Helping with a Study (10/24/14)
The only way to find new ways to detect, prevent, or treat diseases -- even find a cure -- is to help with research (trials, studies, etc.). I participated in a study recently at Cincinnati where they were trying to prove that MRI's are better than CT's for LAM patients (and other lung-related illnesses). They are hoping to show that the MRI's give more information and are beneficial in the long run because of the radiation associated with a CT. Kenny and I drove up the night before and had our appointment the next morning. After being used to other appointments taking FOREVER, with either a multitude of tests being done on the same day or simply waiting on the physician, this meeting was gloriously on time and fast. Can't beat that!
Another LAM Clinic Check-Up (10/15/14)
I went through the same cluster of tests again: drawing blood to check that the medication level is good, all the breathing tests, and another CT scan. The bloodwork came back positive, so everything is staying the same with the medicine. I still have been very lucky and have had very little side-effects to deal with (*knock on wood *). The breathing tests once again showed about the same level, so no further drop in breathing is about the best we can hope for. I have continued religiously with my new way of eating, and it is still helping with the fatigue. It is definitely an ongoing issue, and sometimes those really bad days happen -- but overall, I firmly believe that the advantages outweigh the vexation dealing with a special way of eating. The CT scan did show something different this time around. There is a new spot on my lungs that wasn't there before. As of now, it is just something they want to keep an eye on. I haven't had any word on whether or not there was any determination as to what the spot actually was; we'll need to follow up on that.
Latest Check-Up (4/29/14)
My recent check-up checked the level of medicine in my blood again, which was still good. I am just continuing with the medication as I have been. I also had some breathing tests, and everything was pretty much the same still. That is good! I have also been constantly improving the way I eat since I was diagnosed. I started by cutting out basically all artifical colors and sweeteners, worked on eliminating as much processed foods as possible, and have been constantly reading on different ways to eat healthier. I made a pretty drastic change about 6 months ago eliminating dairy, refined sugars and gluten as well as eating foods in a certain order; and it has helped a lot with the fatigue. I definitely get more tired than someone who is healthy, but compared to the exhaustion I was trudging through -- it has been a tremendous imrovement for me. I tried to write up the changes that I made, in case they may help someone else. I'm still learning and finding new foods and recipes. It's been a bit of a learning curve, and it is more work with thinking ahead and preparing meals... but I have absolutely no desire to not follow this new way of eating and possibly go back to feeling that bad again.
Over a Year on the New Medication (10/2/13)
I am thankful to still have no major issues with the medication. It has lowered my immune system a bit, and I get weird little, irritating infections once in a while. But considering the alternative of allowing the LAM to continue to progess, it's not a big deal. We went back to Loloya for a check-up with Dr. Dilling, and we did all the lab work and testing there this time. They even asked me to donate extra tubes of blood, which they do a lot, and I have no problem with giving more blood for research. I need them to find more treatments and a cure!!! For the most part, there is little change. My breathing tests showed a slight drop as always, but thankfully it was nothing significant. My bloodwork is showing that I'm handling the medication alright, so just continuing to limp along as I am now. I still need oxygen when I exercise, sleep and basically exert myself a little too much. By being careful, I don't need to wear oxygen outside of the house much still.
The only frustrating thing about this appointment was not being able to eat in the morning due to the bloodwork, and my appointment was around lunchtime. That's a long time to not eat, and I am not a good passenger in a car when I am hungry (get nauseous). So it made for a long ride, and then an even longer wait, as the person who was responsible for taking the extra bloodwork for research was late. I mean really late, as they made us late for our actual appointments for breathing tests and I didn't get to eat until the afternoon. Grrrrr! Our next appointment is toward the end of April 2014, so we'll see how that goes!
After Over 6 Months on the New Medication (10/24/12)
Still no issues with the medication, so that’s a good thing – I need to be thankful for the positive things that I can. It was time to get some tests scheduled, since I had been on the LAM medicine for over 6 months. We need to get an idea if the medication is helping, so we scheduled some tests through our local pulmonologist here at St. Anthony’s. I got another barrage of breathing tests, my blood was drawn to check the level of the medication, and we scheduled an appointment at Loyola at the LAM Clinic with Dr. Dilling.
At our appointment with Dr. Dilling, there was good news and frustrating news. The frustrating news was that my bloodwork results didn’t have the level of my medicine tested apparently. Hmmm. I thought that WAS the reason that I was stabbed and had such a lovely bruise on my arm to check that very thing. Grrrrrr. I’m not even sure what the heck they DID test for? (* sigh *) So now I get to have my bloodwork done yet again, and this time I also need to have my cholesterol level checked -- apparently the LAM medication can sometimes cause cholesterol levels to rise. My cholesterol has always been very good, so hopefully that won’t be too much of a problem. The good news, however, was that my breathing tests showed no change, even a tad improvement. Hopefully that means that the LAM medicine may actually be slowing or stopping the progression.
In addition to having my bloodwork done again, Dr. Dilling also wants me to get another CAT scan. He wants to see if there is any change in my lungs that can be seen. He wants us to get the CAT scan done there at Loyola, to hopefully alleviate some of the issues we’ve had with scheduling tests at separate facilities. Maybe we’ll just do the bloodwork and everything there from now on too. It’s obviously not as easy driving 5 minutes over to St. Anthony’s, but I’m not thrilled getting my blood drawn and the test that is needed not ran either.
My main problem is fatigue. I have good days and bad days. The bad days are difficult to get through, and I’m lucky to just get through household chores, the kids’ homework and after school activities, and whatever else needs to be done. I feel like I am always struggling to do the things that I want to do, because by the time I do everything else… I am tired and done for the day. Then to make it worse, sometimes by the time I get to bed I am past my “sleepy period” and have a hard time getting to sleep. UGH! I end up reading a lot. :-) On my good days, I can get through all the necessary house chores and still get to my list of things I want to do and cross things off. I keep a written list, so I can cross things off!!! Love that feeling! HA!
And now, I’m afraid I just have to have a minor little vent. I just have to address my standard “I’m fine” comment. I don’t know how other people who deal with a chronic illness feel when asked, “How are you doing?” But I do know how I feel about it anymore, and it isn’t a lot of warm fuzzies. Let me say that I do realize that most people mean well, and they are simply trying to be nice. While not trying to sound like a wench, I honestly don’t know how to respond to that question anymore. My standard reply is… “I’m fine.” I mean, when you are tossing it my way when we are passing each other in an aisle… I don’t think you want to hear how I am really doing. How could you? I can’t tell you in a few seconds how I’m feeling, on some level you have to realize that, so I can only assume you really don’t care. You’re just trying to be polite in some way, I guess. Honestly, I’ve found that most people really don’t want to hear about my illness, let alone talk about it or deal with it. I can understand that; I don’t want to deal with it either. Unfortunately, in my case, I don’t have a choice. I also tend to cry a lot when I talk about my illness. I am a little better than I was, but if I talk about it for any extended period of time… the tears do eventually come. I would prefer to not be bawling in public, so again… the standard reply “I’m fine.”
But here’s what “I’m fine” can really mean, depending on what day you catch me:
-It can mean I am completely and utterly exhausted. If you happen to have more than one child, remember how tired you were with your second baby? With your first baby, you could always nap when the baby is and try to catch up. But when you have a toddler to watch too? Nope… you are just wasted. That’s how I feel sometimes. I don’t even really know what it means to feel normal anymore. How can I tell that in a few seconds?
-It can mean that I am quite possibly borderline depressed. I am just tired and frustrated that there is nothing left for me. I’ve done all the housework, homework, chauffeuring, volunteering and everything else and there’s nothing left. And all I really want to do is something for me; I am disheartened and overwhelmed. How am I supposed to convey that in a few seconds?
-It can mean that I am feeling resentful and bitter and just plain angry that I have difficulties walking too far or too fast, that running or biking with my kids is not even a possibility, that stairs are my nemesis at this point, that helping carry things is out of the question, that being on oxygen and worrying about the possibility of getting a lung transplant or not seeing my kids grow up is something that I have to deal with and my husband has to deal with and sometimes I can really get myself all worked up on bad days. Seriously, how am I supposed to share that in a few seconds?
But on the flip side, sometimes it can mean positive things too:
-It can mean that I am thankful to be as “healthy” as I can be within my limitations. That I can get away right now without wearing oxygen in public for the most part, that most people who don’t know me have no idea I have a chronic illness, and I know that there are so many other people who are hurting and dealing with a lot more than I am.
-It can mean that I am grateful that there is at least a possible medication that I can try to take; it wasn’t even available when I was first diagnosed. And it is only through the hard work and constant effort of many before me that this option is even available.
-It can mean that I am hopeful for a longer life span than was originally expected for LAM patients. With more fundraising, trials and better understanding of LAM, I can entertain the hope that there will be better medicines to control LAM and possibly even a cure within my own lifetime.
Whew. (* deep breath *) That has just been weighing me down for a while, and I just needed to get that off my chest. :-) Vent over…
Starting the New Medication (2/13/12)
It took a while to get the breathing tests scheduled and jump through all the hoops for the medication with insurance and everything, but we finally received the medicine. We both read all the information that came with the medication, and it was quite a read. The list of side effects are impressive -- lots of them, with quite the variety of possible symptoms. Nice... not! I was definitely stressed about taking it, but really felt like I was stuck in the proverbial rock and hard place. (My choices: either not take the medication and continue on the slow, but steady decline in my lung function or take the medication and hopefully stop the decline -- but risk all those lovely potential side-effects. D**ned if you do, d**ned if you don't, huh? I'm not trying to be ungrateful, since before this there WERE no possible treatments available, at least there is research trying to find a way to treat and hopefully cure LAM!) The medicine needs to be taken in the same way and the same time every day. Since I also apparently need to get my bloodwork (checking the medicine isn't affecting me adversely in other ways) at the same time, I opted for something other than a morning time. I am taking it at lunchtime with my food, and I have an alarm set on my phone to remind me. (I can tend to get absorbed into projects and not realize how much time is passing.) So far, I haven't noticed any problems or anything at all really; I'm writing this on Wednesday, February 22nd. So keep your fingers crossed that I have no issues with the medication, and it helps stop the decline in my breathing!!!
An Even Earlier Start to Loyola this morning (1/13/12)
So much for no appointments before 10AM, as our bronchoscopy was scheduled at 7AM! UGH! Then we have a lovely snowstorm the night before, and it made for a stressful morning on so many levels. We did make it to our appointment on time; however, and Danielle got the bronchoscopy over with at the beginning of the day. Danielle had to gargle lidocaine three separate times before the procedure (nasty!), and then after she was wheeled in... and she doesn't remember much. She woke up afterwards, a little groggy, hungry (wasn't supposed to eat after midnight the night before), and ready to leave as soon as they dismissed us. We stopped and ate a quick lunch at Jason's Deli on the way home (yum!), and pretty much headed home and crashed.
Danielle slept until around 7:00 that evening, woke up a bit for supper, then slept the entire rest of the night. Her throat and her right side of her lungs were very sore at this point. She was taking a lot of lozenges and Tylenol. She was pretty tired and sore most of the weekend, and she didn't start to feel better until Monday the 16th. Now we just have to wait to see what the results are from the bronchoscopy, as apparently diagnosis of LAM from such a procedure has about a 50/50 success rate.
UPDATE: We received a call later that week from Dr. Dilling. Good news: there was enough tissue to diagnosis LAM, and Danielle now has her definitive diagnosis. Bad news: Danielle has LAM, which pretty much we already knew anyway. Now we're getting an updated breathing test and getting ready to start the drug from the first trial to see if it can halt the progression of LAM with Danielle and at least level things off where they are now.
An Early Start to Loyola this morning (1/9/12)
An early start to Loyola this morning – traffic sucks, so we decided no more appointments before 10AM! Anyway, our first appointment was with Dr. Dilling to go over Danielle’s test results from a couple weeks ago.
The first test was a blood test – called a VEGF-D. It is a quantification test that finds a certain blood marker and if the level is elevated, it would be a definite diagnosis of LAM – Danielle was in the “Normal” range. No definite diagnosis. The second test was an MRI of her brain. They went to look for any signs of Tuberous Sclerosis – if they find it, it would be a definite diagnosis of LAM – Danielle’s brain is perfect (I KNEW that!), there were no growths, tumors, etc. No definite diagnosis. The third test was another high resolution CAT scan. This shows the cysts and the holes in the lungs. “There are widespread cystic lesions with thin walls throughout both lungs. There is in some increase compared to the 2008 scan, but little change compared to last year’s scan. Most cystic lesions are <1 CM while the largest are 1.3 CM.” The conclusion states that the extensive bilateral thin-walled cystic lesions and large lung volume are consistent with LAM. Then, he talked about some other lung abnormalities that are uncertain and are not typical of LAM. These include some ‘ground-glass’ opacities and something that has the appearance of pan lobular emphysema. Confusing to us, and we are going to try and get some more information on those items.
Dr. Dilling then switched into “Serious Doctor Mode” – he said that he and Dr. McCormack have talked and discussed Danielle’s case and came up with a course of action. They both ‘almost certain’ that Danielle has LAM, but there are a few different things (lack of Vegf-D, no TC, the ground glass) that do not present a typical case. They believe that her symptoms and progression make her a candidate to take Rapamycin – since she is now in the ‘moderate’ breathing level. However, they do not feel comfortable at this time with prescribing the drug because if there are some side-effects, they may not know how to proceed in treatment. So, they have decided to ‘go in’ and get some lung tissue to try to get that definite diagnosis of LAM.
She is going to have a procedure done called a Bronchoscopy (this is a simulation: http://www.thoracic-anesthesia.com/?page_id=2) . She will have a general anesthesia and going through her mouth using a straight, hollow metal tube, they will go into the lungs and remove some tissue samples for biopsy. If the biopsy shows a definite diagnosis of LAM, they will prescribe the drugs and we can start treatment. If that is the case, they think the ground-glass appearance is something called chyle, a milky fluid – and the drug will help with that as well. If the biopsy does not prove positive – they would like for Danielle to undergo a surgical biopsy to get the tissue. She hesitantly agreed to the Bronchoscopy, there will be a more serious conversation should we need the surgery.
Our next appointment was with Dr. Kevin Welch – in the Otolaryngology department part of the Loyola team. Danielle is having some issues with congestion, drainage and getting to sleep at night because of those issues. The doctor asked a lot of questions, and even did a small procedure in the office. They semi-numbed Danielle’s nose and throat and with a tube camera, went exploring. I tried to take a small picture, but got in trouble by the doctor! It was determined that Danielle has a narrow nose, but clear sinus passages. The constant stream of oxygen does not help as well as all of the different medicines and steroids that she takes with her inhalers. She has some thrush (fungus) deep in her throat (unusual) and her nasal passages are very dry. He suggested to take a prescription for the thrush, start doing a nasal and sinus flush a few times a day, add some moisture to her oxygen and switch up some of her allergy/asthma medications. Danielle is going to make some of those changes and hopefully that will help!
Tests, Tests and More Tests at the LAM Clinic (12/20/11)
On Tuesday the 20th, we headed back to the LAM Clinic for several tests and an appointment with Dr. Love who is part of the team in the event a lung transplant is needed. First we met with him and received a little more information as to how to handle an emergency. He also stressed that keeping my lungs as long as possible is a priority (which we agree with), and he also recommended that I consider going on the sirolimus that Dr. Dilling explained to halt my progression. Then I had yet another CAT scan, followed by an MRI. We don't have the results back yet for the testing; we are meeting again with Dr. Dilling on Monday, January 9th to discuss the results and see what the next step is. At that time we are also meeting Dr. Welch, who is a sinus doctor (sorry, probably not the proper title for him), to see if I can get some help with my consistent congestion. (Kenny is tired of supporting Kleenex's sales.)
LAM Clinic in Chicago (11/30/11)
· Okay, let’s see if I can get a good synopsis of our first LAM Clinic appointment. One of the main reasons we went is the drop OVERALL in my breathing… from FEV1/FVC% of 67 (initial diagnosis) to last week’s tests of 54, which is a 19% drop in 4 years. Yes, my pulmonologist always says there is just a little change each and every time. The problem is, when you look at the entire picture of those “little” changes, it adds up and starts to get scary. Also, the LAM clinics have a couple of other benefits in that we would be in the “database” of these LAM clinics that are available now to make sure our information is out there and in the loop as well as have a doctor who is a little more accustomed to working with LAM patients. We met with Dr. Dilling, who is the head of the Chicago LAM Clinic. He currently sees about 25 patients, and he apparently has a couple more new people coming after us. He seemed very nice and took a lot of time with us going over all our many files we brought (Kenny has been great about organizing and keeping all the many paperwork regarding my tests and medical information).
His initial impression was that he was also concerned with the progression of LAM regarding my breathing. He feels that I’m no longer in the mild category but would instead put me in the moderate category. He wants to take a much more active approach in keeping on top of the LAM with me. Initially, he wants me to get another CT scan right away as well as a MRI of my head (looking for any indications of TS -- which would give me a definitive diagnosis) there at Loyola where he has a specific technician who is good at reading LAM CT scans. Then, he wants me to get a CT scan every year (instead of every two), a full pulmonary function test every 6 months as well as a spirometry breathing test every 3 months. He wants to build a history of my LAM and any progression to get a better picture of where my LAM is and where it is going. We need to call back and schedule for all these tests.
In regards to the recent concern about the elevated blood cells, he definitely attributed that to a lack of oxygen. He isn’t concerned about it as of yet, and he feels that after increasing my oxygen and ensuring that my stats remain where they need to be -- it should correct itself. We’ll take another test in February to follow up on that, as it takes that long to stabilize. I also gave a lot of blood. We first gave blood for the VEG-F test, which again, if it would come back positive would give the definitive diagnosis (I have taken this before with no luck, the levels weren’t high enough at the time). I also donated a lot more vials for another research project. It was initially developed to treat melanoma, but they are discovering with how quickly melanoma progresses it is likely a too slow therapy; however, they are thinking it may show promise in LAM patients.
With my current progression, he said that a lung transplant is currently years away (so there is at least that). He did feel though, that with my progression I should consider taking sirolimus at this point. It was the drug used in the first-ever trial for LAM. The study showed that it helped stabilize the loss of breathing (not improve or fix, simply stabilize your breathing where it is at while you are on it with the decline in lung function resuming after discontinuing it); however, there are a lot of potential side effects which aren’t so nice. We’ll have to weigh the risks and benefits for sure, but something that stabilizes my lung function and further delays the need for a lung transplant (and its risks) is something we’ll truly have to consider. He personally would recommend it to someone with my level of LAM. Considering they already have this option for therapy after one trial, any delay could potentially give me more treatment options as other trials take place.
In addition to the tests he wants me to take, he also wants us to meet with his “team” so to speak. So he wants us to meet with the person who would be part of the team in an eventual lung transplant as well as in case of a lung collapse -- the person who he’d like to deal with it as well. He wants us to come to them in regards to anything concerning that, not to have it done locally. Get it stabilized here or if not, apparently go to them with a tube in my lung!!! But he wants them to “fix” my lung so it is done properly keeping in mind the very high possibility of a lung transplant down the line. So we’ll be meeting with a Dr. Love, a cardiac and thoracic surgeon. He also wants us to see a sinus doctor there to see if something can be done to help with my congestion and breathing issues there.
Last but not least, we talked about the lack of a definitive diagnosis, which keeps me from participating in trials and such if I would like. The specialist in Ohio, Dr. McCormack, said unless I needed a lung biopsy for some “peace of mind” to have that true diagnosis… to not mess with it, as I have not had any lung collapses so far. Considering the next two upcoming trials (one is for post menopausal women and the other is for women who have a better breathing rate than I have), I wouldn’t qualify for either one anyway. So we’re still leaning AGAINST getting a lung biopsy right now.
Latest Pulmonologist Appointment (11/18/11)
· Since I had an appointment with my pulmonologist already on the schedule, and I was having so many problems with fatigue ALL the time… we called and asked if we could get some tests before the appointment. I had another barrage of breathing tests, bloodwork run, and an overnight oximetry test (to check my O2 level when I sleep at 3L of oxygen). Before the appointment, we already got the results for the overnight oximetry test. We found out that my O2 is dropping below where it needs to be around 20-30% of the time. So that alone could well contribute to me being tired all the time. I did bump my O2 level at night up to 4L when we found out, and I have been feeling a little better. Then we had our actual appointment with the pulmonologist and went over the results of the rest of the test.
Good news, the breathing tests don’t really show much of a change. Which is basically a good thing as that means that my symptoms will hopefully remain about where they are and continue to not have the LAM progress too quickly. Another good thing is that it apparently really showed a big increase in my breathing capacity when I used the asthma medication -- almost 20%. I knew I improved slightly with it and basically felt that any improvement was worth it, but I didn’t realize it was that much. So he’s increasing my usage of those drugs to see if that helps with my breathing. Most of my bloodwork was great, so that was good as well… but there is some bad news. Apparently I have the opposite of anemia (which is a shortage of red blood cells). I apparently have too many, it is a condition called Erythrocytosis/Polycythemia. It can apparently be caused when your body is short of oxygen (imagine that), and it is a way for your body to try to cope with that shortage. The bad thing is it can make your blood too “thick” and can cause fatigue (hmmm), irritability, dizziness, and more as well as possibly blood clots and even a stroke. Nice… not!!! So right now, we’re concentrating on getting this under control.
I will be having another overnight oximetry test at 4L of oxygen to see if it is high enough to keep my stats where they need to be, if not I may have to set my O2 level even higher at night. He told me to go give blood, as since I have too much, maybe I can help someone who needs blood (and it will help thin mine down immediately at least a little). I need to be more careful at work and everywhere to not push my exertion and make sure that I keep my oxygen stats where they need to be, and then we’re going to redo my bloodwork again in 3-4 weeks. If it is where it needs to be great, we’ll just keep up with what I’m doing. If not, then I’ll probably have to have some blood drained off at the hospital to get it down to where it needs to be and figure out where I am still having my oxygen levels get too low.
2 Year Checkup w/CAT Scan Results (12/17/10)
· I received my 2-year checkup after getting another high-resolution CAT scan. The pulmonologist compared my new CAT scan with the previous one, and he said there was basically little to no changes. Whew! We will continue to keep praying that my symptoms remain mild, and the disease continues to progress as slowly as possible! I am still committed to my exercising, alternating weights with treadmill time, and have increased my treadmill time to 45 minutes. That was my time goal to work for, so once it gets warmer, I think I'll try to work on increasing the speed a bit and see how that goes. Losing weight has tapered down a bit, I really don't have that much left to still lose. I am now a size 6/8! Losing the extra weight has helped pretty much with everything: walking, breathing, etc. I can walk relatively normal for short distances, I know my body will recover quickly. Although my normal walk is more of an amble compared to everyone else! It's the constant walking without a break (like on the treadmill) which does me in. I still need oxygen while sleeping and exercising, but that's pretty much it. Although, I am careful of what I do/don't do. I am very aware of my limitations (hard not to be), and I don't go out of my way to walk up a flight of stairs, carry anything too heavy, or exert myself too much. Oxygen is still very much needed for too much exertion, period. Short of a lung transplant, that will always be the case. Of course, if they ever come up with some treatments or even a cure -- that may change! That's what we are praying and hoping for.
Yearly Pulmonary Function Test (7/6/10)
· I'm happy to announce that my breathing test results have continued to remain around the same. Once again, thankfully the disease does not seem to be progressing rapidly in my case! We pray and hope to continue to maintain the same level of health that I have now for as long as possible! I am still committed to my exercising, alternating weights with treadmill time, and have increased my treadmill time to 40 minutes. I am now a size 8/10! I think that losing the extra weight has really helped my quality of breathing, and it is a little bit of a silver lining to not have any weight issues. (I even wore bikinis this summer for the first time since college!) I still only need oxygen when sleeping, working out, or exerting myself too much (also flying, as we discovered). Which means, that for the most part, I do not need to wear it out in public (still not comfortable with that).
I will get another CAT scan at the end of this year, so that we can compare that scan with my first one to also try to determine how the LAM is progressing. I am anxious to see what, if any, changes will be discovered there. More information to come at the end of 2010!
How Things Are Going Today (2/24/10)
· I've been slightly chastised a few times for not updating this since August; however in my defense, it's not like I've really had any new medical news to share or even had any doctor visits lately. When the very rare progressive lung disease that you have, doesn't even have any medications to treat it and you just have to hope it progresses slowly -- it doesn't really require a lot of doctor visits. :-) BUT, I will be a good girl and give a more current status. First of all, today is my birthday, and I am now officially 39 years old. Seems a little hard to believe, but, there you go. I know that some people may have a lot more difficulties with turning this age (and the subsequent 40 next year), but with my diagnosis and health issues -- I'd have to say... me, not so much. I'm just happy to be alive, as healthy as I can be, and I am grateful that I am able to continue with as "normal" a life as I can right now. I am blessed with a wonderful husband and two awesome children, and again I am simply thankful.
I am continuing to exercise just about every single morning. I am using a treadmill every other day, and then alternating with an upper and lower body workout with weights on the off days. I seem to have reached about the highest speed that I am comfortable attempting right now on the treadmill, and my oxygen is up to about 8.5L. So now I'm S L O W L Y working on extending the time. I've been doing 30 minutes since I started -- so the last several sessions I've upped it to 35 minutes with the intent of building up to 45 minutes. I have my oxygen at 6L when I do my upper and lower body workouts, and I've been incrementing my weights on a regular basis. I can tell the difference from exercising on so many levels -- first, my breathing still seems to be holding its own. I am still only needing oxygen when sleeping, working out, or exerting myself too much. Which means, that for the most part, I do not need to wear it out in public (which stresses me out, by the way) -- so I'm very thankful for that. Then I've probably lost over 15 pounds (I wasn't really keeping track at first there), as well as dropped two whole sizes!!! I would have to say, that I'm pretty darn thrilled about that. Although, I would stress that there HAS GOT TO BE A BETTER WAY TO LOSE WEIGHT THEN BEING DIAGNOSED WITH A RARE PROGRESSIVE LUNG DISEASE! If you are healthy now, respect and honor your health and if you need to lose weight... make the time to do so!
Since my last breathing tests were in August, I'm assuming that I'll just be tested again around the same time to start to get a handle on how LAM is progressing with me. I know that another CAT scan is sometime in my future, but I'm not sure if I'll get that within a year or maybe two? But eventually, we'll want to compare a newer CAT scan with my older one to also try to determine how the LAM is progressing. I've also still been extremely lucky to not have any of the other common LAM symptoms. That's about it! I'm pretty adjusted to what I can do/can't do, and I'm doing the best I can right now!
Latest Breathing Test Results (8/10/09)
· I went through another battery of breathing tests at the hospital. Since LAM can progress so differently in each individual, it is important to try to determine how it is progressing for me. Thankfully so far, it seems to be not be rapidly progressing in my case!!! My breathing test results were the same, if not even a tiny bit better in small instances. This is the best news we can hope for, so let's pray that the LAM continues to progress as S L O W L Y as possible! And I definitely need to keep up with the exercising, it helps tremendously. And I still have been very lucky in not having any of the other common LAM symptoms such as lung collapses or benign kidney tumors.
Working out at Home (6/24/09)
· I've been working out at home now for over a month, and it is great. The best time for me to work out is first thing in the morning. If I wait to do it later in the day, either there is simply too much going on or I get too tired (it really doesn't take too much to wear me out sometimes). I'm using the treadmill every other morning for my cardio. I'm up to almost 8L of O2 while using the treadmill, trying to keep working up to a higher speed while keeping my stats at a healthy level. It takes me a while to adjust to using the higher level of O2, so everything has to be done in small increments. Then on the alternate days I'm switching between an upper and lower body workout utilizing weights. I still need to use about 5L of O2, and pause between sets until my O2 level recovers. The exercise has REALLY helped my breathing. My breathing definitely got worse from my diagnosis around Christmas (where I was told to stop exercising), until I was able to jump through all the necessary hoops and doctor visits and insurance issues to when I could start exercising again. So it was a really bad combination, dealing with the shock of the diagnosis and my breathing steadily decreasing -- thankfully, that's all behind us now. And as a bonus, I've been losing some weight and slimming down. Have to find the silver lining in everything, right?
Pulmonary Rehab's Last Day (5/21/09)
· While everyone was super nice at rehab, I'm thrilled to see it come to an end. I've learned a lot about using oxygen while exercising, and I'm definitely ready to start exercising at home now.
Pulmonary Rehab (4/1/09)
· I’ve been going to pulmonary rehab for a few weeks now, and as many of you know – not being an overly outgoing person (to say the least)… I was really fretting about this. Except for the fact that I’m what seems literally decades younger than anyone else in there, I’m doing alright with it. I still would rather exercise at home, so I’m trying to learn as much as I can about my limits and safety with exercising while I’m there. I will probably be a good girl and make it through the entire 10 weeks, and I’m just trying to learn how hard I can work out. I’m starting to discover that I need my oxygen level turned up even higher while exercising, because while my breathing level is pretty maxed out the rest of me physically is hardly doing anything. UGH! I’m planning on starting to work out at home next week to see how I get along on the off days from rehab.
Pulmonary Rehab (3/3/09)
· Ok, this REALLY sucks. Danielle is going to go to pulmonary rehab for 10 weeks (we'll see if she makes it the entire duration) three times a week. This is to enable her to realize her limits and learn how to exercise at home safely with oxygen. We had an informational meeting with the staff and they gave Danielle some hints and ways to breathe better when she is short of breath. More updates on this to come, I'm sure!
Apria Health Care (2/25/09)
· Apria delivered a oxygen concentrator, which is able to take air from the house and convert it to pure oxygen. We have placed this in our soccer room and have about 50 foot of tubing that can go thoughout the house.
· Currently, Danielle wears the oxygen while sleeping (3L) as well as when she exerts herself at home - like housework and walking up those damn steps.
· We also were given small, portable oxygen tanks to be used when needed outside the home. It is stored in a small bag that can easily be carried over the shoulder.
· While it sucks to wear oxygen when you are not even 40, it has given Danielle a lot more energy thoughout the day. She really didn't even realize how run down she was, things need done even though you are tired!
Dr. Devanathan (2/20/09)
· We still do not have a 100% definitive diagnosis that I have LAM (frustrating). It’s probably like 99%. But without a lung biopsy (which could cause more problems on its own...), we won't know for sure.
· We got our test results. We did a CT scan on the kidneys, everything was healthy - no benign tumors. Also, there was a CT scan of Danielle's head to rule out TS - this was also negative. Finally, there was three other blood tests to rule out other diseases (all of which were even more rare than LAM) - and all of those tests came back negative. With the previous heart tests from before, and all these current tests, nothing is wrong with Danielle - EXCEPT for her lungs!
Our Visit to our local pulmonologist - Dr. Devanathan (1/30/09)
· We met with Dr. Devanathan to establish a relationship with a local doctor. We had a good meeting and a lot of tests were scheduled and presciptions were given for oxygen at home. Per my doctor, I can’t continue to go “80 miles an hour” anymore, and some things just have to go. Basically everything is healthy with me BUT my lungs. My lungs are a mess. I need oxygen at night when I sleep and pretty much whenever I exert myself (unfortunately not just when I exercise as I was originally hoping). I can get away with just wearing it at home for now, if I be careful in my excursions out. But it does really sap my energy level, so my late nights have been drastically reduced. And since there are currently no treatments or a cure, eventually when my lungs get bad enough I’m looking at a lung transplant (but I’m having a really tough time wrapping my head around that one now).
Our Visit to Dr. McCormak (1/16/09) - Danielle wrote...
· We still do not have a 100% definitive diagnosis that I have LAM (frustrating). It’s probably like 98%, but without further tests (which I’ll go into more later) we don’t know for sure now. My CT scan of my lungs basically looks like it can’t be much of anything else, but I’m not showcasing any of the other typical symptoms.
· The other typical symptoms are lung collapses, benign tumors (esp. in kidneys), fluid in the lungs, etc. … basically a bunch of things that I’m okay with not having. J (So that’s not all bad news!)
· There are a few different ways to get that 100% definitive diagnosis. I need to get another CT scan, this time of my kidneys. If I have some benign tumors in my kidneys (40% of LAM patients have them), then that will give me the 100% definitive diagnosis. Another way is to wait and see when/if I get one of the other lovely symptoms (for instance, 70% of LAM patients will get a lung collapse). Or I could have a lung biopsy, where they’ll then take a little bit of tissue to confirm one way or other as well (not all that hip on that one).
· Right now, I’m just going to wait for the CT scan of my kidneys and then go from there.
· The problem with not having the 100% definitive diagnosis is that I can’t participate in any of the trials they have going on without a positive diagnosis.
· Many of the websites which are online with information about LAM are out of date. While LAM currently has no treatments or cure, it is normally a very slow progressing disease. There are a few exceptions where it is more aggressive in some people, but that is definitely not the norm. Unless something out of the ordinary happens, I will have more than just 5-10 years to live (those life expectancies were before CT scans were around so people were diagnosed a lot later). I could easily have 15-20 more, and that is even without a lung transplant in the picture, which could then extend it even more of course. The fatal part hopefully won’t be a problem for many years to come.
· However, it is a chronic progressive illness. It will get worse, however slowly it may occur, it will not improve and I will have a lot of adjustments in my life. Supplemental oxygen will probably be needed even now to exercise and maybe even for stairs and other strenuous activities. I also need to get a oximeter sleep test to see how low my oxygen drops while I sleep, and I may even need it when I sleep. I will be getting my own oximeter to check my oxygen level when I do various activities to ensure that my oxygen level stays where it is supposed to (right now it drops dangerously low on stairs, well below where it should). Then, as my lung capacity decreases, supplemental oxygen will be needed for more and more things.
· It is important to keep my oxygen saturation level above 90, so it doesn’t stress my heart, brain or other organs. If I do need a lung transplant down the line, it is important to keep the rest of my body as healthy as possible so I’ll be eligible.
· The guy in Ohio we spoke with was the top guy in the world on this disease. The trials they have going on have been really positive so far, he could easily see a treatment 5 years down the road for LAM. If not a cure, at least a treatment to slow it down, so that is also hopeful and something to think about as well. There aren’t any hard and fast levels where people are in LAM (since it varies so much with each individual), but he diagnosed me as moderate to moderately severe (level 2 and 3 out of a 4 level chart). But people can stay in any given level for a very long time, so it doesn’t mean all that much.
· I will be trying to find a local pulmonary specialist of some sort this week who will hopefully be able to work with me, help me get the tests I need now, help me get in a pulmonary rehabilitation program to learn how to exercise and use supplemental oxygen and start testing my lung capacity every 6 months. I’ve got tests of my lung capacity now, but they are from three different places, taken with three different machines and there’s just not a lot of consistency with the tests. I need to get some consistent breathing tests over a period of time to really start to see how the disease is progressing in me -- so that will take time to determine.
Dr. Fahey (12/22/08)
· Confirmed probable diagnosis of LAM. Educated us a bit about LAM and some things that we may experience. Suggested seeing a Dr. Frank McCormak at the University of Cincinnatti - the top doctor in the country in regards to LAM.
Dr. Kansal (12/16/08)
· Initial diagnosis of LAM. Suggested seeing a specialist after the holidays.