Eva Markvoort - 65 Red Roses

It has been a year now since Eva Markvoort lost her life to Cystic Fibrosis. In the days that followed I wanted to write a post, but I found it difficult to write about Eva because of the profound effect it had on me, especially in a time when thousands of others were feeling much like I was. An overwhelming grief and loss had touched so many lives and I couldn't focus on what it was that I wanted to write after reading so many other comments and posts. My words and feelings had somehow blended with everyone else's, and so I chose not to write anything. I wrote for myself and how I was feeling.

During this time, my illness had me looking at my own mortality. Because of this I found myself reading many blogs and becoming fast friends with some wonderful people. Sadly, this online network also made it possible to see the rapid deterioration of some of these people I had made friends with, and over time I found myself reading their blogs written by family members announcing their loved ones were in the hospital and their days were ending.

The first time this happened I cried for days. It was a friend of mine who had passed away from breast cancer only two weeks before Eva. Both of these women had touched my heart in many ways because of the remarkable outlook they had in dealing with their illness. The strength they carried was phenomenally bright in such a dark time. I was moved that they could both reach out and offer hope and give wonderful advice to so many people during a time when they were faced with so much of their own.

The thing about Eva was her desire to educate people about cystic fibrosis and promote organ donation. It was in a sense a passion that drove her, along with her deep love for her family, friends and network community. Eva's legacy continues today. In the last year, fund-raising projects have raised over $200,000 in her behalf toward cystic fibrosis and donation awareness.

I think of this young lady quite often and still read the updates that her family post on her Livejournal blog: 65RedRoses.
Over a year ago Eva brought great inspiration to me. As I struggled with the thoughts of my own mortality, Eva's advocacy for donor awareness helped me understand more about my own disease. I also realized that family and friends and love and God meant more to me than I knew. When you see things slipping away you start to understand the things you sometimes take for granted. It could be the simple act of saying, "I love you," in the morning when you say goodbye to your wife or husband on their way to work, or your children as they go off to school. It may be a "Thank you," to a friend or coworker or stranger.

Eva's post helped me understand how amazing people can become when faced with life-altering events. Thank you for this, Eva, for teaching me to see how much life could have stolen from me if I wasn't looking.

MARKVOORT, Eva Dien Brine

March 31, 1984 - March 27, 2010

What Now?

   Yesterday I found myself having difficulty drinking and eating without having some dribbling problems. I figured that it was related to my cold and I just had some swelling going on. This morning I woke up and it was more pronounced and I told Lois about it. She said, "I wonder if maybe you had a stroke?"
   Not ever having a stroke before, I replied, "How would I know? I've never had one."
   After I got to work I was talking to a co-worker and he said, "Maybe you had a stroke or something." This freaked me out so I called Lo and told her I was worried and she said call your doctor and see if you can get in today. After explaining to the nurse some of the symptoms that I was feeling, she told me to get to the ER because it sounded like it could be a stroke.
   So off I went with Lois and the first thing the RN said was, "Just looking at you, I'm thinking that you have Bells Palsy." She explained that it can often be triggered by a respiratory viral infection. That made sense, since I was coming out of a really bad cold. The doctor came in moments later and confirmed it. They did a CT scan of my brain to make sure I wasn't bleeding and found a sinus infection, too. I am on prednisone for the next 11 days and some other anti viral stuff. Plus at night I have to tape my eyelid closed because it doesn't want to close on its own.
   Just when I think things are settling down, wouldn't you know it. Ugh.

3/24/2011

   I have been sick since my last post. I left work on my first day back to work and went home and slept for three days. I finally made it out of bed and downstairs where I took up residence for another two days on the couch before I had to return to work yesterday. I am still dragging my heels and this cold has gone around our shop for the past two weeks. Some people have even caught pneumonia.
   Besides wanting to just die I have been okay. Although my psoriasis has taken a turn and the Enbrel quit working. Since then I have flared out and I am miserable. I also have psoriatic arthritis and it has affected my right knee and I am limping a lot and using a leg brace at work to walk around. Everything is a little uncomfortable. I was using the gabapentin to help with my muscle tension, but it just turns me into a zombie come morning. It would be nice to just feel well every so often rather than have one thing hit me after another.
   Not much else happening. When I feel better after this week I am planning on taking some pictures. I heard of a pretty cool place in American Fork that I want to visit. Hopefully I'll have some pictures to post real soon. Take care and thank you all for the great advice and comments last week. I am feeling much better this week.

3/16/2011

   I think I am going through a bout of depression. The past few weeks have been difficult. My body aches all the time and since my TIPS procedure I have had heart problems. I keep getting sharp pains in my chest and a throbbing that comes and go. After an E.K.G. and a stress test the doctor was unable to find anything wrong with me. I have also had some severe knee pain which has bothered me a great deal. I am wearing a knee brace but that doesn't seem to help very much.
   With all these things happening, emotion is building. The knowledge of how real this is makes me weep, mostly because of the pain I am feeling.
   I went to see my doctor last week. We discussed my general health and the fact that my MELD dropped down to 18 and a lower category. I was in the top 11 and now I am in the top 34. This was a bit hard to take. When the doctor left he said, "Don't worry, you'll get your liver. It might be this year, or the next, but you'll get one."
   This past week I just came up on my three year anniversary since I was diagnosed with liver disease. To hear the news that I may have to go through this for another year or so is frustrating. It feels like I am starting all over again and that hurts my heart. In the past week or two I have tried to sit and write. Nothing seems to work. I can't even sleep without waking up all throughout the night. I am so tired.
   I go back for labs in a month. Hopefully my numbers will change by then.
   That is all.

Hanging in There

   I'm sorry for not posting lately, but my life has been somewhat hectic. Ever since I had my procedure done, my health has changed considerably. My body aches all the time and I have been extremely tired. I think part of this is due to medicine change.
   I have my MELD checked later next week and soon after that I will be seeing my doctor. Hopefully we can figure out what's going on with me. I have had a lot of swelling happening so perhaps it's time we put the water pills back on the table.
   Thanks to all who have emailed me to see how I've been doing. I'm hanging in there and hope for positive results with my next appointment.
   Wishing everyone well.

Long Week

   This has been a long week. I went in for surgery on Monday and got out of the hospital on Wednesday. I decided not to work Thursday because I was pretty beat. On Friday, Lois had her surgery and that went well. All except for all the throwing up and getting sick stuff. I spent the night with her on Friday and she groaned and whimpered all night long. I felt really bad for her. She has not had anything to eat or drink since Thursday evening so she is pretty miserable. Hopefully that will change tomorrow (Sun).
   Just hearing about what they have to do to fix a herniated stomach is unbelievable. It sounds awful and I am constantly amazed with the human body and just how much it can endure. Too bad we haven't figured out how to heal it without crossings those thresholds of pain. Lois usually has a pretty high tolerance when it comes to pain, but this surgery got the best of her. She will probably spend another night or two before they let her go home.
   I had to get some labs drawn regarding the medication I am on and my MELD was 16. Now that they've fixed me up and the blood is moving around differently, that really changed things. I am guessing when I get my new monthly labs for my UNOS update, I will have dropped down the list a bit. It is kind of a bummer, but I am okay with it. They took care of something that needed to be dealt with and could have potentially been life threatening. Wherever that places me in the transplant world, that is where I need to be. As long as I can keep on top of the encephalopathy and keep a clear head then all is well.
   Once again, thanks to everyone for all there thoughts, emails and cards. We are very blessed.

Hospital Food Sucks

   My TIPS turned out well. The recovery has sucked tremendously. I have been extremely tired, sore and nauseated. Plus my bed was a little small so I was kind of scrunched up most of the time. This was quite the experience. After I was able to move around and get out of bed I scrolled the hallways. There are a lot of sick people waiting for transplants. Hearing some of their complaints and listening to the patients who had hepatic encephalopathy was very sad. I feel miserable right now, but there is no way I could endure what these people are going through.
   Anyhow, I am home again. I will probably write later after my work week. Take good care.

   Thanks for all the notes and emails.

Monday, Monday

   My coordinator called and left a phone message saying that they are going to do the TIPS procedure on Monday afternoon. I am both excited and apprehensive about it. Waiting for a time bomb to go off inside of me scares me to death, so I'm happy that they are doing it. But then there is my nervousness of the procedure itself. I've only read a little on the surgery and risks; I haven't had a doctor review this with me yet. I guess that will all happen on Monday morning. I think the fact that they have taken all these steps to get this done so fast really speaks for itself. I think they are generally concerned.
   There was also mention of the possibility of staying overnight even though it is considered an out-patient procedure. That's okay with me. I'd rather have someone monitoring me after I get a tube shoved through my vein.
   So...I'm very happy. Plus I'll get another nap.

Today's Update

   Well I heard from my coordinator and my CT scan shows that there has been no change in the blood clot in my portal vein. It remains the same after months of being on coumadin. Her understanding is that it is probably unlikely that they can do a TIPS procedure with a partially blocked vein. They can't afford the risk of moving it. Tomorrow they are having a board meeting with the doctors and they'll discuss my options. The good news is that there was no sign of anything else. No spots indicating tumors or cancer stuff.
   It is still a lousy situation though. Somehow we are going to have to resolve this before I have a blood vessel burst. The beta blocker will only help for a while. Lois is thinking that they might end up hospitalizing me and treating me with heparin in order to get rid of it. I guess we'll just have to wait and see. In the meantime I think we should have a pool on the call. That might be fun.
   Good night all.

(Wipes sweat from his brow)

   No cancer!!! 

   Lois will have to continue getting checked every year to keep an eye on things and they will do another biopsy the next time she is checked. We are all feeling better about things right now and very happy.

   I had a contrast CT scan today and the doctor will have to look at the results and determine what they want to do about the TIPS procedure. They are looking to see if the blood clot that I've had is still there. It is in the portal vein, which is the vein that they would be connecting one of the hepatic veins to. If it is still there, it could play a big role in whether this procedure is going to be possible. Another waiting game, but I'm not so worried about it. They raised my beta blockers again to help the blood flow. Two years ago I was taking 20mg., now I'm up to 120mg. The bad thing about that is, if you aren't careful standing up you can take a head dive. I've gotten a little dizzy before, but never had a tailspin.

   Wishing everyone a great weekend.

Epic Fail!

   It is never a good sign when you wake up from your endoscopy and the doctor greets you with: "You're starting to worry me."
   After Lois mumbled something like, "That doesn't sound good," The doctor went on to say that he didn't like what he was seeing and followed that with, "We need to get you transplanted."
   The doctor told us that I had a tiny leak in my esophagus and that he wasn't worried about it, what worried him was the varices in my stomach that looked like they were swelled up and and ready to burst. He explained that he wanted a CT scan and that I probably needed to get a Transjugular intrahepatic portosystemic shunt (TIPS) procedure done as soon as we can do it.
   The procedure is done by connecting two blood vessels in the liver. A radiologist will insert a catheter into a vein in my neck that has a balloon and metal mesh stent attached to it. Using X-ray equipment, the catheter is guided to a vein in the liver to where the balloon is blown up to place the stent and then they connect the portal vein to one of the hepatic veins. Once this is done the blood should flow better and take pressure off the stomach, esophagus, liver and intestines. In the meanwhile he told me to watch for any bleeding and to get to the hospital immediately if I had any problems. "If you start throwing up blood, have black stools, you call 911," he said. "Don't screw around."
   I'm not very worried about the varices bleeding, but I am more concerned about the procedure itself. There are a number of risks such as bleeding, infections, damaging blood vessels and soreness in the neck. All of that sounds awful to me. Plus, we were told, that even though this procedure was something I needed it could also increase my encephalopathy. This is a whole new monster of its own.
   I guess they feel it is serious, though, because by the time we got home the clinic called to schedule my CT scan for this Friday. I imagine they'll want to set up the TIPS soon after that.
   I am somewhat spooked. I'd be lying if I said any different. So much is happening all at once and we have still not heard anything on Lois' biopsy. That just makes me mad. Big breaths ... big, big breaths.
  Maybe we can set it up for my 50th birthday, which is Monday.

Update

   I have my endoscopy tomorrow. I've gotten rather used to them. In fact, I look forward to them. I enjoy the sleep.
   The bleeding in my esophagus hasn't happened for over two years, and the only place they have seen any leakage is in my stomach. That - they say - is a whole new ball game, and we're not going there unless we have to. I do have worries about it though, having been on coumadin for the past several months. I am hoping that everything looks alright.
   In other news, we are still waiting for Lois' biopsy results. We should get them tomorrow. The holiday kind of through a monkey wrench into that. I will let everyone know as soon as we find out anything. It has certainly been a very long week. 
   I did however get my labs drawn and my new MELD came out to be 19 again. For right now I guess this is my magic number. 
   Take care.

1/11/11

Lois and I return to the hospital on Thursday. I will be doing new labs for my MELD score and Lo will be taking a necessary motility test to check muscle pressure in her esophagus. It sounds extremely uncomfortable. They will be feeding a tube up her nose, down her throat and into the esophagus. This is a preliminary procedure that needs to be done before they can start working on fixing her other problems.
We are still waiting to hear from the hospital about her biopsy. As you can probably imagine, this has been a strenuous time. The girls are a bit unsettled. Hopefully we will hear something soon. Waiting is always agonizing. I sincerely thank everyone for their comments and e-mails. It means so much to Lois and I.
My friends and family are sick right now, and many blogger buddies I know have their own illnesses happening in their lives. Some are very sick. It is hard to think about all those suffering without feeling like an emotional sponge. I am thinking of you all tonight. And I hope this new year brings you peace and health and happiness.

The Endoscopy

Imagine your stomach sliding up into your esophagus as you move or sit or lie down. It sounds pretty awful huh? It sits there bunched up making it difficult to breath and causes heartburn. It is also brutally painful at times. This is what the endoscopy exam discovered.
The pictures that were taken also revealed striation marks in a couple of different places confirming stomach ulcers. It does not surprise me that there would be ulcers; after 2-1/2 years of worry and stress, why wouldn't there be? I can see it in the eyes and hear it with every groan.
There is also the acid reflux. The thing that led us here. At the bottom of the esophagus where this whole mess takes place, the stomach acid splashes up into the esophagus and has done some damage to the tissue. A biopsy is taken to check for cancer. We will now have to wait for almost a week for the results.
My doctor explains these things to us and draws diagrams. He looks me over and says, "You look real good."
Lois looks up from the hospital bed she is in and says, "He's doing all right." Only today he isn't my doctor and I am not his patient; Lois is.

                                                -January 6, 2011

One of Those Days

It has been a heavy week and it is only Wednesday.
On Monday I found out that my new labs for my MELD score in December were never updated with UNOS (United Network for Organ Sharing). That disheartened me and caused me some grief for a couple of days while I processed it.
Today I learned that a good friends wife has cancer. I have trouble with that one. I lost both of my parents to cancer.
Five minutes later I was told that one of my best friends has colon cancer. This I didn't take so well and had to find a place to shed some tears. Sometimes I just don't get it, and I wonder why things happen the way they do.
And then, on the horizon, I am thinking about Lois' endoscopy coming up real soon and the worry gnaws at me.
Too much. Too damn much to think about.
So...my score dropped because of an error. My friends are faced with sad and disturbing news that may most likely be life altering and worry is scratching on the inside of my skull that keeps me up at night. Never mind all the other stuff. The stuff that has already become part of the scenery. The kids not doing anything to help out because...they are kids. The freezer going out for the second time in a row and losing all the frozen groceries because I can't figure out what's causing the GFI to trip. Never mind the mountain of insane that keeps happening. Too much. Too damn much to think about.
I say a prayer for this and prayer for that, and in between I offer a kiss or a hug for comfort. It is heavier today, but I still manage to laugh and smile about the other things there in life. The things that are funny. The fact that my oldest dresses like Helena Bonham Carter. Or that the animals in my house always make me smile. And I realize that these things are not too much; they are not enough.

Just Breathe

I woke up early in the morning. An hour has passed by now; it is 3:30 in the morning. Something is bothering me and I can't sleep. I finally make my way out of bed and move downstairs. It seems exceptionally bright. The storm has moved in and the snow has covered the back yard. The wind blows flakes left and right and up. The only thing I don't see is the snow coming down.
My wife has been feeling painfully miserable. I've told her over and over again to go to the doctor. "I can't. I will. No time. Next week. I'll see." The words come out in different ways. I tell her, "You have to stop. Your going to get sicker."
She calls me and says, "I've made an appointment."
Finally. Hopefully. Maybe. She'll get better.
She comes home from the doctor and say's, "My allergies are killing me. The doctors said that my (insert names here) levels are through the roof. They are 1,400. Way too High. Stress levels that can cause heart attacks. He gave me pills."
I whimper inside. I've know that the stress levels have been way too high. I've told her that she needs to try and relax and quit taking things so serious.
"What like illness? And money? And death?"
"Yes, like all those things. Just breathe."
"Can't breathe. It's choking the life out of me."
I am happy about the doctor appointment.
Finally. Hopefully. Maybe. Things will change.
One of the first things I learned as a person with a chronic illness was that it is just as hard on the caregivers. We've gone to parent/teacher conference meetings and said, "Here's our story. Please watch our kids. Let us know if you see any changes."
I think it is different with a spouse. You can't stop the worry and the stress. It is part of the normal reaction.
I am praying that this gets better. I know that the allergens have long since been aggravating. We've been working on them. But I know that we are not saying goodbye to the dogs and the cats and the guinea pigs and the hamsters and those other tiny rodents any time soon. All we can do is minimize the damage and work on the stress. Just breathe.

I love you, Lo.

The Paradox

I had my labs drawn yesterday prior to my three month doctor appointment. My score went back up 4 points and my MELD is now 23. The doctor told me that I was getting pretty sick. He also said that while my score was still somewhat low, I could still be transplanted at any time. Oddly enough, I feel a little apathetic. Somewhere along the line I seemed to have crossed a threshold that's changed my outlook on things. For over two years now I have waited for this, thinking what a joyous moment it would be when it finally happened. Now all I seem to be able to think about is that someone is going to die.
I know that none of this has anything to do with me, but the thought of it has me shaken. It is in my sleep. Knowing that someone must die so that I may live weighs heavy on me. Up until recently when my numbers were still low, I had not given it much thought. Everything was still so far away. I had no time to think about what happens next, everything was about today and this moment. I was focused on how I felt and the changes I went through each day. But now that I am closer things have changed. My focus rests on everyone involved and all that comes with it. It is hard for me to look forward to something while knowing what fate will bring to another family. I was never blinded by it; it just seemed so far away. I've always known that time would not change it. It is a paradox.

Happy Thanksgiving.

Recently my words have been few and far between. Over the past couple of weeks I have been feeling quite ill and it was all I could do to get through the day, but I am feeling much better these days and I want to thank everyone who continues to leave comments and send emails. It amazes me how such a simple act of kindness can help brighten my day.
These past couple of years have been tough and chaotic and I am often moved by the spirit of gestures handed our way. It is hard to put into words what only tears can describe.
This year I have a lot to be thankful for. The presence of each day, my family and friends. Each moment in time is significantly different, and yet somehow connected to the bigger picture. I have had a lot to reflect on, and while it has been hard we seem to roll with the punches. I have kind of adopted the attitude of not taking things too serious.
I would like to take the time to apologize to all those I still owe an email. I'm not ignoring you. Sometimes some days are just difficult and hopefully I will get a chance to respond to everyone before too long.
I hope everyone has a wonderful holiday and a lovely Thanksgiving, and that you all enjoy time with your friends and your family.
 

~beaux

Deep Breaths

My MELD dropped one more point. I feel guilty for being frustrated. Perhaps it is time I learned about patience.

Nothing Much Happened Today

There's not a lot going on. I seem to be really tired all the time. Every day this past week I have slept more than usual. One day I slept for almost 13 hours, plus I still took cat naps after I woke up. I have also had stomach aches in the mornings that usually last for a while. Sometimes all day. I am really getting tired of that.
I don't know if I mentioned it, but my coordinator called me after I got my last results and said that even though I dropped 3 points on my score last time, I am still somewhere at the top of the list. I take that to be good news. I will get new labs on Nov 10, when they have me come in again. I am worried about my score dropping though, it makes me nervous.
(taps fingers...)
I did manage to get my bathroom all sparkling clean and disinfected the way I wanted it. It makes me smile. I don't even want to go in there anymore. And I keep trying to stay current on house projects we have going on. Nothing big.

Today I have been on the waiting list for two years and two months.
Well, that is all.

Sick and Tired

So, pretty much every fiber in my body hurts these days. Ever since I took the beating from the hardwood floor, I have slowly slipped backwards. My muscles ache and my calves seem to be wrestling with edema. On top of this, I've been fighting a cold which I finally gave into yesterday. Every time I blow my nose I get a pounding headache and there is blood from the damn coumadin I am taking. Not just the watery kind that I sometimes get, but the very thick gloppy blood. It is bright red.
Lois and I worked on the molding yesterday and I probably have a couple hours left today, thank goodness. It should actually go pretty fast now that I have the bay window out of the way. The living room will look really nice when we're finished.

In other news, my MELD score changed considerably. I went in Friday morning and had my standard order taken. Around 4:30 that afternoon I decided I couldn't make it through the weekend without knowing my score. I was able to call the lab and one of the techs looked up my name and asked me what I wanted to know. I told him I needed my bilirubin, my INR and my serum creatine. After that I called Lois and had her get on my blog and call up the MELD/PELD calculator. As Lois typed in the empty fields, I already had a feeling that my score had dropped just by reading the numbers.
"Your MELD is 20." She said.
I'm sure my silence spoke for itself and that she would have wrapped her arms around me and gave me a big hug if she had been there. 

Later on Lois told me, "It will be all right. It just means somebody else needs a liver a lot more than you do right now." 

This perspective was all that I needed, even though it was hard to think about a 3 point drop. I was happy to see that my creatine level was still in normal range. The one thing that I pay close attention to is how my kidney functions are taking this assault.
The next thing I had going through my head was how far I had dropped. Did I fall out of the range I was now in?
No. I was still in the same range. 19 through 24.
"That's a good thing." I told myself.
While all of this was a little disheartening, it made me realize that the score can change at any time. It will bounce around and you will never be certain of anything until the final moment. It also made me realize that the weakness to my body has gained momentum; what once was is clearly a thing of the past. I am physically exhausted. It is certain that things will change again over the next four weeks.

Tick-Tock

I had my labs drawn on Monday and received my new MELD score today. I have moved up from a score of 21 to 23. Although this seems like a slight jump, it is actually pretty significant. This has put me in that obscure range where anything can happen. I am now with that handful of people who wait and bide their time. I am suddenly thinking in terms that I need to pack a bag to throw in the car. I am thinking that I should clean my bathroom from top to bottom and disinfect it. Maybe I should sterilize my house? I wonder how far from home I can actually venture? I have a two hour river rafting trip on Saturday and I'm half afraid to go. 

For two years I have waited for this moment and now I'm just confused. Tick-Tock.

New MELD Score

I had new labs drawn on Monday. Ever since my MELD score went up three months ago I have anxiously been waiting for my next doctor appointment. For three months I have been walking around on pins and needles waiting for this appointment. Actually it isn't so much about the doctor visit as it is having my MELD score checked again. I usually have my labs sent to me by mail and I use the UNOS MELD calculator to check my new labs so as not to bother my coordinator. If I don't, then I am on the phone 3 days later and I quickly become a nuisance until I track down someone who can help me.
Anyhow, I just received my labs in the mail and I am now at 21. I definitely am moving up the ladder.
Here is the MELD range:

Lab Test Frequency

    * MELD score greater than or equal to 25; Labs needed every 7 days

      * MELD score 24-19; Labs needed every 30 days

      * MELD score 18-11; Labs needed every 90 days

      * MELD score less than or equal to 10; Labs needed every year

Meanwhile I am very tired. I find myself falling asleep more often during my days off. I have also noticed that I am running out of breath a lot faster than I used to. I think I am just physically weak.
Posting has also been hard to do. I don't seem to have it in me anymore. I have been trying to keep the photo journal going though, but I haven't had anything to post for the past couple of days because I've been sleeping. It's kind of hard to take pictures with your head buried in a pillow.
So there it is. Good news depending on how you look at it. I am happy about it.

Lately I have been following some blogs in the liver community of some people who are not doing as well as I am. They are a lot sicker than I am and I count my blessings that I am doing so well. I hope these people don't have to wait much longer and that they all receive their transplants soon. My thoughts and prayers go out to each of them.

Update

It seems as though it wasn't very long ago when I lay curled up on my bed writhing in pain. Somehow I managed to endure the agony while eluding death; never knowing how sick I really was. And then a visit to one of my doctors revealed that something else was wrong, and I was admitted to the hospital late one evening. In the morning during a routine EGD I would have a bleed out. Not long after this my family and I discovered that I was terminally ill. Compounded -- all these things and more started to weigh in and our lives began to change. We were in unfamiliar territory. That was more than two years ago.
This week I am re-living some of the past not because I am nearing a two year mark on the waiting list, but because some of the old pain is slowly creeping back. Moments of sharp stomach cramps and nausea occasionally give me spasms, and that relentless battle with sleep has returned. I am exhausted all the time. There are also newer symptoms that I didn't have back then. I am stiff and sore from muscle degeneration. My strength is more mental these days. Even here that is not my biggest strength. I am losing focus in simple conversations. I will be talking to Lois about something and I will lose my train of thought. I find myself reaching for other words to draw me back.
Despite all of this I remain wary. I take my medicine and try my best to keep strong. The words, "I am dying." or "You are dying." They seem to be spoken more often. Once, when this was all new, the words seldom came up. Now they are descriptive. Defining. They hold context. Something I never really thought about. And yet the thoughts have always been there.
The one thing that has always remained a constant is, "You have two to two and half years before transplant."
As that window narrows and my body gets sicker, I become more and more aware of this. Aware that the clock keeps ticking. There are no hands keeping track of time. There is no faceplate to look at. There is only an invisible clock measuring anxiety and frustration and the onset of new symptoms.

I Have a Hole in My Side

I had an appointment today with my dermatologist. The enbrel seems to be working like it's supposed to. I also had a large lump on my side that I've been waiting to get checked. In the past two weeks it about doubled or tripled in size and has been hurting like hell. It turned out to be a big cyst. I figured the doctor would probably drain it and maybe send a piece of it away to be checked. That is exactly what he did. Now I have to wait until next week until I hear something. I hate waiting. He seemed pretty confident that there wasn't anything unusual about it, but he wanted to be sure.

There isn't much else happening. I don't have my next transplant appointment or labs for another month. I am starting to get anxious about that.

I have had a lot of bloody noses happening lately. The good thing is that they don't last. And I am having a lot of bathroom issues which tend to give me stomach aches. That is the downfall of taking so many diuretics. Plus I am still having trouble with losing my breath and my voice. It doesn't take much for me to get winded.

Some days I feel like I'm spiraling and I feel like I am getting worse. I just need to remind myself that I need to be patient and continue to wait. I just wish I didn't have this big hole in my side while I do it.