Survived: Heart Transplant and Non-Hodgkins Lymphoma...Now what?

Other problems I've had related to my illness include loss of friends. A lot of the people I spent time with have turned out to be "fair weather" friends. I have so many short hospitalizations, CT Scans, PET Scans, clinic visits etc that when I'm not at some type of doctor's appt. I'm busy working or just exhausted. My friends have seemed to fade away as a result of my hectic life. It seems to be too painful for them to handle. Now is when I need them most and they're just not there. My wife and I are going through this horrible stuff and we both feel so alone. Even family (parents and sister) has stepped back. Now if it is not life-threatening or immediate-in your face issues, they don't seem interested. Every year I celebrate my new-heart birthday. This year my dad forgot it. It's now been three days and he still hasn't remembered.

Yes Granto please keep sharing so the rest can learn from you experiences, I lost my mom to brain cancer in '81 & I too am from CA originally. Am glad to hear that you are doing well physically & hate that the back lash of the economic garbage could cause harm to you emotionally. We hear for you & listening.

April

Granto;
Praise the Lord for your cancer free body you now have!!! I hope that you and your wife appreciates the gift that God gave you both. Watch out for perscription drugs because a lot of times when a person takes those,the drugs will give you more problems than you started out with.
I have always heard that you will know who your true friends are in times like you have been through. A true friend will be there for you in BAD times as well as good times. The fake friends are a dime a dozen, when true friends are rare.
Best wishes to you and yours and always remember that Jesus Loves you!!!
Marie

Granto,
You are an inspiration to me. I am just starting treatment and have heart issues too. I have a pacemaker and 2 bad heart valves. My doctor is concerned because of the chemo. I have several other serious health issues as well. It's different when you just have one diagnosis and I am not saying that having cancer is bad enough but having more to worry about takes a tole. Yes on finances, marriage and friends. I have learned who my true friends are and my husband is wonderful but it is taking a tole. I sometimes forget how stressed HE is. And how it would be if the shoe was on the other foot. It's hard to think when your caught up on just surviving when you feel like crap. You have more strength than you think you have and you are allowed to have bad days...don't beat yourself up over it. Most of my help has come from my faith. That is where I have met my wonderful friends who have really stuck by me. Other ones I have had in my life always left if I didn't have anything to offer. Talk to God He listens....

Hey Grant,

I too have experienced the pain of major illness. Despite being a strong, independent and healthy 19 year old in 2006 I was diagnosed with Acute Lymphoblastic Leukemia. There was no known cause, it just happened.

At the time I had just started my medical science degree, had a part time job at a supermarket, rent to pay and a very active social life. I had to leave my life behind to begin 26 months of chemotherapy, lumbar punctures, radiation and any test you can think of.

Luckily I was in remission from the first month of treatment and stayed that way. I did very well from that perspective. However it isolated me in many ways. Only one friend of mine was actually there for me he would see me every single week no matter what. Whether is was to talk to me in hospital or take me to the movies. Everyone else seemed to evaporate. My mother was there some of the time as well but her life was very stressful and she wasn't coping with her daughter being unwell. My father died when I was 10 of a heart condition.

Unfortunately for me due to prednisolone a steroid I was on as part of my treatment, I developed avascular necrosis an incredibly rare condition where both my hips/femoral heads lost blood supply. Basically this meant that over the course of a year both my hips broke down and I was in a wheelchair for a little while. This was devastating to me as when I got the diagnosis I was nearing the end of chemo and back into study pushing forward to the future. As my hips got worse I had to stop uni again for a semester as I couldn't think with all the pain and pain medication. I had to have both my hips replaced in November of 2008. I made sure I was walking again and straight back to uni 4 months after surgery. So I could again run away from illness and back to life.

During my chemo and during my loss of mobility I threw myself into my degree. For me it symbolized my future and my life. I've done very well, top marks in fact. No one would know from looking at me that I have been sick but now in the last few weeks of my degree my emotions and pain have set in. I'm almost 24. I am a different person. The emotional pain and trauma has finally caught up with me. I don't trust people like I used to because I know few can cope when things get tough. I don't care about my degree anymore and I don't want to work in the field. I'm depressed and it is hard for me as a perfectionist not to have any answers or an obvious way forward. I've decided to take a year out of stress, take a simple job and figure out who the hell I am now. I realize that if I don't deal with this pain now it will only come back to haunt me later.

What people don't understand is that there is so much more to surviving than just not dying. When confronted by death questions arise that no one else wants to think about. Illness gives you wisdom through the acceptance of what has happened but in a highly superficial and materialistic world few who don't have to want to think about it.

I don't know if anything I've said is helpful but I just wanted to share my story. I wish you the very best in your recovery medically and otherwise.

-Stacey

Wednesday morning I sat in my doctor's office to hear the
words LYMPHOMA. Tests are not complete and the only other
thing I have found out is Large B cell lymphoma. This is
a preliminary diagnosis. Can someone help me out with what this means?

nannyinkentucky

Hey Nanny welcome, would be wise to seek out Ross, hes the best here w/loads of information & advice.

My thoughts are w/you.

April

Hi Nanny...I am so sorry but now you have a partner me. I have Diffused Large B Cell as well and I am still learning. Ross has given us great info and I would definatley seek him out but I will tell you what I know so far. It's aggressive and it supposedly one of the most common and most treatable. The next step is to find out what stage you are at and that means a biopsy of some kind. They will also consider if you have had symptoms. This all makes a huge difference. How was yours found? Also how old you are and what your general health is. Even if you are in a later stage...which I am, they say it is very treatable. The important thing is that since it is aggressive is that they don't drag their feet and act fast. Also a second opinion is a must...preferably at a major cancer center. Your doc should be ok with this as it is pretty normal to do this. Keep in touch we will all try to help you. a great support group is very good to have both at home and the internet... Blessings Lori