Mesh Removal UCLA & Travelling Home

Between answering emails and comments from my blog since I came home and of course trying to get well from my mesh removal surgery, I have not been able to write everything that can help you get through your own mesh removal experience.  I do know many women follow this blog and they too will be travelling out to UCLA soon and they want to know more. This morning I received a set of questions that need answers and they were well written.  These are the questions.

1.      How soon after the surgery did they fly home?

2.      How long would they recommend one wait before flying home?

3.      With catheter what were the challenges?

4.      Without a catheter how did they manage incontinence problems in plane?

5.      Did they wear a long skirt or could you wear loose sweat pants?

6.      Did they have bleeding issues as well?

7.      Is an airline bathroom adequate enough for disposal of sanitary items?

8.      How did they manage sitting that long?

9.      Were they given adequate pain medications?

10.   What did they do to prevent blood clots in legs?

Please understand that we are all flying from every direction and length of time the trip will take will vary.  Also take on board each of our own mesh removal journeys are different.  By that I mean the type of sling removed, how many pieces of mesh are removed and how much damage was done in prior partial mesh removal surgeries.  I can tell you this.  I had one sling only.  You should also know that mine was caught up in the nerves and bladder causing me to have a lot of pain and difficulty walk.  Take the wheelchair if you have any issues.  I wrote about the way you do this and the expenses after I came back from my first consultation.  This blog will take you where you need to go.

http://meshangels.com/2012/09/mesh-going-to-ucla

Now to answer questions.

#1.  I left for UCLA the Monday before my removal surgery the following Thursday.  I gave one extra day before surgery in case of any plane delays.  This was because when flying home from consult, the weather was bad with all planes were grounded and we had to stay overnight in Dallas.  If you are late for tests the day before they will CANCEL your surgery.  They will not do it without those tests, so spend one more night before to be on the safe side.  So because there ere no delays, we had a day free on Tuesday, tests were done Wednesday, then surgery Thursday.  This is standard for most people.  Had we had a flight delay, I would still have been there in time for tests.

My daughter asked me how long did I think I needed to stay after surgery.  I had no clue, but gave myself until the following Monday before I flew home.  However, we could have came home a day or two sooner and I don’t think it would have made any difference.  I know that now of course.  Changing our flights would have been costly, so we hung in.  In other words you will have to guess, make a decision and then pull something out of a hat.

#2.  I think I answered that in #1.

#3.  Yes, the beloved catheter.  Gosh how I have a hate relationship with them.  They are the most uncomfortable gadgets ever made especially as our vaginas are compromised by removal.  It is bloody painful to say the least.  But if removed too soon, the swelling can cause you not to be able to go, so Dr. Raz recommends one week and he shows you what to do to remove it after you get home.  It was easy.  He did tell me if I had any problems and cannot go, I should go to my doctor or an emergency room and have it put back in for another 5 days.  Then see how it goes.  Now the two women who are driving back to their homes after removal last Thursday are staying in the UCLA area longer because of family.  If you have followed my diary since I got back home, you will know my catheter removing fears.  Fortunately I have done okay.   These two ladies are going to be seen by Dr. Raz this coming Wednesday to have theirs removed and they had surgery last Thursday.  One week.  That’s the easy way to do it, but if you are like me, trying to save costs, you can do it at home.  I know many women who have done it at home and all have been okay.

#4.  I can’t answer that of course, but I can share with you my terribly embarrassing situation when flying home.  Had I know it would happen, I would have bought the right product before leaving UCLA.  We flew from L.A to Salt Lake City, where we changed planes to come home to Houston.  I was highly uncomfortable on the ride to that city and the catheter was driving me crazy.  You should know I was wearing an extra heavy pad because of the bleeding but it was not enough for this problem.  I tried to change position but as always there is not enough room to move around so I stayed where I was.  I was sitting on a memory foam pillow with a black pillow case on it that I had taken to help with comfort.   I was wearing a loose long black skirt.  I am so grateful I was.  When I stood up to get off the plane I had leaked around the catheter and the pad did not catch it all and I could see it on the pillow.  I was horrified and felt so embarrassed, I grabbed up the pillow and hoped my skirt was not a tell tale sign that I had pee’d myself.   I told my daughter I had to go to the restroom and fortunately they had a baby changing room that I went in and locked the door.  I spent time cleaning my skirt and pillow and then myself.  I was so afraid it would happen again I used layers of their paper towels in my underwear as well as two pads.  Uncomfortable but I had to do something.   It was a horrible ordeal, one I am so embarrassed about but I do not want it to happen to you.  Hence, my embarrassment could be your savior.  I took quite a bit of time to do all this and by the time I returned to my daughter she looked at my tear stained face with worry.  I told her I was okay and she went to get us something to eat and drink while I composed myself.   So the gist of it is, had I known, I would have bought incontinence underwear and not relied on a pad.  But what was strange about the ride from Salt Lake City to Houston, it did not happen again.  Obviously it was the position I was sitting in.

#5.  I answered that I wore a long black skirt.  It was made of a fabric that did not show my ‘accident’ and dried quickly after I washed it off.  Other women told me they  have worn track suit pants.

#6.  You will have bleeding and for me it was like the beginning of a period.  (been a long time but I do remember)   Heavy enough that I changed several times a day to feel clean.  It almost stopped by the day after I go home, and then it was watery.  That lasted only a couple of days.  None since.

#7.  I have flown hundreds of times in my life.  They always have disposals for sanitary towels on the planes.

#8.  You don’t manage sitting that long at all.  You jut don’t have a choice.  To get through it, I reminded myself that I could either do this once or I could have partial mesh removal after partial mesh removal and be living in fear of having yet another surgery.  I know this has happened to many women.  So I told myself to suck it up and go with the flow.  I am not the only one who had to do this, many have gone before me.  It would be so much easier if I could have had it done in Houston, but I have heard from Houston women and no surgeon does full mesh removal.  I wanted my life back on track and made the choice to go to UCLA.  No one can do that for you.

#9.  Yes, they do give you adequate pain meds.  You fill the prescriptions downstairs in the same building.  My daughter did it.  I was given antibiotics, high dose Ibuprofen and a heavy pain med.  I took Ibuprofen during the journey but nothing else.  I have not needed any pain meds since I left the hospital.    You may be different.  I did not want to take any meds I did not need and began my supplement plan one again as soon as I got out of the hospital.  I want to get well!

#10.  They did nothing in particular and I was a bit concerned of course, but my BP has been great since I began taking a high dose B-12 supplement (5000 mg) quite some time ago and I was not particularly worried, even though I am sixty-five.      You can buy elastic stockings for travel if you are at all concerned.  They sell them at good drug stores.

I hope this helps many women because these questions were valid and well written.  Even sharing my embarrassment is worth it to me if I spare you the same.  If you travelled home and know something else that could happen because it happened to you, please share it in the comments.   This blog has always been about helping other women and women helping
women.

20 Comments

  1. SojournerPA

    Thank you Linda for answering my questions. My flight (without delays or complications) will be 6 hours, then 1 hour drive home from airport. I have been debating whether it would be easier to stay in LA until catheter is removed and the bleeding has stopped or is at least minimal. That would leave dealing with the incontinence problem and sitiing discomfort. Depends sounds like the best undergarment to get. I imagine it would handle the bleeding, as well as, the urine leakage. Or perhaps place a sanitary or Poise napkin inside the Depends that way you can more easily dispose of the smaller napkin and retain the Depends as added back-up if it does not get wet. I have never had to use them, so I am guessing here. Since sitting will be uncomfortable, an aisle seat is probably best so one can get up and move around from time to time and also to avoid the deep vein thrombosis issue. I like your idea about getting the compression stockings and sitting on a pillow. Packing personal wipes for oneself and disinfectant wipes for the bathroom is probably a good idea. So much to consider. I’ll have to look into a convenient bag for the onboard necessities. I am a novice at flying, can you tell? 🙂 Thank you for sharing such personal stories about your experiences. To better days ahead!

    Reply
    1. lavalinda

      A lady told me these products are the best. She said they do not bunch and there is less fear of leakage. http://www.tenatwist.com Adding a napkin inside seams like the best idea. You can change it more often and that will make you feel better and fresher. You know how we women feel about that. I was in an isle seat every time and it is definately better. Yes and I too carried unscented baby wipes in a zip lock bag and used them. Wal-Mart has unscented at a decent price but the package is thick, so I pulled out piles of them to go into a baggie and that took up far less space. I have been using them after bowel movements as well to avoid even the slightest chance of infection. If he has to rebuild your urethra, you must take extra care.

      Reply
  2. Judy Burnett

    I am just checking in, found your blog just before you went for your surgery, so happy all went well and you are doing so good so soon. Can you tell me, Where do I find the name of the test to see if you have mesh in you. I read so much that first night but didn’t book mark that spot. I live in SLC, UT and my bladder repair doc is long gone, can’t even remember his name, was 20 yrs ago so no records, have to start from scratch. I’m 68 so I need to get started ASAP. Judging by all the symptoms of the different women, it is beginning to look more and more like mesh to me but I need to find out for sure. We have excellent healthcare here so they may be able to do the test here once I rediscover the name of it.
    For so many years I have suffered and never had a clue there might have been a foreign substance in my body that was causing all my problems. Thanks again for every thing you are doing for so many women. Judy

    Reply
  3. Judy Burnett

    Just found the name of the test. Jumped the gun a bit, wanted to say hi and give you my well wishes, should have looked at the website more carefully before asking a dumb question. Now wondering if they can really do the test here or not, oh well, will check and let you know what I find out. Judy

    Reply
  4. lavalinda

    I hope you do find the answer to your health issues and you will be able to get help. I asked Dr. Raz while I was in hospital was it possible to help women with long term mesh and he said yes. He did help a woman who had it for twelve years and removed it after he found it had strangled her urethra. I think he will be the answer to your prayers. Be careful. Many women with long term mesh are opened up by a surgeon and when they cannot find the mesh, they close them up and send them home. The translabial ultrsound as far as I know now, is only used at UCLA. Many women have asked at their own hospitals and doctors offices but not one has come back with saying they have it. Don’t go through a surgery unless they know what they are doing. You will need another if you do this and I do not want you to continue to suffer.

    Reply
  5. teresa hughes

    Dear Linda

    I am so glad that your surgery went well. Your blog about travelling to and from UCLA and the needs of what to take with you are amazing.

    You are such a kind and generous person to do what you do to help so many women even through your own suffering.

    Take care.

    Teresa

    Reply
  6. Leslie

    Thank you, Linda, for the helpful information. Does anyone know if the catheter is needed for everyone? I think traveling with a catheter would be really difficult. Maybe I will just plan to stay in L.A. for a week. I will be missing my granddaughter’s birthday on the 4th of Dec, but I will do everything in my power to make this trip less stressful. I guess my granddaughter will just have to have two bd celebrations this year! I am sure she won’t mind that! Lol

    Reply
    1. lavalinda

      Yes everyone does have a catheter for a week. If you stay until the following Thursday, you can have it removed by Dr. Raz on the Wednesday. It is all part of the service.

      Reply
  7. Tiredofthefevers

    Linda,

    I have read (and reread) your traveling notes. Very informative. Do you know what shuttles run from LAX to UCLA? I recall in another post that the cost was $16. I wondered if this was something you needed to schedule in advance?

    I am headed to UCLA for testing 2/4 and surgery 2/8. I had thought of driving out but am concerned about driving home after surgery (obviously after some time had passed). Was there a restriction put on you (or anyone that has had this done) for driving? Can you drive with a catheter in place for about 4 hours? I am a very independent person and don’t want to rely on anyone (planes and shuttles included) but don’t want to chance messing up my recovery. I have a place to stay in CA but plan to stay at the Tiverton the night before my testing. Any thoughts or comments, please share. Thank you!

    Reply
    1. lavalinda

      You do not have to book the shuttle when you get there because they run all the time and will pick you up outside the door of the airport. The cost was $16 each way. Going home, tell the hotel the night before just in case they have a head count for pick up. I was not told not to drive, but I could not anyway due to the nerve injury in my right leg. It is still difficult but I did try the other day and I can but not long. I really am not sure you will be well enough to drive alone. Like you say, after some time has passed, maybe. If you stay there a week, Dr. Raz will remove the catheter and that will be one concern out the way. This is the blog that will give you other points. http://teapapers.com/bladdersling/2012/06/mesh-dr-raz-u-c-l-a

      Reply
    2. Angels123

      Hi…I recall there being something in the paperwork about them requiring you to have a ride home from surgery. I don’t think they want you driving right after surgery and frankly I don’t think you will want to either. Just plan to call a cab or a shuttle if you are still on campus.

      Reply
  8. Paula

    Linda,

    What did you do with the catheter while traveling? Was it exposed or is there some sort of tote for it? UGH!

    Paula 🙂

    Reply
    1. Angels123

      Paula,
      If you are in the area for a few days you may be able to just have Dr. Raz remove it before you leave. If not they give you a leg bag that wraps around your thigh and just goes under your pants. No one even knows you have a catheter. I went out several times with it and it was no big deal. Good luck! It will all be worth it!

      Reply
  9. lavalinda

    Angels 123 is right. I wrote a blog about travelling home and I wore a long skirt to hide it and feel as comfortable as possibe while travelling. I removed it myself one week from surgery. You simply cut the tub and it lets the air out of the ball that is up inside you. Then you pull it out slowly and gently. It does not hurt. If you want to stay in the area the surgeon who does the surgery will remove it one week later before you travel home. My surgery was on a Thursday and Dr. Raz would have removed it the following Wednesday. I however travelled home on the Monday before that.

    Reply
  10. Carmel Berry

    Hi Linda,
    I dont understand why there is only one person in the US that can perform a translabial ultrasound. I had one last year and the place I went to was the same place that all the local pregnant mums go to to get their baby ultrasounds. The only difference that I could see is that the technology is now much better (than when I was pregnant 16 years ago)… the image is in colour and in 3D. The ‘wand’ or ‘paddle’ is the same and they also have a vaginal thing that they put a condom on so they could look from inside the vagina as well. The mesh was visible on the screen and they saved pictures for the surgeon. Surely there are more than one of these machines in the US… ??

    Reply
    1. lavalinda

      Yes I know Carmel but it is nothing more that deciding not to put in the test at these other offices and that it is not neccessary. The reason is of course is that they will not admit it is mesh complications and even when some women have said “It’s hanging out of me. How could it NOT be the mesh?” they are ignored. It is downright disgusting that they are doing this to women. Yes, at UCLA they give you the copies of the pictures they take and they explain what is happening. A whole different ballgame of care. The machines are everywhere and all they have to do is spend money on the two wands. They won’t. Your point is well taken and it is mine too. The Canadian women are aguing for it in their country too and they have to go to UCLA to get it done. No doctor up there wants to say that mesh is the problem. We injured women all know that MESH IS THE PROBLEM.

      Reply
  11. Becky

    Did it work? Do you have leg and groin pain anymore? How about frequency?

    Reply
    1. lavalinda

      Becky I have permanent nerve damage which was far worse before it was removed. My life is ten times better than what it was. I know other women whose nerve damage was not as bad and they recovered in time without nerve issues. Yes it definitely worked and all I can tell you is that every woman’s case is different. First you need to know what type of mesh and surgery you had. I know from listening to hundreds of women that Dr. Raz is the best man for the worst case.

      Reply
  12. Kathy Kral

    Linda,

    Just wanted to let you know how helpful your blog is! I had my surgery on 10/31 by Dr. Raz, thanks to you, and I followed all of your instructions and had no problems at all. You are and have been such a great help to women who have gotten these defective slings and doctors that tell them “It’s all in your head,” when you have problems after the sling is put in! Dr. Raz is the most compassionate doctor and he truly cares! Thank you so much for all of your help!!

    I do have 1 question for you. I just got my catheter out on Friday, 11/7/2014, today is 11/9/2014 and I was wondering if it is normal to have no control for a few days after the catheter is out? I’m starting to feel like I have to go to the restroom and I go as soon as I feel that now, but unfortunately as soon as I stand up it starts to flow. I am going back to Dr. Raz to have the reconstructive surgery, but of course that’s not for about 6 months and I’m hoping I don’t have to live like this until then. Some people are saying maybe it takes a few days to get control again but I was wondering if you, or you know someone who had this problem after the catheter was removed. Thank you again for all of your posts and I’m so glad to see you’re still doing the blog. You’re a Godsend!!
    Thank you, Kathy Kral
    I would appreciate any feedback you can give me. We should be paying you for the great advice and information you give many of us!!

    Reply
    1. lavalinda

      Kathy I am so glad this blog helped you. Many women have incontinence when they first remove the catheter because the bladder spasms, but most slowly do better as things settle down. However if the urethra was damaged by mesh it may not improve. Only time will tell but you can get the fascia sling done in 4 to 6 months after you heal from this surgery. There are drugs that will help but there are also natural things. You may want to look into this. http://www.healthandayurveda.blogspot.com/2007/06/home-remedies_05.html

      Reply

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