I have now had all my home care assessments. Primary nurse, OT, RT, and nurse practitioner. Confusing as I'm not sure exactly what I should expect but it is really nice to know that I have the support in place now.
Will be starting on a new med to help me think I'm breathing easier and have a walker that accommodates 2 tanks (but is heavy as hell so I'll need help loading/unloading it in/from the car).
Had the O2 provider here again and am now in the process of waiting for the results of my funding appeal. Was to have had the RT arrive within 48 hours of the blood gases but the weather and scheduling didn't work for him to get here on time. As a result, my funding was denied (again). May have to go for another blood gases and again get him here within the 48 hours. Aggravating - what are they going to do - remove my oxygen - and how long will I last if they do? When he was here, he dropped off a mask so my poor nose could get a break. The higher oxygen flow meant my nasal cavities felt like they were on fire! The mask is a bit of a nuisance but it gives my nose a break which I really appreciate. Will be getting another machine that will piggyback with the one I have as my oxygen needs have increased again when exerting myself (such as going to make a coffee or go to the bathroom - you know, major exercise!) Hopefully I'll get the machine on Monday.
Have been trying to contact my GP for the results of my lab work a couple of weeks ago. Kept running into a not-so-cooperative desk clerk who either didn't pass on the message to the Dr. or didn't explain why I don't want to come in to the office. Finally got a clerk who was having a better day but the Dr is away for a couple of days now. Hopefully she will call me on Monday. Apparently I have a cyst in my kidney and one on my ovary. May have to go for more testing - yuck!! The oncologist wants the ovarian cyst watched but the kidney one is probably not going to be a problem (other than making my urine have blood in it). Will wait and see what happens with these cysts.
Not health related - my son has decided to take me up on my offer of moving in with me for a little while. He got himself in some financial hardships when unemployed and this will help him get out of the hole. Not much else I can do to help him out. He's allergic to my cat so he may have to start taking allergy meds. Hopefully we can keep the cat out of his room so he has a safer place to go. Much as I love him, I'm not about to get rid of my cat or dog (personally, I don't think he would have any issues if I got rid of the dog but he does like the cat)! In the meantime, my craft room is inaccessible (and I haven't been able to make many Christmas card so may end up sending after Christmas cards to the people on my list instead) and the rest of my house is full to the brim with his stuff and mine. Trying to fit 2 homes worth of stuff into one small mobile home is ending up with me going crazy!! I'm so used to having things where I want them and now they are everywhere! I sure hope that he is able to start organizing things better soon - I think he has almost everything here now.
Christmas is fast approaching and I've been keeping my fingers busy with crocheting gifts for everyone on my list (and then some). As I don't know what next year will bring, I've decided to make items for many of my relatives and friends. Trying to make things that are practical but some are kind of fun too. (I won't go into what they are just in case someone decides to read this page). Going totally bonkers with my newest production - something that should be fairly simple just isn't cooperating! I'm on my 2nd attempt, having ripped out the almost done item when the first try didn't work and now I'm thinking I may have to start ripping this one out too. Don't know why I have such a problem making a hat that will actually fit a head smaller than Frankenstein's!
Guess that about wraps up what I have to say today. Talk to you again.
Friday, 30 November 2018
Friday, 16 November 2018
Great New Dr and Some Not-so-good News
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.
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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