Happy Halloween

Day 115. Wow, going on four months. To be honest, I can't believe how little time has actually passed during all this. It feels like I've been locked up for years, where in reality I've only been really sick since May. So, I'm not like a John Hinckley, but more of a Martha Stewart.

Operation "Lasix 160" ended up to be a failure. Upon taking the higher dosage, I ended up feeling sick again. With no appreciable fluid loss. So after two days I reverted back to 120mg again. I guess the water in my legs is here to stay.

But my desire to rid myself of the fat feet has led me to find alternative ways of keeping the swelling down. This is what I found that has worked for me.

• If I sleep on my back and prop my feet up with a pillow, the fluid will flow out of my feet and into my legs while I am sleeping. When I wake up in the morning, my feet almost look normal. It's temporary, but if it loosens up my ankles for a few hours, then I'll do it.
• If I put on shoes as soon as possible in the morning, my feet do not swell up as fast as if I walk around the house in slippers. It also increases the chances that I'll be able to put my shoes on!
• Many people with moderate to severe edema use anti-embolism stockings, which are like regular ladies leg-high stockings, but very, very tight. They make it difficult for the fluid in your legs from settling to your feet. I've got a pair that I've been trying out, and I find that it does work, and not too uncomfortable. Any solution that improves circulation and fulfills my cross-dressing tendencies seems like a winner to me.

The energy level is slowly coming back. Yesterday I got up early and went the whole day without stopping, visiting friends and doing chores. Of course, today I feel like I've been hit by a truck, but it was worth it. I feel that challenging myself by pushing my limits is the only way I'll gain my strength back.

Happy Halloween. Save a Reese's Peanut Butter cup for me.

Kevin

While I performed my daily visits to the amyloid wing this summer for treatment, I was able to befriend a number of other amyloid patients. Meeting others was not difficult for it is a very small area in the hospital. You're bound to run into someone while shuffling down the hall, or be woken up by someone snoring loudly in the bed next to you.

I met Kevin and his wife, Diana, near the beginning of my treatment. It took me a while to remember their names, as when we did occasionally meet, I was zonked with lots of drugs. However, I do remember the disbelief in hearing that his story began like mine nearly 3 years ago with his amyloid discovery, and that he had been on numerous treatments since to slow the progression from amyloid from his body. If you saw his kind and gentle demeanor, you would find it hard to believe what this man (and his caregiver wife) had gone through. He was fighting the good fight.

So it made me very sad to hear from Diana this morning that Kevin passed away yesterday.

Day + 111, Tidbits

The amyloid wing over at Boston Medical has been very busy, and the treatment calendar is fully booked for a couple of months. This is due to both an increase in amyloid patients, and as a side effect to a new treatment which keeps patients in the hospital for a longer period of time. To beat the rush, I already set up appointments for my six-month evaluation. They will be held on January 24th.

In my lamenting over my lackluster lab results, I forgot to mention a development that I am happy with. Since my numbers have normalized somewhat and my immune system has kicked in, I no longer have to wear the mask. This is great news, as I was expecting to wear it for some time. Of course, I still need to be careful, and I know I won't be traveling by subway for quite a while.

I started my higher dose of Vytorin tonight. I probably will be scheduled to go back to BUSM in two weeks to see how the medication is affecting my high triglyceride levels.

As my energy level has improved slightly over the last two weeks, I will also attempt to move my Lasix dosage back up to 160mg daily to see if I can handle it.

My 3-Month Evaluation, Part II

Sometimes, the best movies are those that keep you guessing what is going to happen in the end until the very last moment. Everyone once in a while, you'll watch something that gets you ready for one of two possible conclusions... then at the last minute the movie shifts and produces a completely different ending altogether. "Wow", you say as you leave the theater. "I never saw that one coming".

Unfortunately, these plot twists aren't as enjoyable when you apply them to real matters of life and death.

It was good to talk to my new 'official' nephrologist, who was amazed at my annotated graphs. There were no surprises on how I should proceed with my diuretics. I was told that total removal of fluids was not possible, and that I should 'stay the course' with my current regimen of Lasix, unless adjustment is needed.

And then I got to speak with Dr. Rosenzweig, one of the doctors on the amyloid team. Dr. Rosenzweig is sort of like the press secretary of the team, who takes your results and tells you the good or bad news, spinning it accordingly. I didn't want spin... all I wanted to know was (a) how my kidneys are doing, and (b) how were my light chain ratios. I got some answers, but not exactly what I expected.

First, he gave me the bad news:

• There has been no reduction of protein loss from my kidneys. I am leaking the same amount (actually, a tiny bit more) than when I was evaluated in May. As a result, my body is producing abnormal amounts of cholesterol and triglyercides. They are very, very high -- much higher than they were in May. Who heard of someone having a cholesterol rating of 571?
• The triglyercide levels in my body are so high, they threw off the light chain tests. The data that was returned from them are worthless. I will be unable to get any idea on how I am doing through these tests until these levels are reduced.

Very depressing. But let's look at the bright side:

• My vitals and blood cell counts have all normalized since I was discharged. The white blood cell problem I had in August has disappeared.
• My potassium levels are fine.
• Albumin and protein levels are low, but not abnormally so.
• Creatinine levels in the kidney are normalizing.
• If the amyloid is still being produced in my body, it hasn't affected my heart and/or liver yet. Tests for both of these organs came up normal.
• While not optimal, is it not unusual to see no change in protein loss after 3 months. Usually improvement trends can be marked after 6 months, and noticeable deduction is observed within a year.
  

Wow... I never saw that one coming. I left the hospital today with no conclusive evidence either for or against the success of the treatment. All I wanted was a sign, but instead I got mixed numbers and a stronger Vytorin prescription.

Where do I go from here? Well, I need to get rid of the triglyercides. I will be evaluated very closely now for changes. The goal is to reduce them by January so that at my six-month evaluation they'll be able to do the tests properly. My prognosis? I guess we won't know until January.

A Picture Share!

Waiting in the registration area. To sleep or not to sleep, that is the question.

Health Insurance Is Good

I think the receipt speaks for itself. Here's one of the many refills that I need during the course of the month.


I now am heading off to BUMC for meeting with my nephrologist and an amyloid team doctor to discuss my lab findings. Stay tuned.

My 3-Month Evaluation, Part I

Today was the first day of my three-month three-day evaluation (say that ten times fast). For high-dose chemotherapy patients, the purpose of the three-month evaluation is to check the patients health for residual effects from the chemo, and to get a preliminary glimpse on how well the treatment worked.

I arrived at Boston Medical around 11 am. It was a little strange to be back here, standing on the floor which I had come to on a daily basis for nearly two months. I saw the same doctors traveling the hallways. None of the patients on the floor looked familiar. In the amyloid section, all of the beds were stocked with new patients, their caregivers sitting beside them.

My treatment was not as formal as it was when I was discharged 8 weeks ago. I checked in like a regular patient, and had to sit in the common waiting area (where I met a few other amyloid patients). Shortly thereafter, I was sent into a lab for an EKG and to have some blood work performed. Some lunch, and then more waiting. In the afternoon, I met with two doctors who are on the amyloid team, who asked me questions about my health and well-being during the 8 weeks that I was away. Before leaving I headed down to radiology for a chest X-ray, and by 3:30 pm I was done.

---

Wednesday is the big day, as I'll see my nephrologist and get back the results of all of my blood tests.

One of the things that they are checking is my light chain count. Although this does not show amyloid production per se, it is an indicator of amyloid production in my body. We are hoping for a normal ratio of a certain light chain (I'm simplifying here, but you get the point.)

If the ratio is normal, this is a good sign. A normal ratio generally means no more amyloid production, and increases my chances of a diagnosis of complete remission in January.

A note: Remember, there is no cure for amyloidosis, so the doctors go out of their way not to use the term 'cure' with any of their treatments. Instead, they'll use the term 'complete remission' for patients that have had their disease eliminated from their bodies.

However, if the ratio is high or above normal, then we've got a problem. An abnormal ratio usually means that amyloid production is still occurring. Needless to say, that would be really, really bad.

As you can see, Wednesday will be a big day for me. But alas, I must wait. Tomorrow will be a light day. No doctor appointments, but I will need to return some urine and stool samples. Tuesday is also support group meeting day, so I may get to see some old friends. Or perhaps, make new ones.

Day + 105, Miserable Fridays

Not that I've been partying like a rock star these last few weekends, but I noticed that Fridays tend to be miserable days for me. This Friday is no different; I'm suffering another slight fever, and my insides just don't feel right. I've also been sleeping quite a bit these last few days. All this laying in bed has had a positive effect on my edema. Too bad I don't feel well enough to walk around and take advantage of it.

The first of my three days at Boston Medical start on Monday, and I can't wait.

Day + 103, Glassware Terrorism

For the last three days I've attempted to make a concerted effort to keep moving in hopes to normalize my energy level. On each day I find myself able to trudge along at normal speed until about mid-day. At this point, I'm pooped and find myself going into the bedroom to lay down for an hour or two.

There could be many reasons for my low energy level. No doubt that some of this fatigue is a result of my body's recovery from the procedure. Part of it could be a result of laying around doing almost no physical activity for three months. And I guess a little bit could be from walking around with the edema, which has edged up slightly in the past week.

Since I am hoping to return to work at the end of the month, this lack of energy is making me nervous.

I was able to get my work clothes and shoes out of storage the other day. Just for giggles I attempted to put on my dress shoes, just to see if I could squeeze into them. Ummm, not going to happen. Like trying to stick an elephant into a tutu.

---

By the way, I had an attempt on my life today. It was two in the afternon, and it was time to take my medicine. I had gone into the kitchen to get a glass of water. I took my medicine and proceeded to go lay on the couch, when I remembered that I forgotten to write down in my log that I took the medicine. So I put the glass on the table and went to my bedroom to make the recording.

I then returned to the living room, and as I walked in front of the table, the glass I had set on the table made a 'pop' noise and exploded. No, not just a crack -- the glass blew up in all directions, with me in direct line of the shrapnel. I shood there for a couple seconds in shock, not believing what had happened in front of my eyes. Don't believe me? See for yourself.


Now, I've never seen anything like that happen before. I can only conclude that this was an attempt on my life by forces unknown. I keep telling myself that if I can survive this disease, that I can certainly foil these assasination attempts. But to be safe I'm now switching to plastic.

Day + 101, The Experiment

Yesterday was a very good day, and it marked only the second day since the transplant where my energy level was anything close to normal. Taking advantage of this, I was able to stay on my feet most of the day.

Excited about this new source of strength, and eager to get back to my old self, I decided that today I would attempt to do a dry-run of a living a normal day... you know, one that doesn't involve spending 4 hours laying down in front of the TV watching the Discovery Channel.

The experiment got off to a good start, as I woke up at 6:30 in the morning, full of vim and vigor. Hopped in the shower and dressed by 7:30. Went for my morning walk, then back for breakfast. At 9:00 I started to do some alternating work on the computer and cleaning up of my room. Man, when I move, I can move.

I was able to consolidate and pack boxes of medical supplies that I collected and bought over the last few months. Latex gloves, masks, band-aids, Q-tips, all different types of drugs. Pulled out what I needed and packed the rest in case I need to go through this again. Just as I was finished, I started to get sick from the over-activity.

So, for me, it's back on the couch watching TV this afternoon. Maybe I'll try again tomorrow.

Day + 100, Sunny Days Are Here Again

Alas, we have reached the big one-oh-oh. Speaking in days became ridiculous quite a while ago, but now with three digits, using this notation seems more suited for an Aruba disappearance or an Iran hostage crisis.

The fever and sickly feelings which plagued me for the last few days are going away. Even the eye is clearing up. The sun is out for the first time in eight days, which definitely affects your mood in a good way.

The jury is still out on whether 120mg of Lasix is going to hold. I've gained a few pounds during the last few days, but some of that may actually be real weight. The goal is to hang on until next week.

On October 24th, I begin the first of a three-day evaluation at the Boston Medical Center. It is my "three month" checkup. Appropriate members of the amyloid team examine me, and I undergo a suite of tests not unlike when I went in for my original evaluation in June. Although the doctors cannot make an official diagnosis for another three months, the visit allows doctors to get preliminary results, and deal with any ongoing issues.

To deal with the edema, there is one more card that the doctor can play -- an ACE inhibitor. These drugs, typically used in heart failure and hypertension, also can work in reducing sodium in your system. They could really reduce the fluid in my body, but then again, they could also carry severe side effects. Based on my lab results next week, they may try me on one. I'm a little nervous about them, but I'm willing to try anything to get off this 'fluid' roller coaster.

Day + 98, My First Fever

Since yesterday, I've been feeling miserable -- but it a different way than I have been previously. It all started yesterday morning, when I woke up with a crusted and itchy right-eye. Fearing that I may have gotten conjunctivitis, I've been taking caution not to rub it, and putting a hot towel on it on occasion.

Then last night, I started to feel warm and run-down. I took my temperature to discover that I was running a very slight fever (99° F). Otherwise, my mind was sharp and I was feeling okay.

This morning it seemed like my right eye was calming down, but I still feel run down, and my temperature hasn't changed. It's apparent that I'm fighting something, which is actually a good sign as it is an indication that my new immune system is working. The danger is that my system could be still too immature to handle whatever it is fighting, so I need to constantly check for a high fever.

The Rx: Take it easy today, and check for any changes.

Day + 97, Scraping The Bottom Of The Barrel

Astute readers will recognize that I haven't been complaining at all about the edema for the last week or so. While part of this is due to the fact that the name of this site is "Tony's Amyloid Blog" and not "Tony's Edema Blog", but mainly for the fact that the 160 mg of Lasix has been working wonderfully. But to those who missed reading my rants, I promise to make you happy today.

Ever try to finish a drink with a straw? Everything's fine and dandy until you are almost finished, and you've got that last bit in the glass. No matter what you try, it evades you, and all you do is pick up air. Not to mention making those large suction sounds. After trying for a couple minutes you start hyperventilating, and you give up.

This is what's happening with my edema. I've got it down to my ankles and feet, but I'm unable to remove anymore. Blame it on gravity, I don't know... but the feet remain swollen no matter what I do. Of course, I could lay in bed all day to even them out, but that's not something that I'd like to do (or can do, as I'm trying to get myself on a regular schedule).

What is happening is that since the medication can't get this last bit, it's starting to take fluid from the rest of my body, which is leaving me dehydrated, drained and sick every night. This is the same thing that happened with the Zaroxalyn, although it was more pronounced.

I contacted my nephrologist this morning on this recent development, and he believes that I should cut back on the medication -- back from 160mg to 120mg. Hopefully this amount will provide the balance between keeping the fluid off and being sick. It is crucial that I get this straightened out before I am ready to get off of disability.

FoldRx launches Phase 1 study

FoldRx Pharmaceuticals Inc. of Cambridge has initiated a Phase 1 clinical study with its lead candidate, Fx-1006A, a small molecule compound with the potential to treat genetic disorders.

FoldRx is a development and discovery company focusing on first-in-class disease-modifying small molecule therapeutics to treat diseases of protein misfolding and aggregation (amyloidosis).

Found at Mass High Tech

Stem Cell Aphresis

Over on Beth's log we've learned that she is now undergoing the stem-cell extraction. Her posts are interesting as she provides the pictures of some of the aphresis machinery that performs the operation. The machine that worked on her is different from the one that worked on me.

During this step of the treatment, the goal is to collect enough stem cells to reintroduce into your body after the chemotherapy destroys them. According to my treatment protocol, they use at least 7.5 million stem cells to reboot your immune system. The protocol can be performed up to two times on a patient. So the goal is to extract 7.5 x 2 = 15 million stem cells.

You may be interested in how it works. A nurse will first connect you to the machine via a catherer (or catherers). It may be installed it your arms, or they may optionally install one in your chest if the veins in your arms are not "Grade-A" quality.

There are two lines running from your catherer: a line-out and a line-in. (Yes, while connected, I also feel like a piece of home audio equipment.) Here's a picture of the nurse connecting my catherer during my stem cell collection:


Once you are connected, they insert a quarter and the machine starts up. (Just kidding about the quarter... it costs much more than that -- trust me.) The machine, which consists of pumps, a certrifuge and a lot of tubing, starts to whirl and suck the blood from your line-out connection. It then traverses through the aphersis machine, which looks like a prop from an old Star Trek episode.


Then the stem cell extraction is performed. In the base of the machine is a cylindrical container which spins very quickly, like your dryer. The blood enters the cylinder and is spun around. Because some cells in your blood plasma weigh differently, the centrifugal force will cause the blood to separate. The stem cells, which I believe are heavier that the remainder, are separated and collected in a bag. The stem cell mix is always changing, so a nurse will stay by the machine during the entire process to make sure the container is rotating at the right speed.


The remainer of the blood is sent back through the contraption.

In the second picture, you can see a white container near the upper-left corner. This is a heater, which is connected to the end of the machine. The tubing is looped around this device many times. The blood exits the machine and is kept there until it is warmed up to body temperature. It is then returned to your body through the line-in port of your catheter.

The entire process takes quite a few hours. All you can do is wait, or sleep the time away until it finishes. It's not too bad, but between the process and the waiting, it really tires you out.

So there you have it. Class dismissed.

Edema Graphed

For the first time in five months, I was able to put on my walking shoes. It was a tight fit, but that is definitely progress.

One of the things I mentioned to Beth the other day was about the importance of tracking your progress. I've been surprised how little I've been consciously aware of how much healing I've been doing over the months. It is only when we take a birds-eye view that we can put a face on the progress (and setbacks) that I've experienced.


This is a graphic representation of my fight with the edema. I started recording my weight each morning over two months ago. By looking at this chart, you can see the effectiveness of the Zaroxalyn, the consequences of not taking the Zaroxalyn, and, well, that right now I'm one skinny dude.

The slope at the beginning is not a mistake -- it was estimated that at its peak I was carrying 40 pounds of fluid underneath my skin. Take my word for it... not a pleasant feeling.

Day + 94, Getting The Upper Hand

Even at 94 days out, I still have horrible days. The days which you feel miserable and want to stay in bed under the covers.

Yesterday was one of those days. The cold and rainy weather brings everyone down to some degree, putting people in a panic and inspiring runs to the store for chicken soup. I spent most of the day under blankets and my trusty flannel shirt to avoid getting one of those "change of the seasons" colds. I got a little worried when I started to feel a tingle in the back of my throat last night, but whatever that was, I believe I nipped it.

I'm pleased to say that for the first time post-treatment, that my edema is no longer my Public Enemy #1. This increased dose has knocked off 4-5 pounds, which has brought the edema to mostly below the knees. It's only a couple of inches of difference -- but it is a big one. The removal of fluid from behind the knee has given me more mobility and it is much less stressful to walk. My feet and lower legs are still balloons, but I am in a better position than I was these last few weeks.

Now that the edema is sort of contained, fatigue is my major issue. I still get awfully fatigued, especially after eating a big meal. If I move around and work at "normal speed" for a extended period of time, I begin to feel nauseous.

The next step is to getting my body used to the rigors of a standard work day, so that I can get off of disability and return to work. I don't know how to expedite this recovery, but I am trying to by eating healthy, getting excerise when possible and trying to reduce the amount of time laying in front of the TV. This will truly be a process that I will need to take one day at a time.

Day + 92, Two O'Clock

2:00pm. It's that time of the day, unfortunately. I make my way into my bedroom, looking for my bag of drugs. What I'm looking for is a bottle with the letter "L" on its cap. Having been given so many prescriptions these last few months, I've found it easier to mark each bottle with a letter of a symbol of the drug inside. Besides, it seems more exciting to say you're "snagging some L" as opposed to "where's the Lasix?"

I'm in the big leagues now; each one of these babies contain 40 milligrams a piece of the stuff. I'm reminded how as a result of my visit to nephrologist yesterday, I now take four instead of three. He's still uncomfortable managing my care, especially because I will be going back to BMC in two weeks for a three-month checkup. For now, I will just have to live with 160mg of Lasix daily, and hope that it will keep me until the 24th.

Lasix is an interesting diuretic. It's purpose is not to aggressively remove excess fluid in the body, but to maintain a certain level and keep it there. For people like me with bad edema, raising the dose does get a little extra out on the first day you take it. After that, it will keep you where it left off. The good thing is that it doesn't stay in your body and make you sick all day like some other water pills.

Lasix works best when you lie down right after ingesting it. It helps the medicine work by making it easier for it to pull fluid out of your body. I should stop blogging and start sleeping. More news tomorrow.

Soy Compound To Prevent Amyloidosis?

A compound called genistein that is found in soya beans could prove useful in the prevention of some forms of amyloidosis, report scientists from the Scripps Research Institute.

Read about this development here.

Day + 90, Hurray! (I Guess)

After making a strong showing this summer, and here we are stumbling to the finish line. We barely made it through in September, and these last two nights have been depressing to watch. Things should be much better.

No, I'm not talking about the Red Sox stumbling in the post-season playoffs. I'm referring to my recovery under the tight grip of Dr. Edema and his Fluid Henchmen of Evil.

To be honest, I didn't have an idea of where I'd be three months out when I started. I figured that at the very least that I'd be stabilized and starting to get back to real life. Today was scheduled to be a happy day, where I would smile with a cigar and cognac in my hand, with the knowledge that we had, in fact, finally been bathed in the light at the end of the proverbial tunnel.

But, like management of a huge government project, I've spent too much and I'm way over schedule.

Now that I've got the drama out of the way. Although the edema has postponed my recovery for a bit longer, I am feeling better than I did in June when I started treatment. I'm no longer chronically tired. The color has returned to my face and I'm starting to fill out. Heck, it even looks like my hair is starting to grow back. To say that I have not progressed in the last 90 days would be a lie.

My final obstacle is finding the right combination of water pills to get my body at a level that I can function again. Once I have that in check, I can earnestly begin to rebuild my life again. I see my doctor tomorrow, so hopefully we'll have some answers (and real progress) soon.

Day + 89, Paging Amy Lloyd

Beth was diagnosed in July with Primary Amyloidosis. Like most amyloid patients, she started out with some strange symptoms and underwent the cycle of visiting different specialists who couldn't diagnose the issues she was having. Then, she got lucky and found a doctor who knew about amyloidosis and made the link.

I've had the pleasure of conversing with Beth over the last few months, as she underwent the search to find a treatment center and set up an appointment for treatment. I was pleased to hear that she found a treatment center close to her home. But I was also excited that she has decided to share her experience with the rest of the world through a blog of her own, Paging Amy Lloyd.

Beth, in celebration of the start of your treatment and your blog, allow me to impart some of the wisdom that I've learned during my treatment these last few months -- things I wish I had known when I was in your shoes this summer.

• Learn to accept that during your treatment, things may occur unpredictably and out of your control. Your gains, your setbacks -- none of these things will be on any schedule. If you're a control freak like me, this will be all very frustrating. Treatment and recovery is a long process. Clear your calendar, and let your body pace your recovery. Let go of your outside worries and focus on you and your health... it will make things go smoother.
• Never underestimate the power of a positive mental state in your recovery. It is more powerful than any drug or doctor could ever be.
• While you are in the hospital, seek and befriend other amyloid patients. Speaking with others in our condition is very enabling and will give you strength.
• Record all your experiences -- even the bad and horrible ones.
• The drug Ativan will be your friend. Use it often. Whenever you are feeling bad, take one and go to sleep. Repeat as necessary.
• Be sure to keep a paper journal. Record things such as what drugs you took and at what time. You need this because you will forget sometimes. Keep track of which doctors and specialists you saw. This is necessary to because you will see a lot of them, and when the bills come you'll want to remember on what days you saw which people. Record stuff such as weight and how you feel each day. This is necessary to remind yourself of the progress you are making with your recovery.
  
• Draw on your friends in your support network -- don't be shy to ask for help or favors when you are in need. They will want to help you, and you will need to be helped during this process.
• Learn to like hospital food. In the end, everything will taste like chicken.
  
• Never, ever give up. Fight the good fight.

I encourage everyone to check out Beth's blog and wish her the best!

---

Nothing as dramatic on this end. I'm three months out, after all. The good news is that my weight is high but stable until I see the doctor on Friday. On Monday night I took 120mg of Lasix, and boy, was that a shock to my system! I lost 4 1/2 pounds in 24 hours. If my kidneys work any more overtime, I fear that they may go on strike.

But the funny thing is that yesterday I took the same dose, and it didn't work as well. As a matter of fact, I gained a pound. But at least this higher dosage will hold me until Friday when I see the doctor.

Medication update

As a short-term solution to get my edema under control, my doctor has updated my dose of Lasix from 80mg to 120mg a day.

I'm also pleased to say that I'm now off of Protonix, which I was taking to handle stomach acid while my stomach was recovering from the chemotherapy.

So, including the Lasix, l'm down to 3 drugs a day. It's almost manageable now :)

Day + 87, Bloating in Beantown

It's offical -- I'm back in Boston. Goodbye, small town... hello big city.

The edema is back to a level where it is uncomfortable to sit for long periods of time, so the four hour ride home was not very comfortable. Add to that the packing, carrying of boxes, the unloading -- it wore the hell out of me. Thought my heart was going to explode.

I was greeted with a pile of mail that I must go through. I'm starting to get my first medical bills, my first insurance claims, and of course, my first insurance screwups. I envison that I'll be on the phone most of the day today.

Just got back from the hospital to have my blood drawn for my nephrologist here in Boston. The blood drawer (or whatever you call the person who takes your blood) made the observation that I've had my blood drawn so many times in the last few months, that I have scar tissue on the inside of my arm where I've been poked and prodded.

Although I'm not scheduled to see my doctor until Friday, I'll be calling him today to see if he can do something earlier about my edema. Although I've only gained a few pounds since I was put on the daily Lasix regimen, it has grown such that during the night it settles in my lungs, causing me problems breathing when I wake up in the morning. When I get up, the fluid falls out due to gravity and I am fine within a half-hour or so. But I would like to halt the fluid production before it gets worse. I'm even willing to go back on Zaroxalyn if that's what it takes.

Off to make a few phone calls.

Day + 85, Waiting For The Green Flag

And we're just days away from the three-month mark. When I was discharged from the clinic, I imagined that my recovery would be like a racecar being serviced in a pitstop. They'd change my tires, top my fuel, and by the end of three months I'd be out of the pit, back to the races. Now that I'm here, I find that I've got water in my tank and my crew went out to lunch.

Still no definitive answers with my Lasix. I haven't gained any weight in about 5 days, but I definitely haven't lost any either. While I'm not drowning in it like I was a couple months ago, it is bad enough to cause some circulation problems and fatigue. My morning walk feels more like a marathon.

I am confident that my weight gain has calmed down for time being, and if I can hang on for one more week, we'll get this taken care of.

It's a shame that I'm leaving New York in nearly the same condition that I was in when I came one month ago. My father and his wife will be driving me back to Boston tomorrow morning. I had planned being able to pack and drive back myself, but that never happened. I forsee a couple more weeks in this pitstop before I'm on the road again.