I just now heard back from Cedars-Sinai. My Gastric Emptying Study has been scheduled for next Friday, August 6 at 8:30 am at Cedars. The follow-up appointment with the doctor for results will be on Thursday, August 19 at 11:30 am. I’ve asked them to put me on a list for cancellations to see if I can get a follow-up with the doctor earlier than August 19. We’ll see!
Met with my regular doctor this morning for follow-up on some other testing he did to chase down some possibilities for some of my symptoms and they all came out fine.
On another note, we heard today that Josh’s spot for the Devil Pups Boot Camp has been secured! We drop him off in Pasadena at 7:00 am tomorrow. A bus will take he and the other “Pups” to Camp Pendleton from there. We’ll attend his graduation next Saturday, August 7 at noon.
I am looking forward to taking the weekend with friends in Temecula then as well. We haven’t done any real “family vacation” together this Summer yet, so that should be a good break for us all.
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Tags: Cedars-Sinai, gastroparesis, Paul Kuzma
The long-awaited consultation happened today at Cedars-Sinai Medical Center in Beverly Hills. We don’t know much right now as far as what I’m battling.
The doctor seems pretty thorough, and after a lot of explanation of symptoms, questions and answers, the next step will be a run of blood work and his own gastric emptying study.
I’m waiting to have blood drawn as I’m writing this. The gastric emptying study is different from the one I’ve already done. The Cedars study will take about 3-4 hours. I should know when that is going to happen in the next day or two.
The doctor is suspicious that I may not have Gastroparesis for a number of reasons, including the volume of weight loss (70 lbs in 6 months) and that gastroparesis happens much more commonly in women than men. So, he’s not convinced that’s what I’ve got, but this more thorough gastric emptying study will tell us.
That’s where we stand right now. I’ll keep you posted on the schedule as we know it. In the Lab waiting room, they have you take numbers. I’m #81 and they just called #70!! We may be here a while!
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Cannot believe we are on the last full weekend of July! Cannot believe it has been 6 weeks since my gall bladder was removed! Cannot believe I am still having symptoms I had prior to the surgery, meaning that the gall bladder was not the problem! Cannot believe we are only 1 month away from the school year starting! Cannot believe it is only 154 days til Christmas!
In some ways , this year has flown by, yet in other ways, it seems to be crawling slowly. Do you feel that, or is it just me?
Last weekend, we drove up to Bradley, CA on Friday to attend Josh’s Sea Cadets Boot Camp on Saturday morning. We missed him a ton over the two weeks and were very excited to be there for this big day. We were just as excited to bring him home!
If you’d like to read more about his experience, one of his fellows shipmates in his company has published a website. Click here to see it.
Here are a couple of pics of the event:
It was a full weekend as we drove home after the graduation, arriving around 6:00 pm. On Sunday, I spoke at church for the first time since my gall bladder surgery 6 weeks ago. It went well and was very refreshing.
Honestly, one of the hardest things about the last 6 months with my health issues has been feeling like I am not doing my job or pulling my weight with my inconsistent preaching schedule. Sometimes, the nausea and abdominal pain has been disruptive enough that it’s been hard to concentrate or focus enough to put my message together. Other times, I’ve literally had to have someone else step in almost last minute because a Saturday or Sunday will be that disruptive for me physically.
I do feel some strength slowly returning in the last couple of weeks, so that’s good and encouraging. I also haven’t lost weight in three weeks. Another hopeful sign. I’m definitely not where I want to be, but some progress is always hopeful.
Looking back on the last 2-3 months now, I can say that even though I am still struggling with the nausea and abdominal pain (as well as some other symptoms) daily, it is not as intense as before the gall bladder was removed. Now, I can look back and see how the gall bladder would have been complicating and exacerbating the symptoms.
I had good days on Monday and Tuesday, and even made it to our weekly Pastor’s Prayer Meeting on Wednesday for the first time this year! However, Wednesday afternoon, Thursday and today (Friday) have each been progressively bummer days physically. I’ve had worst days though, and there’s much to be said for that!
On Tuesday, I have my appointment at Cedars-Sinai in L.A. at 12:30 pm. I hope to have more info after that appointment. I also see my regular doc on Wednesday morning for results of some additional testing he had run to try and chase down more possible causes of some of the continued symptoms.
On Thursday, we’re taking Josh to Pasadena to meet a bus at 7:00 am that will take candidates to Camp Pendleton for a 10 day Marines Devil Pups Boot Camp. He doesn’t have a secured spot, but is hoping there will be enough no-shows to allow him to go.
If he gets a spot, we’ll be attending another Boot Camp graduation on August 7 down at Camp Pendleton. We hope to make that weekend a mini-vacation down in the area with some friends. We’ll see what happens!
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Tags: Devil Pups, Paul Kuzma, Sea Cadet Boot Camp
I think the title of this post is an appropriate one for how I feel today in a few ways.
First, we leave tomorrow afternoon to drive north to attend Josh’s Sea Cadets Boot Camp Graduation and bring him home. He’s in the HOME STRETCH of his experience and we’re in the HOME STRETCH of missing him!
A phone call this morning indicated he will probably have a good chance at getting in on the Marine Devil Pup Boot Camp July 29- August 7 down at Camp Pendleton in Oceanside. He is really excited about that one too.
By the way, here’s another pic of him that showed up on the website, learning knot tying:
Josh is the one on the right.
Then, regarding my health. My surgeon said on Monday that if I’m still having nausea and abdominal pain this far out after the gall bladder surgery, then the problem these last months was not caused by the gall bladder. The gall bladder went bad because of whatever else I am fighting.
Yesterday, I saw the GI doctor, who I think has done all he can with me. He feels since my weight has stabilized the last two weeks (which is a good thing, though I usually plateau for a couple weeks before dropping more), I am getting better and he’ll see me in 8 weeks.
Well, in two weeks, on July 27, I have my appointment with Cedars-Sinai’s GI Motility Unit. I am hoping I am in the HOME STRETCH of dealing with this and hope to get more definite diagnosis and treatment, though it may take a while to get there.
Lastly, most who read my blog know that we are in construction at the church facility, doing a major remodel of the Sanctuary and many of its systems (structural, electrical, HVAC, etc.).
While we went through some trials with the city January-May, we finally started construction on June 1, and it has been moving very fast the last couple of weeks. The Contractor is trying to get us back into the Sanctuary in mid-August, only a month from now.
With so much happening there, I feel like we are in the HOME STRETCH of getting this thing done! That’s a good feeling, though there is so much more to do. If you’d like, you can see pictures at our Facebook page by clicking here.
We’re finally hitting a bit of heat this Summer after a very mild start. Having our first 100 degree day today!
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Tags: Cedars-Sinai, Devil Pups, Paul Kuzma, Sea Cadets
A week ago, we left on Saturday to check Josh in at his Sea Cadets Boot Camp on Sunday at Camp Roberts, 200 miles north of here. You can see my last post for details on that. In the meantime, while we haven’t heard anything from Josh (and don’t expect to), there’s a website where they are posting pictures of the experience. Josh has shown up in a couple of them, so I thought I’d post them here:
These recruits are waiting for their check-in processing. Josh is the one without his "cover". He forgot it, and paid for it with the DI's almost immediately! I don't think he'll be forgetting much stuff after this experience!
Here the recruits are waiting in line at chow hall. If you count heads in the picture, Josh in the 9th one back.
It was tough to leave him there, and we miss him around the house! Needless to say, we are really looking forward to the trip next Friday and Saturday to attend his graduation and bring him home! He graduates on Saturday, July 17 at 11 am.
After leaving him there, Colleen drove us (I wasn’t feeling all that well after Saturday’s drive) leisurely down the 101 with a couple stops in Paso Robles and Pismo Beach. Being the 4th of July, Pismo was PACKED!
We arrived at our next stop at the Motel 6 in Goleta about 6:30 pm. We had planned to meet some friends who have a family tradition of Santa Barbara fireworks for the 4th of July. However, Jonathan really didn’t want to do the fireworks show.
So, the modified plan was for me and Jonathan to hang together at the motel and Colleen to go meet the friends. Well, that plan got modified by our exhaustion.
We were so tired by the time we got to Goleta that we just napped while Jonathan enjoyed the cool and retro styled Motel 6 (never seen one like that before) and the flat screen TV. Even Colleen decided to forego the fireworks!
On Monday morning, we drove to Solvang, where our friends were staying. Colleen and the wife of the couple took off for a pre-planned night in Avila Beach. Jonathan and I hung with the rest of their family at their timeshare in Solvang.
He and I were going to drive home that evening, depending on whether or not I felt up to the drive. Jonathan initially really wanted to go home for some reason. However, by the time I felt up to trying the drive around 9 pm, he decided he wanted to stay the night, so we did.
On Tuesday, Colleen arrived back around 3:00, and we made our way back home.
Health-wise, the weekend travel wasn’t real easy, but I wasn’t going to miss the trip to take Josh up no matter what. It was worth it. I want him to always know that I am willing to do whatever it takes to help him make his dreams a reality whenever I can.
Tuesday and Wednesday were fairly good days. They weren’t without nausea and stomach pain. There were ups and downs, but they were relatively mild.
With my parents in town and currently staying at my sister’s place, we’ve been spending as many evenings over there as we can, which we did Wednesday night. Around 9:30, Mom came down with some severe pain in her left jaw that wouldn’t go away.
My sister took her to the ER and stayed with her until about 12:30 am. I took over from there, driving her home when she was released about 4 am. They checked out her heart and all was OK. They sent her home with some antibiotics in case of infection and some Vicodin for pain, recommending she see a dentist of the pain returns.
Thursday and Friday were rougher days for me physically. I saw my regular doctor Friday morning for a follow-up to surgery and other things. He is moving forward on testing for additional issues over the next 2 weeks. We’ll see if that turns up anything.
The gall bladder surgery was four weeks ago now. The incisions have healed pretty slowly. They’re all still fairly tender, especially later in the day. The doctor thinks that may point further to a possible auto-immune condition, as those tend to cause slower overall healing to any wounds or injuries.
The nausea and stomach pain when I eat is still present, seeming to indicate that the gall bladder going bad was a byproduct of whatever has been going on the last 6 months, rather than the cause.
I still have the appointment at Cedars-Sinai on July 27th, so I’m holding out hope that it may start a process of further revelation and help.
That’s about it for now. Hope your Summer is progressing well for you, and that it’s filled with some good down time, rest, refreshing and family time!
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Tags: Camp Roberts, Motel 6 Goleta, Paul Kuzma, Sea Cadet Boot Camp
I am both proud and nervous about this weekend! Our oldest son, Josh, who is 15, is embarking on quite an adventure.
On Sunday, we will check him in at Camp Roberts, just over 200 miles north of here, where he will begin his two week stay for a US Navy Sea Cadet Recruit Training Camp. It’s BOOT CAMP!
We’re so proud of Josh’s initiative this year to become a part of this stellar program run by the Navy for teenagers. He goes to Port Hueneme two Saturdays a month for a day long “drill”. The recruits and cadets are taught military style and structure, as well as a ton of practical skills, all of which lean toward building their character as citizens.
He is very excited about it, and we’re excited for him, but as a Dad, I’m not sure the two weeks will go by fast enough! We’ll go back up for his graduation on Saturday, July 17 and bring him home that day.
Interestingly, we are still waiting back to hear from the Devil Pups organization, which runs a 10 day Boot Camp at the Marines Camp Pendleton Base in Oceanside. That one runs from July 29 – August 7. That also has been his initiative!
On the way back from Camp Roberts, we plan on stopping in Santa Barbara to meet up with some friends who will be there for 4th of July Fireworks. Rather than fight traffic on the way back, we’ll stay the night and drive home Monday.
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Tags: Camp Roberts, Seas Cadets
Met with the surgeon for a follow-up appointment on Monday morning. He says everything looks good as far as surgery recovery is concerned.
Over the weekend, even after being home a few days and one week past surgery, I was feeling pretty exhausted. I realized my energy level BEFORE the surgery was already pretty low (maybe a 4 at best, on a 0-10 scale). I felt like the surgery pretty much decimated whatever remaining energy I had left.
Mentioning that to the surgeon on Monday, and the GI Doctor yesterday, they both reminded me this was a complicated gall bladder removel particularly because of the infection, and that recovery was probably going to be a bit longer than I expect.
So, I’ve been wading through that the last few days, working when I can, and getting incrementally stronger each day. I’m not where I was before surgery yet, but it’s good to at least sense I’m on my way and not just stagnating.
Since being home, I have continued losing a little more weight and am now down 66 pounds total since this all started in January. I’ve been trying to eat a little more solid foods since coming home from the hospital. However, the nausea persists at this point.
The doctors have also mentioned that even though we’re almost 2 weeks post-surgery, we really have to wait another week before making any determinations of whether or not the gall bladder was/is the bottom line issue of the last several months.
Yesterday, when I saw the GI doc, he gave me yet another med to try for nausea. This one is called Phenergan. We’ll see if it makes any difference.
On Tuesday, I’ll see my regular doc for follow-up with him on all this. I was also finally able to get an appointment with a GI motility specialist at Cedars-Sinai. It doesn’t happen until July 27, but at least it’s a step. It’s my sincere hope that I won’t even need that appointment. That the nausea would just go away and I can start eating again. We will see.
On a really UP note, may parents came into town from Texas just yesterday for a 7 week visit! We’re looking very much forward to some good times with them over the next few weeks!
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Tags: Cedars-Sinai, gall bladder disease, gastroparesis, GI motility, Paul Kuzma, Phenergan
It’s been quite a wild ride the last few days. Even just typing this right now drains quite a bit of the energy from me. The last few days, knowing so many have been praying for me, has been a very deep honor. I appreciate it so much.
In my last post, I gave some history of what landed me in the hospital. On Friday evening, about 5:00 pm, I rolled into the OR and had my gall bladder removed. It was said to be “inflamed, infected, and thickened.” We were also told there were multiple stones in it.
After surgery, the doctor mentioned to Colleen that they also found some infection underneath the liver that had to be cleaned up. However, even with that, they were able to do the surgery laparascopically, which will make for a shorter recovery, versus an open incision. That’s a good thing, but I have yet to know that “shorter” part yet.
On Saturday, when the doctors came by, I was told I would be going home Monday at the earliest. However, over Sunday and Monday, I experienced significant waves of nausea. On Monday afternoon, the surgeon decided to keep me another night and stop antibiotics immediately in the suspicion that the antibiotics were causing the nausea.
On Tuesday afternoon, after about 24 hours without the “significant” nausea, the surgeon went ahead and sent me home. So, I’ve been at home for about two days now.
The question on all of our minds is whether or not the gall bladder going bad is the cause of the nausea and pain of the last 5 months. All of the doctors answered the same. We don’t know, and won’t know, until I have recovered from the surgery and see how I feel. That’s going to take at least a couple of weeks after surgery. Tomorrow is the one week mark.
Over the couple of days being home, I mention I have yet to know the “shorter” part of the recovery from doing the surgery laparascopically because the incision pain has been quite something to overcome. I’ve also still had nausea all day that increases and decreases the same as pre-surgery.
The same symptoms I had still exist, and the nausea often increases with anything I put on my stomach. On top of that, I am quite exhausted whenever I try to expend any energy, even just taking a shower or doing the recommended walking.
However, the doctors have encouraged me to be patient. The nausea I am currently experiencing could come from a number of surgery-related factors. It could be from the surgery itself, the antibiotics, the anesthesia, or the painkillers. And if it’s from any of those factors, the nausea could resolve once the surgery recovery does.
That’s obviously what I’m hoping for, though it’s admittedly difficult to remain patient when I’m having the same symptoms I’ve had for over 5 months now. I am trying to eat more normal foods, but just can’t put much food down.
In the mean time, just in case, I am still working on getting referred down to Cedars-Sinai for potential further help with gastroparesis. Also, the events of last week stalled getting together with the holistic chiropractor. I am currently not sure whether or not I will pursue that route, at least until I’ve recovered from surgery.
I think that’s about it for now. For those who have been leaving emails and praying and riding this roller coaster with me, thank you!
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Tags: colicystitis, gall bladder disease, gastroparesis, Paul Kuzma
The last few days have been a bit rocky. In short, after a painful episode at 2:00 am on Memorial Day that lasted 2 hours, another at 1:00 am last Monday that ended with a visit to the ER, and a THIRD episode that began Wednesday night at 10:30 pm, I am writing this update from the hospital!
Now, I am very used to being in the hospital, but in a very different way. I am the person standing at the side of the bed, visiting folks who are in the hospital. I am NOT used to being the person in the bed! Talk about an education! The last time I had an overnight stay as a patient was many moons ago as a child, when I had my tonsils removed.
After fighting the pain and waiting for it to subside for about three hours on Wednesday night, I finally had Colleen take me to the ER again at 2:00 am. The pain was getting worse, not better.
Come to find out, my gall bladder needs to be removed, along with a few stones that have developed in it. So, around 5:00 am Thursday morning, they admitted me and have kept me on pain medication and antibiotics to prepare for surgery today. It’s scheduled for 4:00 pm, though anyone having any experience in these things can tell you that the later in the day your surgery is scheduled, the later your surgery is apt to begin. Surgery schedules flex through the day depending on how the earlier surgeries go.
Depending on how this goes, the surgeon anticipates my returning home sometime between Saturday afternoon and Tuesday. The determining factor is whether he is able to do the surgery laparoscopically (small incisions and applicable tools) or not. He will start laparoscopically, but says that with the infection of the gall bladder, he may find he can’t finish that way. If he has to go with a larger incision, that lengthens the recovery and hospital stay a bit.
The biggest question in all this is how and whether or not it is connected to my overall health situation of the last several months. What I gather from the doctors when I ask the question is that it’s hard to say how much it plays into it all. We very well may not know how much it has until I get through the recovery from this surgery over the next week or two.
In answer to your question (because I know you’re asking it!), on the one hand I would love for you to come visit. On the other hand, honestly, I know I am very tired and need to rest through this. Please check here for updates, continue praying, but please hold off on visits for now.
I’ll try to keep you as posted as I can, and I really appreciate your prayers through this.
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Tags: Crohn's Disease, gastroparesis, health, Paul Kuzma
I couldn’t wait until June 23 for the results of the colonoscopy biopsies, so I called the Doc’s office today. Turns out the biopsies all came back normal, so that’s good. I think it means my intestines are healing, though they sure have been taking their sweet old time!
Essentially, there were no signs of continued ileitis is the way I take “normal”, but I am sure there will be more definition on the 23rd. I believe that would mean the diagnosis would steer away from Crohn’s and toward Gastroparesis.
Good for NO Crohn’s, but Gastroparesis isn’t any fun either. Given that I’ve tried the meds available to get the stomach going again and they’ve been ineffective, I’m left to try a med that the FDA hasn’t approved and that I’ve got to get from another country. Something called Domperidone. That’s a bit of a challenge.
With the Gastroparesis, the continous nausea and stomach pain remains a problem for me. It’s honestly wearing physically. I can’t tell if the fatigue is coming from fighting the pain and nausea, or if it’s just part of the Gastroparesis.
One person I read said their GI doc explained that fatigue can come from the fact that now, your GI tract is constantly working to digest, rather than a well working system that digests after meals and then rests until the next meal. Makes sense.
The only other treatment really is in diet. From the lots that I’m reading, I’m getting the notion that other than low-fiber, low-fat, low-residue, and eat several small meals a day rather than the traditional three, I am going to have to experiment with different foods and see what they do.
My dinner staple is chicken noodle soup. Last Sunday night, I BBQ’d chicken for the fam and had one piece without the skin. Monday at 2:30 am, I woke up with severe stomach pain for two hours. I was simultaneously trying to stay quiet so I wouldn’t wake up Colleen and wondering if I should wake her up and have her take me to the ER. It finally settled down around 4:30.
Last night, I had Chicken Corn Chowder, trying to variate a little bit. Not a good idea for the GI system this morning, I found.
However, earlier this week, I had some white rice (limited to that type is what I’m told) and it seemed to go pretty well. Not without resultant nausea, but at least another food to use.
The holistic chiropractor appointment I was supposed to have today was moved to Monday because of an emergency on his part. We’ll see what happens there.
Until then …. a good weekend to you!
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Tags: Crohn's Disease, gastroparesis, Paul Kuzma
