TIPS Scheduled

Today we met with the interventional radiologist who will be performing the TIPS procedure. He gave us a lot of information. It is interesting to see how different doctors interact with patients. Some give a minimum of information and others give a lot of information. This doctor was one of the a lot of info types--which I appreciate. He explained the procedure to us and drew us a diagram. He also went over the risks in detail. That was helpful, but it was also scary. The other doctors that have spoken to us about the procedure have minimized the risks and really didn't go into detail, but Dr. P went into detail. The biggest risk for Gess is going to be bleeding. Bleeding is always a potential with type of procedure, but it is exasperated by Gess's bleeding issues. Dr. P said that the overall risk of this is under 5%, and more likely around 2%. If he does start bleeding, it will be a very bad situation and there is a chance he can die. They have never had anyone die from TIPS at this hospital, but it has happened at other hospital.

I think that this discussion really just hit home with both of us today. When we were driving home we were talking about our plans for the weekend and possibly getting away. I queried whether the timing would be good given the upcoming procedure, etc., and Gess said, "It might be my last chance to do it because I might not make it." That was hard to hear. I understand it and think about it myself, but it is really difficult to hear him vocalize it. He has always tried to portray an "invincible" attitude, so this change is hard.

Anyway...the plan is for us to see the pre-anesthesia clinic on Friday and the TIPS procedure will be on Thursday, October 21st. Because of Gessner's "difficult" situation, they are going to admit him the day before and give him blood products to try to boost his INR, etc. Then they will also keep him at least until Friday to make sure that he does okay. He will also continue on his course of antibiotics before the procedure.

Clinic Appointment

Gess had clinic today. I had to go to court so I wasn't able to go, but he gave me the blow-by-blow. Unfortunately there was some bad news. His PFTs are the lowest ever, with a predicted FEV1% of 35%. This is down by about 8% from baseline (he hasn't been able to do PFTs in awhile because of the lung bleeding, so his "baseline" could have slid down gradually).

The other bad news is that his weight is down to 112 pounds. This puts his BMI at 18.1. He has to be at least an 18 for transplant and they really want him to be much higher. So he needs to gain weight. If he can't do it on his own, they will put in a feeding tube. Apparently a feeding tube can be problematic with transplant too, so hopefully we won't have to go that route. For now it is going to be eating, eating, eating and at least 3 ensures a day.

Finally a "Real" Update!

This morning we FINALLY got to sit down with Gess's primary CF doctor and get some answers. He was present at the "big" transplant team meeting and so he knew what happened there and has been talking to the liver doctors, etc. The bottom line is that the team is recommending the TIPS procedure (Transjugular intrahepatic portosystemic shunt) and then to continue to work toward the lung transplant. The plan is to schedule the TIPS for about 3 weeks out, at the end of this current course of antibiotics. The plan sounds reasonable. So, if you just want the basics, there you go.

For the longer more detailed answer, here you go. The reason that we were getting so many different answers from the doctors about the "plan" is because there are differing opinions on the team (which is bound to happen when you get so many "experts" involved and have a case that is complicated as Gessner's is) and then also a fair amount of conclusion. Basically, the people that were talking to us probably shouldn't have been saying anything. Dr. T said that he will be the point person and filter the information to us so that hopefully we won't have to deal with the misinformation and confusion again.

The basic issue is that the liver transplant team does not think that Gess needs a liver transplant--or at least not at this point. The risk associated with doing the liver transplant at the same time as the lungs is pretty significant and it would also make it take longer to get new lungs (because of needing both the organs at the same time). The lung transplant team is worried that if they did a lung transplant, Gess's liver would fail shortly after transplant. They are worried that while his liver functions are decent, the amount of cirrhosis, plus his esophageal varacies, he doesn't have much "functional reserve" and that the stress of the lung transplant and post-tx drugs would be too much.

Enter TIPS. One of the issues with the liver disease is that the cirrhosis causes pressure to build up in the portal vein. This portal hypertension is responsible for the esophageal bleeding that Gessner has had previously. The pressure builds up in other venous systems too, so the doctors think that it is possible that the portal hypertension is causing his lung bleeding (or at least contributing to it). This is supported by the fact that IR has went in to find bleeding twice in the last two years without being able to find any possible sources. The TIPS procedure relieves the pressure in the portal vein by diverting (via a shunt placed in the liver) blood flow away from the liver.

Decreasing the portal hypertension could potentially allow the spleen to decrease is size and the platelets to go up. That would be awesome, but it is definitely not a sure thing. The reduced venous pressure would reduce the risk of the lung transplant procedure and also some post-transplant risks. (For example, there have been patients who survived the lung transplant, only to die from esophageal varacies like Gess has had previously).

There are, of course, risks associated with the procedure. The good news is that it is a "procedure" instead of a "surgery." They do not have to cut up his abdomen, it is done by interventional radiology. Unless something goes horribly wrong, this shouldn't affect his ability to have a liver transplant if he does need one. If he needs a liver, the TIPS will come out with the old liver. The biggest risk for Gess is encephalopathy (which is basically confusion that can be caused by advanced liver disease). This can be treated with medication, though it can also become very severe and end up in coma. Dr. T is optimistic that if Gess does have this complication it can be treated with medication because he has never had it previously, even when sick, etc.

The plan is to do the procedure in about three weeks, at the end of this current course of antibiotics. The rationale for this is to get Gess as healthy as possible before the procedure.

Then we continue with the lung transplant process. Right now the two issues are pain medication/management and nutrition. The pain medication/management issue is the biggest hurdle right now. Gess has had pretty chronic issues with pain. Right now he is experiencing what he calls "spasms." We're not exactly sure that anything is spasming, but it's the best descriptive term we have been able to come up with. Gess says that it feels like someone is stabbing him in the lung and twisting. They last for about 15 seconds and he literally doubles over in pain. No one knows what is causing them and they are sporadic in nature. The doctors don't know why this is happening and don't know how to stop it. So, he needs pain medications to deal with this. The complication is that he is allergic to most narcotics and can't take most other pain medications because of liver/bleeding issues. So he takes IV demoral, which in the past has been sanctioned by both the CF doc and the pain specialists. The issue is that the lung transplant team wants him off of all narcotics before they will list him. Still not sure how this is going to happen. We have an appointment with the pain specialist on Monday and are going to keep pushing to see if we can find some relief. He is also seeing an allergist in a couple of weeks to see if they can do something about his medication allergies.

The other issue is nutrition. Right now Gess's BMI is right around 18, which is the cut-off for transplant. But, his blood shows that his nutrient levels are very good and he doesn't have any reserves. Gess has been working on gaining weight, but it is hard when he is so sick.

They are also going to do the liver transplant evaluation work up so that if he does need a liver it will be easy to get him on the list and activated.

So...the immediate plan is to get him as healthy as possible, have the TIPS procedure in 3 weeks, and hopefully find a solution to the pain and then get him list for lungs. Whewww...

While it was good to talk to Dr. T and we feel better about the whole situation, we are both struggling to stay positive about everything. We are exhausted and so very tired of hospitals. I know that he is frustrated with not being able to work and his general downturn in health. I am fighting to stay positive and struggling with the way CF has engulfed everything in our lives. So, we take it one moment at a time and hope for some respite soon.

Rough day

Today was a rough day. I'm not sure that I have ever seen Gess in so much pain. It was so hard to watch him in that much pain and not be able to help him. He's always said that he has never cried from physical pain, but I saw tears today and I see his spirit breaking. I worry that he doesn't have much fight left in him. I don't know how he could in light of the unrelenting pain and the utter inability of the doctors to figure out anything to help him. I hate the feeling of helplessness and it's killing me to watch him like this. For now, it's one moment at a time and I just hope and pray that he can get some relief soon.

Scared

Confession: I am completely exhausted. Physically and (even more so) emotionally/mentally. I know that this isn't any big shocker, but man, am I feeling it today! It feels like it has been non-stop craziness and drama for the last couple of years. I think that part of why it is so hard is that there isn't a real end in sight. This whole transplant process scares the crap out of me. I am scared about the wait and the surgery and the recovery. I am scared that it won't work or he won't make it. The statistics aren't very encouraging. In fact, they depress me. I hear success stories and am tempted to be hopeful, but hope scares me at this point. I think that most of all I am scared that I am not going to make it through this process. It feels selfish to say that since I am just the witness, but there is something in me that is afraid that it will be too much. I know that I need to be strong for Gess and my focus needs to be on helping him through this, but I'm scared.

P.S. Just to make things complicated, we have a separate transplant blog. I will likely post some transplant stuff here, but for more frequent updates visit the blog at www.liverlungtx.blogspot.com

Lung Transplant Education

We had lung transplant education today. It was basically an information session held for patients and their support teams. Gess's sister Diana joined us for the session. It was informative, but honestly it sort of freaked me out. It makes this whole process seem so much more "real" and it really hit us that this could be happening a lot sooner than either of us really expected.

Here's a brief description of what happened:

They told us about the evaluation process and the tests that are required for that. Gess has gotten several of these tests done and will get some more in the following weeks. As far as I know, he will be finished with all of the tests on September 3rd. He does have to consult with the pain doctor again and our current appointment is not until mid-September but they are going to try to get him in earlier. When all of the tests are done the transplant team (which is made up of the surgeon, social worker, pulmonologist, dietitian, etc.) meets and makes a decision on listing. The team could decide that they need to do more tests or evaluations. They could also decide that Gess is not a good candidate for some reason and decide not to list him. Or they could decide that it is time to list him and put him on the transplant list. Because Gess's situation is a bit different than the "normal" situation for transplant, the team will likely appeal to the powers that be for an exception to get him a better placement on the list. They said that we should hear about the listing decisions within 1-2 weeks after all of the tests are finished. So, conceivably he could be listed by mid-September, but it could also take longer depending on any number of circumstances.

Once he is listed, we basically wait. The average wait time at the UW is 3-4 months, but ranges anywhere from zero days to about 2 years. We need to be "on call" at all times and be able to get to the hospital within 3 hours of receiving "the call." The "call" is made when there is a likely match. This is based on a preliminary assessment of the donor's lungs, etc., so it doesn't mean that the lungs will turn out to be good, etc. The UW surgical team will have to go to the hospital were the donor is, assess the lungs, procure them, and then transport them back to the UW. At the same time, they need to make sure that Gess is healthy enough to receive the lungs. If he is having some sort of infection or fever or other issue, he might not be able to accept them. If both Gess and the donor lungs are good to go they will take him off to surgery. The surgery lasts about 6 hours for a double lung transplant, but could be more or less depending on what goes on.

They expect him to be in the ICU for a few days following the surgery, with some of that time on a ventilator and with various tubes and wires. They expect the hospital stay to be about 2 weeks but that can fair from as little as 1 week to several months depending on the circumstances.

Once he is home, he will have a pretty rigorous maintenance schedule, especially at first. He will be on a number of new medications (8-10 new ones) and will have to carefully monitor his lung function and vital signs every day. He will need someone with him 24/7 at first and will have weekly appointments. He is supposed to get a lot of exercise, but will have to be careful with arm movements because they cut the sternum during the procedure and it takes about 8 weeks for that to heal.

More hospital time

Gess is back in the hospital...I think that this is the fourth time in four weeks, but who's counting? More bleeding from his lungs. It seems like the bleeding is getting worse. On Monday he ended up with about 6 cups total (which is 3 pints)! The docs gave him 2 unit of blood and admitted him to the hospital. The painful spasms in his right lung continue and no one seems to have any idea what is going on.

They are continuing to do transplant evaluation stuff, so at least we are getting that done. They did a bunch more blood work (taking 15 vials!) and more urine. They were also able to do the right heart cath today. Apparently the doctors want to do a endoscopy too, but I am not sure if they are going to be able to do it while he is inpatient.

Gess's sister Diana is in town and she has been doing a lot while he is in the hospital. She and Gess conspired to have her come into town for a week and send me away for a little break. I went to Portland for a few days and was able to get some rest and relaxation, which was very nice. And while I was gone, Gessner and Diana did a lot of cleaning since they know that having a messy house stresses me out. This was all supposed to be a surprise (I really do have a sweet husband), but their dad let the cat out of the bag. So, it wasn't a surprise, but still a wonderful gift.
Tomorrow we are supposed to have an appointment with the liver doctor but since Gess is inpatient, I don't think that we are going to make it. We also have lung transplant education, which I think that we are going to go to, inpatient or not.

He missed his DEXA scan (again!) and diabetes appointment because he was inpatient, so we will have to schedule that.

Updates

More drama on the CF front. On Saturday Gess coughed up 3 cups of blood. He is certain about the amount because he happened to have an empty pint glass next to him. Definitely not good. The pulmonary team on call was headed by the director of the CF center and she told Gess that he needed to come in. The good thing was that she called the ER ahead of time and that paved the way to get him admitted to the ICU. The issue was whether or not to call interventional radiology (IR) in to see if they could locate the source of the bleeding. To be blunt, IR wants nothing to do with Gessner so it was no surprise that they didn't want to go in. The CF doctor did talk to them, but they decided not to go in this time. The recommendation was to press on with the transplant evaluation as that is the only real option.

The medicine team that followed Gess this time (and last) was great. They got a few of his tests done, so we are on track evaluation-wise. They ran some blood work, did a CT of his sinuses, an echocardiogram, and an esphogram.

I did have one freak out when the tx coordinator told me that "there is no way they are going to list him while he is on pain meds." In following up, I think that this was a vast overstatement. The pain management is a big hurdle because of his extensive allergies, etc., but the pain specialist was reassuring that this will not be an exclusionary issue. We need to see the pain specialist for (another consult) but they don't have any appointment soon, but they are going to work on trying to get us in sooner.

What's up for next week: DEXA scan, diabetes clinic, hepatology clinic, and lung transplant education class. Gessner's sister Diana and her daughter Hannah are going to come for a week and give me a break. This was intended to be a surprise, but Gess's dad let the cat out of the bag. It stressed me out a bit because my house is a disaster, etc. But...I am trying to let it go and try to take this as a very nice gesture from my husband and his sister. I am going to go out of town for a few days without many plans...just chill, sleep, and try to relax. I believe that the plan is for Diana to clean the house some--which will be awesome, though the whole thought of someone seeing my mess causes a slight (or not so slight) panic. I'll get back in time for some work obligations and the transplant education class.

To follow: nutritionist, heart cath, social worker, lung transplant surgeon, lung transplant clinic, pain clinic, and liver transplant clinic. If we can get squeezed in for the pain clinic, all of this will be done on September 3th. Yikes!

Long rambling post (not short on complaining)

I am really tired. Gess is still sick and doesn't seem to be getting any better. He's on IV antibiotics and has been taking it easy and resting. But...his mood and mental status are not good at all. I really worry about how much he is struggling and feel so helpless. He is doing things to help address it, but I haven't noticed much change yet. I know that these things take time. Plus, he is dealing with SO much. I totally get that and appreciate it. But, at the same time, it is exhausting for me. I am totally drained. Today was an intense day at work and I left feeling pretty energized and happy about that, but as I drove home I felt the stress settling in and even panic, which I really hate. I want my home to be a safe haven and place for me to be able to relax and get rejuvenated. Right now, that is just not happening.

One of the hard things is that I want to ask for help and there are people that want to help, but right now I don't think that it will actually help. When Gess is around other people he puts on the "act" and appears to be doing much better than he is. He suppresses his cough, he turns into the comedian and makes jokes for everyone, he tells everyone he is okay. Then, when he comes home he collapses. I know that this is normal and that he does it because I am a "safe" person and around me and at home he is able to let it all out. But, it also means that there really isn't an escape for me. If I call in the troops, he will put on the brave face and tough it out. Then when the help leaves, it will all catch up with us. He'll end up sicker and I'll be completely overwhelmed.

So, I feel like I am it right now. I wish that I didn't have to work or at least that my work was less intense and I had less responsibility. But of course, that really isn't an option. It scares me to think about how things are going to get worse. I don't know how other people do it. I'm only working part-time right now but need to work full-time (and somehow be able to manage that!).

The kicker is that Gess doesn't think that I do that much. He has told me more than once that he doesn't see me as a caregiver and that I don't actually "do" much about his CF. And to some extent that is true. He generally handles his own treatments and medications, etc. I am not physically "doing" a lot on a day-to-day basis (except during this course of IVs when I have been more active in administering them), but I still feel completely overwhelmed by it. I feel like his health is the center of everything right now and that I pretty much look at life through CF-tinted glasses. All of our plans, from day-to-day schedules to trips to children to career, involve a consideration of CF. I handle the insurance stuff and follow up on calls, order medications, argue with the nurses, etc. He is in the hospital so much and I try to juggle visiting him, working, household stuff, and just sleeping. Lately it seems like we can't do much by way of social activity because he doesn't feel well (not that I am blaming him, but I'm just saying that it impacts me).

Not to mention the emotional roller-coaster that I am on. I am stressed about my work situation and his work situation. I worry about how we will make it when he get sicker. It kills me to watch him suffer, especially when there isn't anything that I can do to help. It scares me to think of the future and what is to come. I mourn the fact that I am losing my husband and a am scared about having to start over without him. I get angry at him for not taking care of himself and his self-medicating--and the way he treats me when that happens. Then I get angry at myself for not being strong enough, for not doing more, for not being enough. And I'm scared that I am not going to be able to do it. I am scared that I am going to break. It's terrifying. It's consuming. It's exhausting.

When I have mentioned Gess's comments to some of our mutual friends they all think that I do a lot...but I don't know. Am I making myself overwhelmed without cause? Am I actually a caregiver? And if I am not doing much now and feel like this, how will I ever be able to actually be a caregiver? I just feel like I am completely overwhelmed and on the verge of failing at any given moment. When an emergency happens, I go directly into "action" mode and do what needs to be done, but when things calm down a bit, then I crash. I think that one of the problems is that there really hasn't been time to recover. Things have been pretty non-stop drama-wise for more than 2 years. A friend of mine just came back from living abroad for 6 months and when we were talking I was amazed at what has happened since then (to name a few, I started this new part time job with quite a bit of responsibility and some "big" tasks that I had to do, my father died, Gess has been hospitalized several times, we started the transplant evaluation process, and I started having panic attacks). When is it going to end? Or when will I just cease to be able to handle it. Honestly I don't want to know how much I can handle. I refuse to say that I can't take anymore because that seems to invite more. I don't want to get any stronger. I just want to have a long, drama free (or at least minimal drama) streak.

Man, ideally I would just be able to get away. To forget about all of the responsibilities and stress. I just read Eat, Pray, Love and find myself fantasizing about taking a trip like that. Even just one leg of it. Shoot...even just a couple of weeks!

**sigh**

Oh, and did I mention that we are supposed to be going to Colorado this week to visit Gess's family? I'm was looking forward to the trip, but I really don't think that it is a good idea for Gess to travel right now. Right now he is insisting that he is up for going--but he basically hasn't been out of bed for more than 15 minutes at a time for the past 5 days...so a flight just seems like a bad idea to me. But what do I know?

Still locked-up Update

So, Gess is still in the hospital. They are still keeping an eye on the blood cultures to see if anything grows in the other samples. So far so good on that front. The bad news is that Gess has continued to cough up blood. It has been small amounts...but it is still there. Yesterday he was running a low-grade fever, but that seems to have resolved.

He has been extremely bloated, which is uncomfortable for him. His stomach is noticeably distended and with the spleen pain he had earlier this was of concern. So, they did a CT with contrast today. His abdomen looks fine (thankfully) and the docs think that this could be an after-effect of the presumed virus.

The bad news is that they noticed a spot on his left lung during the CT scan. The pulmonary team is going to discuss this with Gess's primary CF doctor tomorrow, so we'll know more then. He also says that he feels worse today than he has, so that is not a good sign.

We hope he can come home soon, but at the same time, we want to make sure that they figure things out before sending him home. So, we'll see what tomorrow brings.

Trying not to freak...

Gess is inpatient (again!) and yesterday we found out that one of his blood cultures was growing something. It was only 1 day out or something, so this was just preliminary. And, it is totally possible that someone contaminated the sample, etc. But...part of me is totally freaked out. We have been down the blood infection route before and it is scary. Please, please, please let it be a contaminated sample!

UPDATE: It is most likely a contaminated sample. Only 1 out of 4 samples is growing this (which appears to be MRSA) and the other 3 are clean. We'll have to wait it out to be sure, but I am feeling so much better about it.

A ray of hope

We had a really great day on Saturday--my Gessner was back! It was so refreshing to be able to just hang out with Gess and enjoy the day. We drove up to Gig Harbor (about 45 minutes from Seattle) just to explore. We decided that we want to take more of these little exploring trips. While walking through town we found a yarn store and noticed that a yarn shop hop was happening that weekend. Gess asked if I wanted to do it, so how could I say no? :) We ended up going to only 4 of the stores, but that was enough. I got a few free patterns and bought some yarn for a scarf (it is the coolest stuff...it ruffles!) and some for socks for Gess. I haven't been knitting much lately, but I guess I should start again :) I have lots of nice yarn just waiting for me.

I really hope that we have more of these "good" days. I have really missed him!

The beginning of the end?

My husband usually knows his body. When he says that there is something wrong, there usually is something wrong. He can tell when something is different and when he needs to go into the hospital. So, a statement that he made to me a few weeks ago has me very concerned. He told me that he won't make it another year. Wow. That floored me. I asked him about it the next day to see where the statement came from (e.g. if he was just having a really rough day, etc.). He said that he wasn't entirely sure, but it was how he felt. So, I recognize that the statement could have been a measure of how he was feeling that day, but deep down I worry that it is something more. And part of me has that feeling too. It is strange because he still works full-time, has the same lung functions that he has had for years (in the low 40s), doesn't need 02, etc., but he is definitely "sick." I see it and feel it. It is hard to quantify and a bit frustrating because his numbers don't quite correlate to what I am seeing and apparently what he is feeling.

He has mentioned transplant and we are starting the "talking about it" process. We have a clinic appointment in two weeks and that should be the main topic of discussion. That whole prospect scares the crap out of me. I'm scared that I won't be enough through that process. I already feel like I am not enough--and I think that Gess feels that way too--when he is semi-healthy, so how will I possibly be able enough through that process?

And then of course there is the question of whether he will even be a good candidate for transplant. His liver will probably not survive a lung transplant and his lungs would not likely survive a liver transplant...or at the least, the transplant teams would probably not want those odds. So that leaves us with liver AND lungs. There have been 37 in the U.S. according to UNOS. None at the UW. Should we go to another center? Move? Do I need to start studying for some other state's bar exam?

Should I have hope? Hope scares me. Should I stop thinking about it? I wish I could. So, I guess I will just have to try to distract myself until we can talk to the doctors and see how that goes.

Edward C. (Ed) Worthington Sr.

YAKIMA - After a short, valiant battle with lung cancer, Edward C. (Ed) Worthington Sr. succumbed on March 22, 2010 at Willow Springs. He was born in Yakima September 11, 1940 to Glenn Worthington and Belle Smith Worthington. He attended school in Yakima and enlisted in the Marine Corps after high school. Ed had several jobs after the Marine Corps. He worked as a roofer and as a chemical dependency counselor. His favorite job was working with disabled adults. Ed loved to fish and camp. He volunteered at Camp Primetime. He was close to his family and especially loved his grandchildren. Ed is survived by his loving wife Sherry and sons Robert (Bea) of New Mexico, Ronald (Deanna), David (Danielle), both of Yakima, Edward Jr. of Toledo, WA, daughters Lisa Worthington Brown (Mike) of Seattle, Della (R.D.) Osborne and Mary of Yakima. Ed is also survived by two sisters, Kathleen (Jim) Martin and Lora Urvina both of Yakima, and a brother Jim Worthington of Auburn, WA. Ed is also survived by many grandchildren, nieces and nephews. There will be no funeral services but family and friends are invited to a gathering to celebrate Ed's life at 12:00 noon Friday, March 26, 2010 at the LDS Stake Center, 705 S. 38th Ave.

Ed was preceded in death by his parents and infant son Brian.

Oue CF Year in Review 2009

Okay, there is no other way to put it...2009 sucked in CF land!! I just looked over Gess's (extensive) list of EOBs from our insurance company to see the damage and it looks like he was either in the hospital or on IV abx more than he wasn't. Hospitalizations were in the double digits. He had lots of hemoptysis and two embolizations (one they were able to embolize, the other was an attempt but they couldn't find anything to nuke). He has his first (and hopefully last) seizure. Add abx-related hearing loss, and you have our CF year in a nutshell.

Interestingly, his PFTs have remained pretty constant during this year...so I guess that is the upside. The sheer number of hospitalizations and exacerbations has me very concerned though. I am really not sure what to think about all of this, and quite frankly it freaks me out.

In addition to the physical difficulties, this has been a very trying year emotionally/mentally. Gess is trying to process through a lot of stuff, and I see that it is really wearing on him. I won't get into details since it is so personal to him, but it has been rough on both of us.

So yeah...add to that me losing my job, my dad getting dx with cancer, too many friends with CF dying...and 2009 was a really difficult year! And somehow, "difficult" does even seem remotely adequate.

I find that I am exhausted, physically, emotionally, and mentally. Gess is sick right now and on abx, so the trend is continuing. There are times when he seems ready to give up and it is hard for me to know what to do in those instances. Right now I just hug him and hold him and let him talk if he wants. But...it still seems like it is not enough. I don't know what else to do.

I am also finding that I am really angry (and when I saw "really angry" I mean wanting-to-punch-someone-anyone-rage). I hate feeling this way, but it doesn't seem to be going way. I had a huge breakdown the other night (think uncontrollable sobbing followed by yelling and wanting to punch something) and that seemed to relief the anger for a bit, but I find it coming back. The only thing that I can think of is that I feel like I have lost myself somewhere in all of this. I am sure that my job situation is a big part of this...but that is a whole other ball of wax for another long blog.

So, to end...2009 was not good...and I demand that 2010 be better :)

Words I hate to hear first thing in the morning...

or anytime really..."Lisa, wake up, I need to go to the hospital." That's what I heard around 6:00 am this morning. Gess woke up because his heart was pounding. He checked his pulse at in was in the 140s, which caused the alarm and the wake up call. It's kind of funny how I can go from a dead sleep to action mode in mere seconds. Gess checked his pulse again and it was a bit lower, 129. His 02 sats were low...around 90/91% on room air (when he is usually 97%). Then he started to vomit. After that his stats came up a bit and his pulse slowed some. BP is high. He decided to go back to sleep for a bit and then reevaluate. I really hope that this was just some weird 10-minute episode and that we do not end up in the ER/hospital today.

This Year's For me and you...

I just found a song that Paul dedicated to me on December 26, 2007, with the note "This year's for me and you..."

HERE

Thank you for your friendship Q.

Goodbye Paul

It seems a bit weird to say goodbye to someone through a blog, but considering I met Paul online, our relationship was mostly online, and he encouraged me to start blogging...this seems oddly important. So...here it goes...

Paul,

I didn't see it coming. I knew that you were sick and that were not doing well...but I never actually thought that you would die. You seemed invincible. I thought that you would get through this, maybe get new lungs...version Q.2 and that you would be around forever. It was wishful thinking, I know. But I hoped.

You were one of the first people that I "met" on the cf.com board. I don't remember how we started talking outside of the group, but it just seemed right and seemed like we were destined to be friend. I remember all of the talks, some very serious, and others very silly. I know that we talked about relationships a lot. Some of the discussions were difficult...talking about the realities of CF. In some times I think that I looked at you as what might happen to Gess in the future. And sometimes that scared me, but it was also some way comforting.

I feel like you were my passport into the community in a lot of ways--like you "vouched" for me and said, "she's okay, even though she is not a cystic." I felt at home in the community...more like I belonged than I have ever felt before. More accepted and more cared for...even though I don't share your mutations. So I thank you for bringing me into that community and helping me stay there. It has meant so much to me...I can't even put that into words.

You also got me writing again. Our blogs on Yahoo 360...blogs that I lost. but ones that I wrote rather personal stuff upon, knowing that only you and a few others would read them. Blogs were I really started to open up and address some of the demons in my past. This was the start of the work that has lead me to where I am now...dealing much more capably with my family and with myself. I also want to write. Someday you will be able to find a book with my name on it on the shelves of a book store. And this is because of you. You started the process...and now I will take it and finish is.

We talked about a lot. Hockey. Music. Meditation. Cycling. Books. And more. I guess it really didn't matter the subject...there was just a comfort in talking. You were my friend and I liked spending time with you--even it was all virtual.

And then we did get to meet...Heartland Cafe. Sorry we were late...never stay in the suburbs of Chicago...not worth it! I was nervous about our meeting. I didn't know if we would "click" in real life or if it would be weird. I didn't know how Gess would respond. And I didn't even know that Tiffany would be there. But once I got there, it was great. You looked great. You looked happy and healthy. Much better than I had expected considering how I had heard you were doing. I enjoyed our brunch a lot and I wished that we could spend more time together. But...you had company, so we went our separate ways. I wish that we have taken a picture. I had my camera and my iPhone, so I had no excuse.

It was hard to say goodbye, but we were back chatting the next day and things were fine. Friends. Laughing, sharing, commiserating. I think that a lot of the reason that we got along so well is because we are so alike. We both live in our heads a lot. We think, think, and think. Over-thinking everything. Dwelling. Analyzing. Questioning. I think that we were both a little melancholy--ok, maybe a lot. But it worked. With you I was sad Lisa at times. Processing through a lot of the stuff that I have, in part because of my crazy family life, in part because of my low self-esteem, and in part because of the way this disease is eating me up inside. You thought a lot about how CF affects geneotypicals involved in relationships and so I felt safe telling you my struggles. Talking through some of those things has really helped me...some of it scared the crap out of me...but it is the life I have and it was nice to be able to compare notes with you about it. I will definitely miss that.

I know that we hadn't talked a lot recently, things have been crazy in my life and I think that you sensed that and gave me some distance and I was so wrapped up in everything that I didn't reach out more. But I can't think about that now. I know that you knew I loved you and I know that you loved me. More conversations certainly would have been nice...but we will have to save those for another time.

I will never forget you. Last night I was reading a book and though "I can't wait to tell Q about this." And then reality hit that I couldn't tell you. I wonder how long that will happen...how long you will be the first person that I think of when something happens. The reality of the situation sucks. I want to tell you about this book and listen to your analysis of it. We never talked about the book we were reading together...it sort of got pushed to the side with the entire pepe drama. But I still have it on my shelf. And every time I see it I will think of you.

I thank you for your friendship, your love, you insight, and your humor. I listen to some of your music and can't help but smile. You were so wonderful and you will be so sorely missed.

I hope that we meet again and can have those conversations. And that bike ride. Until then, I will hold on to the fond memories and hope for those times to come.

Tonight I sing to you "I'll Fly Away (Cystic)" and "Pepe's Song." I don't want to let you go, but I know that it is time...so go my dear friend...fly away to that place where joy will never end...

With much love,

sad lisa

Sad Lisa

Sad Lisa by Cat Stevens (Click HERE to hear)

She hangs her head and cries in my shirt,
she must be hurt very badly,
Tell me what's making you sadly.
Open your door, don't hide in the dark,
you're lost in the dark, you can trust me,
'cause you know that's how it must be,

Lisa Lisa, sad Lisa Lisa.
Her eyes like windows,
tricklin' rain upon her pain, getting deeper
though my love wants to relieve her.
She walks alone from wall to wall, lost in a hall,
she can't hear me, though I know she likes to be near me,

Lisa Lisa, sad Lisa Lisa.
She sits in a corner by the door.
There must be more I can tell her.
If she really wants me to help her,
I'll do what I can to show her the way,
and maybe one day I will free her,
'though I know no one can see her.

Lisa Lisa, sad Lisa,
Lisa Lisa, sad Lisa Lisa.

I miss you Q.

Another rough week

It has been another rough week. We did receive confirmation that Gessner (and by proxy me) had H1N1. Luckily, he seemed to get through that okay, but now has a cold or something else going on. The biggest issue that is going on is a mental/emotional battle that he is facing. He is tired of being sick and it has been really hard. I don't know how to help and am finding myself incredibly frustrated in this whole thing. I guess it is related to his frustration, but he is not doing much by way of treatment right now. He is supposed to be on IV cefaphime and inhaled Tobi and he is not doing either. I actually got really angry about this yesterday and yelled about it when he woke me up in the middle of the night. He doesn't have an answer as to why he is doing this and it is frustrating. I want him to be healthy--not just for himself, but for me too. This whole year has been so draining on both of us and now it is getting worse. I am not sure when he is going to come out of this or if he is or what to do. Simply put, it is incredibly frustrating. I know that he is frustrated and I certainly am as well.

Last weekend the brother of one of my closest friends was killed in a car accident. It is a difficult situation because of a strained relationship and family drama. So, I have been worried about her.

Then today I got a message from my aunt saying that my dad was back in the hospital and not doing well. He is dehydrated and has lost too much weight. She said in her message that it wasn't looking very good (in case we wanted to come). So, I came over to Yakima tonight. I didn't let Gess come with me because he is too sick. He doesn't need to be in the hospital to get exposed to more germs, and really my dad doesn't need to be exposed to the germs that Gess has. It was hard to leave knowing that Gess is struggling, but I felt like I needed to come here and Gess supported that decision.

Apparently my dad is fighting and says that he will walk out of the hospital, so that is a good sign. He was able to eat a little today and they are hydrating him. They are going to put in a feeding tube on Monday and he will have his last radiation treatment then as well. If he can gain 5 pounds, he will be able to get his chemo treatment on Wednesday. I am not sure what else or if any of that will change. I got into town too late to go by the hospital, so I will have to wait until the morning to get more information.

My plan is to do family stuff here tomorrow (my mother is also depressed, so I need to talk to her) and then head back to Seattle on Sunday morning. We are supposed to have a big group photo shoot with friends, which I am looking forward to. Then on Monday, I will go to the funeral to support my friend and then come back to Yakima if necessary. **sigh** I'm tired just thinking about all of this!