Erika's Medical Expenses
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I am just a friend who wants to help. Erika Clark is my co-workers wife. Erika has been struggling with Endometriosis for years and finally found a doctor to help her. Erika is lives in Olathe, KS and found a doctor in Atlanta Georgia to help her by performing surgery.
Here is Erika's Story from her own words.
On December 14, 2018 Erika had surgery to remove the Endometriosis.
Lots of people have been asking for updates. Now that I have had some sleep I wanted to let everyone know I am doing good. I'm having some pain, but so far pretty minimal. I've been up walking. Not too far, still shaky and unstable. I ended up with a total hysterectomy, both tubes and ovaries removed, appendectomy, resection of the bowel (4 inches removed), and excision of endometriosis from the bladder, ureters, and everywhere else. He also removed a few endometriomas with one being about 8 cm.
Erika was in the hospital for about a week and sent home to Kansas on December 17th. On about December 21st, 2018 Erika was taken back for more tests in Kansas.
Being admitted and I will need another a surgery. Due to the complexity of my case they are trying to send me to St. Lukes plaza location. That will be my fourth hospital today. Thank goodness for the persistence of Dr. Sinervo and his team.
Thank you all for the continues thoughts and prayers. St. Luke's has been great. It appears there was a malfunction where they reconnected my bowel which is of course an extremely rare complication. Essentially my body didn't get the right message and rerouted my bowels. They are working to get me functioning right again without surgery. I can only eat ice chips, on antibiotics and IV nutrition, and they are trying to help my bowel heal. It's been an intense couple of days, but I finally feel things are starting to get taken care of.
December 27th, 2018
Been another long stressful day. The specialist was ready to do surgery tomorrow with minimal thought towards other treatments and I just wasn't sure about his expectations. E.j. Clark was able to coordinate getting the operative nurse, two Atlanta surgeons, and the specialist to discuss treatment. I'm prepping for surgery possibly tomorrow afternoon, but it will be dependent upon a test Dr. Sinervo would like to see done first. If all goes well I should be able to start a clear liquid diet with IV nutrition, otherwise surgery is tomorrow late afternoon.
December 28th, 2018
Good news no surgery. Bad news clear liquid diet with IV nutrition through the PICC line for 4 weeks. Fingers crossed this is the last setback and that everything will heal appropriately so I can one day eat food again.
Erika was released from the hospital with clear liquid only restrictions.
On January 8th, 2019.
Had my first post op appointment today. The surgery was obviously extensive, but all is healing well. She is not comfortable taking away any restrictions yet because of my post op issues so I go back in 2 weeks unless I have another surgery. My doctor called the specialist in KC because my PICC line was accidentally pulled out by nurse last night during a dressing change. She didn't want me going to the ER and catching anything. The home nurse came out and found out the PICC line was kinked under the dressing. Now we have to watch it and make sure it doesn't do it again otherwise I may need a new PICC line. These past 3 weeks have been crazy, but I'm hopeful the next 2 weeks will continue in a positive direction and that this PICC line will be removed. 20 days no food and only 12 more to go
On January 18th, 2019
This past week I received the surgical notes, pathology reports, photographs, and all other follow up information from my surgery in Atlanta. I had adenomyosis, stage IV endometriosis, masses the size of a small cantaloupe, retroperitoneal fibrosis, obliterated culdesac, abnormal appendix, and invasive sigmoid endometriosis. My rating was 134 out 140 (only need a score of 40 to be stage IV) not a time when a high score is good. The picture where the surgeon draws the location of disease looks like a 2 year old scribbled because there was just so much disease everywhere.
Now looking back in review I can't believe I lived so long without it just like he said I would. I have no more endometriosis pain or back pain. I realize now I had become accustomed to chronic aching, ripping/tearing of my insides, and shooting pains through my body that I completely forgot what it's like to be pain free.
I'm still recovering and continue to heal from my post-op complication. Now I realize that while it was rare for this to happen I was the perfect storm for it to happen. My surgeon was phenomenal and did everything he could to prevent it without leaving disease behind for me to suffer. He continues to be there for me and willing to answer my questions or provide insight on what's next.
Now all I can do is fight for earlier detection so other women don't have to live decades in pain and agony. And share accurate information so the misconceptions surrounding treatment of this disease do not continue the way they currently do. Birth control does not treat it, ablation does not cure it, hormone suppressants do not kill or lessen the disease, menopause or hysterectomy will not stop the spread of it. Nothing works to rid endometriosis other than proper excision with a skilled doctor who can recognize that endometriosis can be black, white, pink, yellow, clear, etc. and it can invade other organs such as the bowel, appendix, lungs, and even the brain. Symptoms vary from person to person making it even harder to diagnose. It's time we demand better women's care!
January 25th, 2019
Spoke with one of the surgeons in Atlanta because my symptoms from the fistula came back this past Sunday. He explained to me the plan for moving forward and what the next steps are. I go for a test on 2/4 to see where I'm at then we can start planning for surgery.
At this time both E.j. Clark and I feel more comfortable going back to Atlanta than the current specialist we met with on Monday. I see him again in 2 weeks so if he can explain to me better how he will do the repair and if there will be an experienced surgical gynecologist involved I will reconsider. I will most likely need a temporary ileostomy for around 2 months. That's a bummer, but Atlanta will do the repair and ileostomy in the same surgery rather than separate ones like they want to do here. There is a small possibly to avoid an ileostomy, but that would mean continued TPN so not sure either option sounds great lol.
February 7th, 2019
Had my test Monday and I couldn't tolerate it at all. Excruciating pain, bawling, shaking, just overall terrible feeling like my insides were going to burst. The radiologist believes I may have an obstruction in my colon from scar tissue now. I called the specialist Tuesday who wants me to do a different test. I called radiology to schedule and they have me down for the same method once again. It took me 2 days to get the method changed and to make sure they use the proper medium because if they don't it can cause significant issue in my body right now. Fingers crossed everything goes smooth tomorrow and we can get some answers for possible surgery. Hoping for no obstruction because otherwise I'm looking at another bowel resection on top my current issue.
February 11th, 2019
Went to the specialist to discuss out next steps and surgery only to find out he is not credentialed with my insurance yet so he can't do any surgery with me. So he refers me to a specialist with Menorah who can't get me in until 3/22. I just wasted 6 weeks with this specialist and have to wait another 6 weeks to see the new one. I'm just sick over this whole situation. E.j. Clark has been texting one of the nurses in Atlanta and she is working to get me back there so we can resolve this once and for all.
I recieved a text from my surgeon in Atlanta. He will be reviewing my test results with the colorectal surgeon there to develop a treatment plan. Then they will be getting me in for surgery within the next few weeks. He will call me in the next day or two to get get things squared away.
I'm scheduled for surgery on 2/25 in Atlanta! I dont have all the details yet, but will once the surgeon calls me this evening. Beyond grateful for the entire team in Atlanta. They have really gone above and beyond. I'm also grateful for the folks here willing to help care for my kids and pets while we are away. Looking forward to getting fixed up and back to normal!
February 25th, 2019
I got to my room last night about 9PM. The surgery lasted about 4 hours. They removed the fistula then repaired the vaginectomy and colon. There was a stricture on the colon so about 2 more inches were removed. I have an ileostomy for a about 8 weeks to let everything heal properly. One of the surgeons said it was the best case scenario with all the problematic tissues in the same spot and that I'm actually healing very well. Looks like I will be in the hospital until Friday or Saturday. I've just been very tired so far, but was able to brush my teeth, get cleaned up, and walk a lap. Once I do one more lap the Foley can come out. Woo!
I have progressed to a full liquid diet, but have been quite nauseated today. All 3 surgeons came in to talk to me and the colorectal surgeon told me how to successfully reintegrate food.
I've learned how to empty my ileostomy, but still need to learn how to change the bag. Once again E.j. Clark has been a little sponge in learning how to care for me. I've been up and walking. Not as much as yesterday, but I'm pretty sore even with pain meds.
I will be coming back in approximately 8 weeks for my last surgery to reverse the ileostomy. Dr. Macik went over the entire process including testing, surgery, discharge, and returning home. Obviously the timeline can change. He said to plan on a 3 day stay in the hospital at that time. The staff and surgeons have been incredible here. I could not have asked for a better team!
This is Erika's story so far, but she still has a long way to go. During this ordeal Erik's mother passed away and their daughter had pins removed from a finger.
Let's see if we can help Erika/Erik out paying for some medical bills or just expenses of plane tickets, hotel rooms and other expenses.
Here is Erika's Story from her own words.
On December 14, 2018 Erika had surgery to remove the Endometriosis.
Lots of people have been asking for updates. Now that I have had some sleep I wanted to let everyone know I am doing good. I'm having some pain, but so far pretty minimal. I've been up walking. Not too far, still shaky and unstable. I ended up with a total hysterectomy, both tubes and ovaries removed, appendectomy, resection of the bowel (4 inches removed), and excision of endometriosis from the bladder, ureters, and everywhere else. He also removed a few endometriomas with one being about 8 cm.
Erika was in the hospital for about a week and sent home to Kansas on December 17th. On about December 21st, 2018 Erika was taken back for more tests in Kansas.
Being admitted and I will need another a surgery. Due to the complexity of my case they are trying to send me to St. Lukes plaza location. That will be my fourth hospital today. Thank goodness for the persistence of Dr. Sinervo and his team.
Thank you all for the continues thoughts and prayers. St. Luke's has been great. It appears there was a malfunction where they reconnected my bowel which is of course an extremely rare complication. Essentially my body didn't get the right message and rerouted my bowels. They are working to get me functioning right again without surgery. I can only eat ice chips, on antibiotics and IV nutrition, and they are trying to help my bowel heal. It's been an intense couple of days, but I finally feel things are starting to get taken care of.
December 27th, 2018
Been another long stressful day. The specialist was ready to do surgery tomorrow with minimal thought towards other treatments and I just wasn't sure about his expectations. E.j. Clark was able to coordinate getting the operative nurse, two Atlanta surgeons, and the specialist to discuss treatment. I'm prepping for surgery possibly tomorrow afternoon, but it will be dependent upon a test Dr. Sinervo would like to see done first. If all goes well I should be able to start a clear liquid diet with IV nutrition, otherwise surgery is tomorrow late afternoon.
December 28th, 2018
Good news no surgery. Bad news clear liquid diet with IV nutrition through the PICC line for 4 weeks. Fingers crossed this is the last setback and that everything will heal appropriately so I can one day eat food again.
Erika was released from the hospital with clear liquid only restrictions.
On January 8th, 2019.
Had my first post op appointment today. The surgery was obviously extensive, but all is healing well. She is not comfortable taking away any restrictions yet because of my post op issues so I go back in 2 weeks unless I have another surgery. My doctor called the specialist in KC because my PICC line was accidentally pulled out by nurse last night during a dressing change. She didn't want me going to the ER and catching anything. The home nurse came out and found out the PICC line was kinked under the dressing. Now we have to watch it and make sure it doesn't do it again otherwise I may need a new PICC line. These past 3 weeks have been crazy, but I'm hopeful the next 2 weeks will continue in a positive direction and that this PICC line will be removed. 20 days no food and only 12 more to go
On January 18th, 2019
This past week I received the surgical notes, pathology reports, photographs, and all other follow up information from my surgery in Atlanta. I had adenomyosis, stage IV endometriosis, masses the size of a small cantaloupe, retroperitoneal fibrosis, obliterated culdesac, abnormal appendix, and invasive sigmoid endometriosis. My rating was 134 out 140 (only need a score of 40 to be stage IV) not a time when a high score is good. The picture where the surgeon draws the location of disease looks like a 2 year old scribbled because there was just so much disease everywhere.
Now looking back in review I can't believe I lived so long without it just like he said I would. I have no more endometriosis pain or back pain. I realize now I had become accustomed to chronic aching, ripping/tearing of my insides, and shooting pains through my body that I completely forgot what it's like to be pain free.
I'm still recovering and continue to heal from my post-op complication. Now I realize that while it was rare for this to happen I was the perfect storm for it to happen. My surgeon was phenomenal and did everything he could to prevent it without leaving disease behind for me to suffer. He continues to be there for me and willing to answer my questions or provide insight on what's next.
Now all I can do is fight for earlier detection so other women don't have to live decades in pain and agony. And share accurate information so the misconceptions surrounding treatment of this disease do not continue the way they currently do. Birth control does not treat it, ablation does not cure it, hormone suppressants do not kill or lessen the disease, menopause or hysterectomy will not stop the spread of it. Nothing works to rid endometriosis other than proper excision with a skilled doctor who can recognize that endometriosis can be black, white, pink, yellow, clear, etc. and it can invade other organs such as the bowel, appendix, lungs, and even the brain. Symptoms vary from person to person making it even harder to diagnose. It's time we demand better women's care!
January 25th, 2019
Spoke with one of the surgeons in Atlanta because my symptoms from the fistula came back this past Sunday. He explained to me the plan for moving forward and what the next steps are. I go for a test on 2/4 to see where I'm at then we can start planning for surgery.
At this time both E.j. Clark and I feel more comfortable going back to Atlanta than the current specialist we met with on Monday. I see him again in 2 weeks so if he can explain to me better how he will do the repair and if there will be an experienced surgical gynecologist involved I will reconsider. I will most likely need a temporary ileostomy for around 2 months. That's a bummer, but Atlanta will do the repair and ileostomy in the same surgery rather than separate ones like they want to do here. There is a small possibly to avoid an ileostomy, but that would mean continued TPN so not sure either option sounds great lol.
February 7th, 2019
Had my test Monday and I couldn't tolerate it at all. Excruciating pain, bawling, shaking, just overall terrible feeling like my insides were going to burst. The radiologist believes I may have an obstruction in my colon from scar tissue now. I called the specialist Tuesday who wants me to do a different test. I called radiology to schedule and they have me down for the same method once again. It took me 2 days to get the method changed and to make sure they use the proper medium because if they don't it can cause significant issue in my body right now. Fingers crossed everything goes smooth tomorrow and we can get some answers for possible surgery. Hoping for no obstruction because otherwise I'm looking at another bowel resection on top my current issue.
February 11th, 2019
Went to the specialist to discuss out next steps and surgery only to find out he is not credentialed with my insurance yet so he can't do any surgery with me. So he refers me to a specialist with Menorah who can't get me in until 3/22. I just wasted 6 weeks with this specialist and have to wait another 6 weeks to see the new one. I'm just sick over this whole situation. E.j. Clark has been texting one of the nurses in Atlanta and she is working to get me back there so we can resolve this once and for all.
I recieved a text from my surgeon in Atlanta. He will be reviewing my test results with the colorectal surgeon there to develop a treatment plan. Then they will be getting me in for surgery within the next few weeks. He will call me in the next day or two to get get things squared away.
I'm scheduled for surgery on 2/25 in Atlanta! I dont have all the details yet, but will once the surgeon calls me this evening. Beyond grateful for the entire team in Atlanta. They have really gone above and beyond. I'm also grateful for the folks here willing to help care for my kids and pets while we are away. Looking forward to getting fixed up and back to normal!
February 25th, 2019
I got to my room last night about 9PM. The surgery lasted about 4 hours. They removed the fistula then repaired the vaginectomy and colon. There was a stricture on the colon so about 2 more inches were removed. I have an ileostomy for a about 8 weeks to let everything heal properly. One of the surgeons said it was the best case scenario with all the problematic tissues in the same spot and that I'm actually healing very well. Looks like I will be in the hospital until Friday or Saturday. I've just been very tired so far, but was able to brush my teeth, get cleaned up, and walk a lap. Once I do one more lap the Foley can come out. Woo!
I have progressed to a full liquid diet, but have been quite nauseated today. All 3 surgeons came in to talk to me and the colorectal surgeon told me how to successfully reintegrate food.
I've learned how to empty my ileostomy, but still need to learn how to change the bag. Once again E.j. Clark has been a little sponge in learning how to care for me. I've been up and walking. Not as much as yesterday, but I'm pretty sore even with pain meds.
I will be coming back in approximately 8 weeks for my last surgery to reverse the ileostomy. Dr. Macik went over the entire process including testing, surgery, discharge, and returning home. Obviously the timeline can change. He said to plan on a 3 day stay in the hospital at that time. The staff and surgeons have been incredible here. I could not have asked for a better team!
This is Erika's story so far, but she still has a long way to go. During this ordeal Erik's mother passed away and their daughter had pins removed from a finger.
Let's see if we can help Erika/Erik out paying for some medical bills or just expenses of plane tickets, hotel rooms and other expenses.
Organizer and beneficiary
Jamie Giebler-Schmidt
Organizer
Olathe, KS
Erik Clark
Beneficiary
