August 27, 2013
Growing up as a child in the suburbs of Philadelphia, going to summer camp was always something I looked forward to. It's a tradition I have passed down to all 3 of my children. The years we could afford it, they went eagerly. Each year the focus of the camp was different. Sometimes it was sports oriented or horseback riding. There were performing arts camps, karate camps, Girl Scout camps or even Christian-based camps. Most of the time there were camps that had more of a mixed, diverse offering of activities that kept the kids occupied. One thing was certain that once my kids reached the age of 8 or 9, if they were interested in sleepaway camps for a week or two, my husband and I let them go. We were all for the experience that those sorts of camps brought in fostering independence and a sense of autonomy.
However, I've found it ironic that in the past two summers -- this one and last -- I've gone away to what I fondly refer to as my own summer camps! I may have gone willingly into the UCLA hospital admission system but it was far from the fun summer camps I remembered from my youth! Somehow I think I got the short end of that stick! Both admissions happened while my kids were away at summer camp so in some sense of karma I have to wonder if perhaps that is the time when my mind and my body take a collective deep breath and say OK now -- right now -- we're gonna cause havoc because we can -- she has no kids around and her husband can take care of himself, so now let's focus on Lynda for just this one instance and see what we can get accomplished.
This last admission lasted 6 days in the medical surgical floor of UCLA -- Santa Monica. I was being followed for cardiac monitoring after having been sent to the ER for EKG changes and shortness of breath on exertion. They did a lot of tests on my heart and my lungs and I received a very comprehensive workup. I didn't realize how much HIV can affect the cardiovascular system. I had never really thought about it I guess. It makes sense though because the heart as an organ is simply one big muscle and mine seems to have been working overtime to pump its blood thru my body effectively. There were no blockages found and in the end of my 6-day stay it seems that HIV has just caused my heart to be tired and not pump as effectively as it could. I was diagnosed with HIV cardiomyopathy. I still have a cardiac catherization to deal with as an outpatient to further assess my heart's overall functioning.
My shortness of breath issue became more of a mystery during my stay. It was ruled out that it was cardiac in nature and while it may still be some kind of pulmonary problem, I believe it could be more of an overall weakness in my large muscle groups and then because I am so fatigued I am having a hard time catching my breath. The doctors call this being deconditioned. That is just a fancy word for being out of shape.
I admit I am very out of shape. The HIV makes me out of shape. It affects my large muscles and my smaller ones. My HIV dementia complex gives me weakness in my large muscle groups. AIDS gives me weakness. Me being lazy and overweight gives me weakness. I could go on and on, but the truth is it's all on me. I can only look to myself to blame. Without my driver's license, I am basically a recluse in my own home and I have to really push myself to get any significant type of ongoing exercise. So yes I agree I am very out of shape.
I also am a smoker. I have a 20-year history of almost a pack a day. I really do want to quit. I am trying to switch over to the E-cigarettes and every time I mentioned that to a doctor in the hospital it seemed to meet with approval so I'm left wondering if by this year's end I am totally a vapor smoker will that make me statistically a non-smoker? If that is correct then count me in ... I know I can be there 100% by Thanksgiving -- Christmas definitely!!
So this year's UCLA camp wasn't all that exciting (last summer I was a "camper" for 3 and 1/2 weeks -- in case you all can't tell, I am being sarcastic here!) but I was treated really well by the staff across every department. I started on some new meds. One is a self injection I have to do weekly to raise my neutrophils/white blood cells. My mom, who is squeamish around needles and blood, couldn't believe I had to self inject; she was worried until I reminded her that I have plenty of body fat -- a subcutaneous injection is nothing to me! I also switched to a very chalky, almost nasty tasting liquid medicine to prevent pneumonia and a beta blocker to control my heart rate.
The best part about Camp UCLA this summer -- OK there are three great things -- was that
A) My HIV doctor came to visit me AND had order writing privileges; that was such a blessing! I wasn't used to that with my old treatment team and for me that was worth its weight in gold to know that my primary care physician could be an active part of my hospitalization from beginning to end
B) The wing of the hospital I was in had all private rooms!!! Yeah for more sleep and increased comfort -- I wish all hospitals had this. Truly it makes such a difference in my own outcomes and I was a much better, calmer patient
C) The food service was treated like room service in a hotel. You called a number and got to order off your menu thru lots of appropriate choices and it was delivered in a timely fashion. The food was presentable, warm and it was actually tasty! With all my tests I was kept NPO (nothing by mouth) for several days so I was probably the biggest food critic they had that week because I was starving! So if I say it not only passed inspection, it exceeded my expectation, you have to believe I meant it!!
Now would I rather have been swimming, horseback riding, sitting around a campfire telling ghost stories and singing old campfire songs instead of Camp UCLA? You can bet your bottom dollar! BUT life is what you make of it. This summer I chose to try to take some very big lemons and make lemonade. I learned something new about cardiology and HIV. I learned that last year my EKG showed an elongated QT interval and this year I had inverted T waves and with these findings you are supposed to remember them as part of your medical history like a medical allergy and make sure you tell a healthcare provider when they take your history. I learned how very deconditioned my own body had become, especially in my large muscle groups. I learned how knowledgeable and caring my HIV doctor, Dr. Ardis Moe, truly is. I learned that I need to really watch and stay on top of my white blood cell count AND my neutrophils or I could be in danger very quickly so it's important for me to self inject that Neupogen religiously once a week. I learned how important it is to be honest and keep the lines of communication open with my team of doctors and to write down portions of my medical history so I can tell a doctor or nurse what they need to know quickly and efficiently, especially these new items with my heart.
Finally, I got to spend some quality time with my husband and one son who had already finished his basketball camp, ironically at UCLA, the week prior -- just sitting and chatting as they came to visit each day. I was grateful for the company and the laughs and I know they were grateful to try and slip out as soon as I started to drift off to sleep. Let's face it: hospitals are not a great place for socialization. Basketball camp was significantly better, my 14-year-old son informed me upon my arrival home. Phew! I knew I raised those kids right! :-) He could see thru my BS. I guess I was the only one drinking the lemonade that week!
Until next time ...