Yes. They did.
They said, as far as I know, the vaccines came back with good responses. My IGg levels are still low; particularly subclasses 1 and 3.
The chances are good I will be approved for SubQ for the drug hyzentra - my Immunologist wrote the order and feels I really need it. I was approved by UHC for "in network" benefits. My advocate with Bio Rx infusion says the chances are good they will approve it soon, but want to see for sure.
I am wondering, do most ppl with CVID, like I am on STD right now, even when they have the IVIG tx, do they go on LTD and SSDI? and/or, is this the norm for the doctor to put them on LTD and SSDI?
The reason I ask is that I am concerned after the treatment about relapse, other issues I have like bronchitus/asthma (my lungs are sore when I breathe cold air and I get really sick) are not getting any better. Do these other issues, such as asthma clear up too, with the SubQ tx?
If I get completely healthy, I would like to go back to work, but if not, would not be a good idea.
I don't know what to do about asking my doctor about LTD. Should I apply just in case? my job wants me to return on Mar. 26th; after this date they are going to let me go. What should I do? I don't want to wait too long to apply for LTD, and, my job manager wants to know what I plan on doing come early March.
Please, any guidance is appreciate by anyone. I appreicate everyone's help so far.
Most people with CVID go on to live a normal life, have kids, work full time, etc. BUT that being said the treatments take 6 months to a year to work. Meaning - this is NOT a cure. This will significantly reduce the number and severity of your infections. Unless you are hospitalized multiple times per year AND need multiple rounds of antibiotics, its not likely you will get approved. ALSO, you haven't' even started treatment, which more than likely will work. I can't see anyone approving ssdi/ltd when you haven't' started the treatment that will give you a close to normal life. This is all my personal opinion and what i've read about the qualifications for ssdi. I got a deadly lung disease from cvid and I can't even get ssdi I work full time, single mom, own my own home, voluteenr...I live a normal life. Asthma will not go away with the Igg replacement (IF it really is asthma). Start the treatments asap. Its very unusual for you to go straight to subq, the standard is usually one ivig THEN to the subq. Hope I answered some of your questions.
The following 2 users give hugs of support to: cvidmama BelleoftheSouth (02-21-2012), GregBear4you (02-20-2012)
The Following User Says Thank You to cvidmama For This Useful Post: GregBear4you (02-20-2012)
If SSD thinks for a second that you can work with medicines to help you they won't approve. You can get approval from your doctor but their doctor will be assessing you which makes me steaming because their doctor very seldom agrees with your doctor.
~Belle~
The following user gives a hug of support to BelleoftheSouth: GregBear4you (02-21-2012)
The Following User Says Thank You to BelleoftheSouth For This Useful Post: GregBear4you (02-21-2012)
STD done in-house by the employer is usually way more generous in not requiring a lot of medical evidence, often only a doctors signature and diagnosis you have.
LTD done by an insurance company will be far more focused on medical evidence, residual functionality, etc. It's no longer just a doctor's signature, but the doctor backing up the diagnoses and limitations and symptoms with medical records. Just be prepared. If your LTD starts after 6 mo on STD and LTD feels you will be unable to return to work, they will likely encourage you to apply for SSDI. Often LTD insurance companies refer claimants to preferred SSDI attorney or advocacy firms.
My LTD did refer me to their preferred attorney group and they handled 90% of the SSDI from initial application all the way through to approval. In the beginning I had to help them in providing all my doctors, medical history, work history, etc.
Remember to claim ALL the diagnoses you may have. I have a 50% hearing loss bilaterally that hasn't really interfered in my job too much but the judge gave it a high impact in terms of solidifying her decision to approve my SSDI becuase it limits the job types I can do (can't work in quiet environments, call centers, or noisy environments, etc)
STD done in-house by the employer is usually way more generous in not requiring a lot of medical evidence, often only a doctors signature and diagnosis you have.
Yep, Spine is right. I always had in-house STD and I used it about a dozen times over my 20 year career span and my company never gave me a huge hassle....just a signature from a doc once / month along with the prognosis/diagnosis.
The Following User Says Thank You to BlueSkies14 For This Useful Post: GregBear4you (02-22-2012)
Great news! UHC approved my IVIG therapy and I will be getting my first infusion this coming Friday!
The drug is called "gammagard" and I will received treatment once a month. Just got my shipment today at home.
Has anyone had experience with getting IVIG/gammagard? what do I need to expect?
I read the list of possible side affects.
From what I understand, the 4th week afterwards you may start to feel sick again because it raises the IGG up and then drops?
Or will I feel better after my treatment; from what one other poster stated earlier, it will take weeks to start to feel normal however?
I am also concerned about my asthma. I breathed in cold air from outside one night, just briefly; the next morning I had severe chills/fever and muscle aches. Was sick all day. I am not sure if these issues will resolve or not, after I get the IVIG. Most likely no. Also, I had an asthma attach the other day and could hardly breathe and got dizzy and light headed. Almost had to call an ambulance.
I spoke to HR and they are going to extend my leave another 2 weeks so I can get a good feel for the drug and how I will react during, and later/afterwards.
I spoke to my doctor and he signed my LTD form and I submitted to HR, just in case I have the worse case senario. Best case senerio is I will be able to return to work before my FML is up. HR told me, if I go back to work and then get sick again, I could go out on STD again; however I would lose my job because of using up FML for the year.
Great news! UHC approved my IVIG therapy and I will be getting my first infusion this coming Friday!
The drug is called "gammagard" and I will received treatment once a month. Just got my shipment today at home.
Has anyone had experience with getting IVIG/gammagard? what do I need to expect?
I read the list of possible side affects.
From what I understand, the 4th week afterwards you may start to feel sick again because it raises the IGG up and then drops?
Or will I feel better after my treatment; from what one other poster stated earlier, it will take weeks to start to feel normal however?
I am also concerned about my asthma. I breathed in cold air from outside one night, just briefly; the next morning I had severe chills/fever and muscle aches. Was sick all day. I am not sure if these issues will resolve or not, after I get the IVIG. Most likely no. Also, I had an asthma attach the other day and could hardly breathe and got dizzy and light headed. Almost had to call an ambulance.
I spoke to HR and they are going to extend my leave another 2 weeks so I can get a good feel for the drug and how I will react during, and later/afterwards.
I spoke to my doctor and he signed my LTD form and I submitted to HR, just in case I have the worse case senario. Best case senerio is I will be able to return to work before my FML is up. HR told me, if I go back to work and then get sick again, I could go out on STD again; however I would lose my job because of using up FML for the year.
All brands of IgG replacement affect each individual differently. I have used 4 different IVIG products before switching to subcutaneous, which I have used 2 brands, one being Gammagard. I had HORRID side effects from IVIG. My best advice is to drink plenty of fluids before and have Gatorade on hand in case you get a headache. No pain medications in the world will get rid of that migraine once you get it. I would also ask ahead of time what speed they are planning on using...the slower the BETTER. The speed accounts for 90% of side effects from IVIG (I did a survey that about 60 people or so answered and these are the TOP suggestions for IVIG). Plan for it to take most of the day, bring a blanket, snacks, and something to keep you occupied. If you feel anything unusual during, ask to slow it down or STOP for 15 minutes. I personally, would be bed ridden the day of and all day after, so I had mine on my Friday off work. By 6pm Sunday, I would be well enough to cook dinner. Remember, IVIG does NOT work over night, it takes 6 months to a year to see a noticeable improvement in the severity and frequency of infections.
The Following User Says Thank You to cvidmama For This Useful Post: GregBear4you (03-07-2012)
Gregbear4you, Gee I'm truely sorry you have to go thru this how in the world can some work like that it takes a long time to get back to normal and then will that be it until When it starts over again. I would file for disability and see what happens. Good Luck in your treament.
The Following User Says Thank You to jgrangran For This Useful Post: GregBear4you (03-07-2012)
I will take your advise to heart about the treatment taking 6 months to a year before I feel normal, CVIDMama. Thanks. In the meantime I am preparing for the worst case senario.
I filed for LTD through my place of employment. It is a disability insurance company.
They called today and left a voice mail stating they wanted me to call them back and do a "phone interview" with them. Do I have to do this? anyone know?
I called PP Legal and asked to speak to a disability lawyer before even talking to them.
This is getting scary.
Concerned about my first infusion coming up this Friday morning; the nurse is coming out to administer here at the house. I will drink lots of water ahead and have Gatoraide on hand.
I will take your advise to heart about the treatment taking 6 months to a year before I feel normal, CVIDMama. Thanks. In the meantime I am preparing for the worst case senario.
I filed for LTD through my place of employment. It is a disability insurance company.
They called today and left a voice mail stating they wanted me to call them back and do a "phone interview" with them. Do I have to do this? does anyone know, who has been through this before, what I should do?
I called PP Legal and asked to speak to a disability lawyer before even talking to them. Should I just have a lawyer deal with this process?
My STD will be over 3/23; no more income. I am praying to be approved.
This is getting scary.
Concerned about my first infusion coming up this Friday morning; the nurse is coming out to administer here at the house. I will drink lots of water ahead and have Gatoraide on hand.
You must do a phone interview and complete any paperwork they send you for LTD (and have treating doctors complete whatever is necessary).
The LTD interview will ask for the names of ALL conditions that disable you in any way, the names of all treating physicians, the exact reasons you are unable to do your occupation, when you expect to return to work, have you asked for any accommodations to stay at work, etc). Be prepared to tell then specifically what affects your conditions have on your daily functioning at home, what limits you have that you didn't have before, etc.
I went out of work due to spine problems and my employer, a disability insurance company, outsourced STD to a Third Party Vendor and then did the LTD in-house. LTD is always more stressful and required far more from you than STD (STD is kind of like extended sick pay where LTD can be permanent). Although I went out of work for my knee is made sure they knew I was also treating for severe right knee arthritis. And while on LTD they found it had Carpal Tunnel Syndrome so I made sure LTD knew the diagnosis, doctor and his full contact info, dates of surgery, etc. I also have 50% hearing loss which didn't limit me from my occupation, it would limit me from some other types of work.
Best suggestion I received was get a small notebook and write down EVERY medical appointment date, type, and facility. Such as
2/3/12. Dr. T Jones, knee eval
2/5/12 Dr. M Smith (PCP), annual check up
2/7/12 Knee MRI at Coastal Imaging
3/15/12 Spine MRI at Southport Imaging
SpineAZ can help you a lot Greg. She knows everything about the LTD process. I encourage you to post here regularly. It might help to allay some of your fears about the process. The loss of income and the worry afterwards about how am I going to survive now scares the hell out of all of us.
Keep in mind that if approved for LTD, your group LTD policy probably mandates that you apply for SSDI. Now is the time to familiarize yourself completely with your LTD policy and understand how the SSDI process works. I have been on offset LTD for almost 2 years and have been approved for continued LTD under any "occ" clause. I have been on SSDI since Oct. 2011 and was given a 3 year CDR.
Last edited by BlueSkies14; 03-07-2012 at 04:19 PM.
The Following User Says Thank You to BlueSkies14 For This Useful Post: GregBear4you (03-08-2012)
Well I finally received my first treatment of Gammagard on March 19th. I had side effects of joint pain all over extreme fatigue and tiredness for about two days; slept for 18 hours straight after the IV treatment. My insurance did not accept the SubQ, but approved me for IVIG.
I was in the ER with pneumonia before the treatment, and then afterwards I had to go back to ER with another bout of pneumonia.
Also, I had applied with Hartford for LTD back early March, but they have not reached a decision yet. I called today and the rep told me she sent my case to the Medical review team to make a decision; she said there was not enough objective proof and too much subjective info from my doctors office. My doctor has been making notes of my recurring infections, symptoms of bronchitis, and I faxed over my ER records (both dates) to the rep for proof of recurring infections. I mentioned I would fax over my pharmacy records with the list of filled antibiotics for 2011 and 2012 currently.
I must say, I hope I am not getting the run around. A month is awhile now and I feel somewhat worried. She told me based on the ERISA law that Hartford has to give me an answer by early July. Also, I will not be able to return to work now my STD and FML is over. My employer will have to be notified I cannot work right now and am unable to return; so therefore, as of next Wednesday I will not have a job nor any income. I have some saving to last me awhile, but I wish I could get this over with, "accepted or denied".
Has any had this experience with insurance companies for LTD? should I get a lawyer at this point to work with Hartford? I just don't want to have them drag this out for months now...and as BlueSkies said before, maybe i should go ahead and apply for SSDI, since I have to anyway per Hartford.
Your employer is the one that makes the decision as to your employment. Is your employer administering your FMLA or is The Hartford administering both STD and FMLA.
If your STD is not approved, then the employer may wait for the decision before making an employment decision.
Many employers have extended leave provisions that retain people as employees on disabiltiy until LTD is approved. So when STD lasts 6 months, many employers hold off on terminating employment until STD is over and LTD begins.
However, once FMLA is exhausted the employer can make a decision at any time to terminate employment. If an employer does so they'll notify you in writing and provide you COBRA information for continuation of health insurance and also continuation information on other benefits.
Contact your HR/Benefits department and tell them The Hartford has not yet made a decision, confirm what date FMLA ends, and ask what the employers policies are for employment status after FMLA is exhausted. Employers should have a Employee Handbook that outlines all types of leave available.
STD and LTD are based on objective medical evidence to support why someone can not do the essential duties of his/her occupation. Recurring infections are considered, but if they can be treated while you remain at work then the insurance company would want to know what it is that led you to remain out of work between infections and while treating if no doctor has detailed why you are unable to work.
Be sure you have spoken to The Hartford about, objectively, what your key job duties are and why you are unable to do those continually. Also make sure they are aware of ANY AND ALL medical or psychological conditions that impact you in any way. For example, someone who is diabetic and has infections may have difficulty with diabetes control while fighting an infection. Or possibly someone has bone and joint problems being treated by a specialist that has compounded his/her incapacity. So be sure The Hartford knows every diagnosis, every doctor you see, every medication you are on, and every limitation you have from all these conditions.
It's amazing what people forget, when I did claims I'd have someone with a recurrent pneumonia and no where in the records did it say he lost a lung years ago thus has only one lung and it's compromised, and that's becuase the doctor was so experienced in treating the patient that he doesn't think to mention the missing lung in records. I had someone with dwarfism who kept saying return to work was hard, he couldn't even walk far, and eventually in talking to him he mentioned he had acondroplasia dwarfism and was under 4 feet tall, with many joint issues (hip replacements, ongoing back issues, etc) He had never mentioned it, and none of the medical records mentioned it, but it made it more obvious as to why recovery from back surgery was very tough and the impact on the spine and overall functioning of the claimant.
Excellent Spine! I have to say I had a very good employer. They treated me fairly and tried to help me all they could. They allowed me several UWA's even after my FMLA was exhausted. This company treated all employees like you were a part of a larger family. That was why it was so hard for me to let go.
Spine is right. After you have exhausted your 12 weeks of FMLA, you have no more job protection and the employer could terminate employment. Here is basically how it worked for the company I use to work for. They never terminated after FMLA. You had one year of STD to basically get better and return to work. If after one year you were still sick, you were retained as an active employee for 2 years on disability leave. LTD insurance was an option where I worked and you paid for the coverage entirely if elected, altho I know some employers pay a portion and some pay the entire cost. If you did not have LTD, you were basically retained on the books as an active employee but without pay. In a way, it was like an extended FMLA....2 years instead of 12 weeks. The caveat was the company was under no obligation to let you return during this 2 year leave. They terminate employment after the 2 year disability leave. I actually called up HR and asked them do many people return after being out for 2 years? She said there were a few but the majority never returned. She also told me that the majority who had LTD took it and just stayed on it until age 65 after being approved for SSDI ofc.
I was told by my HR that it would take about 3 months for my LTDI carrier to make a decision. The elimination period for my LTD was 6 months. Remember I had a year of STD. HR got with me in advance and helped me coordinate the filing of my LTD claim. It was timed so after I ran out of STD, LTD would be approved and there would be no lapse in income.
I would not get a lawyer at this point. LTD is scary I know. LTD is one of those things you pray you never need but one that you can't afford not to have. If not for LTD when i became too sick to work, I would have been devastated financially even tho I am now approved for SSDI.
In my case, it took my carrier about 2 months to approve my disability claim. I just looked at my LTD timeline. Hang in there Greg. I know this is a very scary and uncertain period in your life. There are many good ERISA lawyers today who were not available 10 years ago. Hopefully, things will never get to that point and your claim will be approved.
I got approved for a mental illness so I was very concerned since all evidence for mental illness is subjective. Luckily, I had a very long medical history. I had about 24 years of service with my ex employer. 22 of those years, I was able to work with the disorder but it was being managed with meds and psychotherapy. Now, my meds don't really work and I am left with a certain degree of psychological pain which varies from day to day.
Last edited by BlueSkies14; 04-16-2012 at 02:32 AM.
Reason: errors corrected after proofreading
Also, I had applied with Hartford for LTD back early March, but they have not reached a decision yet. I called today and the rep told me she sent my case to the Medical review team to make a decision; she said there was not enough objective proof and too much subjective info from my doctors office. My doctor has been making notes of my recurring infections, symptoms of bronchitis, and I faxed over my ER records (both dates) to the rep for proof of recurring infections. I mentioned I would fax over my pharmacy records with the list of filled antibiotics for 2011 and 2012 currently.
- G
Sounds like you are doing everything right Greg. It also sounds like you have a very good,supportive, concerned doctor. Give the carrier a little more time. I know it is almost impossible to stop panic and worry from setting in. It is good you have some savings to survive on if they have not reached a decision by next week Wednesday. I also had modest savings but luckily I did not have to touch this. How long is your LTD good for Greg if approved? I think Spine said hers is good until SSNRA. Mine ends at age 65.
Question? Exactly how long have you been on STD? Was the STD administered by Hartford or done in-house by the company you work for?
The STD was covered by the company itself and was for only 3 months. I was not able to extend it any longer, so needed to apply for LTD through Hartford.
The rep there called today and stated the chances are good they will approve it, but don't want to get too hopeful until I see it in writing.
I think my Hartford policy states I have up until age 65 and then after that they would no longer provide benefits.
The STD was covered by the company itself and was for only 3 months. I was not able to extend it any longer, so needed to apply for LTD through Hartford.
The rep there called today and stated the chances are good they will approve it, but I don't want to get too hopeful until I see it in writing.
I think my Hartford policy states I have up until age 65 and then after that they would no longer provide benefits.
Be sure to get a copy of the exactly plan under which you are covered. Most plans allow the first 24 mo of LTD under any Own Occ definition of disability during which you must be unable to do the material and substantial duties of your own occupation. Then after 24 mo the definition of disability becomes Any Occ under which you must be disabled from Any Occupation for which you are reasonably trained by education, experience, and ability and within a reasonable range of prior income. That means if you are a machinist with a HS education who made $41,000/yr, they can't say you can do a minimum wage job. Policies do vary, some rare ones don't have an Any Occ but most do and it's at 24, 36, or 48 mo (etc). And these days most LTD policies max out at your SSNRA (Social Security Normal Retirement Age). Go to www.ssa.gov and search for SSNRA. I was born in 66 so mine is 67 and LTD ends at 67. Some older LTD policies max at 65 but that's becoming more rare.
If you want, let me know, for claim discussion purposes:
-your age
-highest level of education
-type of work you were doing
-what has led you to be out of work
Be sure in applying to Hartford to list each and every medical psychological condition you have and are being treated for, every little bit of information helps your case.
And if you anticipate being out of work permanently be prepared to apply for SSDI. Your LTD policy will likely credit you for any SSDI attorney fees so get an attorney right away. Once Hartford approves your LTD, ask if they provide any Attorney referrals or assistance for SSDI. My LTD did so they coordinated with the SS attorney and forwarded to him all medical information. LTD deducts SSDI from your benefit. So if LTD is $1600/mo and you get $900 in SSDI you will then get $700 from LTD and $900 from SSDI.
I was recently awarded SSDI retro to 10/2009 and thus Medicare started retro to 10/2011.
I work full time, single mom, own my own home, voluteenr...I live a normal life. Asthma will not go away with the Igg replacement (IF it really is asthma). Start the treatments asap. Its very unusual for you to go straight to subq, the standard is usually one ivig THEN to the subq. Hope I answered some of your questions.
Re: Getting approval from doctor for disability 
Re: Getting approval from doctor for disability 
