Hope💕💕

Fibrosing mediastinitis is for sure a devastating diagnosis. But for you newly diagnosed…I wanted to share this article!! I know several other individuals who were treated with these injections and are showing encouraging results! I know we might be diagnosed with the same illness but our bodies are so different on the inside that one treatment may work for some while doing nothing for the rest of us.

Either way though, more options are becoming available so please continue to push forward and fight for some form of treatment! I have heard great things about Dr. Peikert who is listed in the following article. My doctors have even visited via email with him so if you have a great medical team but they may not know what the next move should be…have them contact Dr. Peikert! He is usually eager to review scans and give advice. I am so happy for those who will benefit from this and will continue to pray for those who are still searching for the right form of treatment. #hopeforacure #dontgiveup

https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/management-of-fibrosing-mediastinitis/mac-20471676

A short, but longer break from Iowa City!

I had a follow up with my cardiologist and overall it was an encouraging visit! I did the routine scan…

and after comparing it with my previous scans the doctor determined that all of my pulmonary veins and arteries looked pretty stable with no major changes! While it can still be frustrating when there is no “evidence” of what is causing my flare in symptoms, I am extremely grateful that my heart and pulmonary stents have not gotten worse. I am even more excited when my tests confirm that my left lung is still going strong with no masses!

And like I said in my last blog, my breathing tests were terrible the other week when I saw my pulmonologist so that could very well be the reason for my symptoms too. I am praying that the new inhaler will indeed provide relief, especially from this dang coughing and chest pressure!

I do not have to return to Iowa City, Lord willing, until at least March…that’s like a vacation!! The whole process will then start over again with scans and follow up appointments with each specialist!

Of course I am extremely grateful for such a good cardiology report and know that regardless of my symptoms, my heart is still holding its own! So while this has motivated me to move forward with my physical goals, it has also been a little discouraging at times when my symptoms are in full force like they have been so thank you all for the prayers and support you continue to send our way! God is so good💕💕

The start up of follow ups

It’s that time for all of my follow up appointments so here are a couple of updates!

First with the great news!!! Yesterday I had a follow up on my eyes and once again everything looked pretty stable so no injection and I go back in six months!!! I really cannot express in words how happy this makes me because that means a guaranteed six months of no eye injection! I am beyond grateful how God used my previous doctor leaving to lead me to this doctor! And not just because he hasn’t given any injections (although that does help haha) but because I truly do trust him and feel he is doing what is beneficial to me, and not to him!

Then today I was back in Iowa City to see my pulmonologist which was by far the worst I have failed at my breathing tests. On my last attempt to push out all of my air, there was a sudden loud bang that made my tech turn around and shoot straight up from her chair while I shoved the stupid tube away from my mouth and kind of crouched down in the booth. We discovered that part of the plastic thing in the tubing had popped like a balloon while I was blowing out!! She said that was the first and we were both laughing so hard after we thought about how ridiculous our reactions must have looked!! I told her I do these things every six months so guess it was time to make it a little more exciting! Unfortunately my breathing was the worst it has been so as a result of today’s appointment, I will be starting an inhaler again in hopes of helping with some of my symptoms…mainly the horrible chest pressure and my cough which I have been dealing with for about a month. I have had to leave church in the middle of service and sneak out of other activities or avoid them altogether because of extreme coughing spasms. They are horrible and very intense!

November 4th I will do more scans and see my cardiologist to get a better idea of the progression and discuss other options we might want to look in to.

Like I mentioned earlier…having a doctor you can truly trust is a must!! And while I have an amazing medical team, my pulmonologist is probably my favorite doctor! He is very knowledgeable about fm and all of the other health issues I have going on and he really listens to me. He does not sugarcoat anything and tries to rule out all options, not just assume what might typically be a given.

I have some personal fitness goals I am working on so while discussing them with him today he explained the whole muscles use oxygen and the stronger our muscles get the easier it is on our respiratory and body…all that stuff. I told him I’m pushing myself as hard as I can in hopes of getting stronger and building stamina to meet my goal. He then pointed out that is my human nature to push myself but that fibrosing mediastinitis is a very bad disease and does indeed cause extreme damage which will continue to put a limit on my abilities. For the first time I felt like my doctor was indicating that while I push myself as hard as I can, I may only be able to maintain what I can do now and not necessarily improve. I just smiled and thought to myself…challenge accepted!😉

I can’t wait to see him in six months and tell him all about meeting my goal…and I’m pretty sure he’s hoping I’ll have a story to tell as well!!

Thank you for all of the prayers and support today and every day!! Enjoy your weekend!!

Another successful angioplasty

Last week I went in for my follow up scans in regard to my SVC stents. As I had stated in my last blog, symptoms have slowly been coming on stronger so I was confident I would be doing angioplasty to open them back up. And as suspected my stents were indeed narrowing, however, I also had a new area of concern with some veins higher up in my neck.

I first had to assure my interventional radiologist(SVC doctor) that I was continuing to see my cardiologist and I do have an appointment scheduled within the next few months for a follow up. He then went on to explain that as I know, my case is unusual…and when doctors start with that, I know what they say next is usually not encouraging. He explained that of course we want to keep the stents open as much as possible, however, now those stents appear to be pressing on other veins and causing damage so we would set up an angioplasty to get a better idea of what is going on.

He then looked at me knowing what he was about to tell me would not go over well. The doctor pointed out I have had an excessive amount of angioplasties in which they have always entered through my upper arms to access the SVC stents. He reported that the veins in my arms are getting too weak and therefore he would be going through the groin from here on out. I couldn’t resist letting out a groan as he finished his sentence. He assured me he would be able to access all of the concerned areas through one incision. My only response to him was “that’s what the last doctor said and I’ve gotten an incision on both sides every time!”

The nurse and I compared schedules and I was set to have angioplasty within the week.

So…I had my procedure Wednesday and praise the Lord it couldn’t have gone any better!

I have been having to get my stents open every three months and I was thrilled it had been six months since my last angio so I got to enjoy the entire summer with my kids! Tim and I decided I would have his mom Debbie take me so that he didn’t have to waste more time from work for another hospital day! Plus he has been really busy so we decided he should save his remaining days off for when I am healthy and we can do fun things…basically he has no excuse now not to take us on another getaway!

My mother in law picked me up and it was a very nice change! Our conversation was a great distraction for me plus it gave us a chance to actually visit without kids always interrupting! And I have to admit…it was kind of nice that she didn’t eat a delicious McDs breakfast in front of me unlike my hubby who always has to!

When we arrived to check in I looked at her and said “welcome to my world!” I was greeted with big hugs and smiles by my most familiar nursing team although they were disappointed not to see Tim and talked about what a devoted husband I have! I was just ecstatic to see them all and thanked the Lord for my regulars!!

The procedure could not have gone anymore smooth! I went back to surgery at 3pm, was done at 4pm and on our way home by 5pm. They only had to make one incision in the groin, I didn’t feel too much discomfort during the procedure and I had received anit nausea medication so the pain medication did not upset my stomach too bad!! I was thrilled to be feeling good with Debbie because I was so worried she would have to be pulling over into one of our usual puke spots!

I came home to some super sweet notes from my kids…they wrote a nice bible verse but Leah’s emoji!!! Apparently she got a kick out of herself haha!

They also left some goodies throughout the house for me to find…

Debbie took the kids home for the night so I could rest and not be tempted to overdo anything with them around! My parents and Skye had also helped with the kids throughout the day and my mom made food to last us a couple of days so I wouldn’t have to worry about cooking! Tim and I are so grateful for our family and friends who are always willing to help out with anything at anytime!

As far as the findings during my angioplasty, it turned out that two SVC stents were closed almost 80%. Thankfully the doctors were able to open them back up as far as they could because like my doctor had told me last week, it is a fine balancing act now to try and keep those stents open without causing too much or anymore damage to the other veins.

And then the new area of concern…apparently my right internal jugular vein was reported to be 100% closed and the other jugular vein is closed about 50%. I asked the doctor if this was serious and he said as long as one stays open I’m good. Plus, my body was already working to try and compensate for the loss of veins! I joked that I have done well with one lung and one eye so I should be just fine with one jugular vein!

The jugular vein is a vein in the neck that drains blood from the head, brain, face and neck through the superior vena cava towards the heart. So yeah…I have quite the blockage issue of getting blood from my head to the heart since my SVC closes too!!! When the blood doesn’t drain it can cause pressure on the brain. This is the reason for my most recent neck pain, swelling and headaches. These are also similar symptoms I experience when my SVC is closed so I will be anxious to see if I feel any differently after opening the SVC stents back up. I asked if they could put stents in the jugular veins and he hesitated saying yes but my body had already tried to compensate for the damage by making new collateral veins, which is a good thing! He went on to say we would need to discuss options and outweigh the risks before intervening.

I see my pulmonologist and will do pulmonary functioning tests in October then I follow up with my cardiologist in November. I will talk with both of them about my recent findings then I will return to my interventional radiologist to do another scan and discuss more options as to how we will proceed with these new issues.

Until then, I really am doing okay with the new progression of this disease because I know regardless of what the test results might say…I am going to be okay!! Now that my angioplasty is over it is time to focus on my bible study and getting the kids back to school and in to a routine again!!

Enjoy the rest of your summer and thank you for continuing to lift us up in prayer!

Three months!!

I had a follow up on my eyes the other day to see how things were going since we had decided to hold off on my injection last month.

Just like last time, the wait was impressively short before I was called back to check my vision, pressures, dilate my eyes and do scans! Asher and I were then shown into another room where he played on his iPad…

and I checked out what kind of room we were in noticing medicine with a syringe sitting on the desk. “You know what is best for me Lord” I reminded myself as I prepared for what the results might bring.

The doctor came in, reviewed my scans, examined my eyes and said everything looked great! He explained my vision is 20/20 and he saw no swelling or leakage so I need to return in three months!!!

8 laser surgeries over a course of three years followed by one year of injections that I received every 4-6 weeks and now I didn’t need to come back to the eye doctor for THREE MONTHS!!! I could barely contain my excitement as I raised my hands, let out a little shriek of relief and thanked him!! The doctor laughed, shook my hand and gave Asher a fist bump as we walked out.

I immediately texted Tim on yet another great eye report!!

Summer has been flying by for me and the kids and I am definitely enjoying all of the time off from my doctors. And when I say time off I mean only having one or two local appointments a month!

As far as Iowa City goes, I was scheduled to see my SVC doctor at the end of August and have a ct scan but unfortunately my symptoms are starting to slowly flare up a little more as each day passes. I have developed my cough again and while I sometimes question if it’s just from the hot and humid weather, I am also having more pressure in my chest with continued bouts of brain fogginess, headaches and just pure exhaustion. And since my stents were narrowed a few months back, I am confident I will need angioplasty again so I did go ahead and bump up my scan and doctor appointment to the beginning of August.

Until then, we have a busy couple of weeks with gymnastics, Leah will be in a parade and we have a few different family visits planned. And even though my symptoms do make these events and every day life more challenging for me…I am beyond grateful that it will be over six months since I have had angioplasty and I am even more thankful that I won’t be getting needles jabbed in to my eye for the next few months!!

Hope you are all enjoying your summer and if you’re in my area…stay cool this week!!

A good beginning

Second day of summer and this little guy was already stuck with me at an appointment…

Today I had my follow up eye appointment with a new doctor and I will admit I was a little nervous as to how it would go! Since this was a whole new clinic I had to fill out my extensive medical history and I couldn’t help but giggle as I whispered to myself, “these poor doctors have no idea what is coming.”

The nurse called me back to a room where we reviewed my medical history, which went extremely smooth, and then she checked my vision, pressures and dilated my eyes for scans. Asher and I were then sent back to the waiting room area until the new doctor was ready to see me.

I was pleasantly surprised by how fast the process had gone and we were barely in the waiting room before I was called back again to see the doctor. He introduced himself then examined my eyes. He had already reviewed my history to know my injections had been pushed back to eight weeks, meaning I would be due for an injection within the next week or so! I had prepared myself for an injection today yet had been praying I would not need it.

The doctor concluded that my vision was great, pressures were great and my eyes looked great so he wanted to hold off on any injections at this time!!! A few months ago I had gone to Iowa City for a second opinion regarding these injections and that doctor had also said he would probably just monitor my progress without injections so I was 110% confident in this new doctor’s decision! I was beyond ecstatic and gave Asher a thumb’s up!!

I do, however, need to return in one month to repeat the same scans. While this is wonderful news, we do need to monitor things pretty close right now. Since I had been getting injections so regularly we really have no idea just how much the injections were helping so we want to make sure the swelling and leaking of blood vessels in my eyes does not progress too fast to the point of causing vision loss.

Asher and I topped the day off with a quick lunch before heading back home…

I will have a diabetic follow up at the end of the month and then I return to the eye doctor in one month. I am not scheduled for any Iowa City appointments until August so I am looking forward to enjoying the summer with my kids!

I heard this song the other week and wanted to share!! While I was quick to thank God for today’s report, I am also grateful for the struggles I have endured because they have given me the opportunity to re-examine what truly is important in this life. I was finally able to see just how good God really is and how He used my heartache, my pain, my procedures and my surgeries to draw me closer to Him!

Six month mark!!

Today I had another appointment in Iowa City, this time with my cardiologist, so after playing catch with Asher before school…

and then getting all of the kids on the bus, I headed out!

After a good morning with the kids, an encouraging devotional and such beautiful weather, I was confident that today’s appointment was going to go well…and it did!!

My regular nurse checked my vitals then asked if I was by myself which I replied “yep.”

She then said that was unusual since my husband has always been with me. I informed her that a new job had taken away that flexibility for him to attend all of my appointments but as long as the weather is good, and as long as I’m not having a procedure done, I don’t mind flying solo!

I reviewed my symptoms with the med student and then the doctor came in and assured me that the pulmonary stents and past scans looked good, my pulmonary pressures were great and from his end, he had no concerns regarding the angioplasty we had done back in February!

I was also ecstatic to hear that instead of four months, I don’t need to come back for six months to follow up and do another ct scan.

I did forget to mention to him though that I will actually be back in a couple of months to do another ct scan for my SVC stents due to them narrowing so most likely my cardiologist will be able to look at those scans without me having to repeat the same testing a few months later.

As we were finishing our discussion my doctor randomly said to me “don’t be afraid to overdo it, keep pushing yourself.” I smiled and said that was reassuring because I definitely do push myself to the limit and he simply replied “good!”

I walked out to the hall and called Tim to fill him in on how well my appointment had went. I told him what the doctor had said about me pushing myself and Tim joked saying obviously God put Tim in my life to do just that.

Tim knows when I’m not active because of my symptoms and he knows when I’m not doing something because I’m in a funk and just tired of being sick and tired so…he challenges me! And boy does he make me mad some days haha! But we all need someone who puts those hard truths in front of us and I am thankful that Tim is able to do that for me…all while managing to make me laugh at the same time! He pushes me to fight and he pushes me because he knows I am capable of so much more. He reminds me of the blessings around me and he pushes me to not give in to this illness!

So yes, I do actually agree with Tim this time that one of the reasons God brought him in to my life was to do just this and I hope I am doing the same for Tim!

No trips to Iowa City now for three months!! Thank you all for your support and continued prayers!!

Starting over

I was supposed to get my eye injection this coming Friday but the office called to see if I could move it up which I agreed due to the fact that at my last appointment, my doctor had said possibly one more shot then I could take a break! I was all for going in a couple of days sooner to get it over with especially if it was going to be my last injection!!

But, that didn’t happen. In fact, he simply said I would need another injection in eight weeks and acted as though the possibility of this being my last injection had never even been discussed. I got my injection which always leaves a red spot…

…and then that was it!

Today was also the last appointment I will have with this doctor because he is leaving. So, after six years with this doctor it is time for me to start all over in search of a new doctor who is going to be willing to deal with me and my extremely complex medical history!

In the past I have become overwhelmed when I had to find a new doctor because it’s hard enough explaining this illness to my regular doctors, let alone someone completely new who knows nothing about me and has most likely never heard of Fibrosing Mediastinitis. This time, however, I am not worried. Don’t get me wrong, it is going to be a pain going through the whole process of finding someone new because chances are I will come across at least one doctor who will not feel comfortable working with me and will just pass me on to someone else. BUT, I also remember the last time my insurance changed and I had to find a new doctor in regard to my fm. I was scared and stressed out but that change lead me to my amazing medical team that I still have today!

I really believe this is a blessing and God is going to lead me to some pretty amazing doctors along the way! He tends to do more for me than I could ever imagine!!

So while my appointment didn’t go as I had hoped, I am thankful that the injections are pushed back to every eight weeks instead of every four weeks. I am also thankful that I have not had anymore vision loss!! And I couldn’t help but also be encouraged by what my eight year old daughter had replied to me in regard to not placing at regionals this past weekend “I am sad but God has a plan.”

I hope you will all remember those words too and lean in to the Lord when you are finding yourself in the midst of struggle! Enjoy the rest of your week!

Keeping up with Asher

Today was the follow up appointment from my SVC angioplasty back in December. I got prepped for my ct scan…

and then once the testing was done, I saw my doctor to review those scans. Not surprising…some of my stents are narrowing again. My right stents look to be holding up pretty well with good blood flow, however, my left stents closed back up to about 40%. After more discussion regarding my symptoms we decided to hold off on another angioplasty for now. Instead, I will schedule to do another ct scan in three or four months and then most likely I will probably need angioplasty to open up the SVC stents at that time.

While it is discouraging that my stents seem to be closing up fairly quickly after my procedures, I was ecstatic that this appointment did not result in immediate scheduling of another angioplasty! Like I have said, I am grateful that doctors can still intervene and help manage some of my symptoms but I just did a procedure in December for my SVC stents and then in February I had another angioplasty to open up my pulmonary stents. I’m kind of tired!!

And speaking of tired, Asher had Monday and Tuesday off from school so I got to spend some one on one with my little guy!! Our days were busy but so much fun!! He is so helpful and couldn’t wait to help me clean the kitchen…

…and bake cookies!!

He also helped me run errands…

But while we worked hard…we also played hard with puzzles and board games…

We were also blessed with some beautiful weather so Asher and I got to play at the park…

And enjoy a walk on our local bike trails!!

I am purely exhausted and we are only halfway through the week haha!

My next appointment in Iowa City is at the beginning of May to check my pulmonary stents and then I also have an eye appointment in May which will hopefully be my last eye injection for awhile!!!

I never know what my scans and appointments will bring so I really do try to enjoy my days to the fullest in between doctor visits!

And as resurrection Sunday approaches, I am reminded of the ultimate sacrifice Jesus made for me and I will continue to put my hope and trust in Him regardless of my test results.

John 3:16

John 11:25

My fear doesn’t stand a chance

I had my follow up pulmonary appointment in Iowa City last week. All in all it went pretty well! I did the fun pulmonary functioning breathing tests…no pictures of me in the booth this time!

My results were consistent with what they were six months ago so no major changes there!

I do, however, still continue to battle that horrid brain fog later in the evening and especially in the morning. And while I don’t sleep the best, I do usually fall asleep extremely fast and then I wake up very confused throughout the night and in the morning.

Tim continues to joke about how super sweet he was the night before and it’s too bad I never remember but it only takes about five minutes for my brain to clear before I can assure him that was not the case haha. We are still finding ways to make light of my struggles and the way he has always been able to make me laugh is one of the many qualities I love about him!

Anyway, since I have had this morning brain fog for quite some time, my doctor questioned if I am getting enough oxygen during the night. He decided to order another oximetry test for me to do overnight and thankfully I was able to do this at home! I had this test done maybe three years ago so it’s not a big deal. I just wear it like a watch and clip the monitor on to my finger then it will record my oxygen levels while I am sleeping! The purple one is mine that I use to keep track of my oxygen during exercise or any other daily activities and right away I started the night out lower at 93.

Earlier in the day it had really dropped while I was cleaning house…I always tell Tim laundry is going to be the death of me!!😜

I was a little concerned about what my levels would do overnight! I obviously wasn’t too concerned though because I could not resist whispering in the dark with my raspy voice and glowing red finger… “ET phone home”!!

I still laugh thinking about it but Tim just shakes his head at me haha!!

I completed the test then took the meter back the next morning and went about my day!

And of course my day was filled with yet another doctor appointment. I had my follow up diabetic appointment which required more lab work…

…but thankfully all of those tests came back fine too!

And then Friday I got the call on my oximetry test!

Apparently I kind of “failed” the test! My oxygen had indeed dropped significantly over night, to the point where I qualify to wear oxygen at home. HOWEVER, I apparently was just over the qualifying mark by like one minute so now we needed to make a decision. The whole point of using oxygen is to help my body do something it can’t do so once I begin wearing oxygen at home my body will not have to work as hard which could then eventually make me more weak in the long run! And the fact that my levels only dropped one minute longer than needed for me to qualify isn’t that terrible considering I only have one really good working lung! I live every day with symptoms such as chest pain and shortness of breath that “normal” people would be encouraged to seek immediate medical attention for so why should this be different? If I start oxygen now because I skimmed past the qualifying point…will I ever be able to go back to not needing it or will I just start to gradually decline from that point on?

After more discussion with my doctor, we decided that while yes, the brain fog is annoying and I continue to struggle with fatigue, the oxygen most likely would really not benefit me much at this time.

So while my first initial reaction tends to be discouragement because I feel stuck in between too sick to be healthy and too healthy to be sick, the last thing I ever want to come off as is ungrateful! I am able to see how good the results really are! I also thought back to my initial diagnosis when I was searching for a doctor who could help me. When stents became a possibility I didn’t think twice about getting them because I felt like I had no other choice due to such severe symptoms. Right now I don’t feel that strong about needing oxygen.

Like one of my friends pointed out…my body is still functioning!!! It may have to work a little harder or it might be a little slower but my body is still trying to do what it needs to be doing! And I am extremely thankful my levels were not dangerously low to the point where it wouldn’t even be questioned as to if I needed oxygen.

I am also grateful that God has lined me up with such knowledgeable doctors who don’t ignore me or just push meds down my throat but instead encourage, support and challenge me!! My doctors genuinely care about my overall health and see me as someone’s wife, mom and daughter…not just as a patient so I know they will truly do what they feel is best for me!

After all of my doctor appointments and tests and labs were done for the week, I spent one afternoon observing as our older two kids helped Tim out on the farm!

Skyler had stopped home to visit…well to do laundry but I’ll take what I can get! She jumped right in to help Tim…

…and to play catch with her baby brother!

A simple every day moment…just watching my family do their ordinary daily chores and the fact that I was walking around outside breathing in the fresh air gave me an overwhelming sense of God’s presence. I don’t know how to really describe it but I had such a strong appreciation for the health that I have and I am so extremely thankful for all of the days God continues to give me on this side of heaven with my family! I mean…how can you look at this kid and not praise God for these precious little moments?! Nothing better than flip flops, football and a telescope out on the farm!

Next week I am back in Iowa City for a follow up on my heart stents. I will do another ct scan to make sure all of my stents stayed open from my last couple of angioplasties and I am praying there is no progression. But regardless of the results, I know Jesus has already gone before me and I have nothing to fear because in Him, I am already healed!