Things have changed again with this damned disease.
At the end of October I've got to see my new pulmonologist and her team and I must say I'm impressed! Finally someone who will answer questions and even put some answers out for questions I didn't know to ask. I saw the Dr., her nurse, a dietitian and the resp tech. This made for a long appointment but I left much more knowledgeable than I entered. Laura accompanied me for the appointment - I'm truly blessed to have such a good friend! Dr Kalluri started me on some medications and sent me for more blood work. The resp tech wasn't able to get me to go through all the paces for the spirometry as I just couldn't breathe well enough. Dr. Kalluri showed me what my CT scans look like and even my uneducated mind could see the differences (the ones that the prior pulmo said weren't much different). The difference in the CT scans before and after the radiation for cancer were SO different!! I was also referred to home care and given a binder full of information (some of which I still can't push myself to read as it is to do with end care stuff)
The down side to the visit with the ILD (interstitial lung disease) clinic was that I was told I am now end stage of the disease. I didn't push exactly what this means but intend to do so next time I see her as I think I've got my head wrapped around it well enough now.
The meds she put me on have greatly helped with the cough - it was almost completely gone but now that I'm decreasing the amount, I'm noticing it is coming back a little. If it only comes back a little, I'm still considering it a win! Just hoping that those horrid coughing spells where I start to feel panicky about not being able to breathe don't come back - they are NOT fun!
Needless to say I fired the prior pulmonologist!! Won't be going back to see him again.
I spent last Friday night in emergency departments because with very little activity my O2 sats dropped to the low 70's (not a good place to be). They did multiple tests and checks to see if they could figure out what had caused the drops but couldn't find anything. No new embolisms, infections or damage to the lungs showed up. The pulmo I saw there said it is likely just the nature of the beast to change. So home I came without any new meds or treatments other than a dose of antibiotics given in the hospital and for follow up I am just to see the clinic as scheduled. I also had my level of treatment assessed and explained quite well. I won't be having any life saving treatments like tubes, ICU, chest compressions, etc. but will be OK with medications and the such to make me more comfortable and treat the treatable symptoms. This was one of the things that was in the binder of info from the ILD clinic but had to be completed by a Dr. after discussion with me. It now resides on my fridge in case of my needing an ambulance or something and will travel with me to Dr appointments and the like with the rest of the binder.
For home care, I have now had 2 of the assessments done - first was the nursing assessment last week and today I had the resp tech assessment. The assessments were pretty thorough and intense and I feel like I'm in good hands. The assessment today will result in me starting on some meds to reduce my anxiety and to try to fool my brain into thinking it can breathe easier. Sounds good to me although I'm not nuts about taking any opiods. Next assessment will be with the OT but that won't be for a while as she is very busy. There is an option for another assessment but as long as I'm able to maintain most of my independence that one won't be happening - in fact, I can't even remember what this one is called.
Wednesday I had the O2 provider here and he upped my O2 settings to the max allowed on the machine. A pretty big jump in my mind, going from 6 lpm to 10. As a result of that huge jump, my mind hasn't been in a good place with thoughts of dying creeping into the forefront fairly frequently. Big downside to the upped O2 is that my tanks won't last very long at all when I go out so I'm foreseeing that I will be even more housebound. Good thing I didn't wait until my computer died before replacing it as it is my window into the world around me.
Oh, and if this wasn't enough, I have blood in my urine probably caused by a cyst in my kidney that may require further inspection and one on my ovary that the oncologist wants checked out again in about 6 months to make sure it hasn't changed. Someone just stick a fork into me and call me done!!
Today I'm in a bit better place mentally but still struggling. I really need to find a better place for my mind to reside than in the dark places it seems to want to stay in lately. Part of me wishes I could jump on the bandwagon of religious faith as it seems to help so many believers. But I just can't get there so need to find an alternative option. Finding something to help me get through this is becoming important as I just don't like the whiny, sad, woe-is-me person I'm becoming and want to be able to see the glass as half full instead of half empty. If any of you have any suggestions, I'll be very happy to listen!
Wow! this was a long post. Guess I shouldn't wait so long between postings in the future.
Signing off now until we meet again.
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