Yesterday when I finished the blog about a young woman who died I felt so sad for her loss and for her young family. Every time I write a blog I am aware of the impact it will have and my goal is to give women the tools they need to stay as healthy as possible both before and after mesh removal. I know the things that need to be written because I have lived some of them and have spoken to many women to learn more. I never stop learning and neither should you because your life is at stake.
A year ago I was in a panic. I had had a surgery for fascia sling last April and a lot of scar tissue was removed when it was found during this surgery that my bladder was fused to my pelvic bone. I did not know this until after the mesh was removed six months earlier, it was found that my urethra was badly damaged by mesh cutting through. I knew something was wrong the closer it got to my removal date because it felt like my vagina was on fire. The mesh was burning its way through my urethra and had my surgery been even a month later I probably would have been living in severe pain far worse than I already was. My surgery came in just the nick of time. I had waited a long 2 years and 7 months to have it removed, because I had gone through all the money I had and I was waiting for Medicare to begin. By the time it was removed it had taken a big toll on my body.
Six months after removal I had the fascia surgery done because I was an uncorked bottle, because of urethra damage. I could not hold even one drop of urine. That made it difficult when I went anywhere and I was constantly worried about embarrassment. So as always knowing the risks of any surgery, I knew I had no choice.
Dr. Kim did my surgery and she spent a long time explaining the risks to both me and my daughter before it was done. Any surgery has risks and when we have gone through so many, the risks are more prevalent because mesh injuries take their toll and we are more vulnerable. So I went into this surgery, eyes wide open
and just hoped all would be okay.
Before I continue, I want to once again tell you that so far I have not met or heard from anyone else who wound up with the same infection had. I also want to say I do not blame Dr. Kim for it as it has happened to many people while they had surgeries, other than mesh. In truth I was just so unlucky.
When I went to remove the catheter at home myself after this surgery, I was not worried. I had flown home after removal surgery by Dr. Raz six months earlier and had removed it myself and did not have any serious worries. Yes I had concern something would go wrong, but it didn’t. So when it came time to remove it a second time, I knew what to expect. However, at first nothing happened but within thirty minutes I began having such severe bladder spasms I knew something was different. I called my daughter from my room (she lives with me) and asked her to take me to the ER immediately which was fifteen miles from our home. On the way there the pain was so bad I could barely catch my breath and by the time I walked in the ER they took me back to a room and began working on me immediately. The small hospital has a wonderful E.R. and within a few minutes IV pain medication was given to me and I could finally breathe.
Just before leaving home I had managed to call Dr. Kim and she told me to make sure they put the catheter back in and do a urine culture. I had been to this ER a couple of times while waiting for mesh removal and they are wonderful. I had her information on me and they checked in with her via phone and told me they would do whatever she wished.
You may be confused over the difference between a dip stick test done in a doctor’s office and a urine culture test. A culture test has to be done in a lab and it costs more money. But it could save your life. Learn more about this test here
Everything was done very quickly and they were very gentle when they put the catheter back in. Urine was removed from me, not taken from the catheter bag and it was sent to a lab. Four days later I got a call that scared me so much. They told me I had Pseudomonas infection.
The infectious disease lab doctor called me before my doctor’s office was open. I wrote all about this when it happened because I always share the truth so that other women will understand and know what to do if anything like it happens to them. I am not into staying quiet if it means another woman knows what to do.
At the time I had a terrible personal care physician who was not interested in working with Dr. Kim or me either. I am not going into this all over again because it is all on this blog. But the gist of it is, I had to find a new one when I was in serious trouble and I found a nurse practitioner who helped. Then I got the care I needed and home health care was set up and for two weeks I was given eight times the normal amount of a drug called Gentomicin. It killed the infection but left me with total dizziness from which there is no cure from this drug. My life had changed for the worse and none of this would have happened had mesh not have been put into my body without my full knowledge.
The reason I am writing this blog however is because Dr. Kim told me that without the proper treatment as soon as possible this infection could go into my bloodstream. Then as I read through Google I could have wound up with sepsis. So I had no choice but to get the care I needed right then. If you want to know more about the infection I had, read this
Pseudomonas is just one type of serious infection but there are many more. You must make sure that cultures are done when you give a urine sample. Do not take any chances. INSIST that your doctor does it even if they think it is unnecessary. I can assure you it IS necessary. The reason is simple. Because of mesh our immune systems are compromised and any infection can take us down quickly. Without knowing what the infection is, you can be misdiagnosed and the wrong antibiotic will be given. You need to know every time you have an infection what it is and what can be done to stop it quickly.
Now this is where mesh injured women are different than women without mesh. Mesh pores hold bacteria which then causes terrible symptoms. Severe pain, bloating so that you look like you are pregnant and if not treated damage to your kidneys.
I just ‘met’ a Canadian woman who is a survivor of sepsis although she is not mesh injured. She feels lucky to be alive and she began a blog. I have been reading her blog and been chatting with her. She is creative and articulate and her blog is excellent with YouTube videos you can watch. You can read her blog here Just start scrolling down and learn. I read this passage on her blog and I thought I would share it with you.
“Everything I share is done with the best of intentions to educate, primarily, myself. Please do not use the contents of this blog as a valid source of medical reference. My experiences are my own and I share them to bring light to my situation with the hope that others who have found themselves ‘not recovering’ months or years, post-sepsis, may find something that reflects their personal situation and be of assistance by way of a simple acknowledgment that things are not in your head, life can become very difficult and you are not alone”
I completely understand that statement because blogs are usually born out of one person’s experience and their search for answers.
This is so important for all mesh injured women because the mesh itself holds so much bacteria and when antibiotics no longer work and doctors ignore your infections you could be at high risk. This will tell you why. Sepsis is a toxic response to infection that kills 258,000 Americans each year. It is a medical emergency that requires early detection and treatment for survival.
What are the symptoms of sepsis? Read this
Treatment is very important and you need to get the person to the hospital immediately if you suspect sepsis. Read more here
You can read about an organization who is trying to raise awareness here
You need to be armed with all you can learn to save your own life.
That is why I keep learning and sharing.