Gall Bladder Fiasco Continued and hopefully the Final Chapter!

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The first part of this story can be found here https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/ shared May 18th. I had my ERCP that showed I had Gall Stones hanging out over by the piece of Gall Bladder that was adhered to my liver since March of 2012 when I originally had it removed. The test also showed the lining of my stomach and surrounding areas were severely inflamed. I was given another diagnosis of Gastritis. So of course I waited to see the surgeon again and get my surgery date scheduled. It was scheduled for July 10th, 2013. 1 week ago today!

The surgeon told me that he would try to remove it first like the last time. I would have 4 small incisions. If he couldn’t get it he would have to do a larger cut. I was scheduled for a Laparoscopic Completion, Cholecystectomy, Possible Open, Possible Cholangiagrams. I signed the forms! I had to arrive at Mercy General Hospital at 5:30 a.m that morning for 7:30 a.m surgery. The surgeon told my husband to give him 4 hours, but that he could be done in an hour and a half, but not to worry until the 4th hour. I headed into the OR.

Now I have to laugh about this because I felt my hand zing and then zing again. They were putting me to sleep! But I didn’t go to sleep. So the Anesthesiologist ask me what I did for a living and I went on to babble about RSD/CRPS awareness, educating, working for the Power of Pain, I just chatted them right up and I know they were waiting for me to go down, even gave me more a few seconds or so before, I felt it. I remember looking off and thinking I’m going to go to sleep now and started to say it, but then I woke up in recovery with worse pain than the first time.

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I still have swelling, a lump above my top incision that hasn’t gone down yet. When my doc called me the day after my surgery to check up on me, I told him about it, he said it was because that’s where he beat me up the worse. Funny! I laughed! That is where he had to use the tools and manipulate inside me to peel that piece off my liver, he said it should go down in a few days. I hasn’t yet though. I tried to drop the pain medication yesterday and switch to OTC NSAIDS but when I woke this morning I was hurting so bad from the top incision/lump to the side ones. A feeling of being inner bruised. Understandable really. So I’ve switching back and forth from Norco 10/325 to 4 OTC Ibuprofen. The Ibuprofen will help the inflammatory more than Norco will. Tylenol doesn’t touch that type of pain for me.

I was also mentioned to me that I have Crohn’s Disease. It’s a lot to process. My Gastrointestinal problems have become so bad that it seems the likelihood of internal CRPS is more my situation. I’m not going to mention all the symptoms right now, I’ve mentioned some of them in my group, on my facebook timeline, I just really need to find a doctor, a GI or Internal Medicine that is educated in RSD/CRPS, not one who has only heard of it. That was my experience with this surgery, a few heard of it, no one “knew” about it. My own primary doesn’t know “about” it. I had to educated him with just pieces as there is never enough time for it all.

I’m lucky to keep food down, even things to drink, I have to pick and choose carefully, the doc did also send me home with the generic for Prilosec to take a half hour before I eat anything first time each day. I either have diarrhea or can’t potty at all for weeks.

It seems the surgery has eased the pain over under my ribs on the right, but so far the mid back pain and other pain is still here. I had my SCS checked 2 days before my surgery by my Medtronic Specialist. It’s fine!

When the surgeon removed that piece of Gall Bladder it was full of fluid and was growing new tissue. He was able to remove several stones from that same area. The pathology is already back and it was negative for any cancerous cells.

On Monday when I had a follow up to my OBGYN due to inflammation found on my Uterus and the cyst(s) found on my right ovary which is larger than my left side and includes scar tissue as does my lower belly from left side to the entire right from an ectopic and exploratory surgery many moons ago.  I opted for what I believe is called Nexplanon. I could have also tried the Depo or an IUD. Never again to an IUD for that is how I conceived my Ectopic twins. And I’ve tried Depo Provera  and didn’t believe since these were my only options it was right for me. Normally the implant with is a small flexible tube is used as a form of birth control which can last up to 3 years and it stops the menstrual cycle. Yay! It was implanted beneath my inner left arm. The reason I opted for this was that my other option was a full Hysterectomy. This option buys me some time. I am not ready for more surgery yet. If at all. First of all it’s not safe for those of us with RSD/CRPS and secondly repetitive surgeries just aren’t safe for any of us. We always have to decide in the end what is best for us by weighing the pros and cons to it all.

If your doctors aren’t aware of your RSD/CRPS, please educate them. I do in pieces and portions but we only have so much time in each appointment. If need be take information and have it put in your file. In fact, that is exactly what I’m doing for my 24th follow-up with my surgeon and when I see the other’s next, same for them. My surgeon seems really great and caring. To call my husband at home to check on me and then asked to speak with me for a few moments even though I was resting, I respect that. You don’t get that much now a days. I think he will be appreciative, not upset or offended. Not the people should be, yet sometimes they are, especially when the info comes from no medical degree persons like myself. Some become quite offensive, also. They assume we think we’re know it all’s! Farthest from the truth! So I’ll hand off the info which will include more than 1 source and see which one actually has a broader perspective the next time I see him.

While I’m sure it’s happened before, no one from my surgical team had heard of it and no one from my doctor’s offices had heard of it…

Nor from my own communities online and off, family or friends.

I actually gave birth to a Gall Bladder twice! Just different sizes!

So glad it’s over and I’m on the path to healing again.

One down!

~Twinkle VanFleet

CRPS Survivor

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Endoscopic Retrograde Cholangiopancreatography 5/21/13 Due to Gall Bladder Removal Fiasco

TwinkleVanfFleetJPDrainMarch242012This entire ordeal began with my emergency Gall Bladder removal 14 months ago at UC Davis Medical Center in Sacramento California. When I awoke from surgery I learned I had a small internal bleed and that was why a JP drain (Jackson Pratt) was inside my side by a long tube. I also learned that a small piece of Gall Bladder was not removed but no one went into details why. I asked if it would cause me any future problems and I was told it would not. I was sent home days later with the JP drain still attached to my body. At home I was required to measure the blood that had accumulated in the drain bulb, measure it, record it in a log for the doctor and discard the blood into the toilet. I had to do this 3 times a day for 8 days. I could only sponge bathe and stayed in the hospital gowns even at home. I had to pin the JP drain to the gown otherwise it would pull out of my body.

All year long I continued to have pain in the same area right beneath my chest, under the right breast, behind the chest wall, an opening and closing feeling and as it opened and closed a feeling of a fire place poker being shoved in and out.

Everyone thought I was crazy. It couldn’t be my Gall Bladder, I didn’t have one!

Late February of this year I began to have severe pain where the Gall Bladder use to be, I could hardly breathe, I deal with CRPS pain and average a 7 daily, but this pain shot strait to a 10. I thought I was dying! My husband took me to the ER. They didn’t believe it to have anything to do with my upper belly, Gall Bladder either, Xrays showed 2 clips from that Gall Bladder surgery, my Spinal Cord Stimulator (SCS) and it was dismissed as constipation. I’m sure I was constipated too with the meds I take, specifically Suboxone at that time which I took for CRPS pain management the last 3 years, but that’s not what the pain was from. I was sent home with the suggestion to follow up with my primary asap. I did!

He ordered an ultrasound right away. The ultrasound showed I still had stones which was believed to have been inside me since the original Gall Bladder surgery. It also showed inflammation and re growth of tissue as the posterior wall of the Gall Bladder is adhered to my liver.

I was sent to a surgeon. I told him how everyone thought I was nuts when I mentioned the pain being so similar to the original Gall Bladder pain, he said “Well you might be nuts, but it IS your Gall Bladder!” He had a great sense of humor and finally some validation.

In order for him to fix me he will have to cut part of my liver away.

He first opted for an MRI, but since I have an SCS (Spinal Cord Stimulator) I am unable to have one.

Instead he ordered a ERCP.

On Tuesday May 21, 2013 I am having 2 procedures done. The ERCP (Endoscopic Retrograde Cholangiopancreatography). I will be under full anesthesia while the camera is inserted down my throat and for the removal of the stones from my bile duct. If there are no stones found, but they were there, he will still cut the bile duct clean it out and leave a stent or tube behind.

If I end up with Pancreatitis as a result of the procedure I will be admitted to Mercy General Hospital in Sacramento for a few days, if not, I will get to come home the same day if no complications. I also learned that one of the 2 procedures may be rescheduled due to time. I hope not.

This has been going on since late February and the pain while it comes and goes can be so overwhelming even a second trip to the ER 3 weeks ago with an injection of both Toradol and Morphine then Morphine again an hour later didn’t help for 2 hours after I got home.

This needs to be done for me to go on for the actual surgery on my liver. While the stones cause pain, so does the that piece inflamed on my liver.  It’s growing new tissue. It feels like back labor. My right side beneath my ribs throb in a way hard to describe.

I feel like that surgery in weeks or months down the line.

One thing that does bother me a bit is that in my xrays at UC Davis ER in February the clips were seen. In the ultrasound less than a month later they weren’t.

I hope I didn’t spring a clip or two. Kinda funny the way I said it, but not really.

This story will have a continuation…

~Twinkle V.

 

 

New Electronic Claim Filing System for SDI- Be Aware and Beware!

Effective March 1, 2013, claims may be filed online

The Employment Development Department (EDD) has implemented this new electronic claim filing system or SDI, called SDI Online. You can now process your claims conveniently and securely online.

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This was already a brand new feature in December of 2012 when my husband was hospitalized at Mercy General in Sacramento CA for a Quadruple Bypass Open Heart Surgery December 21st. The hospital staff referred us to the site to fill out the required information to begin my husband’s State Disability on December 26th when we completed the form. We were given a “Form Receipt Number” after registering to give to his doctor so that he could complete the Physician’s part of the form online. Since we didn’t see the doctor the day of my husbands discharge we were told to call the doctor at Sacramento Heart when my husband was released from the hospital to give them the Physician Receipt Number. He was released December 28th, 2012. We do so and make the call. They will not take the number over the phone, he has to bring it in. First stressor! My husband had an appointment already scheduled for January 4th, we would give it to them at that time. We did so! It’s important that I share with you part of this story because new people become eligible for State Disability for Family Medical Leave everyday. There are a number of reasons why a person becomes disabled for a period of time. Whether it be from something as seemingly simple as maternity leave to an emergency life saving surgery to a car accident and so forth filing the proper claim by both parties, patient and physician is needed for benefits to be approved and received.

The new online system was suppose to make filing simpler, with less hassle, and stress, making it a smoother process and overall transaction. It hasn’t been! 2 weeks after the December 4th appointment, we sign into EDD SDI online only to find “Pending Physician Form” Second stressor!

My husband has not had any income now for 44 days.

He begins making calls to his doctors office and speaking to the only person who apparently takes care of processing patients disability claims in that office. She will have absolutely nothing to do with filing his claim via the new online system. She claimed it was too much work and that it was only her there. There was no compromise! Third Stressor!

All this while my husband was also trying to recover from the painful surgery. She would have to create a “Physician/Practitioner’s User name and Password account and enter my husbands “Form Receipt Number”. Each new patient would only require her log in and enter their “form receipt number” and information. Nearly flawless! Or so it seemed. One really would think that she would want to get ahead of this now and learn it before she is slam dunked with all the new people who will be choosing to file this way or who may be required to do so. Finally she told us that we would have to use the paper form, bring it back in to them for them to fill out, sign, and fax to EDD. We asked if they had the form, she said no but we could get it online. Funny how she can refer us online for a form, but not deal at all with the form we filled out via online.

We located the form online, requested it and then had to wait for it to arrive in the mail. When the form came approximately 4 days later it asked if we had filed online and if so to add the “Form Receipt Number”, we did! We then had to take it back to Sacramento Heart to be filled out by the doctor.My husband returns home and we later find that the lady at the doctor’s office cannot fax it to EDD as she initially told him. He had to drive all the way back to retrieve the form and mail it in the envelope the form came in.

He should not even be doing all this driving back and forth yet. He’s still hurting from the surgery. We know he was put out of work for 6 months, but as of yet he has not received any State Disability Benefits. It is crucial that employees of medical facilities dealing with state disability claims be trained immediately to understand their part in the new online filing process. People rely on their benefits to keep a roof over their head and food to continue healing. If the person we spoke to would have only listened, she would have been taught. She would have learned from us and we would not be in further financial stress. My husband continued to try to explain the online process to her. Instead, she was rude and arrogant. She did not want to hear our problem, but made sure we knew hers. Very belittling. This is not a situation of a patient not filing a claim in a timely manner. It is technology moving forward and someone not wanting to have anything to do with it until they are forced to. Or perhaps even not being ready for it, but it’s here and it’s now.

So that there are no misunderstandings my husbands Cardiologist, Surgeon and Mercy General Hospital took care of him well in regards to the surgery and aftercare itself.

If we had known this new online system was not implemented to be a smooth transaction without errors, we would have opted for the paper form and snail mail way, but we did not!

Be aware and beware this process may not go as quickly as you may anticipate, we are still waiting.

Now with this specific Effective March 1, 2013 date, I hope that change is made right away…Otherwise more families will have to rely on the goodness and love of their Church for their Mortgage payment.

And just pray from there.

It is now February 12th, 2013.

Physician form is still pending.

Our Journey from Coronary Heart Disease to Quad Bypass Open Heart Surgery

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My husband Erik was scheduled for an Angiogram of his heart on December 10th, 2012. He’s had 2 stents in his heart since his first heart attack only weeks before his 38th Birthday. In 2011 he had a second smaller heart attack when he was 43. The first heart attack was a 100% blockage of the lower artery. We made it to the hospital just in time. Mercy General Hospital in Sacramento took him straight in, no wait, they noted the signs. That saved his life that day! We all know there are times we wait hours upon hours in the Emergency room. I did myself when I was having a severe Gall Bladder attack at another local Emergency room, only to find nearly 10 hours later I need emergency Gall Bladder removal surgery. These things happen. If it had happened the day of my husbands first heart attack, he probably wouldn’t be alive today.

After his first heart attack he was diagnosed with Coronary Heart Disease. This first heart attack caused damage to the lower part of the heart. I prayed and prayed that they could make him a new man. I hoped that after healing he would feel so much better again. He’s had 2 stents in his heart since the first heart attack. After the second heart attack he was taken back into surgery where it was found 1 of the stents was faulty and the other was put in wrong. 1 was fully replaced and the other repaired. He still has those stents inside his heart to this day.

As I wait in the Cath Lab waiting area while he was in surgery for the Angiogram, the wait seemed like forever. When he came out, he was beyond emotional, he just learned he needed the bypass which also meant the job he was just hired for at $27 an hour for 8 weeks he would no longer be able to take.

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Dr. Ochoa came out to speak with me as they continued to roll my husband to recovery and told me about the vessels being constricted, showed me photos of his arteries and how very thin they were causing lack of blood flow to the heart. At that time we thought it would be a double bypass.

We met with the surgeon, Dr. Dein explained the pros and cons of the surgery, laid it all on the line, possibility of infection, death etc.

He then showed us the actual video of my husbands heart. The doctor said it would be at least a triple bypass but that he would not know for certain until he got inside.

On December 19th we spend the day doing Pre OP tests, tons of blood tests, he was shaved, arms, legs, chest, matching his blood to a blood bank it he needed blood during surgery, etc.  They fed us both a meal since we were there at dinner time.

Surgery was scheduled the next morning. We were to arrive at 5:00 a.m

We arrived. He was prepped, IV’d, gave him 2 Ativan to relax him, we talked, told each other how much we loved each other and he went into surgery approx 6:30 a.m.

Hated waiting, the unknown, just me, myself and my thoughts. Thinking positive, chanting positive phrases, over and over again.

Waiting, resting, dozing, alert, I finally went down to the van to rest again, our niece Renata was on her way, showed up for support, with food, water, fruit, so that we would have something to eat. She had only been there just a bit, I came back up about 8:10 a.m and then I received a call on my cell phone. It was a nurse, my heart thumped, I learned an emergency with another patient had come up and they had just wheeled my husband back to the Cardiac Support Unit. Surgery Cancelled.

We would have to start all over the next A.M.

Our son Kurtis drove us home. He had just got his drivers permit only days before. The night seemed to go by slow, everyone was exhausted. My husband had to re fast again at 10:00 p.m.

I didn’t get but a wink of sleep. At 2:00 a.m. I showered, braided my hair, put my wrap around it (like a head band, tied to the side) and laid back down. Fell asleep for a few minutes or so and woke up and dressed at 4:00 a.m.

We were off again. My husband was going into Open Heart Surgery 6 days after turning 45 years old.

We went through the process again, IV’ing him, Ativan again, there was a bit of a delay do his patient number changing the prior day, ugh, finally it was all figured out.  Resigned authorizations etc.

And off we were as they wheeled him into the OR for the second time.

January 21st, the day the world was suppose to end. As he was being wheeled in, the sky lit up orange and a rainbow appeared. I missed it since I was walking behind him. Our daughter Kharisma who couldn’t get the day off work to be with her dad because her boss didn’t have anyone to cover her captured the image on her cell phone as she was walking to work. It was like God and the Heavens above saying… It will be alright! I still hadn’t seen it until hours had passed in the waiting room.

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Renata, our niece, my husbands sister’s daughter arrived once again. Renata’s mom passed away years ago. She had also had bypass, survived but passed away later. She was only in her 40’s. My husbands sister Tanya, her husband Chris and their daughter Katrina also came. Renata’s husband Tom arrived also.

Our daughter Erykah and son Kurtis were also there both days.

At noontime Kurtis asked one of the nurses how much longer for husbands surgery and we were told at least 2 more hours. It seemed like forever already. At about 2:50 p.m. the nurse came out to say it was going well. A bit later the surgeon came out to speak to us. He came out of the OR and into the first recovery at exactly 3:40 p.m.

I was so relieved. The day seemed so long.
I would get to see him soon!

They said in a half hour I could see him. I waited 40 minutes and tried but had to go back out and wait another 15 minutes. More waiting….

I waited another very long 30 minutes to be sure I could see him. I picked up the phone outside the ICU and asked to come back in. I was allowed but only for a few minutes. I went back and seen him. I had prepared myself for what I had been told by the surgeon and this is that the first time I would see him after surgery that he may look deceased. (deep breath) this is because of the heart being stopped and the lungs being collapsed and well technically he was dead during the time the bypass machine and so forth kept him alive while they operated. Oh how nervous I was.

I went back alone. (exhale) he did not look deceased thank God. He did not look well of course but he wasn’t as white and cold as was described to me. Probably because they had already began the warming process of slowly bringing his body temperature back.

The nurse asked if there was other family there, I said yes. She asked if they would all like to come in for a few minutes to hear an update on him. I went to get them. At that point I had only spent but a moment with him.

I left to get the family.

We returned. It was myself, our daughter Erykah, our son Kurtis, his sister Tanya and her husband Chris.

While the nurse was updating us, I asked if I could touch him. She said that I could. I gently brushed my finger tips across his cheek and then forehead. He was cool, but not cold. We weren’t allowed to stay but a few moments but I could return at 10:00 p.m. It was approx 4:00-4:15 pm at that time. I gave my husband a finger kiss…

Kissed my own fingers and placed the kiss to his cheek.

Everyone left to go home after seeing him except for Kurtis and I. We left to go down to the van to get some rest and wait to see Erik again at 10:00 pm.

Fell asleep and woke to go see him, he was still in the original ICU on the 3rd floor. He was still intibated with tubes breathing for him. He had 4 large tubes draining blood from his lungs and main incision to the heart.

When we went back up to see him I was told he would likely not know of my presence. I talked to him and rubbed his head and told him he did good and how much I loved him. He moved his leg. Our son and the nurse said that was probably just a twitch so I continued to talk to him, I told him again how good he did and that he made it, he lifted his chin and then the nurse realized he was acknowledging me. I stopped talking to him as not to excite him in any way…  just an I Love You until the next morning when I would be back to see him.

Erik VanFleet Removal of artery from left arm for Quad Bypass Open Heart Surgery Dec 21, 2012

Erik VanFleet Removal of artery from left arm for Quad Bypass Open Heart Surgery Dec 21, 2012

They had taken an artery from his left arm. 12 inch scar. And a vein from his right leg, 8 inch scar. The leg is still stapled together as is the 12 inch heart incision as I write this. Staples come out in bit less than 2 weeks now. They stay in for a month post surgery. The arm is stitched on the inside.

He was taken off intibation first thing the next morning of December 22nd.

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Kharisma came up the next day, as did my husbands brother Jim and wife Susanne. Each arrived from different parts  of town at about the same town. Jim and Susanne live in Sunol CA toward the Bay Area and came through a hard storm. Our daughter Kharisma came from West Sacramento.

The third day his heart rate was so high there was cause to worry, but it came down by that night. His Diabetes played a factor in recovery also and will continue to do so. Sugar and Sodium are the biggest No No’s now.

Lifestyle maintenance is a must. For all of us.

We spent Christmas Day in the hospital too. By this time it was 4 days after surgery and I was finally able to stay with him in his room.

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He spent time in recover, 2 separate ICU units and then another recovery unit.

The day before we came home, he was moved to yet another room down the hall on the 4th floor due to smoke smells of fireplaces coming in through the air vents. We’re hyper sensitive to the smell of smoke, especially Erik, ever since the fire that destroyed the home we were living in back in 2000. We lost absolutely everything. Even the walls and roof burned down. Erik saved our baby boy’s life by tossing him out the bedroom window the only room in the house that hadn’t fully burned at the time. They were both sleeping in it.

We didn’t have renters insurance. Hard lesson learned. Erik was burned pretty bad, smoke inhalation, but our son after being checked out was okay enough to come home with me. Erik spent the night in the hospital. 2 days before Thanksgiving, spent the holidays in a motel, went to a friends for Thanksgiving and spent Christmas of that year together and alone.

We’ve been there for one another through so much. January 26th will be the 12 year anniversary of the work injury that caused my CRPS. Tearing the tendons and ligiments off the bones of my right foot led to one thing after another after another.

I’m taking care of him now, as he’s taken care of me. A man takes care of his women and the woman takes care of her man. I don’t consider it an equal partnership, I am subservient. I always have been. I also have a good man to care for me, who’s never abused me, who encourages me to fulfill my goals while I encourage and support him.  Heading on 27 years together. We renewed our 25th wedding vows over the summer time.

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I brought him home on December 28, 2012. He’s been home a week yesterday.

We spent a quiet New Year at home together. Just us.

I (We) were given the best Christmas gift ever…

… The Gift of Life.

There could never be a better or more valuable gift than that!

He has a long road to recovery ahead and I have a long road to travel with him..

My heart keeps telling me …

… This too shall come to pass….

The world didn’t end that day after all…

Instead, a brand new beginning began!