Newbie here feeling very alone & depressed with CF

[dlaz]

Hi, my name is Danielle..I've been reading posts on here for a week or more now and finally joined. I'm 33, have an incredible husband who was my highschool sweetheart so we've been together 19 years now. We have 2 kids, my son who is 13 and my daughter who is 9. I've been through so much I wouldn't even know where to start, I've been very ill to the point of unable to leave my home (other then hospital or doctor visits) for over 3 years, I've had surgeries, had to stay in hospitals in different states away from my children even for months at a time. I never knew CF ran in our family & given my age the doctors never thought to test me for it until just over a year ago. That's when I found out I had CF, up until then I was diagnosed with SMA syndrome, had a j-tube (feeding tube), chronic pancreatitis, IBS, bouts of pneumonia and I've been on 33 prescription drugs at ONE time, now down to about 27 I guess.
We are at the point where they want to do a pancreatectomy with Islet cell transplant.... I'm so scared and I feel so alone here, I'm constantly trying to hide the pain from my children & husband. I try not to complain too much because my husband is so stressed out about the CF diagnosis and all the organ damage I have going on (pancreas, liver, kidneys) and he just feels like he should be able to do something for me to take it away. My lungs arent in the best shape right now either...
I guess I'm just looking for someone to say "I've been there, I know how you feel, I'm going through the same thing" and tell me how they are keeping it together.... I know what statistics say about the average age a person can live to with CF but I want to know there are people out there who are well over that "average age" and doing well. I'm scared of missing all kinds of life milestones, especially when it comes to my children. I want to be here to meet my grandchildren, to see my little girl get married, see my son graduate college. I just need some encouraging words.(BLOW)

 

[JENNYC]

Hi Danielle!! I am so glad you spoke up!! So very glad to have you join us! While I can't say that I've been there, I would like to say I am so sorry that you have been through all of that! CF is so cruel! I love your story of you and your husband!! I started dating my husband when I was 14 and we have been married for 14 years now and have 2 wonderful children as well! I do hope that you are going to an accredited CF center so that they can fully help you get to the healthiest possible. Have you found out your gene mutations yet? These days it is very very important to know your mutations. I don't know if you have been following all of the wonderful stories about Kalydeco or not, but my daughter is doing really really well on it and she does not have the G551 mutation. If you can get your doctor to let you try it and your insurance company would agree to it, you could try it and see if it is your miracle as well. If not there is so much in the pipeline right now. There are trials you can get in on as well. It is so exciting all the wonderful options that may be opening up for everyone. While I can not begin to imagine what you are feeling as a mom, or wife, or even an individual...I just want you to know that there is hope. You came to the right place. I have made some amazing friends on here that will see you through the hard times. Friends that I will cherish forever and could not get through the rough times without! Lots of Hugs to you!! Keep your chin up!!

 

[bcl0328]

i am younger than you (25) and i dream of having a wife and kids, so you are already living my goal. how are your PFTs? i'm going through the same with the liver and pancreas damage. just taking it one day at a time and trying to control what i can.

 

[Aboveallislove]

Dear Danielle,
I can only imagine how horrible life must seem now, but thank God you finally have the right diagnosis. I'm hoping Printer can respond with some of his history and recommendations re the procedure/doctors. He's in his 70s and I believe had a very late diagnosis and MANY pancretitis spells. As Jenny said, you need to know your mutation--there are some great drugs that can help if you have one of the "lucky" mutations, which given your age, is very very likely. If you post, we'll try to find the info for you on that. Saying extra prayers for you today too. Hugs

 

[azdesertrat]

Danielle; first & foremost, you are not alone. There are many of us out there who have been through the crap for plenty of years.
I was afflicted with bouts of pneumonia about every 3-6 months before I finally had to have a double-lung transplant.
Don't worry sister; just take things as they come.
God has instilled in you an incredible amount of strength & the ability to tolerate just about anything. You'll be amazed after your health finally stabilizes at the things you've tolerated.
In the end, a person will do just about anything to stay alive.
Hang in there.
As far as letting your husband know of your pain, share it with him. He should be your Rock through all this.
My wife has always been there for me; for over 20 years.
She knew after we had only been dating a few months that I had CF & I didn't keep from her the things that could (& did) happen.
We don't have any kids because like most males with CF I'm sterile. I'm glad we didn't. I don't know how I would have been if we had.
Anyway, I know things will get better for you; its just going to take a bit of time to get you stabilized. There are great strides being made in the care of us that deal with CF. Hang in there Girl. Contact me if you want to talk.
Best of luck to you & yours, 'Pat'.

 

[Printer]

Danielle:

Before you do anything I would ask you to GOOGLE Steven D. Freedman, MD, PhD. He is the countries leading expert on Adult CF/ Pancreatitis.

I had over 70 hospitalizations over 10 years before I was dx with CF. Feel free to send me a Private Message.

Bill

 

[dlaz]

Thank you all for the encouraging words. I live in PA, I had surgery for my SMA syndrome and the J-tube put in up in Massachusettes where my sister lives. Since then (2009) I continued to do follow up care here in PA with my GI specialist (wonderful doctor) not knowing I had CF but had all of these problems he just got to the point where he told me he couldn't help me any furyther and sent me to a doctor at Maryland University Hospital which is where the discovered the CF so I had been seeing thier GI specialist and another pulmonology specialist. I had stents placed in my pancreas but they fell out within a week.....It was a very long road once I wasn't able to work anymore, I filed for disability and of course it took the denial and year long wait to see an administrative law judge who was floored that I was denied in the first place. So during that time without any income other then my husband we couldn't afford the medical care anymore. I'm due to recieve medicare in November which is when I'll be able to have the pancreatectomy in Pittsburgh. Reading all the posts I now see that this plan is much more difficult then I thought (not saying it would be easy though), I'm on the complete other side of the state so around a 5/6 hour drive or better all of the pre-op and post-op seems like I will be away from my family for yet another long stay and once done I'm afraid of what shape my other organs will be in. JennyC, I was told they did not know what my gene mutation was & possibly something undiscovered yet. Someone above asked how my PFT's are....I don't know what that stands for though but I would like to know so I can answer...
Printer, seeing that you are 72 is very encouraging and I will be sure to read up on the doctor you mentioned.
azdesertrat, I loved reading that your wife is your rock and I understand what you mean about letting my husband know of my pain I'm just afraid.....since I got sick it's like our entire lives have been consumed with CF. My husband actually suffers from Chrons (crazy, right? He had to have some of his intestines removed & has his issues) he also had 2 TIA strokes last summer (he's only 34). He is my rock and I am his it's just that sometimes I feel like if he sees one more tear of pain come down my cheek it will be the straw that broke the camels back and this camel has one hell of a strong back! He works very, very hard everyday doing very physical labor to keep our shelter, food and clothes. Before I became so ill I worked 50hrs a week, in at 5am out at 3pm, I was the soccer mom, go to girl who never took two minutes to rest until my head hit the pillow for my few hours of sleep at night (sometimes not even when the kids got sick, etc.) I know how difficult it is for him doing everything, the kids help as much as possible but sometimes I think they're being robbed of childhood having to grow up so fast and take care of me so much. I feel helpless, ya know?

 

[AUG19DW]

I have a son that was diagnosed with Pancreatitis at age 15 and found out he had CF and also my daughter was tested and found positive for CF also. I do get where you are coming from about being devastated with the diagnosis. And just to let you know my son had the Total Pancreatectomy/Islet Cell Transplant at age 17 at the Univ. Of Minn. with Dr. Sutherland back in 2008 and is doing pretty good as far as no pain now. Just of course dealing with the other issues from CF now. But at least the Pancreatitis and excrutiating pain is gone. And no insulin since 6 months after the surgery either. We live in VA and they are now doing this surgery at UVA with Dr. Brayman that studied under Dr. Sutherland in Minnesota. This surgery was a life saver for my son and he was able to have his life back at 18 finally. If you would like to talk more about the surgery email me aug19dw@aol.com

 

[beleache]

Hi Danielle,

I understand your fears completely.. I was also a late diagnosis @ 44 y/o & felt that I had already lived past my CF expiration date , so I was scared out of my mind..

It wasn't till a few years after diagnosis & I had renal failure , that I realized I was wasting precious time worrying (not to say i never worry, but not like i was) & not enjoying life to its fullest possible for me.

As you can see from my info I am now 60 y/o & am so grateful for each day I have on this earth..

I did seek therapy/meds for a while & found it very helpful. But most of all , I put my faith in God. I pray for you to have peace in your life ..

PS Welcome to CF.com ! joni

 

[dlaz]

Wow, thank you for sharing... I can't imagine having a child with CF you must be a very strong person. Of course I do realize my children are carriers and I thank god for my diagnosis for that reason alone, so they will be able to do the necessary testing when they find their partners to avoid risking having a child with CF.
So your daughter is also positive? What type of issues have you had to handle with her? Is it as severe as your sons? Also, how long was the recovery period for your son? I'm sure being young he made a more advanced recovery then someone my age I'm sure but I'm still curious.

 

[JENNYC]

PFT stands for Pulmonary Function Test. It's where you blow into a machine that measures your lung capacity. And I would really push for the Free MAP test to find your mutations. If you tell your Pulm. next time you see them they should be able to order the blood work needed to find out your mutations. They should be able to find them no matter how rare. On Abby's 2nd mutation only 12 people on the CF database has it. It takes a little while to get this test back, but it's well worth it in this day and time. This new medication that is out right now is improving peoples life incredibly! If you have the right mutation you need to get on it as quickly as you can to stop further progression of the disease and to make you feel better. Sorry to sound redundant, just really think it's very important for your whole family's sake to know your mutations. Since your children are carriers than they need to know what mutations they could possible have, as I don't believe that they do full panel testing for new borns or prenatal screening(could be wrong about that), where as if they could tell the drs what mutations to watch for that would be helpful. Lots of luck to you!!

 

[JennyCoulon]

The first thing I want to say is it is okay to break down and cry with your husband. Being a mother of a soon to be 13 yr. old son and a 7 yr. old son both with CF and a 18 month old daughter without CF I have days where I just break down. I feel a huge burden taken off of my shoulders when I do this. This is something that my husband and I do in private away from our children. My children are very healthy and I can only hope that they stay that way but I know there are no guarantee's of anything with this disease. It is okay to be scared but at the same time to be relieved that you were finally diagnosed correctly. There are a lot people on here that can give you their great advise, some of which you will take and use and some of which you will choose not to. I do hope that you do start to not feel so alone and if you do there are many people here that you can chat or message. Good luck....

 

[roses_6581]

hey

I am Joe 31 with Cf, cfrd,gastroparsis, depression, ADHD, and some other health problems. I got transplanted in 2008 and been feeling good most of the time. I go through aces and pains still at times. My pfts ate still in the upper 70s lower 80s. I am on about 25 to 30 different meds myself.. I am also new to this site joined maybe a week ago. This is my first post I actually answered. But yes I feel your pain and worries!! If you ever wanna chat feel free to let me know or private message me and I'll give u my email address and facebook name.. Keep your head up!!

 

[azdesertrat]

Oh man, I hate it when we (CFer's) are given an 'Expiration Date'! I'm pretty sure that had a huge impact on my younger days.
I remember the doctors whispering to Mom; 'People like him don't usually last past age 12".
Of course, when I failed to die upon expectation, the year was changed to a year or 3 past.
As a result, I spent high school smoking pot across the street from school or ditching school & going to the river or lake, or drag strip or (insert activity du jour here). Anyway- you get the idea.
Back to my point. Danielle, I'm very glad you have a partner as good to you as I enjoy. Crohn's is a hard SOB to beat too. He must be one tough individual. I know it's hard on our spouses.I can't believe 'They' gave you such a rough time when you filed for disability. My wife filed for me when I was in a coma due to respiratory failure. Got it first time, no problems.
After I was unable to work any longer, my wife went nuts. She started working 6 days a week, 12-16 hrs. a day, I'm still trying to get her to slow down a bit.
I hope you can endure your sugeries and please, start getting better. If there is any way I can help, feel free to contact me.
Life aint as bad as it seems with all this medical crap we face. I've found that life is pretty much what you make of it.
We just need a little more coping skills than 'Normals'.
You can do it Girl.
Take care, stay in touch OK?

 

[BikerEd]

Yeah, totally can relate to Pat. Don't pay attention to "dates"

 

[marcijo]

I agree-you need to go to a CF center and get your mutations figured out ASAP. The new drug Kalydeco is amazing! Hang in there-it's tough being a mom and having CF.

 

[AUG19DW]

Yes my daughter was 11 when we had her tested because my son tested positive. We thought she just had asthma but thought wrong. Her PFT's were 70 at the beginning but with meds. and the vest and all she is up to 99 now. She is now 16 and has been in the hospital about once a year average mainly either a tune-up or phenomia. She is trying to get used to all of this and always says it isnt fair and gives me the hardest time about doing her meds. I wish I had known when she was little that way it would have been a part of her life allready doing the meds. Trying to start later in life at 11 or a teenager is soo hard. No she shows no symptoms of pancreatitis and she does not use enzymes yet. She does have some digestive issues because she can eat 3 bites of something and is completely full but she is overweight. She hardly eats anything so I am surprised she is obese. She is 5'2" and weights 170 lbs. Very ususual for CF but so is my son as far as how bad his pancreatitis got. I just have unusual kids! Lol!! My son is having some issues again in which he is running fevers, and nautious and vomiting. The GI's are trying to figure it out again but he has always been a "stumper case" so it has been a year now and cannot figure it out. Trying to find a GI that actually gives a crap and will go above and beyond is hard to find. But as soon as we find one maybe they can figure him out again. He even had a seizure the other night and it is from the Tramadol he is on for the pain he still gets for the past year. He was doing great for 2 years after teh TP/IAT but then new symptoms started. He takes 6 enzymes with meals and 2 with snacks and that is it except for the Tramadol which I hope they take him off of. It did take him 1 yr. to wean off all the narcotics after the TP/IAT because all the other dr.'s didnt know what to do with him so they just kept feeding him narcotics. He was even on a Morphine drop pump and after that didnt work anymore and the pills didnt work anymore then a Dilaudid pump and then on to Fentanyl lollipops (like cancer patients use). He was 15 when I had to pull him out of school. He could not do anything from being in pain 24/7 for 2 years straight!! When he finally became pain free he went to get his GED because he was 18 at the time and too late to go back to high school. He missed the best years of his life in high school! But no my daughter with only the lung issues is in no way as bad as my son was or is and I hope to never be. His lungs are great. And he never does the vest or the neb except when he is sick. Pretty weird and I dont get it. I hate to say this but the lung issues arent even close to the Pancreatitis in CF. He probably had over 150 E.R. visits and maybe 15-20 hospitalizations and 6 procedures and 2 surgeries and our med. bills were outrageos. We claimed on taxes one year $19,000 for flights to Minnesota and everything else and the next year $12,000 then it kept going somewhat down from there. But I am only paying on one kid now and my son is paying his own bills. Girl sometimes I am just at my wits end and dont what else to do. Gets very frustrating.

 

[urmysunshine54]

Danielle - my heart and my prayers go out to you. I was just diagnosed this January (I'm in my 50's). I have a wonderful husband and 2 amazing kids that had witnessed my downward spiral. I've had similar experiences to those that have been diagnosed later in life...and your situation sounds exceptionally difficult. I just have a couple of things I'd like to share - please use this forum...it was my lifeline as I began to cope with the cf diagnosis. I've never known anyone that has CF - and given there are no face-to-face support groups...this website has helped lift my spirits, answered my questions (and sometimes I was sure that my questions were kind of 'dumb'), and provided a tremendous amount of support. As wonderful as I'm sure your friends and family are, it always helps to share experiences with people that are dealing with CF every day. Another positive note...I found a wonderful CF clinic and have not had an exascerbation for almost 3 months now. We are here for you - and wish you all the very best...with all our hearts. You are so courageous! Susan