August 11, 2020 at 1:35 pm #15439Bailey VincentKeymaster
If you had pick one organ that’s impacted the most by your disease process… Which is it?
And, in doing so, which doctors feel the most important members of your team?
Mine has undoubtedly been my stomach (as I wrote about recently on Instagram with some less-than-flattering photo memories), or- perhaps more specifically- my whole digestive system. I’ve had more intestinal surgeries than I can count, and am down a colon, large intestine, gallbladder, and beyond.
Because of this, I was extremely close with my colo-rectal surgeon and my GI team… until the former retired, and the latter moved to another specialty. I was crushed. And, though I’ve been working to find suitable replacements and carry on, it doesn’t feel “the same” just yet because I truly trusted them so much.
My new CF clinic has been amazing in terms of lung care, medicine maintenance, and amazing holistic mind-body treatment as a whole (I truly feel so lucky to be with them), but any time biliary backfires or major GI malfunctions happen… I’m still supposed to see those specialists.
I have more thoughts on this tomorrow, but for now, my question is: Which organ hits you hardest, and how many specialists do you see?
August 12, 2020 at 12:07 pm #15444
I think I’m incredibly fortunate in that my ENT is really the only specialist I see separately from my CF team. He works very closely with them, and his clinic is in the same building as my CF clinic. My sinuses have been hugely problematic in recent years, but again, I feel fortunate that this is the only major issue my CF team isn’t able to address directly.
I love that you mentioned your team’s holistic approach to care. My team is also incredible in this area, and I frequently walk away from clinic appointments feeling like I’ve left a really good therapy session! They take such good care of me as a whole person, rather than just addressing issues my body has.
August 12, 2020 at 4:13 pm #15448
Hi Bailey, hi Jenny,
Becky Fox here again. I will take a chance in speaking for Kelly by saying that half of the few times she has been hospitalized throughout her life has been due to gastrointestinal complications. The other times were needed “clean-outs”. So I guess the time has been equally divided. The differences, pain wise, centered on her gastrointestinal system. She experienced excruciating and debilitating distress each time she was hospitalized for this reason (which, if memory serves, was two times). The last time was four years ago, and both times were for bowel blockage. The visit four years ago required the administration of morphine in the ER. What really frightened me was the possibility of a ruptured appendix. Xrays did show that her appendix was enlarged somewhat, and it was suggested that it be removed. Turned out that idea was eventually scrapped, while the doctors continued to treat the blockage. As I have said many times Kelly has truly been blessed by God. Her hospitalizations have been few and far between. Now that she has been taking Trikafta, she is beginning to know what life is like without CF. Her CF doctor has taken her off of one of her aerosols, and one vest session a day. We are looking forward to the day she can ditch the medication sessions completely. 😊
August 12, 2020 at 7:35 pm #15453
Hi Becky, ‘Tis great that Kelly is doing so well. Bowell blockages are no fun. My wife has had not a few since she had a colonectomy nearly 20 years ago (yes her appendix went with it). Before that she was in chronic pain and constipation due to undiagnosed CF where highly irritant mucous caused a ‘hirschsprung like’ megacolon.
I am interested to know what changes have occurred in Kelly’s electrolytes since beginning Trikafta.
Before Trikafta – were serum Potassium levels low? Are they higher since?
August 13, 2020 at 6:14 pm #15463
@rebeccafox Has Kelly had GI issues since starting Trikafta? Some of the worst stomach pain I’ve ever had was when I was trying to find the correct dosage of Creon post-Trikafta. My enzyme needs have dropped from 5 Creon with meals to just 2. Finding that out was a very uncomfortable trial and error process, and I nearly went to the ER one night due to severe abdominal pain. I’m curious if anything similar has happened with Kelly. Have her enzyme needs changed along with her treatment/aerosol needs?
August 14, 2020 at 12:00 am #15465
Jenny, To my knowledge, I don’t believe Kelly has had any complications at all since she started Trikafta. It seems that she told me once that she has reduced the number of Creon capsules, but I can’t remember for sure.
Tim, to tell you the truth I have no idea if there have been any changes in her electrolytes (I doubt if Kelly even knows). I’ll have to ask her. Maybe I can even get her to post a comment on the site. I only see her about once a week (she lives several miles from me and works two jobs so our time together is quite minimal).
Until next time, stay well both of you. 😊
August 14, 2020 at 1:08 am #15467
Nothing should be out of bounds for discussion wrto CF – we do need to recognise that it is a complex disease with so many branches.
The bowel disease that Reva endured for over 20 years was very painful and difficult. There was a large amount of very smelly and irritant contents which was very high in mucous (obviously decomposed abnormal mucous.) Still has an occasional blockage but much less often since being on Creon.
August 19, 2020 at 11:19 pm #15484
I had dinner with Kelly a few days ago, and asked her about her Creon intake. She said she hasn’t been taking fewer capsules (is it in capsules?) since starting Trikafta (takes 5 with meals). Also she drew a blank when I asked her about her electrolytes. She said she has never been informed about them. She also said she hasn’t had any gut pain post Trikafta. Hope that answers your questions. Till next time, take care. 😊
August 20, 2020 at 9:09 pm #15489
Becky, this is amazing! I’m so happy to hear that her gut pain has gone away. Trikafta is doing amazing things!
August 20, 2020 at 11:32 pm #15492
Well Bailey, for a 74 year old woman I’m doing quite well. Thanks for asking. 😊 I have to tell you all about Kelly’s fiance’s nephew. I’m not sure what his name is, but a couple years ago (approximately) he was diagnosed with CF at the age of either 13 or 14. His mom, who grew up with Kelly and my youngest daughte, says his CF is affecting his liver. Have any one of you ever heard of the liver being affected by CF. If I understood mom right, the boy doesn’t take enzymes and doesn’t do therapy. I thought that so unusual.
August 21, 2020 at 3:16 am #15494Paul met DebbieParticipant
Does this person named Kelly know and agree that her medical particularities are being disclosed and discussed on this forum? It feels uncomfortable to me.
August 21, 2020 at 12:31 pm #15500
Paul, yes, she knows. I tell her every time I discuss anything about her. I am her mom after all, and we have an extremely close relationship. You have no need to worry. I would never compromise my daughter’s integrity or her private life, ever. I completely understand confidentiality issues as I worked in a government program for 26 years that took confidentiality very seriously. You will notice I don’t refer to anyone else in my comments by name.
- This reply was modified 9 months, 4 weeks ago by Becky Fox.
August 21, 2020 at 12:58 pm #15503
Bailey, thanks for the info. I never would have thought that the liver can be effected by CF. Proves once more that CF is a full body condition (I prefer to call it a condition as opposed to a disease). Seems you have experienced quite a number of CF related issues. I truly admire your stamina and positive attitude. My interactions with other people who have CF is pretty minimal, so I really don’t know of anyone else who has had liver complications. I do have a friend whose son just had a double lung (second one), and kidney transplant recently. Stay safe, talk to you later.
- This reply was modified 9 months, 4 weeks ago by Becky Fox.
August 24, 2020 at 3:14 am #15508
Yes the liver is often affected. May be due to bile duct obstruction with abnormal mucous but I suspect it is more intrinsic caused by electrolyte inbalance. I prefer to refer to CF as a disability – a genetic disability that is in every cell of the body. While the lungs are affected most commonly by the failure of the lung cells to pump out Chloride, and thus salt, into the airways causing the mucous to be dehydrated and thick (salt is needed to draw water into the airways to hydrate the mucous), the fault is in every cell causing Chloride (an anion) to be high within the cells and needing to balanced by Cations. Therefore potassium and Calcium ions (cations) must be high within the cells affecting cells such as the Adrenal Glands, Cardiac and skeletal muscles, Kidney cells etc etc.
No cell is ‘normal’.
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