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.