Medical Updates

It's been awhile since I've updated you on how I'm doing. My first round of follow-up appt's have arrived. Last Friday I went to see the pulmonologist and overall, it was a pretty good visit. From the time this all started, I never wanted to see any of my scans (my lungs, my brain, my spine, etc.). I felt that I could handle what they were telling me and was somewhat afraid to see the pictures....as if that would make my ability to remain strong and deal with this that much harder. But at the appt. on Friday, I was open to looking at the scans of my lungs and I have to say....boy did it feel so much more real. I just kept thinking, "They are right. I should not be standing here looking at this!". My lungs are a mess. Blood clots everywhere within the vessels. A couple were very large, expanding the walls of the vessels and blocking everything else down stream. What did I expect??? I don't know. I was told all of this. It just somehow made it more real! (if that's possible). I stood there in shock and wasn't sure if I should laugh or cry. Ultimately I made light of it and began to laugh telling him how crazy it looked. And, the pulmonology fellow just kind of laughed along with me and began pointing, "See that one, you should not be here. See this one, any older and you would not be standing here, see this one..." and on and on.
So, the good news, I AM HERE! I'M BREATHING, I'M NOT ON OXYGEN, AND MY BODY IS AMAZING!
What to be concerned about and what's the plan from here? 1) Protecting the right side of my heart function d/t the current number and severity of the clots in my lungs. So, I can't over do it. Light exercise is ok but I have to monitor my heart/lung function carefully. 2) Next week I will undergo a series of respiratory tests to see if I need any other assistance to ease breathing and lessen the strain on my lungs and heart. I still have quite a bit of chest tightness/heaviness, shortness of breath with exertion, etc. They did prescribe an albuterol inhaler that will help to reduce any inflammation that could be a result of the clots. 3) Also next week (if scheduling works out) they want me to have an ultrasound of the vessels in my legs to make sure there are no more blood clots sitting there just waiting to jump ship to my lungs!HAHA (gotta have a little humor). 4) The first week of June, I'll have a repeat ultrasound of my heart to re-assess structures and function. They want to make sure that my heart is not being damaged or taxed too much and they will compare it to my last heart u/s that was done while I was in University Hospital. I am still on blood thinners and will be for 6 to 12 months (the time it will take for these clots to resolve). The only thing that might change this is if they find I have a clotting disorder which would result in needing to be on blood thinners long term.
Monday I had a repeat spinal MRI at Christ Hospital. Luckily they only had to focus on my cervical spine, so the scan only took about 40 minutes. I have to say, there was quite a different "feel" to this one compared to the others. Meaning, with the other scans, I was hospitalized and very removed from my family and life. I was objective and it became sort of common place to be going for tests. This time, I had been running the kids from place to place making sure Ella made it to school and Will to his Aunt and Uncle before going to the hospital. Then laying there thinking I would be leaving to pick them up and go home. All I can say is that it was a much harder reality this round. Anyway, the plan is to re-check the tumor, compared to the findings one month ago. I don't have any information right now but have a follow-up appt. with Dr. Bohinski, the neurosurgeon, this Friday.
After this week, the next follow-ups are Hematology next Friday and then a repeat hearing test and follow-up with Dr. Samy (my surgeon) early April. My mobility gets better and better every week. I have started the next round of physical therapy through an ortho-sports clinic and am looking forward to what progress lies ahead! I haven't needed the cane around the house as long as I move at a safe pace for me. I've had to put wearing the brace on my left leg on hold thanks to the pulmonologists. They sort of "freaked out" b/c we have not ruled out whether or not I have more clots in my legs. So, I'm trying to do my best without it!
In short, just know that my life is moving on and all of this is just intertwined in the mix! I can't say for how long but am hopeful things are moving in the right direction. I'm happy to be back to work and love seeing all the babies again. Being home and back to work has given me purpose and my perspective on life is forever changed. I thank you for your continued prayers and can only ask that you continue. I have so much more ahead of me. Love to you all, and hope you are enjoying the start of spring weather!
Kelly