Curious & Concerned

C

CFBROTHER

Guest
I do not wish to bring any rain to an already cloudy situation, I simply wanted to hear some responses from other CF patients and/or family members of a CF patient who would know how I have felt for years. I guess I will start from the beginning of my story and then ask my questions. I lost my baby sister in 1990. After a 3 year battle with complications from a combination of CF, a liver transplant, and ultimately diabetes, she passed away at home - 5 days after her 12th birthday-3months after my 13th birthday. I cannot begin to describe the incredible determination and willingness to overcome seemingly impossible obstacles that Leisha possessed, and over time(when she was alive and in recent years) I came to realize that most patients diagnosed with Cf, young and old, possess those same super-human like qualities. The unsurpassed ability to spread smiles in a world full of pain and suffering has never ceased to amaze me. For years, I questioned my Mom, doctors, and God himself in my prayers why I hadn't been the one who was born with CF. My sister was the second child from 2 parents who carried the gene - I was the first! There were many times that I wish I could have switched shoes with her even as a young child. Leisha and I used to climb the steps of Reunion tower in downtown Dallas when we were kids to benefit CF and every year I would cry on the way up. Not because I had to wait on Leisha but becasue I couldn't understand why someone so full of life couldn't keep up with her healthy brother. Of course as years passed I understood why she couldn't keep up physically, but I also realized over time that she was years ahead of me in determination and inner strength. The one thing in life that got my sister down on others is to see or hear their pity for her. She wouldn't have it. She would never show defeat no matter how bad the pain and no matter how difficult the struggle. I saw that little girl take Pancrease everyday of her life among many other meds CF patients are accustomed to taking. After her transplant, I then saw her take thousands of dollars worth of Cyclosporine everyday on top of other anti-rejection drugs until her death. I am now 27 years old and think about her all the time. I wish we were still 8 years old and going to CF camp at Camp Sweeney in Gainsville, TX, but the camp was even difficult for me to attend after a few years because of the loss of life every year. Every fall I would go and meet up with all my old cabin mates from the previous year and every year there would be one or two missing from the group. I still have a picture in a safe that was from 1984 at camp. That was one of the greatest weekends of my life that I will never forget. I met so many incredible people that year who have influenced the person I have become today simply becasue they were who they were. I remember very few names but I remember ALL of their faces and about once a year, I dig out that picture and it rushes back to me like it was yesterday. One of my sisters very close friends was Stormy Jones. Do ya'll remember Stormy? To my knowledge, my sister was the very first FEMALE CF patient to ever receive a liver transplant and that is when she met Stormy. They were friends until her death. If anything I have mentioned in this letter strikes your memory, please email me and share your memories. These are the times with my baby sister that I will treasure forever and to hear stories from someone else makes them even more special. Has science progressed? Is the life expectancy greater now? Do patients still have to take breathing treatments daily? What has changed? Please let me know if this article means anything to you. My baby sister has been gone for 14 years this April and I no longer live around CF patients, but her memory and my love for people like her and you will never leave my heart. I thank all of you for your time who took the time to read this and look forward to hearing from you all! Take care. With love from TX - Larry McCarthy, Brother of Leisha McCarthy (4/4/1978-4/9/1990)
 

Diane

New member
Hi Larry, Your story touched my heart in a big way. The love you have for your sister is beautiful. I lost a friend to cf 21 years ago. He was 15 years old, 4 days shy of his 16th birthday. I still cry for him and miss him. I have always known he is watching over me and protecting me, as im sure your sister is you. I know memories can hurt, even the good ones, but thank God for those memories, they are cherished times. In answer to your question about science progressing, it has, but slowly. I dont know what everyone else does for their cf, but i inhale pulmozyme ( helps to thin the mucus) every day ( once a day) and tobi( ihaled antibiotic) whenever my doctor rotates me onto it. I also take oral antibiotics all the time, since i have b.cepacia ( antibiotic resistant bacterial infection in the lungs). The average life span is supposed to be somewhere around 34 or so these days. Im not sure how much has actally changed in the past 14 years, except that we now have tobi, and pulmozyme, and maybe a few more oral antibiotics. There is research being done now about glutathione possibly being a treatment for cf. I am currently taking oral glutathione and have noticed it definitely gives me more energy , which nothing else i ever took has. I am hoping they complete the studies in a timely fashion, so every can benefit from it , if it is a viable treatment for cf. Oppsie on my part, i forgot to mention we now have something called " ThAIRapy Vest" It is a vest you wear( reminds me of a life jacket) that is attached (with hoses)to an air compresor that pulsates and helps to loosen mucus from the lungs. Seems to help, and sometimes actually feels good <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope this helped answer your questions, and im sure if i left anything out someone will fill you in on it. Take Care and God Bless <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane 39 / cf / diabetes / b.cepacia
 

anonymous

New member
Larry, you are a special person. I admire your love for your sister. I have a 7 yr old daughter with CF. and two boys, 13 and 11 with out CF. When you were young, were you ever jelouse of your sister and the attention she needed? My 11 yr old is EXTREMELY jelouse. I don't know what else to do for him. I try to give him attention and explaine that he is loved just as much, but it doesn't seem to sink in completely. This past 12 months my daughter has been in the hospital 5 times, and has missed more school than attended. Each time she is in the hospital I go with her. These are the only times I am away from the boys. Any suggestions from a brothers point of view would be appreciated. I pray that he will grow up feeling as you do.
 

Dea

New member
Hi Larry,I am sorry about the loss of your sister. It sounds like you were the best a brother could be. I am a 30 yr old w/CF. I also have a younger sister 29 no CF, and a younger brother 23 with CF. I think she had great support from you and it touched my heart when I read that you would have switched shoes with her. When I was younger...I use to wonder why me.....but as I got older and understood more...I am glad it was me...and not my younger sister. I only wish I could have taken it from my brother too. I do not wish this disease on anyone...and if I could double my problems to keep him from having it.....I WOULD. Medical technology is changing everyday and I soon hope there will be a cure for this disease. My daughter is a carrier....and I pray that she will NEVER have to worry about this disease EVER. There are so many new meds out there to help keep us all as healthy as possible...and that I am thankful for. When I was born in '73 I was never expected to live this long. I now believe that I will watch my almost 6 year old daughter grow up, go to college...and even get married! This disease has caused other complications to my body......but I am going to conquer it! I love my life and wouldnt change it for ANYTHING! It is who I am. Take care and God Bless!Dea
 
C

CFBROTHER

Guest
I really admire your position taken with your son - it is very similar to the position my mother took. Of course you have to give your son attention because he sees all the attention of your daughter, but as he gets older that attention to her will double because of the attention he will then extend to her. It took me years to get over the "selfishness" of having a sister with CF. At times I really couldn't have told you why I was selfish I just know that I wanted the same attention. I think you and I would both agree that once the true reason of the attention was rvealed to me I then at that point realized I didn't want the attention because of the factors that attributed to that attention - her illness. I can't explain the jealousy I felt at times and in all honesty I was not always the big brother I should have been because of that jealousy, but when I started to factor in all the medications, the bloodwork, the breathing treatments, and constant poor health, I began to realize that it was more important to my sister that I support her in any way I could and to help her enjoy her life with a brother the best I could. I could have been a better brother and I think about the bad times often and wish I could turn back the hands of time though I am fully aware that I can't. So my words of advice would be directed towards your son. Kiddo, be the best supporter your sister could ever imagine. If she is not down on life and happiness don't bring her down and if she is having the best day she could possibly imagine, do your VERY BEST to make it even better for her!! Tell her you love her everyday and do little things to show her you appreciate her. You'll learn as you get older and your mother lets you read this message that no one is here forever and you treat every meeting with someone that is dear to you as if were going to be your last whether they are ill or not - if you love them then they deserve your love - don't make her question it - make her feel it!! Learn her everyday procedures - help her with her breathing treatments, teach her to toss her meds in the air and catch them in her mouth, and most importantly - play hide and seek with her and let HER win!! Take care and I look forward to talking with you in the future. Larry McCarthy
 
C

CFBROTHER

Guest
Thank you so much for the updates on meds. As I said before, my sister had always taken Pancrease, Prednisone, and Cyclosporine. Those are the main ones that stick out in my head though some were for anti-rejection of her liver and not CF. There were so many and it was so long ago my memory is wearing thin! The "thAIRapy Vest" sounds wonderful! The main reason I asked about the progression of technology and medication is to see if CF was getting a little easier to deal with. I use the term "easy" loosly and I apologize because I know this is not an "easy" disease to deal with at all, but I guess with scientific progression anything could get "easier"and in a way by me finding this site I can keep up with progression and talk to wonderful people such as yourself since I no longer have the luxury of having my INCREDIBLY smart and wity sister to keep me updated and smiling! Take care and God Bless! Larry McCarthy
 
C

CFBROTHER

Guest
Dea, I could fill up an entire website praising you, your family, and your younger brother, but people need their sleep right! God Bless any family and two children that can battle this disease together and thank God that you have your brother and your brother has you. There are a lot of words that probably go unsaid between the two of you simply because you two are connected in a way and there is a mutual understanding that you feel in your hearts. Just by reading your letter and envisioning the type of person you have become because of CF, I definitley know one thing about you already - you will conquer this!! God has placed a hurdle in front of you that most could not even attempt to leap over, but I feel in my heart you have already soared past it!! I firmly beleive that there is one type of person in the world that could carry the burdens and hardships presented by Cystic Fibrosis and those people are angels!! My heart, prayers, and brotherly love go out to all of you!! Thank ALL of you SO MUCH for letting me express my selfish emotions and heartache to you and for being so understanding to someone whom really has no idea PHYSICALLY of what you are going through. I salute each and every one of you as a brother and a friend. Thank you!Larry McCarthy
 

anonymous

New member
Larry, thank you so much for sharing your feelings. It is great comfort to know that you were jelous when young and did outgrow it as you matured. Your sister was blessed to have you! I will continue to try and help my son feel just as loved and pray that he comes to a better understanding of his sisters situation soon. Thank you again
 

anonymous

New member
Larry, I am the 29 yr old sister of Dea's w/o cf. Believe it or not, I used to have the same feelings as you towards my sibblings. Having an older sister and younger brother with cf and me stuck in the middle. I have said in the past and I will say until the day I die, I whish I could take their place so they can enjoy life with out coughing, hurting, taking meds, etc... I love my siblings with all my heart and soul. Should anything happen to one of them, would just tear me to pieces. I would do anything for either one of them. The most important thing for me to do for them is love and understand. Unfortunately I can not feel what they are going through. They both live an hour or so away, so we don't get to see eachother often. But now that we both have kids, we try and get together as much as we can. I try to talk to my sister at least once a day. I do not want to miss a day just in case anything should happen. I admire you and your strenght. Your sister is very proud of you. God Bless and take care.ps. and Dea stop making me cry!Kay29 w/o cfsibling of sis 30 w/cfbrother 23 w/cf
 

Dea

New member
Kay,This is funny...I was reading your post...and was starting to get teary eyed...then I read your last sentence...I couldnt help but laugh! Made me smile!Love Dea
 
C

CFBROTHER

Guest
Kay, Isn't it strange that brotheres and sisters like us would be more than happy to change shoes with our siblings in a heartbeat, but when it comes down to it THEY wouldn't trade even if they could!! It makes you wonder if Angels really do exist here on Earth! I've said before that it takes a special person to carry this disease and that the weak and weary need not apply - CF patients are their own breed of Angel and will hold that status forever! Thank you for your reply and I look forward to hearing from you in the future! Larry McCarthy
 

Dea

New member
Larry,I want to thank you for the kind words you wrote about CF people being angels. I dont look at myself in this way by any means...I am just a normal person living with a disease that I must fight to remain alive. But you saying this reminds me of a song...that I loved from the moment I heard it....it is by a country singer named Tammy Cochran. The name of the song is "Angels in Waiting". It is a beautiful song that this woman wrote about her 2 older brothers that died of CF. If you get the chance...listen to it....I know it will touch your heart! Take CareDea
 

anonymous

New member
Hi Larry...I am a 23 yr. old woman with CF. My brother also had CF and passed on 3 years ago. When we were younger all we did was fight and were jealous of eachother and I used to wish I was an only child. But when I turned 18, I moved out of state and a few months later my brother followed. Everything was put behind us and we relied on eachother. We were all eachother had with our parents 4 hours away. I was lucky enough to build a bond with my brother that I know is still there, even with him gone. Lately, I've been feeling sicker and more tired than usual and I often think of him and know he's here with me now. I know he is in a better place where he doesn't have to suffer.
 

anonymous

New member
I have cf and a little brother without cf. I am 20 he is 15. I get upset sometimes because of the worry and pain I put him through. He is just 15, he should be worried about girls not his sister. When we were younger we fought alot too. But now we are like close friends. Its really neat. Although I have moved away and don't see him much, its great when we get together. All we do is laugh. But I hate the fact that when he was much younger although he seemed to be jealous he was really worried. He had to go to the school counselor and all he would say is he was worried i wouldn't wake up one day. Or when i would be up coughing all night it would wake him up and he would come check on me. I love him so much. Yes it is true if i could trade cf with him I would never do it, not with anyone. I don't see myself as special or an "angel" I jsut do what I need to. I like making people happy and hearing people laugh. Larry I didn't start this post to talk mainly of that. I used to go to the childrens hospital in dallas. My doctors were Dr. Kramer, Dr. Prestidge and Dr. Brown. I even went to a cf camp when i was around 6 but i forget where it was and the name but it was an indian type name. I loved the camp. But i feel awful that I can't remember names. I was to young i think but i remember the people. It was a great time. Sorry I am not much help but I thought I would tell you that part. I would still be going to the adult clinic in dallas but I moved so I now go to a clinic in san antonio. I am glad you posted. You are a very caring individual yourself. Amandaps if you would like another community to look at or ask if they recognize any name there are over 630 memberhttp://groups.msn.com/CysticFibrosis2chat/homepage
 
C

CFBROTHER

Guest
Amanda, Dr. Kramer and Dr. Prestige(Dr. P) I remember very well, but Dr. Brown doesn't ring a bell. Camp Sweeney evolved into a childrens cancer camp shortly after my sister passed, and now I think it is a diabetes camp - not 100% sure on that but that is what I was told. If you attended a camp at 6, that is right around the time my sister became very ill, so I don't think we would have met at camp but it is very possible you were attending Camp Sweeney. Talk with your folks, I bet they'd remember. Thank you for the other CF link - you'll definitely see me on there in the near future. Thank you for writing and please keep in touch. Also, anyone who attended Camp Sweeney, please feel free to send pics to me or write about your time there. One more thing - my sister had a friend and I remember her name - she is married now and I believe lives in Oklahoma - her name is Vasti Berkey(maiden name). If anyone knows how to contact her, please let me know.Larry McCarthy
 

anonymous

New member
Larry,It is strange. They wouldn't let us have cf if they could. I think I would have to put up a fight on that one. I was with my sister today for a few hours and it was nice. Actually I have seen her twice in the past 4 days YEAH!!!!! You are such a kind person. Take care of yourself. Your sister would want that.Kay29 yrs w/o cf2 siblings with
 
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