My Fascia Sling Surgery Part Ten

Life’s lessons learned…………..

When I am in trouble I am like everyone else. I get so upset I cannot see the wood for the trees and I don’t know where to turn to get the help I need. When I find myself in this position, I know it is time to stop, watch a movie or an English show on Netflix and clear my mind. Once calm I remember things and I can tackle the problem once again.

That is exactly what happened to me this past few days. If you followed this blog my last fascia surgery report to you was May 17th, last Friday. It seems a lifetime ago but it is only a week. But during that week I have struggled through a health crisis and have had to fight to get better. I’m not better yet, but I am on my way.

I did tell you that I had gone to a new urologist for the first time last Thursday. Another culture was taken and it would not be back until Monday. I was sue this woman would help me because she seemed kind and caring. But the life lesson I have learned is, don’t bank on it. I waited until noon Monday for a call about the culture. I knew of course the infection was still there because it suddenly worsened and I could barely walk across the floor without severe pain in my lower pelvic area. My bladder was obviously inflamed. I was getting worried again, so I made the call to this doctor’s nurse. I told her how I was feeling and asked what the culture revealed. She said it was still there ‘duh..’ and the doctor was waiting for a call from Dr. Kim’s ‘partner’ to decide what my treatment would be. She did not mention Dr. Raz’s name so I wondered about this. I was surprised at this, because I had already discussed Dr. Kim’s gentomicin treatment with her and she agreed I could do it at home. So I expected her to write the prescription and get the ball rolling once the culture came back positive.

After that call I went to work to find a pharmacy close enough to us, so that I could give that information to this doctor when she called me. My daughter is sick of constant road trips and I wanted to take as much of the strain off of her and do some of the leg work from my bed. Bed it the only place I can sit/lay right now because the catheter is so uncomfortable and the infection has heightened this fact. So I lay/sit and have a pile of pillows on top of my stomach /pelvic area and have my laptop on top of them. Not the best conditions for typing but I go nuts doing nothing. So I made several phone calls to find the product I needed to get the treatment started. I had Dr. Kim’s email and knew exactly the dosage require. I did not think it would be that hard to find.

Another life lesson learned. It was hard. Normal pharmacies came up empty. Wal-Mart and others nothing. Walgreens nothing, but I asked the pharmacist if he had any idea where I could find it because I had run through everyone. He gave me the name of a small independent pharmacist which I later learned is a compound pharmacist. This is important information to learn because they can get and mix things no one else can. I felt frustrated by this time but I kept going. I spoke directly to the pharmacist and he said no they did not have it. I wanted to cry. But I asked him how I could find it. He suggested I call the local hospital pharmacy. I did not even know they had a public pharmacy. Turns out they don’t, but a nice lady listened to my story and told me who was authorized to buy from them. Guess what? It was the same compound pharmacy. I called them back and he then said he could order it after I told him the hospital said they were the authorized pharmacy to buy it from them. He admitted they definitely could. Why did this happen? Well it turns out gentomicin is not easy to obtain and not used constantly by doctors, so pharmacists do not buy it in wholesale. They have to buy a lot to get a good price, but they can order anything for you if they are set up with a hospital. Not every pharmacy is. So my life lesson learned that day was keep plugging away until you get the right answer. If you don’t you may not get well.

I was done for the day and waiting for a call from my urologist with peace of mind because I had the right information to give her that would save my daughter time and energy. That call never came. I made yet another call before the office closed and spoke to her nurse once again. I told her I was in pain but I had located the medicine I needed. The nurse did not seem concerned and said the doctor was waiting on a call from UCLA. I reiterated that Dr. Kim was out of the office, but Dr Raz would speak to this doctor. I did not get any response. I told her that the only thing I was taking was the antibiotic by mouth that she had given me the prescription for and it clearly was not working. It fell on deaf ears. Life lesson learned. Get some sleep and get back at it the next day.

I did not sleep well that night because of bladder pain, so when I got up Tuesday morning I knew I needed to do something. But what? I decided the first thing I really needed to do was find a new PCP. PCP means Primary Care Physician. G.P in many countries or General Practitioner. I also needed to get home health care, because ridding in a car with a badly irritated bladder with a catheter was becoming agonizing. Every bump painful. The bladder pain was making me feel tearful and I knew that would be a problem when speaking over the phone, but I had to get help. I hate to be tearful over the phone or in a doctor’s office because it is assumed you are unstable and depressed. Hell what we go through is enough to cause anyone depression. However I am not.

I have the most amazing group of mesh women friends. None of us live near each other but we reach out and send the warmest and most fuzzy hugs along with helpful information. One lady who suffers greatly and is not sure she will ever be able to have the mesh removed due to other medical conditions, told me to keep pressing to get the home health care I needed. I had been beaten down by my old PCP who decided if you could walk (maybe crawl) into his office, you did not need it. So I searched through Dr. Google and found a Texas based Home Health company. I made the first call. A very nice lady listened to me for the first time. She was very sympathetic and told me how the system worked. You had to have a doctor sign you up. She said they did not go out to my area but she gave me the number of another company that did. I called and left a message with their nurses’ office to call me when they had time. Two hours passed and nothing happened. Bladder pain made me redial. The lady apologized that no one had returned my call and after listening to me she said I was in the wrong office for my area and gave me another number of one that would deal with where I lived. I was beginning to feel quiet teary again but I made that call. A very nice lady listened to me once again but she explained that there was nothing she could do because a doctor had to refer me. I hung up, lay here and cried.

I truly wanted to give up but the bladder pain made me scared. I lay here for awhile to calm down and then it came to me. One of my angel helpers told me when you can’t find a doctor to help you, call a nurse practitioner. She has been through many doctors in her time to get the help she needed, so I decided to run with it. I searched Dr. Google again and two came up in my area. Simply put in Google the town you live in or are close by and nurse practitioner and you will find them. A wonderful life lesson learned. What would I do without my network of mesh injured friends?

One of the N.P’s was located in the same clinic building as the PCP I was using. I actually thought when I dialed the number I was wasting my time because how would someone there help me. After all they were in the same place. A huge life lesson learned that day. Don’t put all medical personnel in the same box. Was I in for a surprise? She answered the phone on the first try and she listened to me. I was blubbering away and was so afraid she would think I was a nut. I went over all I could and told her I had to find a new PCP but did not know how. She told me she would help me but give her time and she would call me back later in the day. I had hope at last!

I did not expect her to call until later that afternoon, but she called me back within a couple of hours. She told me she had asked questions and found two that were kind and compassionate. One a man and one a woman. Well, I chose the woman. Right then I could not deal with another man belonging to the same ‘good old boys’ network in the same building. He may not be anything like it, but that is how I felt right at that moment. I had to take a chance on the woman. I called her office and had an appointment for 9 am the next morning. I could have gone in that day and they would have fitted me in, but I was afraid of a long wait sitting on a waiting room chair. I was not sure I could handle it.

Not only did the NP do this leg work for me but she also went to the woman doctor and her staff and gave them an idea of my case and the help I needed. Had she been in the same room I would have given her a bear hug. I was that grateful. I wanted a T-Shirt to wear with a huge sign “Nurses are the best”.

I still had another thing to do. This same nurse had called the new urologist and left a message. I finally got a call that afternoon from the doctor herself. Her voice seemed cold when I told her how much pain I was in and that I had emailed Dr. Raz to ask him to talk to her to get me the help I needed. I told her I was on the verge of going to the ER but knew it would only be a band aid and there was a 3 day holiday weekend coming up, so I needed to get this medicine quickly. I told her I had located a pharmacy that would dispense it but I needed her help. Her answer was not the one I expected. She told me she could not do anything until she heard from Dr. Kim’s partner and I should go to the ER. I was stunned.

I was in tears when I spoke to her because I was frustrated and desperate. I emailed Dr. Raz and begged him to talk to her so that she would give me help. He told me that I should not be in pain and I should be hospitalized and watched. How was I going to get any help when no doctor wanted to do anything. A trip to the ER would amount to a one time dose of antibiotics and I would be made ‘comfortable’. Then I would be sent home and told to go to my doctor. I would be staring at a long weekend with no medical help and this infection could get out into my bloodstream. I could not just give up but I was so worn down. I didn’t have the strength to do any more that day. However I had to face facts. The new urologist was not going to treat me and wanted to get rid of me. How do they do that? Make it hard for you to get help and you will leave them. But I had no clue who to go to and I needed a urologist while in this situation.

I turned to yet another mesh injured woman who lives in Houston and has trekked her way through 18 doctors before she wound up at UCLA. She answered my call. I gave her the name of this urologist and she said “OMG, don’t go to her”. Then she gave me yet another name of a new urologist. I called and have an appointment for next Thursday. Am I afraid to do this all over again? Yes I am, but I do not have an alternative.

I want to tell you how wonderful Dr. Raz was. He answered emails and kept up with me all day that day. Who else would do this? He was kind and very caring and I so wished I lived nearer to UCLA. But I don’t and I have to work harder to find a good urologist. Surely this one will be. He will be my third in less than a month. That may make me look like a difficult patient, but I’m not. I want a caring urologist close to home. I don’t want to battle to get the help I need. I don’t have that much strength left.

I had another fitful and painful night that night but I was at the doctor’s office early ready to get the help I needed. I did not wait for long before I was placed into a room and a nurse did the triage. I knew my BP would be up some, but it was not too bad. I’d had a lot of frustrations and was very nervous and it always goes up when I am like that. The doctor walked in and I liked her direct stare with bright shiny eyes and a very nice smile. She was immediately friendly and assured me she was going to help me. She said she would not let me go home until the care I needed was set in place. I could not believe it. She did a general examination and asked me questions pertinent to my surgeries and care. I liked her. I never felt conflict at all as I had with my old PCP. I felt he did not like me, but I suffered through to get my surgery pre tests done, thinking that after surgery and when I was well I would seek a new one. That of course did not happen. I’m still trying to get well.

I did not know that while in the doctors examining room, the wheels were turning behind the scenes. I had given the doctor Dr. Kim’s instructions and the pharmacy information where to obtain the medicine. They ran with it. True to her word, this doctor never let me leave before everything was set up and she explained the process to me. I was in awe of how good medicine was supposed to work and I was very grateful. I told her I appreciated her kindness. She looked at me and smiled and I knew she was a little taken aback by this. She had no idea how hard it was to find kindness in doctors. I did not either unless I went through bladder sling surgery.

I left her office an hour later with so much hope in my heart. The pain was in my bladder but I wanted to sing. My daughter saw my face and she smiled and said “Thank God” when I told her I would at last be getting the help I so badly needed.

The doctor told me I would hear from the Home Health agency before the end of the day, but if I did not, I should call her office first thing in the morning. I heard from them at 4 pm that afternoon. The tides had turned. Help was coming. The next morning I woke with a better feeling. I had had more broken sleep and was up half of the night, so I slept in for a bit. The phone rang soon after I got up and it was the agency. The nurse asked if I had the medicine and I did. My daughter had made another road trip the afternoon before to get it for me. The nurse was going to be here early afternoon. No sooner than I hung up the phone, than the doctor’s office called. A nurse wanted to know if the home health had called. The doctor wanted to make sure I was going to get the care I needed. Wow! What a doctor! Another life lesson learned. Go with your gut if you think there is a problem with any doctor. They won’t always like you or you like them. Change and get one who you can work with.

The next day, yesterday I met another great and compassionate nurse from the Home Health care agency. These agencies are all over the country and all you have to do is find the right doctor to get you the help you need. This is the agency I am dealing with, https://txhha2.sslcert35.com/index.php?page=1 It was the one assigned by my PCP. My helpful and very caring nurse did the first treatment and we went over everything. I can’t believe I am being listened to and cared for. They will come for a few days and teach my daughter how to do the bladder irrigation. Then we will be able to handle things before I see the new urologist next week. I hope that a full week’s treatment will bring a big change to this serious infection. The other thing this nurse mentioned was my catheter. She asked how long this one had been in my. I had just begun the 4th week. My new doctor also mentioned it should not be in any more than 4 weeks and it should be changed. This nurse looked at it and said she felt it should be changed now and she would consult my doctor.

This nurse also told me she was caring for another mesh injured woman at home and she would share information with her where she could get it removed. She went on to say she had hernia mesh patients. It is very sad to know so many people suffer from these implant products.

So I learned many life lessons this week and I hope my difficult and painful week’s lessons will make your journey easier. My journey will continue……………

 

2 Comments

  1. Lynn

    Wow, Linda, you have been through hell with these doctors. It DEFINITELY pays to be persistent in the face of incompetence. It’s hard to do when you aren’t feeling well. You are a very inspiring woman! My mother-in-law, Meri Lou, who you’ve spoken to, has had 2 ultrasounds and a CT scan in Houston, which Dr. Raz ordered. He doesn’t see the mesh on her bowel and suggested she go to a local surgeon, so she is now going to a local general surgeon for consult, someone she’s gone to before. I would love to get the name of the wonderful urologist for her in case she needs it in the future. She has a male urologist who’s watching a kidney “spot” that isn’t growing, but she might appreciate a female doctor too. I hope you are doing better this Memorial Day!

    Reply
  2. SojournerPA

    Linda, this is simply too much for anyone to have to go through to have their symptoms taken seriously and to get treatment. You are a role model for sticking to your guns and pushing until you get the doctor and treatment you need. I hope this is the beginning of a turn-around for you. Enough is enough already right? I think of you everyday and now include your daughter in my thoughts and prayers. Keep strong and feel better soon! One more thought – would you be able to be assigned a case manager from Medicare?

    Reply

Leave a Comment

Your email address will not be published. Required fields are marked *