Loin Pain Hematuria Syndrome Frequently Asked Questions
Why do I need to establish a MyChart account?
MyChart is the secure and preferred means for communication between the patient and the UW team.
How long does it take to complete a phone screen?
The coordinator will schedule the call for one hour. Depending on your past medical history, the call may be shorter.
When can I anticipate my phone screen to be scheduled?
Phone screens are typically scheduled for a few weeks in the future. This depends on patient volumes.
Where should I request my medical records be sent?
We unfortunately cannot accept medical records through email. Medical records can be faxed to 608-262-5624. Discs of images may be mailed to:
600 Highland Ave
Attn: LPHS Program
Mail Code 1735
Madison, WI 53792
What medical records are typically requested?
Records that are frequently requested include: recent history and physical with primary care provider, recent hospital admission notes and discharge summaries, recent office visit notes from specialists including nephrology, urology, gynecology, vascular surgery, interventional radiology, pain management, and behavioral health, pertinent procedure reports, pathology and lab results, abdominal imaging completed in last 3 years.
What are some potential next steps that may be recommended following case review?
Some potential next steps may include: consultation/evaluation by local specialist (nephrology, urology, gynecology, pain management, psychiatry) or further evaluation at UW Hospital.
What could be included in evaluation at UW?
Depending on clinical presentation, along with previous workup that has been completed, the following may be included as part of your evaluation: bupivacaine injection, CT imaging, cystoscopy venogram, and/or kidney biopsy.
How long will it take for my insurance to make a decision about authorization for evaluation?
Time required for authorization is determined by the individual payer. Typically, a decision is reached within 10-15 business days of the payer receiving the request. If, in addition to prior authorization, an insurance referral is needed our LPHS Financial Counselor will facilitate the referral request by contacting you and your provider and providing instructions.
What if my insurance denies the request?
If your payer denies the initial request for authorization, we will work with them to determine any appeal options. If we can appeal on your behalf, we will do so. If your payer requires the patient to submit appeals, our LPHS Financial Counselor will provide you with all necessary information to do so.
Am I able to seek evaluation and treatment if I live outside of the United States?
Treatment does require full prepayment of estimated charges. After you have received these services, you will either be reimbursed any overpayment or billed separately for any remaining amount due.
Can I make a payment plan to pay for services if I am paying out of pocket?
If paying out of pocket, the estimated cost of the services must be paid in full prior to services being rendered. With a down payment, we can set up a payment plan for you prior to services for you to pay into. Once we have received the total of the estimated costs you may proceed with services. After you have received these services, you will either be reimbursed any overpayment or billed separately for any remaining amount due.
Why must I be accompanied by a support person during my evaluation?
If tests or procedures are included in your evaluation, you will need a support person to provide care after the procedure since you may be undergoing general anesthesia or receiving sedation. We also encourage a support person to be part of the evaluation to hear about the disease process, potential treatment options, requirements of a primary support throughout the treatment process, and have an opportunity to ask questions. It is also a requirement that you have support during and after your surgery.
Where should I stay during my evaluation?
You can contact patient and family accommodations at (608) 263-0315. They will be able to assist you in making arrangements. Patients typically stay at the Best Western Inn Towner, or Restoring Hope Transplant House.
Will my insurance cover my travel expenses?
This varies with every insurance, but the costs for travel expenses or time taken are not typically covered. For additional information, please contact your insurance company.
Will I know if I am a candidate for renal autotransplant at the end of my evaluation?
No. The provider who evaluated you may be able to offer recommendations; however, each patient will need to be discussed at the interdisciplinary committee for final recommendation. The coordinator will call you with the committee’s decision.
Who will manage my pain treatment between evaluation and surgery?
You must have care established with a local provider to manage your chronic pain prior to surgery as well as long term management. The UW LPHS team does not manage chronic pain and looks to your local providers to help manage your pain before and after your surgery.
When should I make arrangements for travel/accommodations for surgery?
This is a personal decision. Some patients choose to make arrangements once surgery is scheduled prior to receiving insurance authorization. If you choose to proceed, it is recommended that you inquire if the arrangements can be changed and if additional costs are incurred. Other patients decide to wait until insurance has authorized surgery to begin making travel arrangements. This is the safest option in order to avoid unnecessary cancellation fees.
How long are patients typically stay in Madison for surgery?
Patients are typically in Madison for approximately 3 weeks. This includes the appointments the day prior to surgery thru the first postoperative appointment. It is the physician’s recommendation that you stay locally between hospital discharge and your first postoperative appointment.
How long is surgery?
Approximately 4-5 hours, but may vary depending on previous surgeries or complications.
Where will I be admitted following surgery?
Most adult patients are admitted to the general transplant unit (B4/6) following surgery. If there are any unforeseen complications during OR, the patient may require admission to the ICU.
Any patient under the age of 18 is admitted to pediatric ICU for 1-2 nights following surgery. Once the patient is transitioned to general care, they are transferred to the post-surgical unit (P5).
Why must I have 24/7 support from the time of hospitalization till the first postoperative appointment?
It is imperative that our patients have support to help them get through this or any major operation. In addition, they are need both to help absorb as much information as possible during your hospital stay as well as care for you once you are discharged.
Can my primary support stay with me in the hospital?
The primary support is allowed to stay overnight with the patient while in the hospital, although it is recommended for friends/family leave to allow for self-care.
How long is recovery?
It takes 2-3 months to fully recovery.
How long can I anticipate to be off of work?
Patients are typically off work for approximately 4-12 weeks following surgery.
What activity restrictions will I have after surgery?
No lifting, pushing, or pulling more than 10 pounds for 8 weeks following surgery. Do not drive while you are taking pain medication or for the first 2 weeks to allow your incision to heal.
What is included in the first postoperative appointments?
Your first postop consists of appointments with both urology for stent removal as well as follow up appointment in transplant clinic. You should know the appointment date and time prior to your discharge from the hospital. Further activity and work guidelines should be discussed at this clinic visit. LPHS patients need to have labs drawn prior to all transplant clinic visit appointments, so you should always come 90 minutes prior to your scheduled appointment to have your labs completed. This way the results will be ready to be reviewed during your appointment.
What is included in the postoperative follow up?
Following the patient’s first postoperative, the patient will need to have blood work and urinalysis 2 weeks after stent removal. This can be completed locally, and the coordinator will provide the letter with orders and follow up on results.
Following autotransplant, patients are seen back in clinic 3-6 months postoperatively depending upon their recovery. If their recovery progresses as expected, the patient can be seen closer to the 6-month postsurgical.
Patients will have routine labs completed at 3 months, 6 months, and 1 year after surgery. When labs are due and the patient is not being seen in the transplant clinic, the coordinator will provide orders for the patient to have these tests completed locally.
We suggest following renal autotransplant that your routine annual physical with your local care provider include a physical exam, blood and urine testing to see how your kidneys are working.
Who will manage my pain treatment after surgery?
The providers at UW Hospital will manage your acute postoperative pain. You must have a local provider that is able to provide long term pain treatment. If you require pain medication after 1 month post surgery, or you need to wean off your narcotics, this will need to be managed by your local provider.
After surgery, when would I need to contact my coordinator?
Please call your coordinator if any of the following occur in the month following surgery: increased pain not managed by prescribed pain medications, temperature by mouth greater than 100.5°F, signs of symptoms of a wound infection (increased redness or warmth around incision, presence of discharge), inability to tolerate diet, persistent nausea, vomiting, or severe constipation, troubles passing urine.
Who should I contact if I have signs or symptoms of a urinary tract infection?
If you experience pain with urination, frequent urination, cloudy or foul-smelling urine, please notify your coordinator but seek treatment from your local primary care provider. Testing and treatment is often much quicker when completed locally, as it can often be difficult to obtain results for expedited interpterion.
When should I see my primary care provider after surgery?
You must see your primary care provider within 2 weeks following your first postoperative appointment. This is essential to have a local provider to manage your care long term.