I’ve got plenty to be thankful for…Posted: November 30, 2013
Quick! Which movie is that title from? (Answer at the end)
I hope everyone had a great Thanksgiving! Ours was super nice. Tony, Debbie & Lilli came down and we had a relaxed dinner and they brought in all of mom’s Christmas decorations and built our Christmas trees and put the lights on the big tree. They are most awesome! Tony, Debbie and Lilli, I mean. The Trees too. Everything is awesome.
We are having the most perfect weather here in Southern California today. It’s 70, blue sky, short sleeves weather. Just perfect for USC to BEAT THE bRUINS! T-26 minutes until the game starts! FIGHT ON!
Far cry from the crazy cold rainy day we had yesterday. Must have sucked for those who went out on Black Friday. I was not one of those. I didn’t get up until 11am and then went out to dinner with a good friend at La Paloma in La Verne. They have really good food – especially the ground beef tacos and rice. And deep fried ice cream. with honey. Not that I would know because as a diabetic I shouldn’t have these things.
(I took extra insulin)
This past Wednesday was the big day. Labs, Surgeon appt, platelet transfusion, Port placement surgery, and then red cell transfusion. I also had to NPO it after midnight because they were going to give me sedation for the port.
The only thing that went well was the red cell transfusion and I think it was because I was too drugged up by then to stay awake for it.
On Monday, I had labs drawn and my hematologist appointment with Dr. O and Kristin. My hemoglobin was 9.6 (good for me), my white cells were 0.9/0.2 (my usual sucky counts) and my platelets were 29 (normal suck for me). We discussed the Port Placement surgery. The shots I need to give myself before surgery are a medicine called Neupogen – this should increase my white cells. We decided to do a trial run of Neupogen in preparation for the Port surgery. That way, we would know on Wednesday, when my labs were drawn again, how the medicine worked on me. So I took the shots (which caused me excruciating back pain – lovely) and optimistically went to Norris on Wednesday.
Putting it mildly, my labs were SHIT on Wednesday morning. My hemoglobin had gone down to 8.8, my white cells were now 0.7/0.2 and my platelets had DROPPED to 15!! 12 is critical. Not the results any of us were expecting.
I found out these lab results while I was at my…
I hadn’t gotten my lab results back yet when I innocently walked into the appointment with Dr. M. She told me that there was a new issue. (add it to the list) Apparently, I need to have cardiac clearance to proceed with surgery on the 10th. My EKG from the PACE appointment on Tuesday showed the high heart rate and with all of my other crap, they feel it is best to see a cardiologist and perhaps have an echocardiogram. (Which is fine with me considering the heart problems in my family) The big issue? It is the day before Thanksgiving and the doctor that they want me to see (Dr. S) is out for the weekend. He is apparently the best and they don’t know when I can get in to see him. Fun Times.
I’m absorbing this bit of information when I innocently ask about my lab work and it is revealed that my numbers have all dropped. At this point, I’m TOTALLY in overload and Dr. M starts talking about what we should do. Apparently the surgery can be postponed into next year. She and I decide to move forward with planning for the surgery on the 10th with the knowledge that it may be postponed.
I’m thinking at this point: The only thing that changed between Monday’s labs and Wednesday’s labs was that I took the Neupogen. Inquiring minds want to know if it had something to do with this….hmmmm…
I finish up with Dr. M and head over to the Day Hospital for my…
All the nurses were cheering when I walked in because they have been wanting me to put a port in for about 12 years and they knew that today was finally the day. One of my favorite nurses was my nurse for the morning and was so happy to insert my final IV.
I was nervous about getting platelets because the last time I needed them in August (for my biopsies) I had a horrible reaction to the platelets and we had to stop the infusion after only 15 minutes. This time around, they were prepared and gave me tylenol, benedryl and an IV push of hydrocortisone to ward off any allergic reaction I might get. It must have worked because I got through the bag of platelets with only a slightly itchy sensation. Part of that could have been that I had all these drugs in me and I hadn’t eaten yet.
The bag of platelets infused slower than they thought it would and the folks from Radiology (port placement) got a little twitchy about me making it upstairs for my port placement. They sent someone downstairs to do all the intake paperwork with me and then just kept calling every 5 minutes to see if I was done. After my platelets were done, I had another set of labs drawn to see how high my platelet count had gone up. They expect that each bag of platelets will pump you up about 50k. With that number, I would be good to go with my port placement. Finally my mom and I went upstairs to Radiology for my…
I’ll end the suspense by telling you that I currently DO NOT have a port.
I got called back, got gowned and was taken to the room where they were going to do the procedure. The two doctors, Thing one and Thing two, started telling me all about the procedure, showed me what the port looked like (hello, GOOGLE?) and how it worked. I then noticed a plethora of machinery hovering over the bed and I asked if it was going to be directly and closely over me during the procedure. They said that it would but that I wouldn’t notice because my head was going to be covered with towels and a drape through the whole thing.
What was that they said?
I instantly go into panic attack mode and explain to them that I am completely claustrophobic to the point of not being able to have a sheet over my head while I’m in bed and WTF? Apparently the area has to remain sterile and they actually tape something to my neck and then drape the rest over my head/face. I asked if it could be off of my head and just held up but they said not really. FUCK! So I freak out completely and told them I needed a minute and left. I went and fell apart in the ladies room and then decided that I would just deal with it and get the thing done. I’m a big girl now, you know.
When I came back in the room, Thing one had a look on his face and Thing two was on the computer. They then came over and told me that there was a problem. OF COURSE THERE WAS!
Apparently, the post platelet labs had just come in. My original platelet count was 15k. Post-platelets it should have been 65k.
It only went up to 17k.
Thing one went into this whole explanation about what the risks of the procedure was on someone with that low of a platelet count (Again, Hello? Not. An. Idiot.) and that he wouldn’t do it if it were me. The entire time I’m telling him that OF COURSE we aren’t doing it, but he’s so intent on telling me how he wouldn’t do it that he didn’t bother listening to the fact that I was agreeing with him. Then Thing two hollers from the computer something along the lines of “have you seen her white cells levels?” Like they hadn’t checked them. So then I got a semi-lecture about how someone with a white cell count of 0.7/0.2 should not have even been sent up for the procedure and about how Thing one did the procedure with someone like me and they got all sorts of massive infections and were sick for months. Thing two mentions something from the labs so I wander over to where he is when I hear
So there was a table in that area of the room that had all kinds of things on it for my procedure. It is apparently a sterile area and I had almost wandered into the sterile area. The nurses were yelling at me and I’m thinking that if it is such a BIG FUCKING DEAL, PUT A FUCKING SIGN UP! Now I’m nice and pissed off and crying. Thing two is talking to Kristin from hematology, I say goodbye to Thing one and get the hell out of there. I’m a total basket case and A nice nurse brought my mom into the dressing area where I got de-gowned, dressed and just had a good mom-cry.
At this point, I’m tired, frustrated, overwhelmed and really freaked because if my platelets and white cells aren’t good enough for this procedure, how the hell are we going to get them in shape for surgery in less than two weeks?
I get my stuff and we go back down to the day hospital for my…
Red Cell Transfusion:
I was there about an hour too early so my morning nurse asked me what happened. I told her what happened. Imagine, if you will, the Dementors from Harry Potter, slowly moving about the day hospital, sucking the souls out of all of the nurses who, one by one, realize that they still have to deal with my veins. It was a dark time in the day hospital my friends.
They had a private outpatient room waiting for me (with an actual bed, not just a recliner) and I’m not really sure how it all happened but I ended up in the bed and mom was in the comfy chair in the room. Going back to my theory on the neupogen, I got online (LOVE MY IPHONE!) and googled “neupogen platelets” and there, right on the neupogen site, in the “this shit can happen if you take this medicine” list, it says “if you experience bleeding or bruising, call your doctor because your platelets are messed up.” As an analyst, this is where I would start testing to see if this was the reason my platelets went to hell.
I text Dr. M and let her know that a)my port didn’t get put in and b)my platelet count didn’t bump up. She also let me know that the final deadline to get full clearance for the surgery is December 5th. That would be 5 days from now. Not a lot of time.
A few minutes later, Kristin comes in. Dr. O is out for the long weekend so poor Kristin has to deal with me. Overwhelmed, scared, pissed off and frustrated little old me. She has spoken with Dr. O and they have decided to find out why I didn’t get a bump with the platelets. So another set of labs is taken and they are going to try something called HLA matching. This is the same sort of matching process that is used for bone marrow transplant matching. The lab/blood bank has to work its magic to get the HLA things, then it has to be run against platelets in its bank and possibly throughout the country’s blood banks to find bags of platelets that have the same HLA stuff. This could take until the 4th. Even if we get HLA matched platelets, they don’t know if that process will work any better.
So I bring up the Neupogen and am quickly told that it never is an issue with platelets.
I’m assuming that the makers of Neupogen just randomly decided to print that on their fucking website for fun. Just because you have yet to see that reaction happen doesn’t mean that I’m not the first person that you will see it happen to. At this point I’m feeling very blown off. I know that this is all sudden and unexpected for them too but seriously? Especially when what I am telling you is written down on the medication website and I can show it to you. At this point, I was so emotional (and now pissed again) that our conversation was not going to be productive so she gives me a hug, “Happy Thanksgivings” me and goes on her way.
I must say it again, Kristin is awesome. Unfortunately, she is always the one who happens to be there when these stupid things happen and I’m a lunatic. I don’t think she reads this but if she does: “Kristin, I heart you!”
(She probably has a barium enema order pre-filled out for me…just in case)
By the way, have I mentioned that I STILL have not eaten?
So, I eat and sleep through most of the two units.
We left for Norris at 6:00am. We got home at 8:30pm. Long. Day.
This is where we stand:
1. I need cardiac evaluation
2. I am not retaining platelets
3. The neupogen is not increasing my white cells.
4. Not a Wednesday issue, but my fasting blood sugars are still too high. I’m now on diabetes medication #5!
And all of this needs to be solved by Thursday.
I’m going to email my doctors on Monday with my concerns and I have a feeling that my surgery will be postponed. If it is, then it will be scheduled for sometime next year after we can go through and solve these issues methodically. I’m not very comfortable with the way things are right now and it seems like we have too many things (life-threatening with surgery) to fix in a super short amount of time. I am confident that we can get these worked out.
So that is the drama from last Wednesday.
In case you haven’t seen my facebook or the news, USC just lost to fUCLA. I still loathe fUCLA but in tonight’s game, we were simply outplayed by a team that wanted it more.
Still, as always,
PS: the title of my post is from the old Bing Crosby movie “Holiday Inn.” Coincidentally, “Holiday Inn” is the movie where the song White Christmas debuted.