hours later I was sent home to sleep and followed up with my family doctor the next day. It was disappointing and awful, but I recovered in a few days. Now I have a couple drugs that I can take at the onset of migraines and nausea, in hopes to stay out of the emergency room in the future.

Routine blood work this week indicated my white blood cells are too close to being dangerously low. I'm supposed to get an injection soon that will hopefully, if it works like it should, stimulate my bone marrow into increasing my white blood count. But, I cannot get it until after the holiday weekend because of insurance snafus. (It's always the same thing: specialty drug, prior authorization as being medically necessary, etc.) My doctors have suggested I stay home and limit my exposure to others until I get the injection. So... here I am.

I won't dwell on all of this though. Rather, I'd like to highlight that I have been driving again. I've enjoyed outings with friends and families. I've gone shopping. I've been able to exercise with few limitations. I even went on a short road trip with my daughter and one of my closest friends to visit my father and several other friends along the way. We stopped in Holland, Michigan, to see the tulips in bloom (even though it was raining the whole time) and visited an alligator sanctuary near Kalamazoo. (Don't worry, I wear a mask and I opted out of petting or holding the alligator.) We went to a couple of museums and I ate about a half pound of fudge. I also walked up a relatively significant hill to a lookout site to view Lake Michigan. It was quite a trek for me but probably not significant enough to burn off a half pound of fudge. Oh well, I need a some fat to pinch for all those darn shots and injections anyway. It was the first time in a long time I had been away from home for an extended amount of time without it being a clinic visit. I felt free again.

Even though it may not seem like a lot to some, I still do quite a bit each day. I still have my limitations due to what I lost being sick, the surgery, and the medications, but I'm okay with that. Overall, everything can feel overwhelming at times, and I do have my down days, but it's nice to have the luxury of doing too much again. Yes, here I am. Over four months later... alive and very thankful.

New Journey

I had my six-week follow-up and another bronchoscopy this week. No rejection. How lucky I feel. I'm still sore from surgery and I'm still weak but I get stronger every day. Despite that and the side effects from all the medications, I can do more now than I did this time last year.

I'm still trying to wrap my brain around everything that has happened and is happening to me--the illness, the surgery (and the world I lived  in while sedated and on narcotics in the ICU), the new lungs, my donor, my new life. Honestly, I feel a bit lost. I'm finding my way back to a world I was part of. But everything is different--my life, things around me, what I can and cannot do, my friends and family... and my perspective. Another paradigm shift. This time, so great that I'm overstimulated and overwhelmed.

Since returning home I've spent most afternoons on the phone with mail-order and specialty pharmacies, doctors, insurance companies, etc. We had to switch insurance plans (long story). It's nothing short of a headache trying to to get all the medicines I need for survival. When I'm not on the phone, I take pills. I realize it will get easier and things will resolve. It already feels wonderful--producing the oxygen my body needs--even though I haven't done anything overly significant lately. Oh, but I suppose I have. I survived the greatest battle I've ever faced in my life. And, my friends and family, I could not have done it without your help and to my donor and his family. 

I'll never be out of the woods. I'll always have restrictions of some sort. I'll always be on medicines. My immune system will always be compromised. I'll always have the burden of medical costs. I'll always be tethered to Cleveland Clinic. But that's okay. I've accepted that. So please, my friends, have patience with me as I start this new journey.

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.

A thank you to my team...

Today I want to thank you for being part of my team. Family and friends, you are...

...the ones who slept on uncomfortable chairs in the ICU to stay close to me.
...the one who asked if I had any errands to help with this week. You returned my library books and mailed a package off at the post office. And this isn't the first time. I'm sure without you making yourself available, I would have several piles of stuff left untouched, things to return, and boxes to mail. I appreciate your persistence.
...the one who came over and edged my neglected sidewalks.
...the ones who weeded my garden and helped with the yard.
...the ones who call and ask, "Hey, I'm going to Kroger (or Fresh Market, or wherever); what do you need?" And, you are patient enough to find the right brand and check ingredient lists for potential allergens.
...the ones who have helped me get to and from doctor appointments.
...the ones who have driven my daughter, and me, to school and scouting functions.
...the ones who have helped with fundraisers (hosting events, organizing, doing the leg-work, etc.) and continue to do so.
...the one who has picked up various requests like gluten-free pizza, organic taco shells, and special cheese.
...the ones who have opened their homes to me when I needed a place to stay.
...the ones who have helped with home projects we've been forced to neglect.
...the ones who donate items for the fundraisers.
...the ones who have watched over my daughter when we are unable to do so.
...the one who made several trips up and down my basement stairs carrying boxes of stuff.
...the ones who send checks and make donations.
...the ones who have helped me go on various errands, helping me lug around bags and my heavy oxygen tanks.
...the ones who have placed me and my family on prayer chains.

To all of you... thank you for being part of my team. I appreciate all you do--the financial help, the reminders, the rides, the prayers and good thoughts, and your gift of time. It has been difficult to let others do so much for us and I still feel guilty letting others give so much when I can give so little in return. At times, I'm not entirely certain I sufficiently express my gratitude and a thank you often seems like an inadequate response for all the love my family has received.

But, at this time, it's all I can offer. And, I cannot say it enough...

Thank you.

Family Fun Night

Thank you.

I wish there were more meaningful words to express the thanks I feel my family and friends, and even a handful of people I had never met before, deserve. Family Fun Night was successful and the kids had a blast. There were bounce houses, carnival games with prizes, a silent auction, baked goods, food, and more. I was completely overwhelmed by the attention and the outpouring of love and support my family received.

Thank you, thank you, thank you.

Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.

Ironic

For the past several years I've been focused on healthy living and have avoided most processed foods, GMOs, and chemical additives. I was doing it to stay healthy and avoid problems with food related maladies like heart disease and type II diabetes. I am not a smoker. Never was. I avoid chemicals like synthetic bug sprays and cleaners in my home. And now I have something so rare and so random that is destroying my lungs. It was not preventable and there is no cure. How ironic.

I am trying to cope with this irony. This disease took away my future plans, my independence, my fast stride, my strength, my savings. It took away my ability to work and the chance for others to depend on me. It keeps me from things I once found pleasurable. And I am holding on, trying to grasp as much extra time modern medicine can provide. But, I'm only hindering the inevitable.

No matter how much they love me, friends and family continue on with their daily lives. They must. And, some are even picking up where I left off, taking over things that were once my responsibility. I'm trying my best to accept all of this, but it's hard. I'm envious. And it's the deepest, most pronounced envy I have ever felt. I feel ashamed and am a bit sheepish admitting this because I know that wanting what others have - health - will make me no better.

This disease brought a lot of things into my life, most of which I did not want. When I can push aside the heavy drapes of anger, of envy, and worry, I can look at the blessings this disease has brought into my life. For one thing, I've grown closer to my mother-in-law. We haven't always agreed on how things should be done, but when I needed her, she was there by my side. I've also observed compassion and appreciate all the help from friends - everything from rides to appointments to surprise goodies at my doorstep. In addition, I have a wonderful husband who continues to show his deepest devotion by helping me daily. And, there's my new friend who has a similar, rare form of this disease.

My friend lives about twenty minutes away and visited me on Friday. I cannot even begin to explain how much that visit meant to me. She's fighting this battle too. We are the same age. We are mothers with a terminal illness. We can openly talk to each other in that "I've been there myself" sort of way. We have a lot in common, obviously. But we also HAD a lot in common. Had we met before this disease struck, we would have been instant friends.

I still have those days--those dark, gloomy days--but I tell myself I must remain focused and strong. I'm fortunate because I can count my blessings... especially blessings that came into my life because of this awful disease.

Live it up...

This weekend I had a visit from a childhood friend. It helped. I woke up more confident and focused this morning. She told me I have no choice but to "live it up" from here on out. I promised her I will do so... to the best of my ability.

I know what the statistics say. I know what the odds are. But, I must focus on being on the side with the best outcome and hope the outcome gets better the longer I can hold out. There are always new advancements in medicine and technology and better medications on the horizon. The intravenous epoprostenol I am currently trying wasn't even approved by the FDA until 1995. Since then it has given many patients an opportunity to live longer and for some, has provided the boost needed between diagnosis and a potential lung transplant. And, even though lung transplantation is an extremely complicated surgery with high mortality rates, there are better post-transplant drugs available now.

The weirdest thing is knowing I have a time limit. Sure, anyone can die at any time. Nothing is guaranteed.  But, to know I probably won't make it to see certain milestones is difficult to accept. This morning I read Living with death in the Guardian News, an article about four people sharing their thoughts on living with terminal illness. Holly Webber, who has cancer and was 25 at the time of the article said, "Sometimes I feel like I'm on another planet looking in on this one. I can't relate to people stressing about work.... People are so wound up, but it's such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, "I'm glad that's not me. Maybe I should worry less about the things that don't really matter.""

Like Holly, I am finding it hard to relate to the people around me. When I cruise through Facebook I find so many of my friends and family complaining about stuff that is so trivial. Or, things that seem like a crisis are really insignificant in the context of things. For the most part the wrinkles will fall out with a little time, and their life will go on just the same. People complain about their kids or their spouse... but what happens when they no longer have them in their life? People complain about things needing repaired, but what happens when they no longer have it within their capacity to repair things? People complain about traffic, but what happens when they are no longer able to drive or even manage public transportation on their own? People obsess about looks, clothes, and hair; but what happens when their body is ravaged by medication side effects that makes their hair fall out, their face flushed, causes swelling, and/or rashes on their body? People complain when they have a headache or get a common cold, but those too will pass. And of all things, people complain about getting older. What? Getting older is a privilege denied to some. To grow old... they should be thankful.

Friends and Family

I am so very thankful for my friends and family. It's reassuring to have so many offers of help... everything from rides to food for my family. Even my friends far from here are doing what they can, including sending well wishes and keeping me in their prayers.

This weekend was a whirlwind as we made plans to prepare for my stay in Cleveland. So many calls and emails were left unanswered as we knocked things off our list. The emotions are so raw. My mood ebb and flows through the day. I'm trying to stay focused on the positive but at the same time I just want to scream. Perhaps I'd even have the urge to kick something if my feet were not so swollen and weak.

One of my wonderful friends drove me over last night and her mother, who works at the Clinic, opened her home to me and made sure I got here early for my appointment. What a blessing and how so very kind they are. I cannot thank them enough... my words of appreciation seem so little in comparison. Having always been so independent and strong, it is hard to be at the receiving end. 

In the short time I was home we received two very large dinners and another friend, who makes the most awesome quilts, dropped off one of her treasures to cuddle with. We have several friends stepping up to help with our daughter so that she can still do her studies and be able to stick to her scheduled activities.

A huge thanks to everyone. This is only the beginning... so for those of you insisting on doing something and haven't been called upon yet, you will have plenty of opportunities. I have promised to keep you all updated and involved the best I can. Many of you know me well enough to know how hard it is for me to be this open, to ask for help... and I will struggle with a different level of discretion. Maybe perhaps the universe is telling me it is time to talk about me. After all, someone else may be looking for the answers I'm looking for. I've been searching the Internet to find others who will share their experience with me. I've been reading their stories and their blogs and getting a feel for what's to come. The success stories offer me hope. And I certainly pray that after this struggle, it'll be my story offering someone, somewhere, hope.