My amazing husband was trying to tell everyone something was wrong. We were turned away at the ER and specialists couldn't figure it out. At first, he thought it was a complication of his Type 1 diabetes. After seeing his Endocrinologist, that was ruled out. Last Wednesday, we went to his Rheumatologist for lab results. We were expecting a Lupus or Rheumatoid Arthritis diagnosis. We we're nervous about the future. We have a sweet 6 month old baby girl to care for and he isn't even able to lift and hold her.
Things went south pretty quick once we got to the doctors office. She gave us the results, ruled out Lupus, RA and TB. She told us that this was over her head and that she was really sorry; she wished she could be more help. Then came out the big guns.
"You need to go to a university hospital, right now. Do not take no for an answer and get admitted." What came next left us breathless. She wrote Nathan a note that he is unable to return to work until "further notice" and told him that he needs to have lab work done to evaluate for blood cancer.
We were complety stunned. I think we are still in shock.
But we arranged for sweet Oceayn's grandmother (my awesome mom) to watch her for the night and took off for our second attempt for help at Tampa General. We had his referral and a solid stack of labwork in tow.
The ER doctors seemed worried. Turns out when you mention the possibility of blood cancer, suddenly they think there is something wrong. They took one look at the swelling in all of his extremities, black foot and mile long list of complaints and started to get the ball moving.
He is now admitted at TG, under the care of an awesome team of doctors including Internal Medicine, Rheumatologists, Pulmonary teams and soon to be Oncologists.
Yesterday, he underwent several tests the scariest being the lymph node biopsy. They went in through his throat and stuck a needle through his lungs, and took tissue and lymph node samples. The procedure lasted an hour longer than it should have. Now his lungs hurt, he is having another chest Xray done to evaluate for infection or collapsed lung. That will remain a risk for a while.
As of today, we are at a crossroads of two diagnoses. They say it could go either way, or both. 50% chance of Sarcoidosis. Depending on the stage and severity it could be treated. But there isn't a whole lot known about the disease. It varys in every person, no constants. What is known is that it attacks organs. Any organ.
The second option is Lymphoma.
Nathan has been told he cannot go back to work, he will lose his insurance. He is Type 1 Diabetic and requires $2500 a month in insulin.
Our sweet Oceayn needs to eat and have diapers.
My super-step-daughter, Coralyne needs care too.
We have talked about treatment options but Nathan is waiting to make any kind of conscious decision without a formal diagnosis.
I ask humbly for your help. To help cover Nathan's medical expenses, take care of our family and maybe; JUST MAYBE, help make Nathan's desire to live a long life with his girls come true!
Things went south pretty quick once we got to the doctors office. She gave us the results, ruled out Lupus, RA and TB. She told us that this was over her head and that she was really sorry; she wished she could be more help. Then came out the big guns.
"You need to go to a university hospital, right now. Do not take no for an answer and get admitted." What came next left us breathless. She wrote Nathan a note that he is unable to return to work until "further notice" and told him that he needs to have lab work done to evaluate for blood cancer.
We were complety stunned. I think we are still in shock.
But we arranged for sweet Oceayn's grandmother (my awesome mom) to watch her for the night and took off for our second attempt for help at Tampa General. We had his referral and a solid stack of labwork in tow.
The ER doctors seemed worried. Turns out when you mention the possibility of blood cancer, suddenly they think there is something wrong. They took one look at the swelling in all of his extremities, black foot and mile long list of complaints and started to get the ball moving.
He is now admitted at TG, under the care of an awesome team of doctors including Internal Medicine, Rheumatologists, Pulmonary teams and soon to be Oncologists.
Yesterday, he underwent several tests the scariest being the lymph node biopsy. They went in through his throat and stuck a needle through his lungs, and took tissue and lymph node samples. The procedure lasted an hour longer than it should have. Now his lungs hurt, he is having another chest Xray done to evaluate for infection or collapsed lung. That will remain a risk for a while.
As of today, we are at a crossroads of two diagnoses. They say it could go either way, or both. 50% chance of Sarcoidosis. Depending on the stage and severity it could be treated. But there isn't a whole lot known about the disease. It varys in every person, no constants. What is known is that it attacks organs. Any organ.
The second option is Lymphoma.
Nathan has been told he cannot go back to work, he will lose his insurance. He is Type 1 Diabetic and requires $2500 a month in insulin.
Our sweet Oceayn needs to eat and have diapers.
My super-step-daughter, Coralyne needs care too.
We have talked about treatment options but Nathan is waiting to make any kind of conscious decision without a formal diagnosis.
I ask humbly for your help. To help cover Nathan's medical expenses, take care of our family and maybe; JUST MAYBE, help make Nathan's desire to live a long life with his girls come true!