IV Day 6, Questions for You, and Dr. Toth's retirement

IV Day 6, Thursday:

Today was another good one, despite not going AT ALL as planned. Oops. We had many days we were up early, no problem. One we were up late, but still on time to our late appt. And then there was today, where we were up early with a late appt (10:30am) and managed to be late. Honestly, not sure what happened there, but it involved time to make eggs and coffee, time for dh to submit a resume, but a rushed shower, an equally rushed booking of the "insider wall street" finance tour, and no time to check the weather. But I did have time to blow dry my hair and make us late, which was ironic given I walked out the door and it was pouring. Forgetting we even had an umbrella in the apt, we attempted to hail a cab while walking in the direction of the doctor's office. Needless to say we got to Dr. Toth's prior to finding a cab. Halfway there we determined dh would go back after getting his 2 vicadi.n. Normally he waits in the office to "marinate" (Dr. Toth language) a half hour or 45 min, since his shots take less than 15min while my washes take 55 min (if they are a single wash-today it was).  I was a little concerned since that morning while wiping I felt tender, but the washes were fine. The only difference is I noticed the catheter being inserted, where I hadn't even noticed before. But after the first 1/2 second, I didn't even feel that. I think I mistakingly thought urinary tract when hearing catheter, but it really is in your cervix for these washes, so it isn't as big of a deal at all. I felt a little bit of cramps for the hour after. Dawn commented how healthy and pink my cervix looked now, not like I had even just had a D&C. Good news! I took an ibuprofen afterwards, just to be sure I wasn't slowed down at all for the day's events.

Dh came back with my jacket, his hat, and our umbrella and had his injections. He had no valium this day (didn't realize he had none since the first day). Today dh said the shots were even easier than Monday (Monday was also two prostate shots, no SV injections), which was a relief because he had woken a little tender today, given his four shots the day prior (SV injections plus prostate injections). But he continued to feel fine all day today, thankfully.

After our treatment, we were to do our follow-up appt with Dr. Toth. this was not to be done on the last day as Dr. Toth was not available. Which was fine because Sat was my last treatment, but dh would be done on Fri. Dr. Toth is the one that does dh's shots, Dawn the nurse does my washes. And we didn't want to do the follow-up tomorrow because dh would be on Demora.l and wouldn't remember the convo. We were going to ask Dr. Toth about this when we arrived, but they were already on top of it and told us to come into Dr. Toth's office after I got dressed.

Dr. Toth is very easy to get along with, if I haven't mentioned that before. He is funny, easy-going, has silly one liners I am sure he says to every patient. His job is to put people at ease. He is fairly easy to understand and he wants to make sure you really understand what is going on. By the way, all the staff is fantastic and so open to any questions, etc. One thing that struck me last time I was here was how often I actually got to talk on the phone to Dr. Toth afterwards. He really stays with you and is extremely committed and accessible. He reassured us of this again in his office.

First of all we discussed how Dr. Toth had only one result back and that was that we both had Chlam.ydia for sure. Prior to this trip, dh was tested with urine only at the urologist. We knew it wasn't an accurate test, but it was non-invasive so we let them. Can I just note that not everyone who goes to Dr. Toth has CT, but yes, most due. I know this because we came back negative (both of us) after heavy biaxin in 2008. At Dr. Toth's. His lab. So no, not everyone is positive. But we have a serious epidemic in this country of CT, and it is constantly perpetuated by the fact that people test negative by common testing and think all is well. So frustrating! And then if you do come back positive, the idea that one pill will take care of it when we know that it goes through various life cycles and that pill can never get the rest. So frustrating! I specifically requested no biaxin due to my suspected immunity. Dr. Toth already planned a different course for us. We would take two pills each day-one Ripamphin and one Zithromax. We would take them each a month at breakfast time, beginning 24 hrs after the IV is removed.

Okay, onto my tubes. Yes they were blocked. Dr. Toth reiterated his test was not as sensitive as the way Dr. Hilgers does it and all he knows is with even great pressure the dye would not go through. He said that when I had the miscarriages, the bacteria grows at faster rate than the baby with my immune system suppresses and that's how our babies die. He doesn't know if my tubes have scar tissue blocking them or they are merely swollen. If they are swollen shut from infection, the antibiotics can result in them reopening on their own. Smart girl, E! I had no idea! As a result, the plan is to wait one month (not one cycle) and have my local ob/gyn repeat the hsg. Prior to this we will have no intercourse because we will not want to chance any infection remains to reblock the tubes or further damage. We will be sure to have the doc view on the film if dye goes through. If it's blocked, we need to know if the dye goes only half way through and stops? If so, almost impossible to open and if so still much higher chance of ectopic. Now, if the dye gets stopped at the end, or only a little comes out, Dr. Toth said that is much easier to repair. Dr. Toth does not do surgery to repair tubes, and trusts that Dr. Hilgers to do the procedure if necessary, bringing on board appropriate abx to ensure he does not spread any possible remaining infection. Since my tubes were opened easily by Dr. Hilgers in June 2012 with the dye and open as recently as Dec 2012 when I was pregnant most recently, of course we hope they are not beyond repair. Now, we know that Dr. Hilgers is a wonderful surgeon at tube repair, so that will factor in to our decision of if we operate, etc. I would love to hear from you if you've had a tubal repair surgery with Dr. Hilgers. I am glad we can retest so soon. We certainly don't want to put off a surgery when we can do it this insurance year. Let's just say we will have no problem saying we paid over 7% AGI in medical expenses. For anyone who has claimed that, I would love to hear from you what kinds of records I should keep and questions I should be asking.

If we do operate on the tubes, we will have to wait the amount of time required to allow everything to heal (maybe 3-4 months) to ttc. Normally Dr. Toth says 3-4 months post treatment is a good amount of time to wait to ttc to allow the immune system to calm down. Not us. If my tubes are open in a month, he wants us to ttc right away if that is our ultimate intention. Dr. Toth also reiterated what we were thinking, if we have another loss, its the end of the road for us. No questions.

Now if we do get pregnant, he will likely be changing my IV from Clindamyacin to something else. I have had FIVE-ten day IVs of Clindamyacin (4 for pregnancies, 1 for treatment just now) and 2 IV's of Clindamyacin during my two full term deliveries. Yes, you read that right. That means I have moved beyond the norm for Dr. Toth even and into unchartered territory. He thought, he scratched his head, he talked out loud, he told me to remind him.  Dr. Toth kept repeating he would not drop me and we would work through all of this. I did, however, push him a bit about the IV to think about it now because I have been known to get pregnant the first cycle trying. Since Dr. Toth has recommended in the past to get the IV as soon as my hcg doubles, that is a fast turnaround. Even with the local infusion company on board, a new script would slow things down, and once they receive it, they usually need a few days to prep (longer if the weekend). He mentioned rice something or Cleocin. The others tend to burn veins. Then I would continue an oral regime during pregnancy as I did with Anthony (that wasn't in place when I was pregnant with Charlie) of 10 days on, two months off. With another IV upon delivery, I assume, though it wasn't discussed.

I did ask about concern with me being on hcg. Dr. Toth said even though it suppressed the immune system, it was mild and he wasn't concerned. I FORGOT TO ASK HIM RE LDN. I also told him we didn't really want to ttc if Dr. Toth had major concerns it would put us right back here. Only way to stay 100% was to avoid intercourse always (or use condoms) and not tic. If we feel so much better after treatment and never want to go back there to those symptoms, that was our best bet. But there were good signs, like how healthy our boys were after just biaxin and how dh's prostate didn't look any worse than it did five years ago. Sure, there were infection signs, but in his eyes I am young (35) and the end of the road was only clear cut if a) the tubes are blocked in a way that is difficult to repair and not likely successful or b) we had one more miscarriage. We agreed. Time will tell. So another question, for those of you Catholics that did treatment, did you limit intercourse? Did you avoid except ttc? Did you use perforated condoms? Or did you return to sharing infection if any remained in each of you? No judgement, just contemplating.

So that's it for next steps. We tested for more bacteria that will be back in 2-3 more weeks, but CT was the big one. If I add in the Dr. Hilgers the timeline looks like this---

  • Dh gets demoral, 2 prostate injections, 2 seminal vesicle injections
  • I get double uterine washes
  • We both change IV bags (every other day)
  • remind them to send copy of records to local ob/gyn and Dr. Hilgers
  • I get last uterine wash
  • They teach us how to change bags and send us home with another.
  • We head to the airport and get to see the boys again!
  • We change the bags
  • Go to work with IVs.
Tuesday morning:
  • remove IVs, ship to NY the pumps
  • make appt for local ob/gyn to check my tubes
Wed morning:
  • start orals for 30 days
About Sept 3:
  • start my period-be sure to chart with care and note if my TEBB is gone, etc
Sept 21:
  • maybe peak plus 7 draw

Sept. 25:
  • last day of orals
  • have local ob check my tubes and fax results to Dr. Hilgers (no intercourse since prior to treatment
Sept 28:
  • cycle review-dr toth says my prog and estrogen may be good on their own as result of treatment and hcg may not even be necessary. 
  • see if I can get on all my meds and ttc if tubes open (mid Oct). This would be the first time we would have green light to have any intercourse. Dr. Toth did say I may  not even need hcg anymore after treatment. However, given that it won't hurt, he suggests we don't alter since we are trying to get pregnant right away.
  • Dr. Toth may want me on pre peak orals, check 
  • if tubes not open, have Dr. Hilgers comment on surgery-if and when, ensure he will use abx to control possible infection.
  • So if all went perfectly, and according to Hilgers stats we got pregnant in first three cycles as our history supports, should we carry to term we would be looking at a mid July, mid Aug or mid Sept (2014) due date. Is that getting ahead of myself, absolutely. Just stating best case scenario.

Questions for Dr. Toth:

  1. Will my next cycle be delayed due to D&C that occurred around ovulation and treatment in general? Some girls may be reading this that can chime in on their experience-please!!!
  2. Confirm wait 1 month (30 days) not 1 cycle to retest tubes.
  3. If we test positive for something else, will that alter our orals?
  4. If tubes are open and we try in what would be Oct, do we take any pre peak orals?
  5. What about LDN? Any concerns about use when ttc? Dr. H was going to add it in. 

Dr. Toth's retirement plans:
Dr. Toth's retirement is not like what you and I would consider retirement. He is merely scaling back and will be only 10 days living in NY each month, and at least two weeks every month in FL. He mentioned opening a second site in FL and neither dh or I thought he was kidding.

Okay, I thought I would get to our fun stuff today, but I will just keep it brief (for me). I took us down to lower manhattan for a wall street insiders tour (dh is a CPA; i find it interesting as well). except in my hurry today I didn't realize the tour wasn't daily, so i accidentally booked it for tomorrow (a demora.l day). Oops! That caused us to unnecessary rush down to lower manhattan and miss St. Patrick's again! At least it won't start until the it should be out of his system. It was pouring and we stopped at a coffee place and regrouped. Lower manhattan has these great signs with all the attractions, so we ended up discovering a treasure we wouldn't have found otherwise: the Museum of Jewish Heri.tage. Dr. Toth's is near museum mile, but dh and I are more into history than art or natural history which was the focus of those. Even the Jewish museum on the mile was more artifacts and art focused. So we were thrilled to find this gem for $12 each, not just because of the Jewish roots of our Catholic faith, but for my own personal Jewish roots. My mother's mother (yes, that means me too) was jewish. Though sadly she knew nothing of her faith. Her parent didn't pass it down for fear of ridicule. They came over from Poland/Russia area to start a new life. My grandmother married a Catholic and the rest was history. :) The museum was great, as was the free ferry ride to S.taten island passing the statue of lib.erty. We grabbed an appetizer and tried a peach beer at a festive local bar with live music and headed home exhausted I am bummed we missed St. Patrick's, but it looks like we will head that direction again tomorrow!



E said...

If I were you, i wouldn't worry too much about tubes. They will probably open. I'm not sure if the other bugs will alter your orals.

As for the intercourse, that is something to really decern for your marriage. It.is.really.hard to deal with CT for the rest of your marriage. Really hard. So my suggestion is take it month by month.
My peak day was not delayed due to anything I had done at the office.
thanks for the update on his retirement! I can't imagine him retiring ever.
I love Dr. Toth. I wish every doctor I saw had his bedside manner and openness to questions.
again I seriously doubt you will tubal repair because the abx are better treatment for that.

Anonymous said...

Thanks for writing all this down- it has been very helpful. I'm keeping it bookmarked for reference. What have you done as far as probiotics to protect your system during treatment? Have you had any issues with yeast infections with this or past treatment? I struggle with that just under Hilgers antibiotic treatment. Thanks! -Renee

All in His Perfect Timing said...

So much to remember!! You are so thorough in your posts ... Which is great!!! I'm glad your appointments are going well!

Alive in HOPE! said...

Awesome journal, J! (You make me wish I had blogged more throughout the process.)

As for opening the tubes, if it becomes necessary, the procedure itself is really quite easy. They run a tiny wire down each tube. You are in/out of the hospital same day. The down side is that - if you have an insurance company like mine (and many others, I'm sure) - they will not pay for this procedure. As I recall, we ended up with about $4000 out of pocket, and this was on the hospital side. Dr. Hilgers' fee is less, of course, but still not covered. I don't know why the number $500 is coming to mind. I should really just look up my old invoice from last year and let you know for sure.

Hey, did you get to see Dr. Toth's 'Smart' car?? Can you imagine driving around NYC in such a tiny little vehicle? LOL! :) Hmmm... He is actually rather tall. I imagine that it is rather challenging for him as well, but worth it in a city that costs SO much to live in, I suppose.

Thank you for giving Dr. Toth that hug for me. Who knows what the future holds. It is still a mystery if we will ever see him again.