IV Day 10 and Beyond, HSG questions, and news re Dr. Hilgers -updated

I don't think I mentioned this Monday, but I definitely did start my period yesterday, so actually Monday was probably CD1. Also Monday, I had called and left a message first thing with Dr. Hilgers office. I wanted them to hear from me exactly what we had done in NY, as well as the next steps layed out for us. Also, it occurred to me that though Dr Toth had said an HSG could be done anywhere in 30 days, I realized Dr. Hilgers may think differently. First of all, I know Dr Hilgers gets more info from his selective HSG. Secondly, I know Dr. Hilgers unblocked my tubes during the procedure where he was checking the tubes. I didn't want to turn this into two procedures when it only needed to be one. Third, I didn't know if I needed antibiotics on board just for checking. Finally, I wanted to talk to Dr. Hilgers about the need for me to do a cycle review this cycle and have all my meds back on board starting next cycle in case my tubes were unblocked.

On Tuesday morning, I took both my husband's and my IV out yesterday without incident. I just removed all the bandages, covered the spot with an alcohol pad and gauze and pulled out the tiny spaghetti string. It was maybe 10 inches or so. it didn't hurt, and it didn't really bleed at all. I packed up the pumps in bubble wrap and sent it insured to Dr. Toth's office right away. Yesterday was antibiotic free after that. My stomach is not hurting, I continue to have looser stools, but they haven't gotten worse at all.

Yesterday I also talked to Dr. Hilger's nurse, Teresa, and I am glad I did. First of all, she was very interested to hear about NY, as well as Dr. Toth's retirement plans. She had already received a copy of the D&C and HSG results. She listened to everything I said. If I understand right, she did think Dr. Hilgers would like to do an selective HSG, but potentially during a lap to get a better look. I don't know how I feel about that for a few reasons, mostly because I don't know if the risks outweigh the benefits. Once the procedure becomes surgery, I have great fear about spreading any potential remaining infection. Also, who knows when I can get in as we all know his surgery schedule is crazy and timing with this is key. And it just makes the logistics more difficult. I could be wrong, but I thought I could drive to Omaha, have the HSG and drive home. If it turns out I am under anesthesia, I might have to coordinate to bring my mom or someone else with. Just more hassle. If its worth it, fine. But the idea that we might undo $15k worth of treatment with something that may not be necessary...well I think I just stopped breathing for a second there. This is sort of our one chance at this full treatment per dh, you know? Teresa was going to check the surgery schedule and then talk to Dr. Hilgers either by writing it up and getting a written response or at their weekly meeting on Monday. She asked me which I preferred and we both just agreed that this is time sensitive. Obviously, I am going to wait and see what Dr. Hilgers recommends, but I do think he is new to this controlling infection during surgery. It seems there is a good chance it is inflammation and they will open without us even checking. I mean, Dr. Hilgers was able to open them last time with a wire during the selective HSG. That would indicate it probably wasn't scar tissue last time. If its the same, they may open on their own. We could potentially try without even checking them. However, there is risk in that. We are as clean as we will be. We are abstaining. Once we start ttc, we will start sharing any bugs we have that may have been left in either of us. We don't want to "waste" ttc and potentially spreading infection for three months with blocked tubes. So that makes me think we should check them as Dr. Toth suggested. He said anyone could do the procedure and I don't think he was worried about infection spreading for the typical checking of tubes. However, I could be wrong. I don't know much about the procedure and I thought a former patient said the Dr. Toth should be the one to unblock tubes because he can minimize infection. However, Dr. Toth told me he doesn't unblock tubes anymore. I don't know. So then, the question is do i have a local person do an HSG, Dr. Hilgers do an HSG or Dr. Hilgers do a lap HSG? Again, I am open to hearing people's thoughts because I don't know enough about the differences. It seems maybe if  Dr. Hilgers does the lap HSG, then he can unblock with a wire whereas he can't unblock them if he is just testing them? However, if you can only unblock the tubes that are closed due to inflammation, that seems to me they will already be opened if that is the case so that isn't a big threat? If they are really blocked due to scar tissue, could that be done during the same lap? I assume not, but I don't really know. If they are blocked and Dr. Hilgers finds out through HSG that doesn't include a lap, will he have teh full info he needs to determine if it is a minor versus major repair. If it's minor surgery repair, obviously I will be facing the surgery decision regardless if we avoided the HSG lap. So lots of unknowns about the procedure and risk. I will wait for Dr. Hilgers input, but in the meantime I would like to hear from those of you with experience.

Teresa also had some helpful recommendations for immune support.

• D3 (start at 4000 iu a day for a month and then go to 2000ius)

• The dose of Tumeric is 1000mg twice a day-turmeric is a powerful anti inflammatory-Dr. HIlgers later took me off this saying there is preliminary evidence of birth defects and he didn't want to chance it. 

• a 12 strain probiotic -The probiotic is called thera biotic complete from a company called Prothera inc. You need a doctor's code to order it. 

• a concentrated antioxidant drink you take 1 fl oz daily, contains acai, blueberry mango seed...I need to refer back to my notes but you can buy it at whole foods or through other places. I found this on amazon and it looks the exact same. Note, price is for 3 bottles, each with 32 servings.

http://www.amazon.com/SUPERFRUIT-ELIXIR-Concentrated-Liquid-Antioxidant/dp/B0097XGLE0/ref=sr_1_1?s=hpc&ie=UTF8&qid=1377710480&sr=1-1&keywords=concentrated+antioxidant+drink

This morning we started the oral antibiotics. We are on once a day 300 mg and 500 mg Zithromax. The is the one that can tint your sweat, tears, urine etc red so that would be crazy. It also might upset your stomach, but is best taken on an empty stomach. I took it at 7, felt nauseated around 8:45am despite breakfast by then, and then felt better around 10:30am. That makes me think it was the medicine, but we'll see. Charlie said he feels sick to his stomach after breakfast, so it could be a bug or a something we both ate.

The news I wanted to share about Dr. Hilgers that I am excited about is that both his son and daughter are ob/gyns and doing a fellowship with him. How cool is that?! I wish Dr. Toth would work more toward training others, but I am so grateful to Dr. Hilgers commitment to continue his life's work!

IV Day 7-9

IV days 7-9-Fri, Saturday, Sunday (I changed the way I numbered things to try and make it less confusing. I also added pics to this and previous posts, so feel free to check them out!)

Things continued to go smoothly. My IV has never really bothered me. The worst is it got mildly sore today. In addition, the clear plastic pulled on my arm hair a bit today (day 9). Other than that, nothing. It is easier than my pump I had with previous IVs because mostly they took care of it (changed bags, batteries), they wrapped it much better so I didn't have to wrap it each day to shower, and the tubing is less likely to kink meaning I haven't once heard the alarm (so dh doesn't feel nervous about going to work with it tomorrow). Other differences are it is a different brand of pump, takes smaller batteries, and the IV bag is more concentrated (i.e. less actual fluid going in). I am perseverating on the small stuff only to give you the full pic and tell you there is nothing to be worried about :).

I never got any more cramps or soreness. I am noticing looser stools, and my guess is I will be a downright mess by 30 days despite probiotics. Such is life. I am much happier home with two ply soft toilet paper than that sandpaper in the apt and the airport. And can I just say I wish I had some moist toilets in my purse? Okay, TMI. I know. But for those following in my footsteps, pack accordingly. :)

Day 7 we continued to have fun, walking half way across the brookly.n bridge (because we were that lame and TIRED-tons of walking all week). Greeting me when I returned was Wafels and Dinges. I was excited to finally be in the same spot at the wafel truck my BFF turned me on to, which was a game I figured I would lose due to technology not cooperating and thus overjoyed that it randomly happened.

Since we flew home on day 8, we each were taught how to change our bag (due to occur on day 9) and batteries (not expected, but just in case). We traveled home with the pumps on and extra IV bags in our checked luggage. Dr. Toth's office provided a 2nd letter, this one more specifically for the airport. This letter included mention of the extra IV bag. We presented the letter with our boarding pass and DL and were given instructions. We simply went around the scanner and got patted down. It was fine and there wasn't much delay.

The trip was fun and helpful, but it is so awesome to be back home with our sweet boys.

I changed both our bags this morning easily and without incident. I had some brighter bleeding this morning, so I wonder if I am actually started. Dr. Toth said it may or may not be delayed. As before, the blood is bright red and healthy, which is always awesome to see. The first time I was on the antibiotics and saw the bright red blood, I was so shocked. I had no idea it was supposed to look like that!

Tuesday morning is day 11, so I will remove the IVs in teh morning. Dr. Toth send home alcohol pads, 2x2 guaze, and bandaids. They don't expect it to bleed much, and it is just like a long piece of spaghetti (no needle or anything). Again, not concerned. We will take Tuesday off and start the orals Wed.

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

IV Day 6, Thursday:

KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY
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---

Fri:

• 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

Sat:

• 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!

Sun:

• We change the bags

Monday:

• 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!

 KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY

IV Day 4 and 5

IV Day 4 (Tuesday)
This day I actually slept in until 9:30am NY time which is unheard of for me, even when adjusting to our local time. We through ourselves together and I went for my 1 wash while dh read across the street in Central Park. We took our books everywhere, there was lots of down time on subways etc and we loved just being outside. My treatment was uneventful except that Dr. Toth thought he saw CT on both of our slides. I say thought because he has to look at the slides several times for over an hr each, and then someone else confirms what he sees. So it can be a long process, but there is no "growing out" of a culture like I originally thought. Dr. Toth planned to look at it again the next day with fresh eyes. We left that day with letters from the office so we could do more sight seeing and avoid scanners. We took the train to lower Manhattan hoping to see the 9/11 memorial. We knew we needed advance tickets and didn't have any, but it worked out. We got tickets for an hour from then, I grabbed some cheap sunglasses from a street vendor, and we had a really good meal for cheap ($7 chicken sandwich with roasted red peppers and chipotle mayo-yum!). What to say about the memorial? I won't use the right words to do it justice. It was beautiful, meaningful, unitive experience. I felt somber and yet very peaceful there. If you don't go with a tour, be sure to talk to someone who works there. There was a ton of updates since the pamphlet had been produced. Tower 1 was now finished and replaced the twin towers. So much symbolism there and in every single detail of the memorial. I especially loved the story of the one surviving tree. And a new thing that just began, volunteers put white roses in the name of anyone whose birthday it would have been. They wanted to remind people to remain reverent and that this was basically a cemetery. It was all very moving.

Prior to that, our subway experiences were all fine. Even positive. This one though was very very crowded and hot. Yuck. But following that experience we had one where the a/c was just blasting cold air and was such a welcome change. I learned a I really needed a more appropriate size purse with me. Carrying dh's book meant I wasn't always zipped up and that is really just an invitation. A girl my age brought to my attention she could see my wallet and I was appreciative. This was one of our hotter days, approaching 88 degrees. The IV was more uncomfortable on the hotter days, just because you are basically wrapped in saran wrap for half your arm, but mostly the weather was so mild while we were here we were really spoiled (76-83 most days). Dh and I did NOT wear long sleeves like most reported. I had a light jacket I could thrown on or over my arm whenever, but it just wasn't a big deal. To date, no one asked. I am sure a few wondered, but we weren't looked at like lepers or anything. (note, someone asked on our last day, but she assumed it was a tattoo covered up, which makes total sense given how the bandage looks; in all my time with IVs, it is crazy rare that someone asks, but when they do I say I have an infection and assure them it's not contagious, I just need 10 days of antibiotics, but there is no other need for me to be in the hospital; for those that know an infection causes our miscarriages, some ask what kind of infection is it when they know us well. I say it's a form of mycoplasma or "ureaplasma urealycticum" and shrug. That is the truth, or at least it was, and you better believe no one is going to go home and google that one. Honestly, I could care less if its that important for them to know).

That evening we headed to a Yankees game in Bronx. They won! Very festive subway home. Since there was a huge line after the game to refill our metro card, we offered to pay someone more to swipe theirs twice. Lesson learned: if they have bought an unlimited pass, they can't swipe twice in ten minute. One girl got stuck, unable to go through after letting me through with her card. A very nice gentlemen stepped in with his card that wasn't prepaid and got her and my dh through. The subway was festive on the way home after a win. I love all the languages being spoken everywhere you look. And constant acts of kindness, giving up seats on the subway for someone else, etc. Such a great experience. And no one ever minded giving us directions. We were often wanting to confirm we were catching the training going the correct direction. No one steered us wrong :) As far as IV and treatment go, I had the slightest cramping this day and a tinge of blood when wiping twice. No big deal. We truly were not hindered in any way. 

IV day 5 (Wednesday) 
Finally up to real time! Today was my D&C and dh's first seminal vesicle injections. We could not eat or drink after 12am because we were both going to be given Demora.l. We had previous discussions about whether to be on it at the same time and decided it would be alright. Our appointment was at 9am, so this time we were told to arrive 30 min prior. I don't think I mentioned previously that every other day our IV bags were changed. This was done so quickly and effortlessly by Dawn, Dr. Toth's nurse, that several times I didn't even notice her doing it. While caring for the IV was not a big deal at home, there were several times with my previous IVs at home that I would forget to restart the pump after changing my bag or batteries. This would add time onto an already long stint, so it was nice to hand over these duties and forget about it. Also, the pump with Dr. Toth never beeped due to being kinked. It had to do with how she wrapped it and the tubing Dawn used. At home, I often worked with the pump on and would be embarrassed by it going off due to a kink. The only time I thought it kinked, it was our apt fridge beeping for being left open too long-so funny! So no beeps to date.

Anyway, we arrived at Dr. Toth's and were immediately swept into our separate rooms. My D&C wasn't full (just minor scraping of the cervix to expose infection to the wash). I have trouble with anesthesia and narcotics, often vomiting. I let them know and they weren't concerned. They were already giving me a valium type substance that blocked nausea receptors. It was really effective and I only had two slight waves of nausea. I asked Dr. Toth if he had time to relook at the slides and he said yes, they both were positive for Chlamy.dia. They put the demora.l in my IV along with the other med and I told them immediately when I felt it. I knew it was in me because the ceiling was moving :) I was awake and aware that Dr. Toth was doing the scraping, and I felt it though it didn't really hurt. The medicine worked because I didn't care that I was awake. And it was never mean to put me out, just basically really sleeping and peaceful, so I wasn't panicked or anything. I asked Dr. Toth to test the pressure in my tubes earlier in the week and he said he would during the procedure. He said he would not open them if they were closed though because he no longer does that. That info came through Dawn and I never really asked why. Anyway, I remember asking about the tube pressure and Dr. Toth told me both were closed (dang infection!). I wanted to talk next steps and he told me we would talk tomorrow because I wouldn't remember anyway. He was probably right. It's one of those things where you think you feel fine, but you are really kind of slow and out of it. After the D&C, I had my two washes. I think I slept in and out for the first one. I believe it was after the first that my dh joined me.

He found the Demora.l to be effective, and the shot didn't hurt at all. However, the full feeling that followed the shot was to the point of pain. He quickly left my room for a place to lay down and stayed there an hr and 15 min moaning in the next room. So hard to hear him not feeling well. To his credit, he said he is glad we came to NY and are doing this. And he still says the swab is the worst of all of it.

After we were both ready to go, Dr. Toth's staff told us they could call us a cab or we could go across the street cattycorner and grab a bite for 30 minutes. We chose to grab a bite to eat. After that we checked in with them and were given the all clear to walk the less than a mile back to the apt.  I came back and slept two hrs since my goofiness chose to wake at 6am NY time-boo! Dh rested in the bedroom with the tv and I was glad we had a separate sleeping/tv quarters.

We caught a movie at 5pm at the 86th street theatre (the Butler-very good) and felt fine. We grabbed pizza and headed back to the apt for an early night. I really can't believe how good we feel. I only have slight spotting. The meds have definitely warn off, but not tylen.ol or anything needed. I would definitely still keep the day low key due to the demor.al. and the fact that you really do think you are fine on it when you really aren't 100%. I am just not interested in walking around the city that vulnerable.

That's it for today. Tomorrow I just have one wash. Friday, I have two and dh has Demora.l again with SV injections again. Saturday I have my last wash and we are done!

Our plan tomorrow is St. Patrick's Cathedral, Wall Street, maybe the Staten Island Ferry...good stuff!

New York Day 2 and 3 with IV

Sunday, Treatment Day 2:
Our third day in town was day 2 on the IV. We were excited to have an unexpected day off from treatment, not to mention one where we were feeling good. We didn't know what the future would bring and wanted to make the most of it. I had just spent some time writing and research some things we wanted to do tentatively and grouped them by location the day prior. Today, after mass at a close Catholic church, our plan was to go to Times Square and walk around. Our only firm objective was to check to out the red ticket booths in the center, as a friend had told us there were discounted shows. I am not a broadway show person, but Lion K.ing had caught my eye and I knew it would be fantastic and something dh and I would both really enjoy. After a great brunch at the diner down the street, we took the subway to Grand Central Station, transferred to the "S" shuttle and were transported to the madness of lights, huge tv screens, so many people that police had to stand with whistles directing traffic, and lots of characters in costumes. We were definitely in New York! We made our way to the ticket booths only to discover Lion K.ing and W.icked didn't participate in the discounted ticket shows. We were bummed since we thought it was a sure deal and we were super flexible on the days, which we thought would allow us to get tickets more cheaply. It also turned out those tickets were only same day tickets (makes sense, they were last minute tickets, hence the discount). We had seen the theatre that performs the Lion K.ing so we popped in there. Honestly, for as much as the show would cost, and as much as the trip was costing, I doubted it was an option. People were lined up for the 3pm matinee that would start in an hour. I tried to not get my hopes up in line. Guess what? They do discount for last minute shows, just not as part of the red ticket booths. We were able to have great seats in the back row center of the bottom floor for the 3pm show. I couldn't believe how it all fell into place, and was very grateful my dh was agreeable. It was a lovely early anniversary present and I can't say enough good things about the show. It was unbelievably good and the translation to stage was just so clever in every aspect!  All of the animals came in to the door at the end of our row, and Zazu's handler stood behind my seat and sang Circle of Life until his appearance toward the end of the song. Wow. Just wow!

We walked out of Minsk.off Theatre on Broadway and immediately saw Guy's America.n Kitchen and Bar (Guy Fieri from Diner's, Dive's, and Driv.e Ins) so we were able to grab a pretty good bite to eat by a chef we know from tv. Check that off the list for $16 each-the same cost as our breakfast so we figured that was a score! i am pretty sure I just floated home from there! We had already done more than I thought we would this trip.

We ended up skipping a free clean comedy show (Dark Lords of Comed.y) I had found playing free at the East River Park and just enjoyed being "home." Our goal this trip is to have our treatment, enjoy each other, see the city but in a relaxed manner.

The only symptom I had that night was pops on my right side. It was like pop rocks going on over there every so often, so I wasn't at all sure what that was all about!

Monday, Treatment Day 3:
This day I woke up less than refreshed, after doing some tossing and turning. It was less the IV bag and  more the queen size bed where I was pinned up against the wall by my dh :)

We started off the day calling the office to determine if dh should not eat anything (based on pain meds). He had valiu.m and vicadi.n on day 1 and was nervous that wasn't enough for the seminal vesicle injections. Dr Toth decided to have him take two vicadi.n and not do the vesicles until Wed. My appt was 11-1 for double washes, while dh got his injections (those were much shorter, but he does wait to do them about 30 min after taking meds). My audio tape was serving me well, both here and on the subway and I wish I had brought another. My small purse wasn't big enough for dh's book and one for me, so I was listening to my audio book a lot on the subway and burning through it. Dh did call out for the shots again, but it was less and he says when they are over they are over, unlike the initial swab which made him feel sore all day.

The number one lesson I learned this day was no coffee before treatments! I already have the smallest bladder known to man, and coffee only means I have to pee that much more frequently. So I peed before we left, peed when we got there, got wash number one and died the last ten minutes rather than going straight through with the second wash. Trying not to pee only seems like you are fighting the speculum, I could be wrong, but that was not a good feeling. i thought for sure I was going to pee in the basin below me, and though there would have been worse things, I tried to hold it--but not hold it---the last ten minutes. So I peed it, we began again, only to repeat the same scenario the last ten minutes of the second wash (dang bladder!). Not to mention my tail bone was not feeling so hot after laying there so long. But honestly, I was worried about doubling up washes, but I was fine. No cramps then or later.  I also had an ultrasound that day, which did show the white beading, which is a sign of calcification and infection. Dr. Toth determined I needed the light D&C (barely scraping the cervix to expose the infection being encapsulated to the washes), a typical part of full treatment.

 We ate lunch at the apt and took our first bus ride to the New York library and Bryant park in midtown. While we did enjoy seeing the city while traveling, we much preferred what felt like a faster pace on the subway. We also learned a NY lesson. Buses take metro cards just like the subway. But they don't have stations to fill the card inside or where you wait for the bus. Just in the subway station. And they sure don't take cash. The nice bus driver let us ride anyway. Silly non-new yorkers! :) Well, we realized we would be in the same boat at our transfer, so we repeated the same situation with the same result. We now know, without a doubt, this is the case on all buses. :) And that bus drivers are very nice people!

We walked through the NY Library for...wait for it...another bathroom for me and then arrived in time for our 5pm free summer movie series in the park. I was super excited for a showing of E.T. I thought the idea of a movie in the park was straight out of a movie, and the weather couldn't have been more beautiful. It was funny because 5pm was really just the time it opened. The actual showing wasn't until 8:15pm-oops! But once we had a seat (folded chairs beside the lawn that was open for blankets), one of us could come and go and bring in food, etc. By time it started, there were thousands of people with picnics and wine and it was really an incredible experience. Another theme was emerging from our time in NY-kindness of strangers. People were having to scoot through tight spaces and extremely apologetic, others accommodating without problem. The single girl next to us made friends with the guy and his dad to the right, and they shared food and wine. It was just unexpected. And very nice. The only symptom I really had was a little itchy on my arm under all the tape. I learned it got worse when I actually itched it. Also, I always get the funny taste in my mouth from the antibiotics. Water or gum seem to help. I should also add it was trash day on the street we walking down and we about jumped out of our skin at a rat, then a minute later two more that ran quickly from one trash can to the next. They were well fed and fast little suckers :)

New York Treatment Day 1

In an attempt to continue this blog as a resource people can refer back to, I thought I would chronicle our time here in New York for full treatment with Dr. Toth.

Where we stayed: We knew we didn't have to stay in the Upper East Side where Dr. Toth, but since we would be making daily trips there we decided it would be easiest if we could find something reasonable. We had several recommendations to try Airbnb and rent an apt. We had never done anything like that before, and aren't very adventurous in that area, but we found a great one we couldn't pass on. I would be happy to give you the exact info if you email me. It was under $200/night and no taxes. We liked it because it was in the UES (safer, cleaner, quieter, within a mile of Dr. Toth so save $ on daily public transportation). We interacted with a great person (Gina), but it was clear she represented a company and rented out five alts, so there was some comfort in that. We had internet, a/c, cable. We especially liked that there was a tv in the bedroom and the living room, both separated by a bedroom door, in case one of us wasn't feeling well. It was tastefully and simply decorated IMO, modern, and had all the conveniences we would expect. We thought the kitchen would also save us some money. It was a fourth floor walk up, which wasn't bad, for some that wouldn't work so I wanted to disclose. We stayed on teh UES closes to the river, while Dr. Toth's office was just less than 1 mile away on the UES right by Central Park.

 Okay, this wasn't our apt, but it was the neighborhood. I took this pic on our walk to the or from the office. Nice, right? New York was not what I expected. There was more green, less people (in the UES), people were incredibly nice.

They had to get creative incorporating the greenery. I loved this.

 Okay, here's our apt. I didn't think to take pics while it was clean. Oops. Here is the kitchen view. It had everything we needed.

Here's a view straight into the bathroom, which was decently sized. If you stood in the bathroom, you'd see a good view of the living room (basically two futons facing each other) and then a door that led to the bedroom. 

We weren't familiar with NY in general, but we are getting it down. New York City has five boroughs, one of which is Manhattan island (the rest being Bronx, Brooklyn, Queens, and Staten Island).  Manhattan is divided in between the blue area.

How many days? I felt like this was something not adequately addressed previously. Full treatment is 10 days. However, they do work on weekends from what I understood, but now that I am here I know they don't work on Sundays and don't typically do first appts on Saturdays, though they were willing and able to make that work. And I learned they could double up my treatments as needed, so I will let you know how all that feels. Plus we can go home with IVs and ship them back (but the amount of days of the IV don't seem to be flexible), but that will involve dh to go to work at the office with the IV the last day. We were told we could arrive with our luggage, as well as bring them the last day and go straight to the airport. That is helpful, as Dr. Toth's is close to the 77th and Lexington subway station.

Day 1, arrival: 
We decided to come in late Friday (from our state, we still had to cut out of work early on Friday) and arrived after 11pm at LaGuardia. Dh was a smartie, knowing we would be in so late, he booked us a Marriott by the airport for the first night and we took the hotel shuttle from the airport. He actually ordered us a Marriott visa, where we got one free night just by signing up so we used that. The hotel was Springhill Suites Marriott. It was opened in Dec 2012, so very new and nice. The actual city was Corona, NY.  We pretty much arrived and went to sleep.

Day 2, first appt with Dr. Toth, treatment day 1 (from here on out I will count treatment days as number of days the IV is in, otherwise it gets too confusing):
Since our airbnb was pretty much a company, we were able to get a weekend check in, but not an early one. After our free breakfast, we hopped on the shuttle to the 111th train station and made just one or two transfers to 77th and Lexington. hopstop.com is a great website where you can put in the address to and from and get which subway train or bus to take, or taxi time and est amount. it really helped us navigate easily since we aren't public transportation savvy. It was easy and not at all intimidating.

We arrived in an hr straight to the office with luggage for our 10am appt. Dawn greeted us, as did Dr. Toth. He is such a warm and funny man and does everything to put you at ease. We had been to the office before, in 2008 when I was pregnant, for testing but not treatment so this wasn't our first appt. Dr. Toth was clear, in a nice way, I was only allowed to give him one line responses to get my chart more up to date. I had to chuckle. It's not surprising I got a reputation as a talker ;)

After we completed the history, dh and I went to separate rooms. We had requested valium for him given his extreme anxiety. He also got some pain meds too (hydrocodone and acedimenaphen). He went to the lobby for it to kick in, while I got cultures done. One thing is I was never told to schedule the appt at any particular time in my cycle, so I came mid cycle and had a lot of mucus. I hope they don't have trouble getting an appropriate sample. Following that, I had my IV put in (mid line like I was used to/preferred though I didn't love the inside elbow, with lots of tegraderm so no need to wrap in the shower like what I had at home; I was worried they don't numb it, but it was totally fine), and then they started the wash. I was really surprised Dr. Toth asked what he should test me for and same for dh. I wanted to say, everything! But we narrowed it down. He ended up expanding beyond CT (dh's hx, testing both of us for) and mycoplasma (my hx, testing me only) to adding aerobes and anaerobes for me as well. I was nervous about the catheter. To my knowledge I haven't had one, but I didn't really notice it. I had downloaded an audio book (Dad is Fat-Jim Gaffigan) and I laughed so hard I shook and was afraid I would knock something out. Too funny. I did not cramp during the lavage at all. She said some people cramp when she puts in the flagyl, but either she forgot it or I didn't because I didn't notice anything. I want to ask her about that on Monday.

Dh was not having such fun. He had the dreaded swab, which was as awful as ever. I heard him call out in pain from the other room, which was really hard to hear. They placed the IV which dh felt (from a first time view point) was relatively easy with mild discomfort.  Next he had the prostate injections (each of the five days worth are actually two shots, one on each side). The first injection was painful and he called out, but it was not as painful as the swab, which most men have experienced. I thought that was important to share to put it in perspective. The second injection was not near as painful, so I hope that is the sign of times to come. I know everyone is different, of course. A friend's dh had nothing beyond advil the entire time and some don't even take that I suppose.

Dh came and joined me in my room at that point, standing the whole time. She said it might be uncomfortable for him to sit, but it wasn't because of the shot, but rather the fullness sensation because Dr. Toth filled him with flagyl.  I did not cramp during the lavage at all. She said some people cramp when she puts in the flagyl, but either she forgot it or I didn't because I didn't notice anything. I want to ask her about that on Monday. One last piece of info, we were told no more than one drink a day. Not a huge deal, but something we didn't know about in advance. Also, it was then we learned they don't do appts on Sunday and to return Monday at 11am.

So that was it. It flew so fast we have a few questions that remain, but we will be back so no harm. We left the appt and went to our apt to check in. That went off without a hitch. By then we were overdue for lunch. We went cheap and easy at the diner down the street. After that we walked to Central Park with books and just sat and enjoyed the amazing 80 degree weather in August. We people watched, listened to live music and people having their portrait done, and read. We got to know our surroundings a bit, finding the local Catholic church and grocery store. We were able to get some stuff for lunch (sandwich stuff, yogurt, grapes, chips) and breakfast (eggs, milk, coffee creamer). I had already brought coffee and protein bars so we were pretty set. We had an American Bistro, East End Diner, down the street that had out of this world mushroom chicken spiedini, though a bit of a splurge. We went home and relaxed after a nice day fat and happy. Dh remained sore from the swab the rest of the day. My IV itched and was sore off and on. I started to develop the gross taste in my mouth, but other than that, all was well and we felt pretty fortunate.

I can't wait to tell you how we took advantage of our day off so stay tuned...