kathy-gunter
Forum Replies Created
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William, your team literally sounds dreamy! What I would give for a feeling like that from clinic! My current team is good, but small (one doctor with a new one on his way) at a very small clinic with none of the traditional “frills” of CF clinic. But the doctor, when he is available, is caring, kind and knowledgeable. However, I get the distinct feeling that I’ll never be able to bond with anyone on the team. They are too busy and pulled in 40 directions. They simply do not have time to devote to an aging, broken down (read hopeless as far as treatments go) CF woman.
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I almost never post or reply, but this one strikes a nerve since Covid seems to have dictated our lives for so long now (in large or small ways, depending on each person’s approach). I am 53 – late diagnosis at age 12 due to rare mutations. However, I have “moderate to severe” lung involvement now, so Covid quite literally scared me out of my wits. I do agree with another post that diet, exercise and other means of taking care of one’s body and mind help tremendously; however, I suspect most (if not nearly all) of those who have posted have the added benefit of modulators. I do not, so I knew I’d be 100% on my own and hope my body would hold up. As a result, I quite nearly retreated to hermit stage for at least the first year. My husband and I (no kids) masked absolutely everywhere until very recently when I finally decided places like Lowes or other large open warehouse type areas seemed to be an acceptable risk. We are both as vaccinated as the CDC allows at this point as well. Nearly 4 years in and neither of us have had Covid. We live in the South where only about 50% vaccinated at all and almost no one masked up. (My own family refused to vaccinate or mask up- 3 of them died due to complications from Covid). To put it mildly, Covid has been a hot button in our family and within our circle of friends.
I hope I don’t regret it, but just within the last week I have relaxed a little. My husband and I had our first “date night” this week and actually went inside and ate in a restaurant (as opposed to drive-thru). It was delightful! It felt like I’d awakened from a horrible dream! I’ll tip toe back into life a little bit at a time and hope nothing new raises its ugly head to take that freedom away again. I’m not so terrified of death, but I know enough that I don’t want to go that way, if I can prevent it.
I wish you all good health and happiness. Thanks for sharing your lives on this site. It really does help me not feel so alone in all this.
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Exhaustion from the build up of inflammation and infection? Honestly, I really feel like I should go in more often than I do. I have been averaging once or twice a year now for the last 3 years. Although by sheer Grace I have been mostly stable over that time period, because of covid numbers taking up hospital rooms for so long (and my team discouraging inpatient stays to keep me safer leaving my only option home IV), I haven’t been in as often as I’d like or think I really should have been. We call it a “charge the battery” session. Although the actual IV drugs while in the hospital generally drain me and make me wonder sometimes if it is all worth it, after the horrific side effects have worn off after a couple of weeks at home, that is when I really feel the benefit of the stay. My energy begins to rebuild and I can breath a bit easier! I suppose I should mention that I am 52 and not eligible for any of the modulators, so I’m still “old school” with treatments and so forth. I know the CFF has good intentions, but I truly feel that with the rarity of my mutations and length of time it takes for new treatments to actually get to patients, I will be left behind. Gotta hope and pray that I am wrong on that note. At last clinic visit, my FEV1 was 36%, so I am hanging on by a thread. So far, I have been blessed not to have had Covid – not sure how I’d fare without the benefit of a modulator to help me through it.
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Stacy, I am so sorry to hear of your situation too (see reply to Kay below). I wish there was a way you could be seen at UNC more often? I have been very curious about their clinic as well. My brother lives part of the year in that area and loves it. It seems to me since Covid, care has slipped quite a bit. Some of that is due to fewer staff and some may actually be due to staff burn-out. Maybe they are numb now and just jaded with a loss of compassion for patients? Whatever the reason, it is palpable – you can actually feel it in the room. Nothingness from so many – like zombies going through the motions. I get it and I actually feel for them after what they have been through, but in our situation, I am really worried. Where does that leave us in our darkest chapters?
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Kay, I am so sorry to hear all that. Truly…and I can relate. I once had a horrible situation at a center and I left. I don’t think I was ever wanted there and clearly I wasn’t (as no one ever reached out to me after-the-fact). Like you, when something was wrong, I tried (as politely as possible) to request help or a change. It was not well-received and all I got there was cold detachment and the distinct feeling that I was somehow bothering them. It even got back to me from other employees (nurses, etc..) that one of the doctors and one of the nurse practitioners joked behind my back and called me “crazy” and demanding. I wasn’t. And, although I suffer from anxiety like a lot of us, I am not crazy. Apparently, anything less than perfect behavior as you are dying is unacceptable? I have resigned myself to early death with very little medical intervention in this new environment post covid unless God has other plans and intercedes with a Miracle. At least I have lived into an older age, for CF, which is much more than some ever received. My sister passed away at the age of 16 and never got great care as it wasn’t really available back then.
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Thank you for your well-wishes. I’m sorry. I reread my post and I wasn’t clear. I am not eligible for the modulators due to my mutations, not my age. Sorry for the poorly worded sentence/confusion.