Update

Hello. Been a little while. Hadn't really felt like writing too much lately. I think I am just feeling sick of this junk. I feel like I am in a rush- but for what? Closure?? What would closure even look like in this situation. Prob not closure. I think maybe just to move on to the next step. Maybe to get some good news that this is all curable. Maybe to wake up and find my life is back to how it used to be. Yes, I am whining, tired, worn out, need a vacation from work. Lifted the lawn mower up with my son onto the back of the truck bed and then later that day helped lift a somewhat unresponsive patient up on the bed. Not good. It's been out all week since then. I can not any longer take Ibuprofen since I am now on blood thinners due to the clots. So unless I take stronger meds like hydrocodone or tramadol I am stuck just suffering as Tylenol doesn't get this type of pain. *** I did receive an email back from the Dr in Cincinnati. He thinks for sure there are blood clots based off the biopsy sample. No way they could be anything but. He also is leaning auto-immune disease still. Possibly even a long shot he said, but IgG4. He did warn me there is no way to put what is going on in my lungs into an easy diagnosis. He thinks I have LAM and something else. Lung issues are hard to put in a box and not easy to figure out or solve. I did tell him I would come see him as a patient and then we will go from there. That really is all that is new with me. Feels like same old stuff different day. Kids are trying to talk me into taking them to Florida again. Not sure we can swing it- they said they are willing to save their money from their babysitting jobs and lawn mowing company etc etc. to help pay for it! I sure would like to go. Just to lay there and veg on the warm sand with the wind, sun and surf. The sights and sounds of the birds and children laughing and playing. My kind of day. Have a good week. Talk to you soon. I had a wonderful scripture for you and now I forgot it. Was in Deuteronomy I believe. Oh well. John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:26-28 (in Context) NO FEAR. I forgot to tell you the best part- the Dr does NOT think I need a pulmonary endartectomy (although haven't figured out how else to get the blood clots out?) nor do I need a lung transplant! Don't know if he meant now or in future. I can't wait to pick his brain in depth. Starting my list of questions.

Funk

Went to the hematologist today. He said he definitely does not think their is a hereditary clotting disorder going on. Said it is localized to my lungs only. Wants to send me to a rheumatologist to check the auto-immune route.. thought we'd already been there. So we'll see. Beginning to feel like chasing a rabbit. Waiting on Dr. in Ohio to determine which would be the best Mayo Clinic to go to. Talked to a friend today who mentioned how they went to a Mayo Clinic and how they wish they had done that 5 years ago. They were able to find out about a certain issue in a short amount of time, that they had spent years/dollars trying to find answers at a local hospital. Kind of got me thinking-not to waste time and get to the Mayo Clinic and to NIH for testing/eval/studies. I do not feel like I have much time to waste. I have SO realized the importance of staying on top of your health information and following through on things. For example- today I went to the hematologist. They draw the WBC (white blood cell) count and then wait for that, then take you back to the Dr. He came in and we were talking and he had a bunch of "old info." He did not have the Mayo report of the biopsy. Apparently the referring Dr did not send it. This Dr. works off another system so they had no way to get it. They called the pathology department to no avail. So, ME THE PATIENT, calls the referring Dr. whose secretary states they gave me the original report and did not keep a copy? SERIOUSLY?? What Dr. office does that? She acted like I was in the wrong? Crazy. So then I call Ohio Dr. thinking okay, they have a copy they can fax me one. Had to leave v/m. So I called pathology dept. (yes the same people who lost the original report from Mayo for 3 weeks before I called up there twice to get it!) She had not sent it to be scanned into the computer system so no one could find it- she HAPPENED to have a hard copy of it there so going to fax it to the Dr. right then. So about 10 minutes, then 15 go by and NO fax. Dr. comes back to tell me they are still waiting on it. SO ME- THE PATIENT, calls back to this gal again. "Oh, it didn't go through." Seriously?? That is your job to check and make sure it goes through at the time of faxing it!!!! Aaaaaaaargh. Thanks for letting me vent. I just can not believe how this all happens.. and if it happens to me- you know very well it happens a lot and to others. What if they were old and didn't follow through or were too sick to put out the effort, or just didn't know how to get involved in their own health care. It really bothers me. Helps me to realize how to be a better nurse in general. So after all that, this Dr. says it may be idiopathic- meaning we may never know the cause of why this has occurred. I think I am okay with that. I'd just like to get through it :) I have been getting short of breath a lot lately- again, still trying to sort out what is psychological and what is real. I get dizzy and feel like I am just going to drop because I am not getting enough oxygen to my brain. I have been saying this for a few years now. It's not a fun feeling.. Kind of worries me. Still have to get some paperwork/CD's of MRI's/CT's to the NIH, National Institute of Health so I can go there and get evaluated and tested to try to see what is going on/get in a study. I may not qualify did I tell you? At least for the LAM study because of my other issues. Sounds like they still want to see me. Something weird too- this Dr. today said the only real thing to do with my lungs is to treat the symptoms, which really goes against all the studying/research I have read on CTEPH. Such lesson for the day is remember your Dr's are human and although they try, NO ONE is concerned with following through on your own medical case as much as you are- so stay in the game and do not take no for an answer. Follow through on all aspects and get the care you want and need. On another note, picking up some more hours at work, not only to pay these bills, but the kids are pretty much begging to go to Florida and of course I am not fighting them on that since I love the ocean/beach so much. I told them this time they would have to help out and put some of the money they are earning this summer towards that. So MOST have agreed. Will be interesting to see how it all pans out. Lastly, I can not at this time go into detail- but really need some serious prayer that the neighbors move and quickly. Soon enough I will fill you in- until then please ask the Lord to have them move. Thank you. Random observations - The very best days are these- when you make a difference in someone's day/life and you see the progress your children are making in their walk with the Lord.

Pulmonary Endartectomy

Greetings everyone! I hope you are doing well. I have regained some momentum and started researching again. Basically, what I think I have found out is this. The only definitive treatment for Chronic Thromboembolic Pulmonary Hypertension is a Pulmonary Endartectomy which consists of well I probably shouldn't say on here. It may sicken a lot of non-medical people. Again, I find it fascinating, I just do not care to be on the receiving end of it. This surgery is not for everyone. It depends on where the damage is, how bad and if they think they can get it all-(this from my understanding). The surgery basically consists of cutting open the chest, shunting the blood with a machine so they can operate mostly bloodless and deeply cooling the heart for surgery. Not a fan of cold. :) ** I have been in contact with the NIH, National Institute of Health in Bethesda, MD. She said the fact that I am on blood thinners now may preclude me from being able to enroll me in any studies for LAM. She did say however obviously I have a very strange case going on and they would most likely want to see me. Sometimes they only see you once, sometimes you are called back for more testing, follow-up and/or studies/treatment. They fly you up there, pay for everything, poke and prod you, and then send you home with your results. This to help you find out what is wrong, yet more importantly to help the next generation of those who become afflicted, hopefully to prevent. ** I have been touched lately in many ways. A dear co-worker who broke my heart when she let me know she cries often for me. Another co-worker who doesn't like anyone to touch him who after reading my Mayo report came over and absolutely bear-hugged me. I truly believe he was praying over me as he hugged me; he also cried in front of everyone. Very humbled by all this. Another who slipped a gift card in my pocket without me even knowing it! The extra person at the altar praying for me, who wasn't there, no one saw this person praying for me. Just amazing really lately. So thankful to not only know, but to see that the Lord is there and working. To be a part of something so much bigger than myself. 2 Corinthians 4:8 We are hard pressed on every side, but not crushed; perplexed, but not in despair. Okay, I had to regroup and edit this and find the right scripture for the day.

VQ scan results

The results show low risk for me to have a PE. They rate it on high, medium or low risk. I'll take that. They were going to keep me they said if medium or high risk. Thankful it's low. That did not include any of the occluded arteries, they were just looking for PE and that only. I emailed the Dr. to see what the next step is. Will have to see still which Mayo to go to. That's really about it. Talked to an ER doc who asked how or if they know if the vessels are occluded from the inside or the outside. Good question. I have no idea. So many questions, few answers. Did I tell you I went down for prayer Sunday and my friend Bethany went with me? I had been hoping to grab her parents too and have them go down and pray with me but when I got over to that side of the sanctuary I could not see/find them. Well, we waited in line and then it was my turn and guess who they pointed us to - to go pray with but of course her parents, Liz and Jim. That is the first notice from God that he knows where I am at. So, we are all praying very hard/crying after a bit the 3 of them and me. I felt a presence behind me, and then someone laid hands on me on my neck/shoulders and back/sides. I thought it was my friend Noelle and her husband, that they had seen me and then decided to come down and pray with me, (we do that to friends). Then I felt the presence leave/hands leave and I never opened my eyes as we were interceding heavily, and I remember thinking, "Well, I will never know who was laying hands on me unless they come up then and tell me about it." Later that day I asked Bethany who had been praying with us? Who was the 4th person? (not including me) that was praying for me? She asked her parents and they knew of no one else. Then they asked around to their friend who was sitting in the 2nd row right in front of us and she said, "No one." They were the only 3 praying, yet distinctly there were 4 praying with/on/about me then. There was/is/will be no denying it. Absolutely amazing. I can not tell you the feeling except to say I am feeling very loved and not forgotten. This was the second notice of the day. Simply beautiful. I still get a smile when I think of it. Well- have a fantastic day. Pray for my Lammie friends so many have it so much worse than I. I ache for them. Until next time- Blessings Go out and make a difference.

Not what any of us expected

Today I talked to my pulmonologist who finally received the results of my lung biopsy from Mayo in Arizona. Even my pulmonologist said this was not what she expected. Basically it boils down to 3 things. 1. I have LAM that is now confirmed- we pretty much already knew that. 2. I have small airway disease related to being exposed to some kind of contaminant or aspiration or being in /from Southeast Asia. 3. I have severe pulmonary vascular disease. Many of the arteries are virtually occluded by old organized thrombi/possibility embolic pathology. So what this means is LAM is the least of my concerns now and I need to go to Mayo -somewhere- and see higher level of specialist not even so much related to LAM at this point. Well, never dreamed I had all this going on inside me. I tell you the truth it is by the grace of God and nothing else that none of the clots have broken off over the years (chronic) and gone to my head and caused stroke. Some of the signs of this vascular disease are dizziness, fatigue, and shortness of breath. I have all 3. Some medicines can help this- but there is no cure. They aren't sure what is causing this as it appears not to be related in any way to LAM. Could have started in my lungs and just growing or the clots could have come from other places in my body and just inhabiting my lungs. Amazing really. Who would have guessed. The awesome Dr. from Cincinnati called me to work through the next step with me and although I am still not his patient he is currently going to get with his team up there and look at all my info and go from there. You couldn't ask for a better Dr. I do so enjoy my local pulmonologist too she too is good; I like her. So- what next? Who knows. Still trying to wrap my head around this. I had more blood tests today and probably will have more in few days. They are trying to figure out what tests I should get but will start with a VQ nuclear scan of the lungs to determine extent of damage/occlusion in the arteries in lungs. I am going to have to start taking blood thinners (a kin to rat poison oh joy ) every day. Again, still on a road I do NOT want to be on. However, the Lord is in control and he can see the other side of the mountain as I can not. He knew this was coming and is not surprised. He is right beside me and all is okay. Knowing it is impossible to please him without faith, I will remain strong and believe in his promises. It's all good. Was a little sad earlier, now I think I am just tired. Did I tell you my allergies were sooooooooooooooo bad the last 3 weeks, finally yesterday I called my PCP and he let me come in and get a Kenalog shot (steroid) to take my immune system which was going haywire. Within 1 hour of shot, I started to tell breathing was becoming easier. I had been taking OTC sinus meds every 4 hours for days and Zyrtec daily. I could tell when the 4 hours was up as I couldn't breathe, sneezing, water eyes etc. etc. Well I got 8 good hours after shot and then woke up in middle of night with same symptoms. I took some more meds today, but not as much as have been. Apparently tree pollen is off the charts, but I have been bad before they started climbing. Not fun. Glad to finally get some relief. I did get some Flonase as that always helps. Well I can't think of anything else to tell you. Think that says it all for a bit. :) Hope your day is wonderful and sunny and breathing is easy! Blessings. Proverbs 16:24 Gracious words are a honeycomb, sweet to the soul and healing to the bones.

Not going to supersize this!

In the continuing saga of the lung biopsy. I found out that Mayo in Arizona did not lose my biopsy and that they did indeed have it. I got a call after my last posting from staff that said Mayo did have my tissue and had sent a fax with results to the hospital here, and that SOMEONE lost or never received that fax :) . It's all good, it's okay, but boy was it a frustrating day last week when having to call myself around to try to get my results, when I called last week and with good customer service our people here should have called and followed up to find out why such a long delay in getting them. Regardless, it is done and over with and I SHOULD have results early next week. I am curious now, can't wait to see them. Still have a peace about things and I refuse to let that go. I like what our pastor says about something his wife is going through and I am going to claim that as my own too. They decided early on they were NOT going to "SUPERSIZE" her medical issue. I love that!!! I refuse to supersize mine. It is what it is and I am healthy and claiming that and going on with life! There was something I was going to tell you and now I can not remember... Oh well, I will remember it sooner or later. It wasn't on this but this is on my mind- do I have wisdom, I ask for it a lot- but do I have it and apply it? Psalm 49:3 My mouth will speak words of wisdom; the meditation of my heart will give you understanding. Psalm 49:2-4 This is one of many scriptures on wisdom. I am needing wisdom in many areas, wait,- all areas of my life. I especially want to make sure that I am giving godly advice out when called on or led. I do not want to go through life or find later I was not in accordance with the word of God. Pray for me if you will. I put these on here mainly for me, but thought maybe you could profit from them also. Proverbs 1:7 The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction. Proverbs 1:6-8 Proverbs 14:8 The wisdom of the prudent is to give thought to their ways, but the folly of fools is deception. Proverbs 14:7-9 I got brave online and sent a msg to someone whose song inspires me and why, asked if they wanted to be a spokesperson for LAM- that's great- and I found my face was red as if I was embarrassed to meet someone face to face or shy or something. It was funny. Then I realized- wow I have no authorization to initiate that request.. Whoops.. so far no reply. I found it funny I was so brave all of the sudden. Hsving fun in this journey called life. Hug your neighbor or someone you cross paths with - too little human touch and a big hurting world.. Get out of your comfort zone and make a difference. Blessings.

Are you kidding me????

Oh my, what a day... I tell you the truth.. It has been 3 weeks now and still waiting on the final results.. They were sent out to Mayo in Arizona and guess what??????? True to form with this adventure-- they have never received them. I tell you- if I didn't follow up on anything seems like nothing would get done. It is hilarious, absolutely unbelievable. God has a sense of humor for sure, because one must laugh at it!!! Nothing new going on here, just looking for an answer. Still hoping for the best reports which would be nothing found! Woot Woot! Seasonal tree allergies are kicking in (we live close to a Tree City USA award city) so I am really suffering.. Zyrtec worked for about 1 week in early stages and now I am taking that and every 4 hours 2 sinus pills for sneezing/watery/itchy eyes, etc etc... Makes the work of breathing harder but nothing like some of my dear friends who have LAM worse. Pray for them please. Thanks.. Enjoy the beautiful longer days of Spring where things are made anew! Till another day-