How was your experience with Thomas Burwinkel at Institute for Reproductive Health?
I have seen every doctor at IRH over the last two years and over that time, I have become the most comfortable with Dr. B and as a result, switched over to him as my primary physician in early 2019.
I am someone who needs my doctor to explain the details of my diagnosis and treatment in order to feel confident in our plan of action. If the details are not explained to me, I get very anxious. Dr. B learned this about me very quickly and takes the time to explain everything to us as well as answer all of my questions. When we ask for additional consult appointments just to talk about next steps, he is always accommodating and takes the time to ensure all of our questions are answered.
I am also a very direct person who wants an honest assessment of the situation, even if it's tough to hear. When I'm told overly positive things repeatedly and then experience disappointment, that makes me distrustful. I realize that this helps some patients, but it is not something that works for me. This is why Dr. B is a perfect fit for me. We have had to have quite a few tough discussions over the course of my treatment (he diagnosed 2 of my 3 miscarriages, had a discussion about donor eggs, as well as discussed use of a gestational carrier) and he has been fantastic. He has a way of being direct about the tough things, but is compassionate and helps you understand the full picture. Dr. B opened my mind to the possibility of egg donation after a couple of egg retrievals with less than desirable results but let me know that they would continue to try with my eggs as long as I was willing. He also was honest with us when we asked about a Gestational Carrier, stating that it was our best shot for the one genetically normal embryo we have frozen.
Because of Dr. B, we hope to transfer to a gestational carrier in November with our own embryo and hope to transfer to me in December with a donor embryo.
I cannot say enough good things about Dr. B. I truly believe we are on our current course because of him and I have 100% faith that he is leading us in the right direction.
What's one piece of advice would you give a prospective patient of Thomas Burwinkel at Institute for Reproductive Health?
If you are somebody who wants all the details of your diagnosis and treatment plan, likes to ask questions, and wants someone who will give you honesty, ask for Dr. B to be your primary doctor (or Dr. S).
If you get overwhelmed by the details and want a doctor that will give you more general encouragement, ask for Dr. A to be your primary doctor.
During treatment, were you treated like a number or a human with Thomas Burwinkel at Institute for Reproductive Health?
I switched to Dr. B in early 2019 because after 2 years of care at IRH, I realized that I had established the best rapport with Dr. B and that he spoke my language. He takes the time to explain my diagnosis and treatment cycle to me, which is extremely important for me personally. I never feel like he is in too much of a hurry to answer my questions. I also know that every time he sees me he knows who I am and my history and not just because he looked at my chart 5 minutes before my appointment. He is direct and tells me what I need to hear, but does it in a way that is kind and compassionate.
Describe the protocols Thomas Burwinkel used in your cycles at Institute for Reproductive Health and their degree of success.
Egg Retrieval 1 with Dr. B (3 Overall): 225 Gonal F, 150 Menopur, Cetrotide = 7 Eggs Retrieved, 2 Blastocysts, 1 PGS Normal Embryo. With this cycle, he added an extra vial of Menopur to attempt to get a 4:1 Ratio of FSH to LH in hopes of retrieving more eggs. The strategy worked as I had only ever had 3 eggs retrieved previously.
Egg Retrieval 2 with Dr B (4th Retrieval Overall): Femara 5MG Per Day Cycle Days 3-7, 225 Gonal F & 150 Menopur Starting Day 3, Cetrotide (NOTE: Dr. S recommended this cycle) = 9 Eggs Retrieved, 3 Blastocysts, 0 PGS Normal Embryos. With this cycle, Femara was added in hopes of getting more quality eggs.
Egg Retrieval 3 with Dr B (5th Retrieval Overall): F 225 Gonal F & 150 Menopur Starting Day 3, Cetrotide: 4 Eggs Retrieved, 1 Blastocyst, 0 PGS Normal Embryos. With this cycle, we started out with less than an ideal follicle pattern, so our expectations weren't as high out of the gate. The thought was to go back to the retrieval where we got a good embryo and I 100% agreed with this strategy. If I had to go back and do it again, I would do the same protocol.
Dr. B also ordered all of my recurrent loss testing after my 3rd miscarriage (which was with a PGS Normal Embryo). He tested for Thyroid Levels, Blood Clotting Disorders, and Auto Immune Disorders. He also recommended a uterine biopsy for an ERA Test for Embryo Transfer Timing & Receptiva Test for Endometriosis. Blood Tests came back with slightly elevated Prolactin & TSH. While he did not believe this is my primary issue, he started me on Levothyroxine. The ERA test came back normal. The Receptiva Test came back positive for inflammation associated with endometriosis. The strategy here was to test me for everything under the sun since I had been pregnant 3 times and all 3 resulted in miscarriage, with the last one being a PGS Normal embryo. Even if we hadn't diagnosed anything, at least we could have eliminated them as possibilities. This was a strategy that I was 100% on board with and would do over again.
Treatment for endometriosis consisted of 2 months of Lupron Depot Injections, which put your ovaries into a temporary state of menopause in an effort to get rid of the inflammation associated with endometriosis. We have decided to repeat the biopsy after treatment is completed before attempting an embryo transfer with donor eggs. This repeat test was particularly important to me because I don't want to do an embryo transfer without knowing that the Receptiva Test is negative and I was thrilled that Dr. B was supportive of repeating the test.
Our Egg Donor Cycle is currently in process. Our Egg Donor (a known donor) is doing Gonal F and Cetrotide with doses to be determined. Dr. B recommended considering an egg donor after our 1st egg retrieval (2nd cycle as 1st was cancelled) yielded only 3 eggs and no PGS Normal Embryos. We did 4 more egg retrievals after that resulting in only 2 PGS Normal Embryos. So, after 5 egg retrievals and only 1 Frozen PGS Normal Embryo left, we decided it was time to move onto the egg donor waiting in the wings. His suggestion earlier on in the process allowed us to get our egg donor lined up but to continue with our own retrievals until we were ready to move onto the egg donor. We elected to do PGS Testing on our Donor Embryos, which is unusual, but given my history with loss, we were only interested in proceeding with embryos confirmed to be genetically normal. Again, Dr. B was supportive of our wishes and helped us formulate the plan.
Finally, we are doing a frozen embryo transfer cycle with our 1 remaining PGS Normal Embryo and a Gestational Carrier (known carrier/friend). Our Carrier took several weeks of Lupron Injections to down regulate her ovaries and will take normal estrace/progersterone protocol for a frozen embryo transfer. When we brought up our concerns about how few of our own embryos we had, Dr. B was in agreement that a Gestational Carrier was our best chance of success. He recognized our priorities and we appreciated his candor and honesty in his recommendation.
Describe your experience with your nurse at Institute for Reproductive Health. (Assigned nurse: Sarah Price)
First, I want to note that generally speaking, patients are not assigned a primary nurse or care coordinator at IRH. Sarah Price and Lizzie West are in charge of the Egg Donor and Gestational Carrier programs at IRH. Since we are coordinating care of both an Egg Donor and a Gestational Carrier in addition to my treatment cycles in a relatively small window, our treatment plan is extremely complicated. Given her position as coordinating egg donors and gestational carriers, Sarah Price stepped up became our primary nurse.
With that being said, I cannot say enough great things about Sarah. She has been absolutely amazing. She is exceptionally supportive, extremely organized, walks me through all the details, answers all of my questions (there are a lot), and truly makes me feel like she is invested in our success. She has truly gone above and beyond for us and I am so incredibly grateful for her help.
As stated above though, if you are not one of the extremely complicated cases, you will not have an assigned nurse or coordinator. IRH has a team of standard treatment nurses and a team of IVF nurses. Overall, I would say that the team of IRH nurses are pretty amazing. They're knowledgeable, patient, and supportive.
One thing I would definitely recommend is to write down the names of the nurses who have been particularly helpful to you. While you don't get to pick the nurses that you see at your appointments, it is helpful to know the ones that have worked well with you in the past.
In addition to Sarah, who I mentioned above, some of my absolute favorite nurses are Mindy who has drawn my blood a zillion times and always takes great care of me, Devin who did my Lupron Depot injection (which is intramuscular) and I didn't even feel it, Jackie who was my nurse several times for egg retrievals and even called to congratulate me when we found out we had a normal embryo, Katie who was my nurse for several egg retrievals and is absolutely amazing, and Sarah (a different Sarah than above) who has walked me through the instructions for some of our tougher cycles.
There are plenty of other great nurses there. These are just some of the ones who have been exceptional during my treatment.
Describe your experience with Institute for Reproductive Health.
Strengths: Convenient Locations, Prompt Call Backs, Compassionate, Knowledgeable, and Supportive Staff, relatively short wait times, clear instructions and treatment plans.
Weaknesses: High Volume so it can feel like you're a number (some of that is on you though - if you seek out the right doctors and nurses you won't), you won't get a live person when you call (but they will call you back same day)
Recommendation for patients: Your experience will be better if you are proactive and take ownership of your journey. If you have questions ask them. If you have a preferred doctor or doctors, try to schedule with them as much as possible. If you want an extra consult to talk about your treatment, schedule one. If you're nervous about something, don't wait, call them. Keep track of your medications, follow up with them to make sure things are being done timely, etc. They do an amazing job, but it's a high volume clinic so your journey will be so much smoother if you are on top of everything and help them be the care team you need.
Describe the costs associated with your care under Thomas Burwinkel at Institute for Reproductive Health.
This really depends on whether you are out of pocket or insured.
IVF with PGS Testing Out of Pocket (all in for meds etc): $24,000
Embryo Transfer: $4500
Screening for Gestational Carrier and Husband: $2700
Screening for Me (to use Gestational Carrier): $1700
Multi Cycle Package for PGS Testing: $2150
With insurance it is significantly cheaper. Once we hit our deductible, IVF without an embryo transfer was about $600. The PGS Testing is $2150 in addition to the $600 but we should potentially get reimbursed for that from insurance. These costs are really going to vary depending on your insurance coverage.
Describe Thomas Burwinkel's approach to eSET (elective single embryo transfer) vs. multiple embryo transfer at Institute for Reproductive Health.
All of the doctors at our clinic typically prefer single embryo transfers. We have always used PGS tested embryos, and in those cases, they will only transfer 1 embryo.
What specific things went wrong at Institute for Reproductive Health?
- Provided conflicting information
Describe the specific things that went wrong at Institute for Reproductive Health.
I wouldn't say that things have gone wrong necessarily. It's more that things *could* have gone wrong if I hadn't been paying attention. For Example:
(1) If I hadn't kept a meticulous inventory of my IVF medication, we would have been scrambling mid cycle to get additional medication (I know this is relatively common, but I prefer not to have to deal with it)
(2) I would have lost a month of my treatment because we didn't have the proper prior authorization for my Lupron Depot Injections. This wasn't necessarily their fault - actually it was more the pharmacy - but if I hadn't been persistent, we would not have gotten the medication on time.
(3) At one of our Pre-Retrieval instructions sessions, a nurse gave us conflicting instructions for a PGS cycle. It actually really freaked me out because it was our first retrieval. I called back and requested to have someone walk us through it again to ensure I understood and everything got clarified.
(4) A prior authorization was not submitted timely and we had to miss a month for our retrieval cycle (no harm done - we did a uterine biopsy instead, but it still did result in the change of our treatment cycle).
So, like I said in my previous response, it is in the patient's best interest to make sure they are an informed patient and proactive in the management of their treatment. Only you know your history the best, so be proactive and help them give you the best treatment possible.