FINAL UPDATE 7/9/24
HAPPY BIRTHDAY BLU!!!! What a harrowing 2 year adventure this has been. To this day, no doctor can explain why the fluid suddenly stopped draining from his Lymphatic system into his lungs. Only 7 months ago, he was getting 1.5-2L of fluid drained by needle from his lungs almost WEEKLY!
Today, on his birthday, I am delighted to report that he finally passed all the required tests and has received his license to return to work- giving mule drawn carriage tours to folks all around New Orleans. Yesterday (7/8/24) was his FIRST DAY BACK! This guy is so determined he is also working on his birthday. It's going to take a bit to get back on his feet financially, so if you feel so inclined to toss him a few bucks to celebrate that would be amazing! His first day back included a vehicular setback of the tread on his tire completely unraveling! I didn't know that was a thing. It hasn't phased him though. He is marching on, embarking on a second chance he didn't think he would get. My heart is so full!
His survival would have not been possible without ALL OF YOU! All of the donations, shares, Fundraiser shows/events, messages of love and concern... helped to keep him afloat while he faced this extraordinarily dark time. We are finally at a birthday that feels like it means something again. We will never be able to thank you enough for all that you have done.
Forever humbled and honored,
Tracy Starr
UPDATE 3/28/24
I know I have been quiet lately with the updates. My mom had an urgent surgery and I have spent the last 6 weeks on the west coast helping out. Things are going as good as they can and I will be home next week. I have been still keeping an eye on Chris and I had a chance to finally sync up on his medical progress. He still hasn't needed any lung taps, but there is increasing concern that the chylous fluid has just rerouted- possibly to his stomach. He has several scans and appts coming up soon that will give us some more clarity if this is occurring. He is still super weak and has some opacities (in his lungs I believe) that have shown up in recent CT scans that they are keeping an eye on. I am so grateful that he connected with a solid PCP who has been critical in helping him get the tests and follow through he needs. We logged into his SS account to check on his application and we are now 75% through the decision process. We applied in June 2023. We both despise asking for help in this way, but if it is within your means and you feel inspired, we would be most grateful if you could kick a few bucks his way. Based on the info from our SS log in today, his decision for approval or not will come no later than end of June. I have no clue how long the first payment would occur IF they approve him. Such a vague and confusing system. Anyway, I digress. Love your loves while you can. Thanks for tuning in. <3
UPDATE 1/5/2024
Happy New Year everyone!
I have a few updates to share with you all. First off, despite University of Penn being aware of the Medicaid situation, they opted to not accept Louisiana medicaid mid-review of his images. They were at least kind enough to send the images back, but would not respond to my request of any other hospitals they may know of that specialize in that type of surgery.
In tandem with that frustrating development, we have some good news too. Chris has been turned away for his weekly lung taps FIVE weeks in a row due to not enough fluid. I spoke with Dr Ferral and he said there was minimal fluid in his left lung, none in the right. There was also no fluid seen near his heart or his stomach. It is possible that the second lymphangiogram where Ferral opened his duct may have worked after all. We both agree that seems like wishful thinking, but it does seem like his body has begun to find a different route for the lymphatic fluids. Only another Lymphangiogram would give us the answer, or at least show us the path of his fluids. That is fairly invasive and not on the table currently. I have asked Dr Ferral if he would consider this.
Chris has been seeing a new PCP who has been very helpful. We are waiting for referral calls to get him a nutritionist and a physical therapist. His body is still very weak and his energy low. He feels like he is having bouts of confusion time to time, but that is hopefully just related to nutrition, mental health and physical strength.
He has managed to acquire a laptop through the help of friends, so the goal is to try and get him some easy remote work. Any suggestions, ideas are welcomed! Our last log in to SS Disability shows 52% completed until decision is made. Seems like we won't have an answer until July if we are lucky. Ridiculous how long that takes.
Thanks to all for the continued support. I am hoping that the recent developments means he may have turned a corner. Time will tell.
UPDATE 11/13/23
Hello team Blu!
Sorry for the delay in my updates but we got stuck in a bit of a holding pattern. In my last update, I spoke of a team of doctors at UMC in New Orleans who said they could do the Lymphovenous Bypass of the Thoracic Duct. (This will reroute the fluid back into his veins vs his lungs in theory) Since then, that team has declined to do the surgery. They have never done it before, and it appears the head of the microsurgery department caboshed the idea. This is for the best because they are not experienced with it. It does create a whole new set of challenges because Chris is on Medicaid which is restricted to care only in Louisiana.
After some digging I was able to determine that you can get out of state medical procedures approved, but it is a long an arduous process. I found a team of doctors at University of Pennsylvania hospital in Philadelphia. They have a lymphatic department that is responsible for creating the procedure he needs. They have been treating lymphatic issues for 22 years, although this procedure is still relatively new.
I am in contact with that team. They have his records and are just waiting on the images to arrive. Chris mailed them last week and they should be there tomorrow. Once they review them, they can determine if they can do the bypass or not. Assuming they say yes, we go into a loop of red tape where ultimately the medical director of Healthy Blue Louisiana gets the final say. If/when we make it that far, I am prepared to go to battle if the request gets denied by his insurance for any reason.
So that is where we are at. I am hoping to have a green light from U Penn in 10 business days from them receiving the images. I will be updating this immediately when we find out. Chris has continued to receive lung taps every 7-14 days. As you can imagine, he is exhausted and stressed. This has been such a long challenging road. We are well over a year at this point.
We are so grateful for all the continued support from you all! He would be in a much worse situation if it wasn't for all your love. Thank you from the bottom of our hearts!
UPDATE 8/18/23
Hello friends and family. I know it's been awhile since my last update, but we were playing a waiting game to see if the most recent unblocking of the Thoracic Duct via the Interventional Radiology team took. I am saddened to report that it did not. Since that procedure there have been multiple lung taps and I have scheduled him for an additional tap today.
The next step is to do a physical bypass/stent of the thoracic duct. Finding doctors to do this procedure has been a real challenge. It is not something many doctors have performed nationwide. (There has been a lot of his care team reaching out to other hospitals in the US) We have assembled a strong team though. We have a top notch cardiothoracic surgeon, a reconstructive surgeon that specializes in microsurgeries alongside the Interventional Radiology folks. From what I understand, they will NOT have to crack open his chest for this procedure as the blockage is accessible via his neck. That is a huge relief. This will still be a much bigger procedure than what he has done so far.
His first appt with the Reconstructive team is next Thursday 8/24. They will then set him up with an MRI and a couple scans as they get a complete picture of the situation before scheduling the surgery. My plan is to go back down to New Orleans to assist with recovery.
To this day, all doctors across all teams are still completely baffled on how this blockage occurred. While that is frustrating, it may be a good sign that if this can get repaired, he may be able to start the climb back to normalcy.
We are closing in on a full year of this sweet man being completely incapacitated. I am floored daily by how well he is managing this uncomfortable life filled with uncertainty. My heart knows that all of the love you beautiful humans keep pouring in is definitely helping.
If you have the means to donate or share, literally anything helps.
Update 6/29/23
I am just returning from 12 days in New Orleans. My original flight was to help out around the thoracic duct embolism procedure, but I ended up going earlier as he was struggling. I arrived on the heels of his Hemorrhoidectomy. That was a very difficult procedure to recover from. We did get things mostly under control pain-wise, etc within 4 days.
On 6/19 he was finally able to get the lymphangiogram we have been vying for 8 months to schedule. This test pumps contrast dye into his lymphatic system to check for leaks and try to determine how/why the chylous fluid is entering his lungs. No leaks were detected but they did discover his lymph ducts were blocked. The blockage started right around where the thoracic duct is (near the heart). This means the chylous fluid the lymphatic system creates was never able to make it into his veins as it should. This is an amazing discovery as it could very well be the culprit of all of this. (Sans anemia issues which I think have been addressed with his Hemorrhoidectomy) They tried to enter his system via the neck to attempt to unblock the duct. That was unsuccessful and they needed to stop the procedure due to time on the table.
They rescheduled a second Lymphangiogram for Friday 6/23. He was released on 6/19 and things were decent. Then some pretty serious shortness of breath started and we were instructed to go to the ER on Wednesday. We sat in the ER waiting room for 11.5 hours. It’s a level 1 trauma hospital so all the New Orleans metro extreme cases arrive there. I won’t get into how awful that was.
We got to an ER room by 1:30am.They discovered blood clots in his left arm. Byproducts of all the IV’s he has had over the course of 60 days. They put him on blood thinners and by Thursday he was placed into an observation room.
Dr Ferral was very attentive and adamant that Chris would be up for the second Lymphangiogram on Friday. (The day I was departing) He promised that they would keep him post procedure to watch over his progress.
I got a call en route to the airport that the second unblocking attempt was successful. (They entered the abdomen this time vs the neck). Very exciting news indeed.
My excitement was quickly quelled when ICU called and said they were admitting him due to low blood pressure. Apparently he got as low as 60 on the table.
He remained in ICU through Tuesday. He received a lung tap pulling 1.8L from his left lung. His chest X-rays kept coming back with slightly increased fluids, and his hemoglobin kept dropping.The last 48 hours though have shown a marked improvement. Hemoglobin going up (SLOWLY) and last chest X-ray on 6/28 showed a slight DECREASE in fluids.
So now we wait. Dr Ferral thinks it will take a good 3 weeks to find out whether the blockage remains cleared and if the procedure actually worked. I am cautiously optimistic.
It is likely Chris will be released from the hospital today or tomorrow depending on labs/tests. Since returning home I have filled out the application for renewing his medicaid and applying for Social Security disability. Fingers crossed that those get approved without hiccups. Assuming that this procedure repairs our dear friend, he will still have a long road to getting his strength back so he can return to work. Any support is greatly appreciated! And thanks for caring enough to follow along on this wild and terrifying journey.
Update as of 6/8/23
The 5/10 hospital stay lasted 10 days. They kept him long enough for the hemorrhoid surgery but released him shortly after. He made it about 9 days before he needed to go back to the ER for bleeding and exhaustion. He required two blood transfusions and they attempted a second fix on the hemorrhoid. (Tying it off this time, vs closing the nearest artery on the first surgery). He was in for 3 days and then released. He made it another 3 days and was readmitted on Tuesday 6/6. They took him in for an immediate Hemorrhoidectomy - which is the most extreme treatment, but the conservative approaches were not working. This one comes with a more difficult recovery. I believe he has also had his lung taps, but I am having trouble reaching people this go around to confirm.
This is all independent of the issues with his lungs filling up and the heart issues. Hopefully getting this taken care of will stabilize him enough to get the other treatments he needs. His Thoracic Duct procedure was rescheduled for 6/19. I am uncertain if he will be recovered enough to do that surgery or not. I am flying back down next Wednesday 6/14 through 6/23 to help out. I will keep everyone posted as things develop. We appreciate your care and concern!
Update as of 5/16/23
I wish I had better news to report. The 3/30 EBUS biopsy was inconclusive as the area was too small to get a large enough sample. The scarring from the histoplasmosis is still a possibility, but unconfirmed. They decided to go ahead and book the thoracic duct embolism for 5/10. The day he arrived for surgery he was in such bad shape they admitted him back into the hospital. This time he is at UMC and has switched his care to them now. I am a firm believer that UMC is a superior hospital. They are a Trauma level 1 institution. He has since had 2 blood transfusions, and endoscopy, colonoscopy, transthoracic echocardiogram and another CT Scan with contrast.
They found a large, actively bleeding hemorrhoid that requires surgery. That most likely will be an outpatient fix after they stabilize him. The endoscopy revealed a hiatal hernia, but that is not believed to be causing the gamut of issues. They also found a nodule on his thyroid which apparently the previous hospital knew about but never brought up to either of us. I am still waiting for the doctor to call me today for more information on a plan.
Over the weekend his lungs filled up to 3L plus. Doctors have chosen to use diuretics to manage the fluids vs a lung tap. It took a few days but that does seem to be improving. His heart test still shows a lot of issues, but they still are in the "heart is not causing this" camp. Everyday is a tedious adventure of tests, questions and endurance. I am constantly impressed by his bravery in the face of it all.
His current admission into the hospital falls exactly 7 months after his first long visit. So here we are, hoping that if people can toss in a few bucks here and there we can continue to take financial collapse off his overflowing plate. I feel like he is in much better hands now and they are very proactive in calling me. I will update more as details and game plans develop.
Much love to you all!
Update as of 3/22/23
We have some promising news as of my last visit.
I went to visit Chris from 3/7-3/16. I did a lot of cooking and have restocked his freezer with home cooked meals. This time it was Chicken Alfredo, Carnitas and BBQ pulled chicken. I got the house in good order and helped him streamline some more things to simplify life. I took thank you cards and chocolate bars to all of his doctors. It was nice to get some face time. We also successfully got his phone replaced under warranty so that is huge! We managed to get him out of the house a bit and even went for a walk. It was fortunate timing as he was in the window of his "best health" which falls between his lung taps. He will likely need another lung tap soon. If he has not responded to messages etc, please don't take this personally. Life is understandably quite overwhelming right now.
Prior to my trip, the doctors had confirmed they were ready to do the thoracic duct surgery. Then, upon reviewing his recent CT scans, they changed their minds and decided to do the EBUS (Endobronchial Ultrasound & Biopsy) I mentioned in my last update. He is scheduled for that on 3/30. Dr Deboisblanc called me to explain WHY they are doing this.
His CT scan showed something they call Ground Glass- which is a fibrous opacity- at the bottom of his heart near his thoracic duct. He believes that Chris was exposed to a common fungus that is found in bird and rat feces. Often it is stirred up during construction etc. Most people have been exposed to this, our bodies fight it and we are none the wiser. This infection is called Histoplasmosis and it is common in the Ohio and Mississippi River Valleys. Occasionally the immune reaction to the fungus can cause an immune storm. When that occurs, a patient can get scarring- which is what they believe the Ground Glass seen by his heart to be. They said it is clearly NOT a tumor. This is what they are going to biopsy with the EBUS. If those biopsies can confirm this, it will be 100% the cause of ALL of his issues. The next step would be to determine the best way to treat or remove the scarring.
Nothing will be confirmed until after his 3/30 appt. I am very excited and hopeful that we may have finally uncovered the cause. Our fundraising efforts have helped him with another 2 months of bills. I believe in my heart that we can fix him and he can get back on his feet. We are all so grateful for your support and concern.
Update as of 3/3/23
Hello everyone! Tracy here with another update on Christopher's medical progress.
First I would like to make mention that his phone is partially broken from it getting dropped. Incoming calls work if he catches them, texts notifications- same thing. So if you have reached out and not heard back this is part of the reason why. He does not have a laptop. The rest is just that he is quite weak and exhausted all the time. I am flying out next Tuesday (3/7/23) for another 10 day visit to help with the phone, life logistics and to restock his freezer with more home cooked food. He is unable to drive or work in any capacity. If you have the means and desire to toss a few bucks his way it is BEYOND appreciated. He has about 45 days of funds left currently. Neither of us like asking for help, but sometimes it's the only option that is left. Please know that we are eternally grateful to you all.
Now onto the medical update:
He still remains a mystery to the doctors.
We have been referred to an Interventional Radiologist at UMC (Dr. Ferral) in hopes of them performing a Thoracic Duct embolism. This is a potential symptom stopper for the chylous fluid entering his lungs. Since my last update he has had both of his lungs drained 3 times, most recently was an urgent need last week. In order for the above mentioned procedure to occur, many more tests have been performed.
He had a liver biopsy a few weeks ago that showed congestion but no alcohol damage/cirrhosis.
Up next is something called an EBUS. That stands for Endobronchial Ultrasound and you can read more about it here. This is new technology and is minimally invasive. It will allow doctors to take biopsy samples via ultrasound, analyze them immediately and be able to request additional biopsies as needed within the same procedure. Pretty amazing stuff! They will also be able to see images of inside his lungs in great detail. We hope this is the last test before the Thoracic Duct Embolism.
There is still concern that this could be his heart after all. We have a team of 4 doctors between two hospitals that we are continuing to work with. He would have been shipped off to Mayo ages ago, but since he is on medicaid he is required to stay in state. Frustrating indeed. He has been through so much already. We speak almost daily and he is struggling with memory and cognition issues but is still able to get the basics handled.
If you made it this far, thanks for taking the time to read our update. Anything helps! $5? A social media share? Much love and health to you all!
-Tracy Starr
Tracy@Starrfire.net
Update as of 11/21/22
Hi sweet humans! Thank you all so much for your support! It helps beyond what the $ can do. The love is quite healing as well.
I wanted to post an update here so people can follow along with his progress. I will try to update every couple of weeks or so.
He is currently still home since his release on 10/24. Since his release he has had three individual Lung Tap (Thoracentisis) as out patient procedures. One of which caused a partial lung collapse which has since corrected itself. They intend on placing two lung catheters when he needs his next drain so he can manage this process at home. This would be via surgery.
The doctors are still unsure what the cause is of the inflammation around his heart. He has a top notch pulmonologist- Dr. Deboisblanc and a great cardiologist, Dr Wilklow. They are staying the course with these new meds in hopes they can resolve the issue. (Colchicine, an anti-inflammatory and Torsemide, a diuretic)
Rough part about this, is that the meds take 3-6 months to take full effect. The surgery possibility is still on the table, but they are trying to avoid it at all costs due to invasiveness. Given this extended window of heal time, I have upped the goal of this fundraiser to $10,000.
He misses working the tours, his coworkers and of course his sweet mule. We are all rooting for a full recovery and get him back on track with his life. Thank you all for your care, concern and support. ETERNALLY GRATEFUL!
If you want to reach out, that is ok now. Sending emails and text is best. You can DM me for his number. His email is trptblu@gmail.com Tell him a funny story or catch him up on whats been going on in your life. I think the distraction would be good for him. <3
Much love,
Team Blu
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Hello all! Chris finally gave me permission to create this fundraiser. It is imperative that no one reaches out directly so he can rest.
Currently he has been in the hospital for 2 weeks with an unknown release date. They have drained fluid from both his lungs twice as well as two heart catheters to try and assess what is going on. These are just the most invasive procedures so far- there are way too many to list here. I am currently in New Orleans working with his medical team as well as a doctor that is going to provide some second opinions. It is likely that his heart is constricted, but they can not definitively prove that. Heart surgery is still on the table of possible solutions.
If you can spare a few dollars it would help him greatly to get back on his feet. He has already been unable to work for a month. Please feel free to leave comments of love and support here and he will see them.
Thanks for taking the time to read, comment, donate or share. I would love to remove the added stress of finances off of his overflowing plate. Love you all.
