· 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!
· 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!
· 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.
· 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?
· 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.
· 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.
· 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 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!
· 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!
· 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).
· 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.
· 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.
· Initial diagnosis of LAM. Suggested seeing a specialist after the holidays.
Email: info@benich.com