carolk2222

There is a really helpful group on facebook called Longterm Hodgkin's survivors, only 171 members. You had to be initially diagnosed 1960-2000. I hope you are well my friend.
Darrell Loggins

Hi carol
Haven't been on here in a while, wondering how you were doing.
I don't get on here much, hit me up on facebook if you're on there. I'd love to hear from you.
Darrell Loggins

Hi Carol
Thanks for the interest. My journey has been long and I will fill you in on the details. At this moment I do not have the time to write it all but in the next couple days I will tell you my story. I would also like to her yours also. I just got on this board a few days ago to see if there were other long term suvivors out there like me having all these problems and I have found there is.
Congrats on 32yrs I find that uplifting to see.
Darrell Loggins

I was diagnosed in 86', stage III, Exploratory Lap, MOPP, and radiation from jawline to waist. Relapsed in 89' and had 6wks course of chemo followed by Bone Marrow Transplant. Remission ever since.
One basal cell carcinoma removed from eyelid in 2006.
I'm afraid now my shortness of breath is due to my aortic and mitral valves leaking but not serious enough to have surgery yet.

I failed to mention I also have nodules on my thyroid that I go to MD Anderson once a yr to have a ultrasound and they have needle biopsied a couple times but it keeps coming back benign. I do take Levothyrozine for it.

In 96 I started working as a Respiratory Therapist after several yr following pipelines all over the USA. My family profession. Everything was going well I got married to a nurse and had my son(which we were both shocked because of the treatments) in 2001.

In 2002 I came very close to passing out in gym one day and thought it was just a freaky coincidence. Went back the next day and the same thing happened again. I immediatly went to the hospital were i worked and a buddy of mine did a EKG on me. There was so many diagnosis on the print out, but the main one that scared me was complete heart block.

Ten days later I was getting a pacemaker implanted and the dr had diagnosed me with CHF, and chemo induced cardiomyopathy. I was flabergasted it happened so fast.

The following yr I had multiple bouts with pleural effusions treated with steriods and had to have them drained on several occasions. Eventually they cleared up and I had a yr or so of decent health. Then 2004 I caught epstein-barr and it got in my bone marrow. Physicians in my small town of Lufkin(35K) could not figure out what i had. I went 3 wks being given 80mg prednisone daily and my platelet count was ranging from 3k-5k(normal 150k-400k). I was recieving injections to increas them but that's as high as they would go. I felt unbelievably bad. I was beginning to think this was gonna seriously take me out!

I had been going to my bi-yearly checkup at MD Anderson still. Me and my wife finally decided to call my BMT dr( he still followed me since 89). He got me in for tests the next day on a friday and they called me monday and gave me the diagnosis. They treated me for it there. Pic-line, all day iv's once a week for 3months.

Ok, another good yr of good health. In 2005 I was at work one evening and i started getting chills and uncontrollable shaking, went down to ER. Did full workup, cultures came back positive in 8hours!! I was septic. 2 week stay in hospital. No explanation of why this happened. I'll skip ahead a little cause this very same thing happened again in 2014.

Hey 2006 was a good yr!! In 2007 had to be admitted 3 times for long courses of antibiotics for a recurring Haemophilus Influenzae that kept coming back. My BMT dr had told me ever since I had caught the epstein-barr virus that It was not a good idea for me to work in a hospital(especially seeing the types of pts that I saw being an RT). I walked away from my job after 12yrs. It was very hard, they had been so good to me and kept my position as supervisor over my department through all the missed work since 2002.

In 2008 I had to upgrade to a bi-ventricular pacemaker because of the continueing deteriation of my electrical function of the heart.

Then I had 4 yrs of good health interrupted occasionally by short stays in the hospital for pneumonia( 3times). I also started having food hanging up in the back of my throat and the good dr in lufkin told me to drink more water(WTF). Anyway I just deal with it to this day, very careful when eating.

In 2009 I went to work for my cousin who owned a Plumbing company as a commercial estimator. I worked 4yrs for him until my wife got an incredible offer to work in the Texas Medical Center of Houston as a Kidney Transplant Coordinator.

We moved and I just took it easy lol cooked, cleaned, our son was 11 so I got more involved in him(coaching teams..ect.) Worked out, felt really good for a yr after we moved. I aslo started having real bad neck pain. When to an orthopedic dr and he gave me a cortizone injection and sent me to a couple months of physical therapy to strenghten the neck muscle(very skinny neck to worked out so much). It hepled for a yr or so but it is back again.Then another bombshell dropped. This one was bad.

One morning i woke up with fever, sweating, joints hurting. I went to ER and one of my leads going into my heart had vegitation on it.(Streptococcus Pneumoniae) The whole ordeal was a 39 day stay in the hospital and six weeks of daily antibiotics with pic-line after that.

While i was in the hospital for that I developed atrial flutter and had to have the ablasion surgery for it.

While placing the new leads in i developed 2 clots in heart and they had to stop w/out placing my left ventricle lead. I went 9months on blood thinners till the clots dissolved and no threat from it before they placed the other lead in July/14'. I felt absolutely miserable and fatigued the whole time unable to walk a flight of stairs without getting winded.

I've felt really great for the past yr(been working out since Jan) until about a month ago. After getting really sick I just have not felt like doing anything, get winded just doing everyday activities. Waiting on resuts of latest ECHO and stress test done last week. Dr said he heard a mumor(new) on aortic valve.

Cathy,
I just read down your wall. I'm also friends with Erik1059. I connected with him on cancer compass a few days ago. I'm gonna copy and paste a little of my history i shared with him.
Darrell

Hi carol,
I am in a highlight story in the blog section

The Fibrosis has not had a big impact on my job yet. I am a engineer, so I spend most of my time at my desk. While sitting, I always sit in a tilted back position so my head is in a neutral position, where it neither wants to fall forward or fall back. This way I preserve the strength in my neck for any other task. I would also say that I use this technique for almost everything like driving, standing, walking. I was diagnosed with dropped head, but I do not think that it is as severe as other patients yet. Sometimes when I am at home working around (like vacuuming) and looking down, I will wear a short soft collar to allow my head to rest while looking down. This collar is only about 1/2 as wide as a standard sott collar, I like it because it allows me to rotate my head easily and not push my chin up. If you are interested, I can give you the details on the collar. I also have a headmaster collar, which I do not use.

Thanks for your message Carol! Having faith is so important to get through any stages of life. Glad you know that God is on your side. No one fights alone! Congratulations on your remission Some challenges must be popping along the way, but you are obviously still here for a reason. Keep it up!!

Hi Carol, no, I didn't have any itching. That's interesting that you did. I have'nt heard that one before. Glad it stopped after you started radiation. I just had my annual follow up of blood work and chest x-ray last week. Doc says all if fine. But he is now asking all his former patients like me to have a colonoscopy every 4 or 5 years now. He recently had one like us that came up with colon cancer. I had one done 3 years ago, since we are in that age range to watch for that now. I also just started Levoxyl .50 mg for my thyroid, since it was radiated back then and now it is underproducing. Feeling good now though. Take care.

Greetings carolk2222:

A over 30 year survivor! So wonderful to hear. I'm lived in survivorship for over 25 years now. I have never know personally a fellow cancer survivor whose lived in survivorship as long, or longer than I.

Glen

Hi Carol, its Kathlene again I forgot to mention another deteriation I am experiencing for the past 4 years I have had lateral epicondylitis (tennis elbow) same side where I had radiation. My family doctors report was that in 10 years I'll be needing a new elbow and hip.

Hi Carol, I had Hodgkins 21 years ago @ 21yr of age and exactly 1 year later I was diagnosed with it again same place, it was in stage 3. I had chemo and bone marrow/stem cell transplant and radiation. I am a cancer survivor for 20 yrs. I have been suffering with pain in the neck and shoulder (the same side where I had radiation), my shoulder slopes and my neck drops. My family doctor prescribed me fluoxitine and morphine for the pain. I don't take morphine unless its really bad. I live in BC Canada so if you hear of new treatment please let me know.