tag:blogger.com,1999:blog-7379295766154437752023-11-15T08:06:15.537-08:00Dairy of a Mom with Lung DiseaseA blog about living my life with interstitial lung disease (ILD) .Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-737929576615443775.post-64417199575985145552009-01-10T09:34:00.000-08:002009-01-10T09:52:21.871-08:00<span style="font-family:verdana;color:#000099;">I had a long appointment with Dr. L yesterday.. we talked about my diagnosis and what is to be expected in the upcoming months/years. He is not treating the HP yet, because the only treatment for my type (it's an autoimmune disease) will be to suppress my immune system with a form of chemo. <em>Not</em> my idea of fun, but it may become an evil necessity.</span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">I have to continue to use my CPap machine and in March I will have another CAT scan and 6 minute walk test. If the results of these show no improvement or if my are not stable, then we will have to start seriously consider treatment. </span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">Dr L told me in his 15 years of pulmonary medicine, cases like mine cause him the most problems... because he has to think so much, lol. He said some cases become chronic, some just go away, and others come and go. Right now, mine is considered chronic. I'm one of his 'smoldering' cases.. my problem is not gone and could flair up into a raging fire if we don't watch out. </span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">I also have to lose weight.. like I didn't know.. and start excersizing again. Not much (before all this, I walked/jogged about 5 miles 3 to 4 times a week), but as long as my oxygen level doesn't go below 85 I it's okay. As far as my weight, I am considering a medically supervised diet plan, iMetabolic (<a href="http://www.imetabolic.com/">www.imetabolic.com</a>)</span><br /><span style="font-family:Verdana;color:#000099;">I have to call on Monday and schedule a consultation. </span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-25463315610638695962009-01-07T06:59:00.000-08:002009-01-07T07:09:14.888-08:00<span style="font-family:arial;color:#000000;">Why no posting, well, to put it simply.. depression. I don't do much of anything the past three weeks, besides what I <em>have</em> to do (cooking, housework, laundry, grocery shopping, school things). Some days I don't feel like getting out of bed, but I do and carry on like a good Mom/Wife is supposed to. Joy, Joy.</span><br /><span style="font-family:Arial;">I think a lot of it has to do with my medical problems. I'm tired of doing <em>everything</em> my doctors tell me to, and still, I feel like crap. I'm just tired of it all.. can't I just go back to bed and pull the covers over my head until it passes? ::sigh:: This too will pass.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">Happy Birthday to my Husband. Nothing special planned, he and I don't think much of our birthdays (who wants to be reminded of how old we are, lol). I will bake him a special batch of his favorite cookies and make him a pork chop dinner (also his favorite) and give him money towards a new set of tires. Yes, it's practical, but welcome to my practical life.. whether I want it or not. lol</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">The weather here has been nice. We had our white Christmas and since then, although cold, it's been beautiful. Yesterday I was walking around outside with a t-shirt.. it was in the low 50's. Today is supposed to be even more nice, but then it changes again.. rain/snow tomorrow. Gotta love Northern Nevada weather. </span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-75528370635444496262009-01-01T09:32:00.000-08:002009-01-01T09:41:45.318-08:00Happy 2009 One and All<span style="color:#000099;">I hope you all had a safe and fun night last night. We stayed home and enjoyed the evening with our family... playing DS games and laughing (plus eating.. a coffee tabled filled with finger foods was our dinner).</span><br /><span style="color:#000099;"></span><br /><span style="color:#000099;">Out of curiosity, I did another addition of the amount billed to our insurance... I know I've said it before and will say it again, thank goodness for insurance.. and the grand total, from July 22 to Dec. 31 is $77,841.30 (not including the CPap machine). It is shocking (well at least to me).. I don't want to add up what has been out of pocket, but I will soon.</span><br /><span style="color:#000099;"></span><br /><br /><span style="color:#000099;">Have a great New Year, and New Year's Day, enjoy the Rose Parade and your family.</span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-78778964337945957092008-12-30T16:09:00.000-08:002008-12-30T16:33:00.208-08:00Where Did..<span style="font-family:verdana;color:#000099;">2008 go? It dawned on me this morning that it is December 30th. No plans for New Year's Eve, just staying at home with my family and having finger foods to munch on until 2009. I'm not big on going out on NYE, it scares me to be on the roads. Here's to no deaths this year!</span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">No new news on my health. I see Dr. L on January 9th and I plan to take a list of questions to ask him. I will probably be put on blood thinners for the blood clots then, I know Dr. L was talking to a couple specialists and reviewing the VQ scan also.</span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">I got my CPap machine on Christmas Eve. It's been interesting getting used to sleeping with it. It's not uncomfortable, just unusual. I'm told I have the *cadilac* of CPap machines and that it can tell the pressure I need and change it to my needs, thought out the night. I also have a humidifier (which is very helpful with the cold I have.. blah). I can't tell a difference while using it, but Im sure time will tell.</span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">Speaking of Christmas, I hope you all had a happy one. Ours was quiet, happy and everyone was over-joyed with the gifts they got.. even with us cutting WAY back. I got a Nintendo DS Lite and I'm already addicted, lol.</span><br /><span style="font-family:Verdana;color:#000099;"></span><br /><span style="font-family:Verdana;color:#000099;">If I don't get to post tomorrow, have a very Happy New Year and stay safe!</span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-4213606707606953172008-12-19T08:16:00.000-08:002008-12-19T08:29:11.228-08:00Autoimmune Hypersensitivity Pneumonitis..<span style="color:#000066;">with fibrosis is my diagnosis... finally. The biopsy also showed blood clots in my lungs that the CT scans missed (at least we now know why the blood work was showing a possiblity of blood clots...). I am waiting for Dr. L to review the VQ scan and see what the course of action will be (most likely I will be put on blood thinners and possible steriods). The cause of my HP is still unknown. I tested negitive to all mold and fungus, and besides that, we are not sure what it is.</span><br /><span style="color:#000066;"></span><br /><span style="color:#000066;">I heard from Dr. L last week about this, sorry I am late updating, but I had to let it sink in. It's not idiopathic pulmonary fibrosis which is a big weight lifted off my shoulders. Now just to find the cause.</span><br /><span style="color:#000066;"></span><br /><span style="color:#000066;">I am getting a CPap machine soon. The oxygen company called yesterday to get some information and are getting ready to ship it to the Reno office. Merrry Christmas to me.. blah. No, I don't have sleep apnea, but Dr. L is hoping by forcing my lung open at night, it may help my oxygen levels during the day. </span><br /><span style="color:#000066;"></span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-89431566375812627282008-12-05T18:43:00.000-08:002008-12-05T19:01:35.327-08:00$68,902.96...<div align="justify"><span style="font-family:verdana;color:#990000;">..billed to our insurance to date, just for my lungs. Thank goodness for insurance. This includes a three day stay when my problem was first dianosed this past July (7/22/08), two CT scans w/contrast, chest x-ray, blood tests, pulmonary function test, excersise test, sleep study, bronchoscopy/bronchoalveolar lavage, lung biopsy (including Stanford Med. Center checking them out), doctor visits, home oxygen.. and whatever else. </span></div><div align="justify"><span style="font-family:verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:verdana;color:#990000;">And still, no definate diagnosis yet. I think daughter #3 is right, I need Dr. House; one hour and I would have a diagnosis, lol. Yes, my 6 3/4yo daught likes Dr. House. No, she doesn't want to be a doctor or nurse, but the joke is she should be a Dr. because of her writing.</span></div><div align="justify"><span style="font-family:Verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:Verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:Verdana;color:#990000;">Yesterday I had a surprise test. Northern Nevada Medical Center called and had me come in for what I thought was another CT scan. When I got there, no CT scan, but a VQ scan. What the heck, might as well have all the tests done, lol. (No this isn't included in the above price). I don't know the results of this test yet.</span></div><div align="justify"><span style="font-family:Verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:Verdana;color:#990000;"></span></div><div align="justify"><span style="font-family:Verdana;color:#990000;">Until next time take care, I here there are several *bugs* going away ::spraying disinfectant::</span></div>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-90779761948447847192008-12-03T14:01:00.000-08:002008-12-03T14:04:20.714-08:00And Still..<span style="font-family:verdana;color:#006600;">..no real answers.</span><br /><span style="font-family:verdana;color:#006600;"></span><br /><span style="color:#006600;"><span style="font-family:verdana;">Well, I had my appointment this morning and was hoping to have more answers... but.. my biopsy reports have yet to be sent to Dr. L (I don't know who was more angry, me or him, ha ha). I do know the biopsys were sent to Stanford Med. Center, according to Dr. L, either the local lab couldn't figure out what the problem is, or needed a second opinion or knows Dr. L enough that he would ask for it to be sent, ha ha. He is also going to look at my echocardiogram again to make sure all is okay with my heart and the blood moving from the lungs to the heart and vise-versa.<br /><br />There was good news with my last CT scan.. compared to the first one I had in July, the inflammation is not as bad (about 10% less). It still shows scarring, mainly in both lower lobes, but more in the right lung. My oxygen level is still not good.. today on 6 liters and sitting, it was only at 90%. So we have to wait and see if the biopsys show inflammation the CT didn't show and if/what kind of treatment will be needed.<br /><br />I have another sleep study next Wednesday (12/10) to set me up with a CPap machine for when I sleep. I don't have sleep apnea, or a very mild case, but my oxygen does drop at night and Dr. L is hoping, with the forced air at night, it might help my oxygen levels during the day by opening my lungs more. And I see Dr. L again on 1/9 (if not before).<br /><br />So far what we know.. I have some form of interstitial lung disease and/or possibly a problem with my heart/lungs transporting oxygenated blood. My pulmonary function is at about 63% (as of August). My aretial blood gas was at 59..a good level is at 75 (also in August).</span> </span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-29267290449104186062008-12-02T17:37:00.000-08:002008-12-02T17:53:09.133-08:00Waiting ...<span style="color:#990000;">is the hardest part... of everything! Tomorrow I should be getting my results of my lung biopy... but it seems like the last two weeks have just dragged on.</span><br /><span style="color:#990000;"></span><br /><span style="color:#990000;">Today was the day of *find the CT scan films*. I picked them up from my pulmonologist,, Dr. L to take to my surgeon's office, Dr. G. Dr. G wanted to keep them to plan the best places on my right lung for the biopsys. No problem (or so I thought). I called Dr G's office the Monday before Thanksgiving to see if I needed to pick up my films. After being transfered a couple of times I talked to the person in charge of the films who said she was going through them on Tuesday and <em><span style="color:#000000;">if I wanted her to send them to Dr. L's office or if I wanted to pick them up</span></em>. Well, my mistake, I asked for her to send them.. saving me a trip. Well, today, the hospital called to ask if I had the films because Dr. L's office didn't have them. No I told them Dr. G's office was sending them. So the hospital called Dr. G's office, they couldn't find the films, and the hospital was told <em><span style="color:#000000;">Dr. G's office doesn't have a carrier service</span></em> (they why offer to send them for me). ::sigh:: And the recopies will cost $10 a sheet (about $190 to $220).</span><br /><span style="color:#990000;"></span><br /><span style="color:#990000;">Tomorrow at 11:30 am I have my appointment with Dr. L.. hopefully we will have an answer.</span><br /><span style="color:#990000;">Until next time.. take care and live life to it's fullest</span>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0tag:blogger.com,1999:blog-737929576615443775.post-16857855255916688882008-12-01T13:42:00.000-08:002008-12-01T14:06:23.109-08:0024 Days and Counting..<div align="justify"><span style="color:#006600;">until Christmas 2008. Where did this year go? </span></div><div align="justify"><span style="color:#006600;"></span> </div><div align="justify"><span style="color:#006600;">We have about half of our Christmas shopping done.. and without setting foot out of our door on </span><span style="color:#000000;">Black Friday</span><span style="color:#006600;">...after working in retail for many years, the last thing I want to do is shop when the crowds are crazy. My youngest daughter (who is 6 3/4 years old) is done. The rest of my family I have picked up a few things here and there. I want to be done by the 15th.</span></div><div align="justify"><span style="color:#006600;"></span> </div><div align="justify"><span style="color:#006600;">Our Thanksgiving was great. My Mom and her best friend, Helen were here to visit and share our feast. I did all the cooking (besides the great apple salad my Mom makes) and loved every minute of it. I love to cook, and with my lung problems it's not always easy, but Thanksgiving was special and my body didn't mind. Mom and Helen left on Saturday and we miss them. Hopefully next Thanksgiving will be even better.</span></div><div align="justify"><span style="color:#006600;"></span> </div><div align="justify"><span style="color:#006600;">This week is going to be a stressful one. On Wednesday I hopefully will find out the results of my lung biopsy I had done on November 17th. I have an appointment with my pulmontologist Wednesday at 11:30 am.. I am hoping the results will be in and they can tell me what the problem is.</span></div><div align="justify"><span style="color:#006600;"></span> </div><div align="justify"><span style="color:#006600;">Until next time.. Take Care</span></div><div align="justify"><span style="color:#006600;"></span> </div><div align="justify"> </div>Lynnehttp://www.blogger.com/profile/16440803043889851229noreply@blogger.com0