Day + 82, Watching The Scale

I'll say one thing: the weather this month has been very pleasant. Yet another cool, but sunny day. However, it was a little depressing seeing my own breath while taking my morning walk. That means three months from now, I'll probably be digging out my car from underneath three feet of snow.

But it is relaxing and refreshing. Most of my friends and family know that I lived in Iceland and traveled through Scandinavia between 2000-2002. You can find pictures from my adventures on my home page. This weather reminds me of a typical Icelandic 'summer' day. Warm enough to be comfortable, but not so that you're sweating all over the place. Since I've returned, I've learned to hate our hot weather, preferring the moderate temperature of the spring and fall months.

I've been taking breaks to check myself on the scales to see if this new Lasix prescription will hold me until I see my nephrologist on October 7th. Statistically, it's too soon to tell. Right now, it looks like it is almost working. My weight is same as it was Sunday night. I don't believe this dosage will remove my edema, but instead keep it in check until my doctor can come up with a better solution. I'm not so much depressed with gaining the weight back, but rather frustrated that I had made so much progress, and nearly lost it all.

I leave for Boston on Sunday morning, where I will stay with my stepparents until I decide what to do next. While their place is clean, they have two cats and occasionally watch their grandchildren. Since I have been living in a bubble all this time, it will be interesting to see if my body can handle this environment.

Day + 81, Fluid Dynamics

Unlike yesterday, today is a beautiful day here in Schenectady. Summer may be breathing its final breaths, and I'm enjoying it while I can. Every morning I'll head out and walk 6-8 blocks for some exercise. I'm not as limber as I was last week, but I can still walk it without getting sick or running out of breath. Imagine the scene in Rocky when he ran the streets of Philadelphia, except that I'm hobbling instead of running, and I have no hair.

I've been on the "Lasix once a day" prescription for only two days now, and it appears that while it is removing fluid, it is not removing it as fast as I'm putting it on. I may gain 2 pounds or fluid a day, and remove 1 1/2 pounds when I take the Lasix. If you do the math that's still 3 1/2 pounds a week, which is no good.

---

Peripheral edema is a common side effect for amyloid patients who taken damage to their kidney. During the beginning of your treatment, your body needs all the fluids it can get. If anything, you are fed more fluids on a daily basis for infusion of medicine and minerals that your body desparately needs. As a result, the edema goes unchecked, and you might gain 30 or more pounds in fluid alone. Veteran readers will remember my stories of woe.

Once you've stabilized, the doctors will help you bring it down to a manageable level. While the edema may only affects your appearance, carrying large amounts of fluid definitely affects your quality of life. Along with looking like a hot-air balloon, you have these other side effects:

• Swollen feet mean you cannot put on anything but sneakers and slippers.
  
• Blood circulation is hampered. This means your heart has to work harder to pump the blood. Sleeping becomes more difficult because your extremities fall asleep much easier. Sleeping on my side became impossible.
  
• Blood pressure is usually reduced, making those with hypotension miserable and sick.
  
• Walking becomes difficult. Running or jogging becomes impossible.
• Squatting becomes difficult. Picking up something on the floor becomes a project, and a source of entertainment for others.
• In severe cases, as the fluid builds in your legs, you can no longer dress yourself.
• All of the above is very frustrating and depressing.
  

Make no mistake -- the side effects of my amyloidosis are comparatively benign to other patients. Indeed, I'd rather have it affect my kidneys in this way than my heart, lungs or nervous system. However, dealing with edema in an amyloidosis patient is a serious issue that needs to be given more consideration and addressed by doctors as soon as it is safe to do so.

Day + 80, Battle of the Doctors

I've been getting nervous taking Lasix once every three days. I've taken it enough to know that this new prescription is only keeping the edema in check, not reduce it... and that's on the days I take it. I've been gaining 1-2 pounds of fluid each day on the days I take nothing.

My nephrologist called me back today, and I told him the bad news. He's not happy about taking responsibility for my prescriptions now that BMC has required me to do so. He hasn't seen me since before my treatment, and he's not comfortable with the data in my BMC labs. Making changes to a patient's prescription without sufficient information is dangerous, and that's what makes him uncomfortable.

I must admit that this tradeoff from BMC to my doctors is a little confusing and frustrating. I believe that since the treatment center had a team of doctors working on me until discharge, they should continue until at least the 6-month mark. This way we avoid the situation that I'm currently facing now.

I pleaded with my nephrologist to allow me to take the 80mg Lasix daily. While this will not reduce the edema, hopefully it will keep it in check until I am looked at. My nephrologist agreed, on one condition -- that I come back to Boston next week for labs, and to allow set up an appointment with him. With no bargaining room, I reluctantly agreed.

That means that this weekend, I'm going back to Boston. How I'll go about doing that, well, that's another story.

Day + 79, The Levees Have Broke

Well, that's not entirely accurate. Actually, it'd be more correct to say that the pumps lost their power and are no longer working.

Like I had feared, my trial with the Lasix only proved to be a failure. It had not worked previously when I was taking it daily, much less taking it once every three days.

I have gained 6 pounds since Friday morning, or 10 pounds since last Monday. My knees, lower legs and ankles are filled to the brim again. All progress that I've made since I arrived in New York 4 weeks ago has been erased.

Two steps forward, one step back. That's the theme with this recovery, and it is unnerving sometimes.

No doubt that I will be consulting with my nephrologist early Monday for another approach. I hope I don't have to get back on that god-awful Zaroxalyn again. But I'll do what it takes to get it under control. My kidneys are pretty beat up, and it will take some time for them to improve. I just hope that until then I'm not stuck between the choices of being sick and being immobile.

Day + 77, I'll Drink (An Ensure) To That!

By yesterday afternoon, I was getting frustrated that I hadn't heard from my doctor. I had promised myself that I was not going to mischievously skip another day, and as the clock approached 2 o'clock I started to get anxious. For the last month, I have been on a Zaroxalyn / Lasix diuretic regimen, a combination that helped my edema but also made me sick. The last couple weeks have been awful, as I have spent the days nauseated and with a poor appetite. I was removing fluid weight from my body -- but since I was not eating, I was also losing real weight. Taking the pills would have guaranteed that not only would I have a miserable weekend, it would probably push my ribs out another inch.

At about 1:45pm, the phone rang. It was my nephrologist.

Although it took a day for him to get back to me, I have to give him credit for dispensing advice to me without seeing me or having recent copies of my labs. The last time I saw him was in mid-May, when he sat me down in his office to give me the news that started all of this.

His advice: Get off of the Zaroxalyn... that's powerful stuff. I can't recommend modifying your Lasix until I see some labs. Try 80mg Lasix alone today and Sunday, then check in with me on Monday and we'll go from there.

When I heard these instructions, I immediately felt relief. However, this feeling quickly turned into anxiety, as I recalled my first experiences with Lasix in May when the edema started to take hold. First it was 10mg of Lasix to stop the spread. As my edema got worse, it was upped to 20mg. Then 40mg. For a week I started to manage, but then it came back with a vengeance. When I arrived at BUSM, it was upped to 120mg at one point. Eventually that dose proved to be ineffective. Ever since, the only way Lasix would work for me would be to take it intravenously or have it combined with an agent such as Zaroxalyn.

So here I am being told to get off the Zaroxalyn, the drug that was making the edema go away. I would no longer be sick, but would I now start gaining fluid again? I guess there's only one way to find out. I swallowed two 40mg pills and took a nap.

---

Yesterday evening brought a number of surprises. First, it appeared that the Lasix was working. Not with the tenacity that the Zaroxalyn provided, but it was working a little bit. Also, I discovered that I didn't have the nausea that usually came when I took it. My appetite returned in force, and I snacked. Oh, I snacked.

My weight has gone up 5 pounds since Monday morning, but the edema does not appear to be any worse (or better) since then. It's too soon to tell whether that extra poundage is real or fluid weight. Now that I have my appetite back, I guess we'll just eat and see.

Day + 76, Thinks and Drinks

No word from the nephrologist yet. I'll leave another message this afternoon.

In the absence of some 'official word' from a medical high priest, I decided yesterday to take matters in my own hands. Yesterday I didn't take my water pills as scheduled. I wanted to wait one day to see if medicine was indeed causing me to be sick. I am such a rebel. Hey, you have to realize that these last few weeks have been miserable. I've been on a cycle of two bad days, followed by one semi-okay day. It has been really bringing me down, and I wanted to have just one day without feeling miserable and depressed.

Yesterday went by as predicted. I got through most of the day without feeling nauseous, and I as a bonus I even had a good appetite. This is more fuel for the theory that the water pills are the culprit. However, I can't stay off of them for good; my kidneys have not healed, and I will start gaining fluid if I don't do anything. So, I will take my pills this afternoon -- but also take some potassium pills to see if they will counter the nausea. We'll see how that works out.

I was told going into the treatment that the recovery would not be a straight path -- that it would be more like going two steps forward, then one step back. It is those backsteps which can be the most frustrating and trying. I spoke with a friend last night, who among other things, reminded me of the power of positive thinking. I know this, but sometimes I don't practice what I preach. When things really look down and out, it's extremely important to keep your chin up and 'fight the good fight'. Your body's healing ability is affected by the feedback you give yourself, and in situations like these you need all of the help you can get. Smile. Find things to do that make you happy. Listen to happy go lucky music until your ears bleed. Do whatever it takes.

Here's some advice to other amyloidosis and cancer patients who are preparing to through chemotherapy. One major problem we encounter is that after chemo we are often nauseous and don't want to eat. Not only does this cause you to lose weight, but it reduces your nutrient level, which causes you to feel more miserable. While you cannot usually avoid losing weight during your chemo, you can provide your body with vital nutrients with nutrition drinks such as Boost or Ensure. For the last few months I have used Ensure Plus on and off as a breakfast supplement on days which I am otherwise too queasy (or lazy) to eat a real meal. I do find that it helped with my energy level when things were a little crazy. Of course, now that I've had it for a while I'm starting to get sick of it. But I digress.

Day + 75, Back To New York?

It's been three days since I took my last regimen of water pills, and while I'm not at the pinnancle health, I feel much better than I did yesterday. It's quite apparent that it is the water pills which are what are making me very sick and miserable.

I got a response from the people over at BMC this afternoon. Good news: They agree with me that the strength of the water pills that I am taking are now too much, and the prescription should be adjusted. Bad news: since I've been discharged, I'm no longer a 'patient' there, and the doctors cannot officially change my regimen for malpractice reasons.

You see, once a patient is discharged, treatment is handed off from the team at BMC to the patient's personal physicans. This would mean that I need to contact and see my doctors to get an official adjustment. I've placed a call with my nephologist back home in Boston for further guidance.

And this is what I had feared most when I came to New York three weeks ago -- that I might need to make the four hour trip back to Boston if I needed to see one of my doctors. My insurance is no good outside of Massachusetts, so I'd have to make the trip back home.

I'm awaiting a call from the nephrologist to find out whether he can change it over the phone, or if I'll need to go back to Boston to see him. I'm considering going back permanently if this is the case.

Day + 74, Chemical Imbalance

It's been three weeks since I made my temporary exodus to Upstate New York. I've been living under voluntary house arrest in hopes to expedite my recovery. However, things have not been progressing like I had hoped. First, the confinement and lack of social contact has been rather drab and depressing. Life goes on, even when you are not there, and the days fly by so fast I lose track on the calendar. Second, I am experiencing unpleasant side effects from the midodrine and/or zaraloxyn/lasix medications. I spend the majority of the day tired or sleeping, and midly nausated. This is worrisome, as about a month ago I had more energy and less of the 'sick days'. When I feel 'off' I get cold chills that go right down to the bone.

I spoke to my contact at the Boston Medical Center, and she agreed that I should not be feeling like this at this point of my treatment. Fatigued on occasion, but not to be as sick and miserable as I have been feeling. She will be conferring with one of the doctors there to come up with a gameplan. I'm guessing that they will be adjusting my medication -- maybe cut down on the strength of my water pills. I'll find out tomorrow.

Day + 73, Fluid Motion

It was nice to have half of a good weekend. Yesterday was my water pill day, and as usual I felt absolutely miserable all evening. It's a sick/nauseous/uncomfortable feeling that essentially incapacitates you from 2 hours after taking the Zaroxalyn until the time you go to sleep. As I've mentioned, the last few pounds of fluid are very difficult to remove. I'd give the analogy of scraping out dirt from the bottom of a plant pot; the dirt is so packed it take some elbow grease to get out. Come to think of it, I feel like dirt this morning. Time to head for my appointment with the shower.

By the way, I am making slow progress on my lower legs... they are starting to loosen up. My feet are also starting to look like feet. I finally see being able to remove this remainder with the pills, although it looks like it will be over the course of months, not weeks. No surprise here.

Until the three-month mark, I am voluntarily staying inside under 'house arrest' to lessen the chances someone will breathe on me and get sick. It's a little overkill, but I've heard other patients discuss their 'relapses', and I really don't want to take the chance. Stuck in my aunt's house, I'm like a hamster in a cage -- except that I don't have a hamster wheel and one of those fancy water bottles.

Here's an old article from the Pittsburgh Post-Gazette describing the benefits of stem-cell therapy in treating amyloidosis over the traditional chemotherapy options.

Comments

The comments section on the blog has started to become a target for spammers, so I had to make some changes to the commenting system. First, the comment box is now in a handy popup box, for your convienence. Second, I enabled the word verification system. When you enter a comment, you will be asked to type in a word displayed in a box. This is done to keep the humans around and the spambots away. Sigh.

Day + 72, Break In The Clouds

Saturday marked the first day in a week that I came out of the biggest 'slump' I've encountered thus far post-treatment. It's true that I've had some bad days during the last couple months, but nothing resembling a long-term miserable streak.

It's hard to describe what's been 'wrong' with me these last few days, other than to say that my 'body chemistry' has been off. And I'm not talking about sex appeal. I was very fatigued, my stomach was upside down and I had the chills on and off several times during the week. I'm writing it off to something I ate, a small stomach bug, or perhaps watching too much Fox News. Regardless of the cause, it was a horrible step backward and I'm glad that I turned the corner on that one.

I'm coming to the conclusion that it will be some more time before I can get back to anything resembling a normal lifestyle. I've been pushing myself to feel better, but it is a situation that is not really under my control. The fatigue, the edema and the stomach problems have been like dark storm clouds which have been raining on my recovery parade. Occasionally there are spots of sun which shine through these showers, but they are still too numerous to put away the umbrella -- yet.

My goal is to feel well enough to take a trip back to Boston next week for apartment hunting, with the intention of moving back there in October and resuming work at least on a part-time basis by the middle of the month. Fingers crossed.

Fear Is A Waste Of Time

I stumbled upon this article online which delivers sage advice to those therapy for amyloidosis (or cancer or other serious disease). I wish I had its wisdom prior to the treatment; it would have made the time period prior to the treatment much less stressful.

Day + 69, Breaking The Chains Of Plastic

Every Tuesday since I was discharged from the Amyloid clinic, I've sent a brief e-mail to my contact at the BMC giving a synopsis of my health for the previous week. It's also the opportunity to ask questions or express concerns about how my health is progressing. Every week I complain about my slow progress and how I feel like I am not getting anywhere, and every week I get a response that I am doing a great job and "keep up the good work". Umm, thanks.

As you know, a couple days ago I brought up my need to always carry around my dear friend, the urinal. I must confess that it's really bothered me ever since. Our relationship has been sort of like a person you befriend because of shared circumstances, and you welcome them into your life with open arms, and then a few months later you're yelling at them for eating all of the food in your refrigerator. I felt a strong desire to let go. This friendship was no longer working out.

In this Tuesday's email to my contact at the clinic, I discreetly brought up "the urinal situation" and sought counsel on the best way to deal with it. I waited in front of my keyboard for hours, waiting desparately for an answer. Then suddenly, a noise, a new icon appears. My inbox sprung with a reply. The response I received was like poetry to my ears. I had progressed far enough that I didn't need to keep track anymore! Tears welled up in my eyes. I grabbed a tissue.

Now I feel like a mob boss, as I've been scheming on the best way to get rid of this plastic beast of burden. Do I burn it? Bury it? Consign it to the recycling bin? I better act fast; I haven't used him in a day or two and I'm beginning to suspect he knows his days are numbered.

Day + 68, Zzzzzzz

Every morning at 6:45am, the alarm on my phone goes off with a loud beep, reminding me to wake up and take my first medications of the day. It's a ritual that I've been performing for the last couple of months. Once I am up and taken the medicine, it's quite difficult to go back to sleep. Like a farmer just woken up by a rooster, I swear a couple of times, then resign myself to the fact that this is the start of my day. I get a cup of coffee and read the local newspaper here, which is only 20 pages or so. But it's got a full page of comics in color, so it's all good.

This morning, I couldn't do it. The alarm woke me up this morning, and I immediately felt a sinus headache and general, well, crappiness. I downed the pills and went back to sleep.

It's been like this for the last few days, since the latest heat wave. Summer is definitely not dead yet. The heat acts on my edema in the worst way. I start to swell and get circulation issues. Like a dog, I'll just crawl into a corner and nap the day away. It's a miserable feeling. While I will mourn the passing of the summer, I secretly await for fall to come so that I'm no longer as miserable as I have been.

Crap. I only have enough midodrine to last me until tomorrow morning, and my prescription expired. I'll need to call someone to renew it today.

A Picture Share!

Day + 66, I Ran

Since I started tracking my weight about 40 days ago I've lost nearly 30 pounds, most of it in the form of fluid. I've been able to remove everything but the final few pounds in my lower legs and feet, which have circled the wagons and are putting up a fight. That's not to say I've stopped making advances, it's just that getting fluid out of a foot is like getting blood out of a stone.

Today's a "water pill" day, which means that I'll feel absolutely miserable for the evening and tomorrow morning. I must endure this regimen until my body can flush out these fluids on their own. Unfortunately, the doctors do not know when this might happen. If it will happen.

This just in from the Irony Department: Although I've been struggling with the weight loss over the last few weeks, my worries are now being unable to gain real weight. I estimate I'm about 17 pounds underweight, and believe me, I look it. My mother got me a sweater the other day, and it fits me like a nightgown. Unfortunately, I've been blessed/cursed with an Italian disposition to eat large amounts of carbohydrates and not gain a single pound. This "anti-beer belly" mechanism is now working against me. Does this shirt make me look fat? If so, I'd like to buy it. In fact, give me two of them.

But I feel progress. Before I got sick again this weekend, I took my daily walk on Saturday and was pleasantly surprised to discover that I was able to jog for some distance without falling on my ass. This is a good sign.

News Syndication Using Feedburner

I'm now using Feedburner for newsfeed syndication. If you are using a newsreader, you can add my site by either clicking on the 'XML' button at the lower-right of this page, or go to this web page.

Last few days have not been good. Saturday was a 'water pill' day, and let me tell you, water pills days are not very good days. Your kidneys are responsible for the absorption and removal of excess water from your blood stream. Water pills work by making your kidneys work in overdrive, accelerating this process. This increases the amount of fluid you release. But your kidneys are no different than you and me; they don't like to be overworked, especially on weekends. And so they mutter and complain, causing your body to be "out of whack" while they are burning the midnight oil. Side effects: some stomach and intestinal problems, mild nausea, and a general feeling of malaise.

And I'm still "exploring" the foods and drinks that I can and can't eat. I still will get sick on certain things without any reason. For example, I had a fruit drink with my dinner last night which did not go well at all, turning an otherwise blah day into a horrible one.

Two steps forward, one step back.

Day + 62, The Log

What day is this? I guess today is Day 62. After a while you lose count.

The edema is starting to retreat further, as my diaretic freedom fighters have pushed back the enemyfrom Fort Knee back into the recesses of the lower legs and feet. I am happy to win back this small, but strategic territory, as it has allowed me to dress myself and climb stairs with impunity.

Because of my proteinurea issue, I have to track the amount of fluid I "void" on a daily basis. This is to allow the doctor's track how well my body is getting rid of it. For the last three months I have been keeping track of all types of information in a small spiral notebook, such as medicines taken, weight and blood pressure readings, gas prices and other things which have fluctuated during these last few months.

It's a pain to track all of this information, as I need to carry a urinal everywhere I go (it's a hit with the ladies). I really do need to hire an assistant scribe. However, it's been very useful to have in writing a history of your progress.

As I've mentioned, amyloid is tricky to discover as it does not show overt physical symptoms until it usually is too late. And most of the symptoms it does show can be easily confused for other, less threatening ailments. Peripheral edema due to amyloid kidney deposits was a big red flag in discovering my amyloidosis, and I shudder where I would be today if it had chosen to attack another organ that gave less prominent symptoms. When I reflect on this I am thankful, and do not mind so much having to pee in a jug several times a day.

Using Immunotherapy against Amyloid?

Immunotherapy is a treatment which works by manipulating your immune system to attack and destroy a foreign agent. Scientists have only recently discovered that this was possible -- it had been thought that the immune system was used to handle viruses and bad bacteria. But now, they've had some preliminary success in getting it to neutralize other things, such as cancer tumors.

Could it be possible that the immune system be trained to attack amyloid. As this lab research article shows, it is certainly possible. But it may take years for this research to translate into a feasible and effective treatment. A clinical trial based on immunotherapy for Alzheimer's patients was inconclusive, but showed that the immune system could have some effect on amyloid.

I don't know much about this topic, but my understanding is that Phase I (and perhaps Phase II) clinical trials are already underway for treating amyloidosis patients via immunotherapy. We are making progress, although it's a slow ride and a long road.

Day + 60, #$@#$ Insurance Company

Being stuck in a house in upstate New York really isn't that much different than being stuck in a luxury apartment in Boston. Either way, you're still stuck. Instead of seeing the city's elite walk their dogs in the Commonwealth Mall, I just see pickup trucks with NASCAR stickers on their rear mud flaps. Oh, and a lot more trees.

I don't think I'm the only person who maintains a love-hate relationship with their health insurance company. When they pay your medical bills quickly, you want to invite them over for dinner. But when they give you the runaround and pass you from department to department as they did to me this morning, I feel like driving to wherever they are and go postal. It's true when they say that when undergoing treatment for a serious disease, dealing with paperwork and the customer representatives can be as much threat to your health as the disease itself.

(takes deep breath)

Now that I'm thinking happy thoughts, I want to say that I have read every comment from every person on my blog since this terrible thing began. Although I may not have responded to all of you, I wanted to thank each of you for all of the kind words and support you have given me over the last two and-a-half months. When things were real bad, it was really comforting to read your messages of encouragement. And all of the get-well cards! The support you have given me has been unbelievable. Thank you, thank you, thank you.

Day + 59, Labor Day

To borrow a quote from Twain, the reports of my death have been greatly exaggerated. Two obstacles have been in my path preventing me from posting over the past few days.

First, I've had a slight relapse of sorts, dealing with my low blood pressure. Blame it on my new surroundings, or recent laziness, but I've had blood circulation issues over the last few days. It's a miserable feeling as you get body pains sleeping or sitting the wrong way. Sometime as innocent as sleeping on your side will force you to wake up in the middle of the night with pins-and-needles in your arm and side. This is something that I experienced the few weeks after my treatment. You have no choice but to lay on your back with your arms on each side, blankets wrapped around me like an Egyptian mummy. I was thinking of painting hieroglyphics on the walls to add to the theme. Needless to say, it has left me miserable.

Second, the Internet connection at my aunt's house is not, well, very good. It goes up and down faster than the gas prices here, with the exception that my connection is usually going down. We think that some squirrel made my data line to the outside world his lunch. Hopefully someone can get that fixed quick, as it is making me nutty. That's another blog I'll have to make: Tony's "Life Without Internet" blog.

Have you ever seen the skit where an old jalopy pulls up to the curb, filled with clowns? The door opens, and clowns of all shapes and sizes come walking out. And keeping coming out. You think to yourself, "how did all those clowns fit into that car?" Finally, the last one comes out, about 150 clowns later. That has been the story with my edema -- continuing to lose fluid but with little visual changes in my legs. I've been asking the same question: just where is all this fluid being kept? I've lost nearly 28 pounds (12.7 kg) of fluid in the last month, and I am still not finished yet.